Ceci's Climb

Two Years Later

2011-12-22T23:58:00.000-07:00

I had THE most amazing trip to New York City thanks to Make A Wish, Macy's, and The Early Show. I can't wait to tell you all about it (in detail), but first I wanted to tell you about my messy kitchen.

It's 1:30 am and I just finished making fudge. Let's just say it seemed like everything that could have went wrong did. I decided to make a double batch, but I used too small of a pan. It took so long to boil, and then when it did start boiling it bubbled over and was going everywhere. You know how good burnt sugar smells, right? So, mid boil I have to switch pans. I also had to unwrap my sticks of butter and ingredients while continuously stirring, my arm was aching. I was determined not to burn it. Anyway, I was annoyed, trying to think of a way to explain to my Mom why her kitchen looked like this when I got a text message. My Mom had text me "Happy Birthday!" I had completely forgotten. When you have a transplant they consider the day of your transplant to be your second birthday because it's your second chance at life; a new beginning. I had my transplant two years ago today.

I have been a little aggravated about my medical situation since I got back from New York. Everything surrounding school and raising awareness has been amazing, but I am struggling with graft vs. host disease. I've tried tapering my medication four times and it feels never ending. One unsuccessful taper and flare of GVHD after the other. It feels like taking a step back when I am so ready to move forward. I am always thankful, but somewhere along the way I got caught up in my "messy kitchen" of life and forgot that regardless of the GVHD, I wake up every morning and get to live my life. Two years ago, I didn't know if I would make it to be 18, if I'd get to go to college, or even if my hair would grow back!

And today, here I am, sitting in a messy kitchen with short brown hair thanking God for the past two years of miracles.

Also, I want to say thank you all for your continuous love, prayers, and support over the past few years. You have been by my side every step of the way.

Thanksgiving Hope

2011-12-02T23:39:00.003-07:00

The new medication ExJade makes me feel poorly. It hurts my stomach, gives me headaches, and makes me nauseous. Sounds like fun, right? We have backed down on the dose and kept a close eye on my counts.

It’s like I’ve started falling out of that good place I’ve been in. I was supposed to go visit Uncle Rick and Aunt Ro this Thanksgiving, but had to cancel plans because my hemoglobin dropped. Apparently, high cabin pressure and low hemoglobin are a nasty combination, so we stayed home instead. I’m tired, not feeling well, and bored. Allan has been so sweet. He has kept me entertained and laughing, renting movies, and watching TV marathons. However; it doesn’t make me forget what I was supposed to be doing or how I feel. I spent Thanksgiving day in my pajamas and Chelsea an Lexi were so kind to bring the feast to me.

I was flipping through a magazine and found an article about a man who had a transplant in 2010; since then he’s opened a fitness center, got engaged, was on the Amazing Race, training for a marathon, is tan and healthy, and has long curly hair. As I lay in bed single, weak, pale, short haired, and feeling poorly, I can’t help but wonder, why? Am I doing something wrong? I’m not saying I want to be engaged or on the Amazing Race, and everyone knows I will never be tan, but I just can’t help but feel like it’s my fault sometimes. I should mention he relapsed, so I’m so grateful to be where I am, instead of in his shoes, but it’s been a hard few days.

This Thanksgiving, I feel like I’ve lost my way a little. The list of the things I am thankful for is never ending. It includes family, friends, faith, life, and laughter, but at the same time I’m disappointed and in pain. It leaves me feeling kind of like a turkey that was shot at, but survived. I’m hobbling along wounded and tired, but mostly thankful that I’ll live to see another year.

However, the long week is behind me and I am surrounded by amazing people who cheer me up. Please watch this beautiful video Allan made. It started out as a school project and turned into so much more…things are looking HOPEFUL.

Where I Used to Be

2011-11-07T18:08:00.000-07:00

Well, I have THE best news ever. I do not have MDS! All of the results eventually came back. It was the best birthday present! But the party we had was a close second. The weekend before my birthday we had a 18^th birthday/GED celebration at Gerber Gardens. It was truly a celebration of life, friends, and family. Thank you so much to everyone who helped or attended. It was more than I could ever imagine. I do have to admit, it took me awhile to recover, but it was worth it. Family from Oklahoma, Kansas City, and Connecticut even flew in to attend! I was so surprised. We had a cake, cupcakes, candy, cake pops, dinner, music, purple and cream décor, flowers, etc. I felt so special and loved. Again, thank you to everyone involved.

I am still going to Mayo to receive treatment twice a week every other week, and to Phoenix Children's twice a week every other week. So, typically I spend two days a week at some form of a hospital. Compared to being there all of the time, I am thrilled with this new normal. I have reached the point where I am living my life and thoroughly enjoying it; school, friends, public places, and more! I even went to New York and visited Columbia University and New York University! There are still some stipulations, but most of them I have tried to disregard. I have not gotten sick so far, so I am going to keep going with this theory. I have learned in the medical world asking for forgiveness is much
easier than asking for permission.

I am still on heavy doses of immune suppression. My body is so dependent on medication it frightens me. They are considering tapering on either the dose of Cyclosporine or the amount of Photopheresis I receive. The taper process would take up to December 2012. If we chose to taper the Cyclosprine we would drop in small increments every three months, depending of how my body reacts. If we chose the ECP, we would go to treatment twice a month, instead of four times a month. Although I am emotionally ready, I don’t know that I am physically ready for a drop in ECP, my flexibility in my fascia has improved, but it’s not 100% and the idea of stopping something before it has fully worked scares me. The doctors will make the final decision, but there is no right answer. That is the most difficult part for me as a patient. A lot of the decisions are judgment based; and like life, everyone has there own ideas of what’s best.

Physically I have been tired and sluggish this week (if only I had a dollar for every time I’ve said that). My hemoglobin continues to stay between 8.5-9.5. It isn’t low enough to be transfused (Praise the Lord!), but it is enough to make me feel fatigued. I usually take a nap every day (sometimes two); so we are still searching for answers to the big fatigue mystery. I started a new medication called Exjade to remove the amount of iron in my system. When you receive so many transfusions, like I did, you become overloaded with iron; which isn’t good for your organs.

I love quotes and this one seems to sum up how I feel perfectly, “I might not have arrived where I want to be, but I damn sure left where I used to be.”-unknown

Preliminary Results

2011-10-04T11:26:00.000-07:00

I still don’t have a final report on the biopsy yet, but I figured it’s about time I share the preliminary results.

Two weeks ago, we got a call from Doctor Adams. My Mom’s face lit up and her voice rose in pitch as she said, “It’s the hospital!”, a number I have seen on my caller ID all too much. We were desperate for answers. It felt like Doctor Adams words were carrying my future. But we all know my future doesn’t rest in Doctor Adams vocal cords, but in God’s hands. My heart sank as I saw the words “fibrosis” in my Mom’s loose handwriting. Thoughts were racing through my head, they consisted of silly things like “If I have to do this over, I want a pain pump on Day number one”. They were tragic in the sense of “How could God let this happen to me, not once, but twice?”. Tears were streaming down my cheeks as my Mom hung the phone up. By now my Dad was standing next to us in the kitchen, and fear spread across his face as he saw mine was tear stained. We came to find out that I misread my mom’s notes. Doctor Adams report was that my marrow looked improved. Not normal by any means, but improved from the last two biopsies. My marrow is still scarred from the past and existing fibrosis.

Two days later the phone rang ; it was Doctor Adams again. She had one test back. It’s a test that determines the sex of your cells. Not to be confused with the Chimerism, which is a more detailed look into the make up of cells. She called knowing how we were on pins and needles to hear the results. I don’t have a single female cell. They are all Ryan. It leads them to believe Myelodysplastic Syndrome is NOT coming back. So, by blood, I am a boy! I never imagined I would write that sentence and be okay with it, but I am thrilled. Like I mentioned earlier, we don’t have the final results, but in the meantime we will enjoy this new found hope. And that called for a celebration, which I can’t wait to tell you all about!

Anesthesia Bliss

2011-09-08T22:50:00.005-07:00

The white corridor before the bliss.

Time is just flying by. I’ve been taking classes at Chandler Gilbert! I love it, but school and my full time job, being a patient, keeps me busy. Somehow I manage to fit a precious nap in everyday!

Medically, things have been confusing lately. My hemoglobin (red blood cell) level changes so drastically. One day I was at Phoenix Children’s and my hemoglobin was 10.2 and three hours later at Mayo Clinic it was 9.4. Typically hemoglobin doesn't fluctuate that much within a day, and definitely not within a few hours (unless you are bleeding). They think it was possibly a lab error. Not very reassuring, considering I had a transplant based on these labs! This is where I would laugh nervously and try to pass my comment as a joke, but underneath every joke lies a morsel of truth. Anyways, we are trying to get to the bottom of it. I am having a bone marrow biopsy tomorrow morning, at 8am. I am excited for two reasons. Number one, a biopsy is a much better evaluation of what’s going on inside my marrow. And number two, I love anesthesia. There is something scary about waving goodbye to your parents as they wheel you down this white corridor. I pray as they wheel me into the sterilized room with bright paintings on the walls. It reeks of antiseptic and they play pop music over the loudspeaker. There is a tiny white bed in the middle that appears to be covered in bubble wrap. Machines are beeping and purring on each side of me. They move me to the bed and begin to draw labs and apply the heart monitor stickers. They check my wrist band and hook me up to IV fluids, blood pressure cuff, O2 Sat, and every medical machine you can imagine. The room is eerily cold as the doctors attempt small talk, “Where do you go to school? Have you had a biopsy before? etc”. And finally they take a pink and clear muzzle looking contraption and cover my mouth. He tells me he’s giving me the sedative laced with ketamine and I peacefully drift off to sleep unlike my usual fight to get to sleep every night. Everyone thinks I’m so weird and my Mom claims I will be addicted to it soon. But, at least I am excited about a part of the procedure considering I am going to be jabbed in my right hip with a large needle.

It’s scary feeling like I’m in the same situation I was 2 years ago. Each appointment I anxiously wait to hear what my hemoglobin level is praying that my counts will miraculously improve. However; this time around I am in such a better place mentally, physically, medically, and spiritually. Finally, I have learned that worrying won’t change it. “Peace I leave with you, my peace I give you. I give to you not as the world gives. Do not let your heart be troubled and do not be afraid.”-John 14:27

*I promise I will update you soon about all of the the exciting things happening like SAT tests, college, and my 18th birthday!

Where I'm At

2011-07-24T23:41:00.002-07:00


Photo by Annie Gerber Photography

For the first time in a long time, I feel like I'm in a good place. I am being honest in saying that. But I'm also going to be honest in saying that I went through A LOT to be able to get to this point.

In the last several months, I've been overwhelmed with emotions I felt incapable of handling. In the moment I struggled to process my feelings, and was dumbfounded at the thought of sharing them publicly. I started writing for myself which is something I had stopped doing. At the time, each journal entry seemed so harsh and miserable. However; that was my reality. Looking back I realize there would have been nothing wrong in sharing that.

So, I will share some of them right now: I dread taking my pills every night; I put it off for hours. I resent getting infusions at clinic. For months I cried myself to sleep after finally getting my thoughts to slow down. When I see pictures of friends swimming or at the lake, I get jealous. I go to bed attached to tubes every other night that make it impossible to get a good nights sleep. I feel useless on days that I have no energy to help. I feel so alone some nights. In my right chest I have a Broviac and a port in my left; the lines make me feel abused and fragile some days (not to mention how difficult it is accessorizing them).

I'm sharing these with you not to make you feel sorry for me. I am sharing them with you to tell you that I struggle. Days rarely come easy. I fight with my emotions constantly. I've had to learn to embrace them in order to overcome them. I finally realized that it's okay to be vulnerable, raw, and honest. But most importantly I'm sharing this with you because I finally feel strong enough to say I made it through all of them.

I started a new treatment at Mayo Clinic to help my Chronic Graft vs. Host Disease. A quick biology refresher, GVHD is a side effect of the transplant. Basically it means Ryan(Graft) and I(host) are still butting heads inside my body. (Really, who is surprised at that! We are brother and sister; isn't that what we are supposed to do?) I was sent to Mayo Clinic to receive treatment called Extracorporeal Photopherecis (ECP). ECP is a process in which my blood is taken out in 4-6 cycles. In each cycle my blood is filtered, a portion is set aside, and the remaining blood is replaced. After the last cycle they take the portion of cells they had set aside, mix it with a medication called Psoralen, filter it under UV lights, and return it to mu body. The combination of the Psoralen and the UV light triggers something in my cells to teach my lymphocytes to recognize good cells vs. bad cells. It is a process that even doctors understand completely, but it has promising success rates. It is an eighteen month treatment. For the first month, I went twice a week, every week. For the next five months I will go two days a week, every other week. A port (permanent IV) was placed because the flow of my Broviac was not strong enough. Each treatment takes about four hours. I visit Phoenix Children's every other week for simple check up's and the occasional infusion depending on my counts.

Now for the good stuff! You probably won't believe me when I tell you all that I have gotten to do in these past few months! Three trips, two concerts, and lots of hanging with friends. For the first time, I have a normal hair cut, I got my GED, I enrolled in college, and I was the ambassador for a marrow drive at PCH and Mayo. I go into grocery stores (as long as they aren't overcrowded), I eat out (probably more than I'm supposed to, sorry Doctor Douglas), and I actually have energy.

Somehow I had this illusion that when I was "healthy" again everything would go back to normal. My hair would grow back, my Broviac would be gone, and it would be like I never left. Boy, was I wrong! However; I am starting to get my life back, it's not the one I left behind two years ago, it's better. It fits who I am right now, in this moment. And it feels absolutely incredible.

Finally I want to finish with an experience I had the other day. It was a moment of clarity for me and I hope it will help you understand where I am at as well. I was trying to escape a dust storm by wearing a mask and hiding in the bathroom; I was frustrated and worried. Someone asked me, "So is this how you are supposed to do it when you have a transplant?". My answer was the only one I could think of, "I don't know. I've never done this before. I'm doing the best I can." And that is exactly where I am at right now, doing the best I can in each moment. Living, not scared of what might happen, but excited at the prospect of what will.

Heartache & Hope

2011-03-15T00:47:00.000-07:00

Today has been a difficult one, and I don't think everything has completely sunk in yet. I had been planning to go on a spring break trip with a few friends. I was almost finished packing as we left for clinic this morning. We have become accustomed to clinic being a short activity. My labs have been stellar and we've had no need to linger at Phoenix Children's (which is a huge blessing in itself).

However, today, things shifted. Three doctors came in and examined me. I have lost flexibility in some parts of my body. I don't want to confuse you; I can stand, walk, and maybe even do a few a jumping jacks. Under the skin is something called fascia. Fascia is connective tissue that encompasses muscle. My fascia is very inflamed which causes me to lose flexibility near joints. It was small at first; only noticeable in my elbow and wrists. We thought we could maintain it with stretching twice daily and massage therapy. We even increased my Cyclosporine a week ago to try and contain it. However; today, as we evaluated my body, there was a significant decrease in flexibility. It has spread to my shoulders, calves, thighs, palms, fingers, and feet. My team of doctors decided they wanted to take immediate action by adding another immune suppression and three day bursts of high dose steroids. (Feel free to groan here.)

The mature, strong part of me sat, listened, and asked questions to the best of my ability as they told me the plan. I had gone from beach house to a PCH couch in seconds. From the beginning, I had never liked the idea of "maintaining". If we could improve it, why in the world would we wait? So from that standpoint I understand and completely agree. But I am human. I cried out for patience, found myself angry, and then overwhelmed with disappointment. I am very unsure of how this next step in my journey will unfold (and even more uncertain of how long it will take). It seems like nothing in the medical world surprises me. Tired of being disappointed constantly; I am afraid to cling to things anymore. Nevertheless, I would much rather hope for something and get hurt than have no hope at all. Hope is one thing that my medical condition cannot take away from me. Hope that I can inspire, hope that I can make a difference, hope in my future, and hope in Jesus.

Oh, and my doctor gave me a script for massages twice a week. BEST IDEA EVER.

The Road Not Taken

2011-02-20T23:57:00.008-07:00

I’ve been really overwhelmed with things lately. My battle with GVHD has only just begun. I got news that I would be on Cyclosporine for at least another year. As we sat down with the doctors, I held back tears, “When would this end?”. I tried to hide my dissatisfaction as they poked at me with questions, “What’s going on with you? , What do you think?, What do you want to do next?”. My answers were far from my usually bubbly and facetious personality.

We continued to talk about a few things I wanted: to go to Hawaii (Broviac not included), to visit Allan, and more freedoms. We changed my nightly fluid schedule to every other day with increased amount of magnesium. The simplicity of being able to lay in bed not connected to fluids is wonderful. It makes me happy. However; in order to do so, I have to drink 60 ounces a day (something I never felt motivated to do). I reminded the doctors if I could have Starbucks, I would be more likely to reach my goal. They approved! I’ve had four this week. They also said I could go to a Bible Study with some friends as long as I wear my mask.

I was supposed to go see Allan this weekend. However; Ryan introduced me to the magnificent sport of golf. He golfed ten holes while I drove the cart and kept score. I ended up golfing three holes as well. I was shocked at how much I enjoyed it. I also had more energy than expected. I would follow him to the green, hit a few balls on the driving range, and decided for extra exercise I would do lunges back to the cart. Looking back, the idea about the lunges puzzles me, but I felt so cheerful. I wasn’t feeling quite so energetic the next day, and decided I would be pushing my body too much to take a trip.

It was a gorgeous day at the golf course.

Another new thing for me; I decided I wanted to exercise more. The only restrictions the doctors had were that I don’t do anything to bother my Broviac or get my heart beating too quickly. Besides that, exercising is encouraged. It is good for my muscles, bones, and both my physical and emotional well being. One night I did five crunches and lifted two pound dumbbells. At first, I was angry, because two years ago, I could do 250 crunches a night. But I realized; I have to start looking forward. Looking at the past and what was normal only makes me angry; it doesn’t change anything. Normalcy is relative anyways. For now, my normal is two pound dumbbells, and I am choosing to embrace that. Well, trying at least.

Finally, my big news. I have been thinking, praying, and crying over what to do with school for a few months now. I am eager to share that I will be getting my GED. As much as I will miss my “high school experience” I am ready to move forward.I’ve already been invited to prom (Chelsea, I accept) and the universities I will be applying to into 2012 all accept the GED. Thankfully with the education I've received I have a good foundation to build on.

I know getting a GED isn’t usually encouraged, but for me, it feels right. It is still strange to me, because high school wasn’t a fantasy of mine as a little girl; it was an expectation. In spite of that expectation, I am learning that everyone takes their own path. Like Robert Frost so eloquently wrote, “Two roads diverged in a wood, and I took the one less traveled by, And that has made all the difference.”

Breanna

2011-01-31T01:18:00.002-07:00

Medically, I am dealing with some GVHD (oh, stubborn Ryan). Allan is constantly reminding me his cells wouldn't have been so stubborn. I am still on a high dose of Cyclosporine (immune suppression). I feel busy, but I have to take time to rest in between each thing I do. I have also been trying to make some decisions about the future. It's overwhelming at times, but mostly exciting.

A few months ago, I was going to get together with a thirteen-year old girl who was about to have a transplant. I put it off time and time again. What was I going to tell her? The next year was going to be heartbreaking and painful? Surely, I couldn’t lie to her and tell her they were a piece of cake. I finally sent an e-mail. I never heard back from her. However, a few days ago I got an e-mail from a friend letting me know that Breanna was no longer strong enough to receive her transplant. My Mom and I sat down and cried and prayed. How could this beautiful thirteen-year old girl be forced to face these challenges?

Lately, I’ve been struggling with decisions for the future. I have been so frustrated that I have to make decisions based on my medical circumstance. Honestly, I’ve been feeling bad for myself. My Mom would ask me a question and I’d say “Put yourself in my shoes.” Well, today I am taking my own advice. I am putting myself in Breanna’s shoes. I am sure Breanna would jump for joy at the thought of making a decision about college.

As selfish as it is, I really struggled with whether or not to share Breanna's story. It is hard for me to hear about all of the pain of the cancer world; it seems to be everywhere I turn. It brings back the fear of MDS. But I realized that hearing the word "cancer" shouldn't scare me. Instead, it should inspire me to do everything in my power to help someone else beat it. In honor of Breanna, let's try to worry a little less and live a little more. Please pray for Breanna and don't forget you can help someone "beat it" too. Join the National Marrow Donor Program by clicking HERE.

Swaying

2011-01-13T00:06:00.002-07:00

It feels like a millenium since I have posted a blog! I love my blog and how it connects me with those of you reading, but there are times I feel like a chocolate mess; incapable of telling you how I feel. With that said, there is no excuse to leave you hanging. I want to update you where I left off...

The day after my biopsy I got a fever and was admitted. We also got news that the preliminary resutls of the biopsy showed "signs of suppressed cell lines". I shrugged it off. I was already drowning in emotion after being admitted. Little did I know everyone around me was losing sleep; afraid the MDS was back. About a week later, we asked if the final results had come in. Dr. Adams used the words, "perfect biopsy". We burst into tears. There was some miscommunication the first time we heard the news. The confusion lied in the fact that my marrow had 30% cellularity. That basically means there aren't as many cells as there should be. However, I am on immune suppression. DUH! No wonder there were signs of suppression. The doctors said eventually my marrrow will have a higher cellularity, not necessarily a normal level, but extremely healthy for what I've gone through. Praise the Lord. It's like I can breathe again. MDS is no longer my biggest fear. It is just a reminder that anything is possible.

Christmas and New Years were wonderful. I got released from the hospital the night before Christmas Eve. My family from Oklahoma and Missouri came for a visit. Plus my dear Allan came home from college. Christmas is my favorite holiday. There wasn't a day without laughter, dancing, too many carbs, and music. This year was special in the fact that one short year ago I was inside room 203 at Phoenix Children's Hospital receiving a second chance at life. It was also our first Christmas without my Granpda. It was a season full of gratitude, remembrance, and love.

I have been dealing with a lot of anger and resentment. I struggle with questions like "Why isn't this over?", "Why am I still in pain?", and a million others. I feel so guilty when I think how little my pain is compared to those who have lost their loved ones. However, I am learning that pain is pain, and in order to move on I have to embrace it. When I feel vulnerable, I turn away from my friends and family. I shut the world out and try and process it alone for fear of being weak. Each time I find that sometimes being strong means letting yourself feel vulnerable. No one can do it alone. (I hope this explains the unanswered texts, voicemails, and Facebook messages.) I could go from smiling to crying in an instant. I never expected the days after my transplant would be the most difficult. One day, I was fed up and I went shopping (masked of course). It was silly and rebellious. I loved every minute of it. All along, I've been waiting for everything to return to "normal". However, I am learning that we each take our own path and that there is beauty in each moment. "Life is not about waiting for the storm to pass, it's about learning to dance in the rain."

Here I am, swaying to the music.

Faith

2010-12-19T17:26:00.001-07:00

I have a favor to ask. A lovely woman, named Kelly, is about to have a transplant. She is "climbing" too. Your prayers are both needed and appreciated. If you want to learn more about Kelly click here to read her blog.

Tomorrow, I'll be laying down; sipping on a cocktail. A medical cocktail that is. I have a biopsy. It is for my one year work up. As I think about another biopsy I get butterflies. Getting a biopsy is a very familiar yet scary road. The only biopsies I've had have shown cancerous blasts and fibrosis. But there is a first for everything. This will be my first clean biopsy in two years. Please join me in praying for those exact words to come out of the doctor's mouth.

At first I cringe, thinking this biopsy could contain bad results, but then I realize it will just be more proof of the the miracle God gave me. I will be honest, I am anxious, but not scared. I have more faith in God than I do MDS.

Day by Day

2010-12-12T22:53:00.001-07:00

Two weeks ago, I had to be at clinic to receive IVIG and I started feeling the side effects about a 1/4 of the way into the infusion. It was a complete mess. I felt so frustrated. I was sitting in the glass room, crying, uncomfortable, drowsy, and vomiting. I wanted to be anywhere else than sitting in the purple recliner, hooked up to an IV, and feeling poorly. Last December, during transplant, I was in survival mode, and I pushed through the nausea and the pain. I told myself that I had to get through it and then it would be behind me for good.

Each time I find myself being treated at the hospital, whether it's an infusion, a shot, or a meeting with the doctors I feel angry. I resent that I have to sit in the room, feeling sick and everyone completely invading my business. I struggle with the fact that to this day, I am still dealing with the pain when I thought it would be long gone.

They stopped the infusion for about 10 minutes and decided it would be best to try it again. The doctor came into my room and said, "Okay, we will try it again, and then if you get nauseous, we will stop." She walked out of the room and I finally got the nerve to say what was on my mind. "I am sick of tired of being the test rat in this trial and error process." The doctors are so compassionate and I know it is there job, but when they say things like "Let's try it and we will deal with the side effects.", my heart aches. I love them and respect them, but honestly, I am the one who get nauseous and gets headaches. I am the one who has to deal with it. Sometimes the doctors are the ones who have to deal with my anger when they don't deserve it. (So, if you're my physician, I am sorry.) But I can't exactly yell at MDS.

In the beginning (March of 2009) I wanted to know every possible option and scenario. I would play the "what if" game…"What if my counts did this, would I need this? But what if my liver did this? Would I have to go through this?" At this point I am on a need to know basis. Have you ever heard the saying "ignorance is bliss"?

But, let's get to the good part...I was invited to the "Red Ornament Event" for Phoenix Children's. The hospitals largest donors would be there to watch as they lit the new building for the first time, performance by an 8 year old gospel singer, Rhema Marvanne, and a designer Christmas tree showcase. However; on Wednesday I was contacted by a publicist at Phoenix Children's, the guest speaker could no longer attend and they were hoping I could fill in. They asked if I could share my story, my Christmas traditions, and light the tower. The event was held outside and I was honored to be invited to speak. It was truly a blessing to be a part of it. I got a sneak peak inside the new hospital (before the doctors and nurses..na na na na na na), the Waltons of Walmart introduced me, and I got to thank the people who had funded the hospital that is such a big part of my life. They even asked me to flip the giant switch to turn the lights on the new 11 story hospital. On Friday night, you would have never known I had been so sick just three days earlier. I was wearing make-up, I was walking around(in heels), practicing my speech, laughing, smiling, and feeling so blessed. It was one of those nights that I couldn't stopping smiling. I was in awe of what this life had to offer. I had to really embraced the moment and the blessings that God has set in front of me. I looked back at all of the pain and the struggle to realize it was worth it all.

Part of my speech included flickering the lights on the Christmas tree in an attempt to get the patients who were currently hospitalized attention. It made me realize how far I'd come. In one year, I went from the girl in the hospital bed to the girl on stage lighting up a hospital that would change peoples lives forever; just like the old PCH has changed mine. I realized that I am a part of something much bigger than me.

Thanksgiving 2010

2010-11-25T23:55:00.004-07:00

This year Thanksgiving was different for my family and I. However; as I am learning, different doesn't mean bad. My Mom had to work today, Gamie was in Kansas City, and the boys are in Oklahoma. Dad tried to talk me into hiking or going out to eat. After a great debate I decided to cook. It was something I could finally do for my parents. I am exhausted. The theory was "go big or go home". Okay, so it wasn't "big" by any means, but it was for me (considering my specialty is "Easy Mac"). Christenson, party of three, was served green bean casserole, Hawaiian rolls, scalloped pineapple, stuffing, mashed potatoes and gravy, turkey, and chocolate peanut butter pie. It is probably the most I have done, in one day, since March of 2009. Anyways, as I mentioned last week, I have so much to be thankful for. As I prayed tonight, I was struggling to find the right words to express my gratitude. All I could come up with was, "Thank you for the gift of life". Look how far we've come.

I hope you had a very beautiful Thanksgiving. I am so thankful for all of you. Don't forget to click HERE and register to give someone the gift of life. You could help make their Thanksgiving 2011 the best ever.

What's Next?

2010-11-18T23:03:00.003-07:00

I finally reached a therapeutic level of Cyclosporine; actually I surpassed therapeutic. They ended up lowering my dose Tuesday. My liver was the largest factor in starting the immune suppression, and thankfully it has already improved greatly. My kidneys are still being affected and every once in a while you can see the GVHD on my skin. I've been chugging water again in an attempt to help my kidneys. Ryan and I have "water chugging contests". He can drink an entire bottle in the amount of time I can drink 4 oz.

We have a couple of projects going on around the house. We are redecorating the back porch so that I can have friends over in a germ free environment. Painting has been a fun project the last couple of days. Also, for my birthday I got a new bedspread and we are going to redecorate my bedroom! We are trying to figure out the best way to go about school and keeping me occupied.

Well, the past weeks have been extremely challenging. I tend to process things alone before I can talk about them. I went from "this isn't real", to angry, to confused, and finally a mess of emotions. I was overwhelmed and tired of another disappointment. I've been trying to keep busy and rest at the same time; which is not the best combination. Right now life just seems hard. I feel lost and sometimes bitter, but never hopeless. When I really dig deep, I realize that this holiday season I'll be surrounded by family, I have my health(almost), the greatest friends, I'll be in a warm home, and there will be food on the table. As much as I want to complain that I don't get to have a social life, a boyfriend, or a junior year; God's given me a lot to be thankful for.

It's Unofficial...

2010-11-02T23:37:00.001-07:00

Well, I jinxed myself. Not only did I end up at clinic this morning, but I ended up back on Cyclosporine. Two doctors and a nurse walked in and I jokingly said, "Okay, why is everyone in here? Are they trying to soften the blow?" only to find out it was true. My liver enzymes have increased and the GVHD has flared. No school in February, no Oklahoma trip, and more medication. I sat in the hospital parking lot praying for patience, screaming, hitting the steering wheel, and blaring the song "Firework" by Katy Perry. There is one lyric I cannot get out of my head, "Maybe all the doors are closed, so you could open one that leads you to the perfect road."

I've found myself joking and smiling a lot tonight. Maybe I'm scared or maybe I'm angry, but I'm still thankful. My life isn't over; my "teenage dream" is merely postponed. The sun will still shine in the morning and one day I will too.

It's Official...

2010-11-02T00:21:00.010-07:00

I am off of anti rejection medicine for good!!! I haven't taken a dose in 24 hours. Thank you God for the beautiful blessing. It seems like I have waited for this day for so long. It's finally here and I am thoroughly enjoying it! Everyone was asleep as I was taking my last dose so I made a sign to celebrate (as shown above). Three months until I am FREEEEEEEE (my immune system will be strong again). Just 90 short days until I get to hug each and every one of you.

I haven't been to clinic in over seven days! We have an appointment later this week. I just wanted to share the great news.

Love Always,
Ceci

P.S. In case you aren't aware, only 40% of people in need of a match receive the LIFE SAVING transplant they need. You could be a match and help save someone's life. Click HERE to learn more & sign up for the National Marrow Registry.

P.S.S. We just got a new cookbook. I'm really excited to start cooking more, but me in the kitchen? Could be dangerous.

Moving Forward.

2010-10-28T16:20:00.007-07:00

Well, I’m down to once a week clinic visits and soon to be every other week. It is my last week on Cyclosporine and they want to be sure my labs permit us to taper off completely.

I am also off of that yellow medicine I posted a picture of a while ago. Usually patients stay on this antibiotic longer, but it is affecting my liver so I don’t have to take it anymore!! Honestly, I think it is my liver doing my mouth a favor. Goodbye syringe of yellow grossness. I am also on a nightly infusion for only two hours!! I told my Mom going to bed without being hooked up to an IV seems so simple. It’s wonderful. Soon, I’ll be off completely and they will remove my Broviac. Oh, HAPPY DAY! Although it has been a complete blessing and help during my treatment, let’s be honest, it is not a very fashionable accessory. Maybe one day I’ll design patterned dressings, rompers instead of hospital gowns (where the back actually closes!!!), and cuter masks.

Well, I am back to the grind of school. Okay, not "grind" per say but I am in one online class. I will be returning back to school in January or February. We are trying to work out the right way to transition back into school. My goal is to graduate with my class in May of 2012. GHS has been amazing working with us to determine the best way to move forward. Chelsea’s little sister, Mackenzie, is three years behind us, and I love her, but I don’t want to graduate with her!!

I am so close to having free rein. I get to do more things, and the weather is cool enough that we can hang out outside without the fear of melting in the sun. Plus, I get to go to Oklahoma soon! I am so excited. I haven’t seen my family back there in a long time.

The combination of how far away I am for transplant (over 300 days), I’ll be off the Cyclosporine, and I’m 100% Ryan seems to be a winning one. Just this October, I’ve gone to an outdoor wedding, a surprise birthday party, a cancer support group, a church small group, shopping, and to the drive in movies. And the month isn’t even over yet. Everything I’ve done has been is small groups or outside since I still can’t be in crowds of people, but everything is falling into place.

Sometimes, I am stricter than the doctors are, and I am realizing I have to start living my life again. I feel like I’m learning to spread my wings. My family and I have to push each other sometimes. The fear of getting sick, the worry, and the frustration; it’s all there. I heard this saying I really liked while listening to a sermon online, “What you focus on is what you’re heading towards.” I am going to focus on the future, God, faith, hope, positivity, love, and living, and that is exactly where I intend to move towards. Obviously, I still have my down days, tears, anger, jealousy, and I have a right to feel those things, but those are merely passing by.

Just a reminder; it’s flu season! Click on the link below to find out how to minimize the spread of germs and proper hand washing techniques: HEALTHY HABITS.

Miracles

2010-10-16T02:00:00.003-07:00

I'm laying in bed resting. It has been a crazy week. For starters, my aunt and uncle are in town, I had a sleepover (not at PCH) for the first time in 19 months, my surprise birthday party (which deserves it's own blog), I'm going to an outdoor wedding tomorrow, I did homework today, and oh yeah, my chimerism is at 100% across the board!!! I am officially, for the first time in my life, 100% Ryan Paul Christenson. What crime should I commit first? All I would have to do is leave blood.. kidding!

Well, I survived my flu shot. The nurse walked in, she started talking, and I interrupted her, "excuse me, sorry, but i have a request...DO NOT let me see the needle." I'm strange, I know. But for the record, it was nothing. The anticipation is what I struggle with.

I am still working on my website with all of the Oprah pics. I am excited to showcase what fabulous people you are and how supportive everyone was. It meant so much to me.

Today is one of those days where I've just been in awe of the life I've been blessed with. On the way home from clinic my Mom and I belted out the lyrics to "The Climb" (nowhere near on pitch), but it was still beautiful. Another song kept coming to mind as well, the lyrics are "A chapter ending, but the story's only just begun." We are approaching the peak. We all know there is "always going to be another mountain", but we are so close. I can honestly say, the view is definitely worth it (and we aren't even at the top yet). Of course I still struggle, I have my days, okay, let's be honest, there are a lot of them. I worry; can I do this? Can I go here? Can I touch this? Can I eat this? It's a constant question that comes to mind...can I? Well, soon, there will be no question, "Yes, I can."

Each week, there is some word or phrase that I seem to overuse, one week it was "marvelous", another it was "I hear you. I see you.", this week it is "I believe in miracles." Believe in yourself, in your dreams, in the power of God, in love, and in miracles.

KTAR & BIRTHDAY

2010-10-07T19:48:00.000-07:00

I went MIA. I didn't answer texts, e-mails, or calls. I was anti-technology for about a week. I just rested after the 29th. I wanted to say thank you again! I am still on cloud nine about the "E-mail Oprah" campaign. I am currently working on putting all of the pics and video on the website, please e-mail me if you have any more pictures! I will let you know when it is up. Oprah hasn't called yet. I have faith she will call one of these days.

Thank you for all of the birthday love! Wednesday was great! My friend, Chelsey Smith, sang me "The Climb". She has an amazing voice. We had a very festive, pink and black birthday dinner at Gamie's. It was absolutely beautiful. Last but not least, my friend Melissa, cut off 18 inches of her hair and donated it to Locks of Love in my honor. How special is that! If you click HERE you can watch the KTAR interview from Monday morning. They raised over one million dollars for Phoenix Children's Hospital, a hospital that has changed my life!

My labs are all good. Only four weeks left on the Cyclosporine! We are trying to get me off of the magnesium and nightly infusion as well. I am on a Caprisun kick and attempting to drink as many as I can! The sooner we get off the Cyclosporine, the less I need the Magnesium, which means I don't need the nightly infusion, and finally results in removal of my Broviac. I cannot wait for the day I can get in the shower without having to protect my Broviac. That is a beautiful thought.

I have to get a flu shot this week, you would think that after giving myself shots three times daily (for a month) I would be used to needles, but no. The boys used to make me this deal when I was little that if I wouldn't cry, they would give me $5. I said "ow" and they called the deal off. Ryan and Allan, you should be expecting a call from my lawyer soon.

I GOT A HAIRCUT!!! Okay, a trim. It just looks cleaner now. My hair is starting to have a wave. I'm not sure what to think about it yet, but I'll let you know.

O' Happy Day!

2010-09-30T00:09:00.001-07:00

I just want to start by saying thank you. I wish I could hug each and every one of you (I will soon). I will give you ALL of the details later, but I just wanted to fill you in!

Thank you for making today extraordinary. For so many months it has consistently been a struggle. It seemed like struggle consumed my life. Granted, there were always good things here and there that kept me going, but today I was reminded that good days are here again. Days full of more happiness than pain, and tears of joy, not sorrow. Today has made every single one of those hard days worth it. All I could do was smile and thank God for life itself.

Together, we have the power to do great things. I have yet to receive an e-mail or a call from Oprah, but wait till tomorrow when she opens her e-mail to 7,842 new messages about Ceci's Climb and the need for donors in the National Marrow Registry.

Thank you for inspiring me, for believing in me, for praying for me, for loving me, and thank you for joining me in my quest to raise awareness one e-mail at a time.

Love Always,
Ceci

E-mail Extravaganza

2010-09-29T00:03:00.004-07:00

I'm sitting here trying to think of something to write, and here is what is going through my head "AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!"

It's so surreal that it's actually here. E-mail Oprah day is today, September 29th. The love and excitement is overflowing. We have all worked together and made this possible. Thank you from the bottom of my heart.

But enough with the mushy stuff, we have e-mails to write!

WWW.EMAILOPRAH.ORG

Oprah Update!

2010-09-25T23:34:00.007-07:00

Okay, it's been CRAZY! In the exciting, happy, stressful, busy, thrilling kind of way. I wanted to post this video explaining the cause.

Also, there was a newspaper article out! So cool. Click here to check it out.

Plus, my amazing friends spoke about it at the pep assembly. This picture is so exciting! It makes it real. Look at all of those kids listening? If you're participating, don't forget to take pictures and videos!

Oh yeah, health. Hmm...it's good. It's great actually! I'm gaining strength. Thank you God! It's wonderful to say that I'm not as tired as I was a month ago. I'm most likely going to crash after the 29th, but it was absolutely worth it!

For those of you don't know (Michele) I have a website! If you want to learn more about my story, cause, how to join the registry, and more go to www.cecisclimb.com

People are posting it on Facebook, flyers are made, t-shirts on the way, it is so exciting! But I've had several people call, e-mail, or Facebook message me that they heard my story and not only will they e-mail Oprah, but they had ordered kits to join the registry. That is the ultimate goal, to find donors and we are doing it! We are doing it! There is no greater gift than life.

Photos, Fashion, & Fun

2010-09-19T13:19:00.012-07:00

Last week, Annie Gerber, the awesome photographer who took my bald shots, has done it again. She took some new pictures for us to use on the flyers, website, etc. You should check out her website, www.anniegerberphotography.com.

Other than lots of work on the campaign, I went over to Chelsea's house and made headbands. I also went to dinner for my friend Corinne's birthday. It was so fun, they had the prettiest little setup (outside for me). There were roses and candles.

I actually participated in activities. It is so much fun to be around people my age again. But it's still strange to me. It's great to be out and doing things. I'm so thankful to be able to even go to someone's house. But it also makes me kind of jealous. It's this flood of emotions. I'm sad because I don't get to all of the time. I'm angry because it feels like I should. I'm happy because I realize it will soon be me. I'm thankful I am still getting to do some activities. Then I feel guilty because there are kids who don't ever get that chance after having cancer. I know I have a lot to be thankful for (like being alive). Then I feel bad because I have to let myself be sad in order to truly be happy. Finally, I end up reading my Bible and listening to music and realize that I shouldn't worry. Okay, there's a look inside my head you probably didn't want.

Anyways, I've had a few small blackouts this week (when I say blackout I mean when I stand up too quickly I see black) which usually means my hemoglobin is low. But it's "Movin Along Monday" tomorrow and we should be tapering on the Cyclosporine and take care of that issue! It could also be the fact that they lowered the amount of fluids I'm receiving and I might be dehydrated. The doctors said that no one would be thirsty if they were getting 50 oz nightly like I was, so they went down to about 25oz. Yeah, still not thirsty. Who knows!

We are heading into week four of the taper. It seems like it is going by so slowly, yet I can't figure out where the time goes! Sometimes it feels like four days and sometimes it feels like four years! We are getting so close though. It's hard for me to wrap my head around the fact that, yes, it's actually happening. It makes me want to smile, cry, scream, jump, and pray all at the same time.

Guess what? Homecoming is this Saturday! Just like last year, I get to go to dinner! We will be eating at an outside restaurant. I have an excuse to dress up and wear high heels! Speaking of high heels, Ryan came home and he brought a gift. When I was eight years old we made a deal. If he ever played professional baseball, he owed me a pair of shoes. I'm not sure how I talked him into this deal. It doesn't really seem fair, he does all of the hard work and has to buy me shoes? Oh well, it worked out in my favor! He certainly came through. The day I got to buy make-up we happened to walk by the shoe department (I say "happened" in case my doctors are reading this). I fell in love with a pair of shoes. A month later, Ryan brought them home for my first interview! He's a keeper.

I got a comment on my last blog (shown below).I figured Ryan was just trying to act all tough after his sweet shoe gift. He was still asleep and had gotten a new glove. So, I decided two could play that game. I took his new glove and dangled it over the toilet and wrote "Now do you feel like e-mailing Oprah?" and slid the note under his door. Well, he woke up and was really confused (and most likely thought I was a big jerk). And then the light bulb went on; IT WAS ALLAN!!

It's been flyer mania! We have our flyer, A frame signs, and stickers all ready for print for the "Have You E-mailed Oprah Yet" campaign. Plus we got our sample t-shirts. Thank you so much for all of the shirt orders. Sorry, I didn't include a picture before; if you haven't already, it's your last chance to order. Shoot me an e-mail at cecisclimb@gmail.com! (Kelly and Kalma blinged mine!)

If you're participating in the "Have You E-mailed Oprah Yet?" campaign please snap a picture or video of what you're doing! We want to capture all the participants that day- at the schools, in the airport, passing out flyers, wearing the shirts, etc. Flyer coming soon! I'm supposed to be typing a letter..gotta go!

Hiking to Harpo

2010-09-12T16:11:00.004-07:00

Oh my gosh, I’m updating twice in one week! Crazy right?! I just wanted to catch you up on the “Have You E-mailed Oprah Yet?” campaign.

Guess what!! Southwest Airlines employees in Phoenix will be wearing the t-shirts and passing out flyers! At least 15,000 people walk through that terminal a day! How wonderful is that! We really, truly are going to save lives! Doesn’t that kind of give you the chills to think that we will have a hand in helping someone fight an awful disease like leukemia or lymphoma? Oh, or MDS!

Not only is SWA on board, Phoenix Children’s hemot clinic, the Apothecary Shop, Preferred Home Health Care, several high schools including-Gilbert, Campo Verde, & Mesquite, a few sororities, the Miniature Tigers band, the Town of Gilbert, the City of Tucson, and even elementary schools are helping out! Together, we can and we will reach Oprah! We have a great team behind the campaign.

You know, although this “climb” has been absolutely heartbreaking and scary, it’s not all bad. It’s opened my eyes to a need like this and for that I am so thankful. God’s got a plan.

Back to my point! It’s getting big! I’m beyond excited. But we need as many e-mails as possible! I wrote this blurb describing my story and my passion for the cause:

“On Septemeber 29^th, 2009, one year ago, I sat at home unsure of my chances at living. If I didn’t have a match I couldn’t receive the life saving stem cell transplant I needed; the only cure to the disease that consumed me.

I later found out not only did I have one good match; I had two. Both of my brothers were a perfect match. My story is EXTREMELY rare. Unfortunately, 6/10 people in need of a transplant don’t get the second chance at life I was blessed with.

From that day on it was my goal to bring awareness to the need for donors in the National Marrow Registry. I set out not in search of a match for myself, but for thousands of others fighting diseases like leukemia and lymphoma. My hope is that no one will ever again experience the desperation and helplessness my family felt that week.

On September 29^th,2010 we plan to flood Oprah’s inbox with as many e-mails about Ceci’s Climb as possible. The goal of the “Have You E-mailed Oprah Yet?” campaign is to find donors on a much larger scale. From www.emailoprah.org all you have to do is enter some general info and say you want to see Ceci’s Climb. Or you can send @theoprahshow a tweet.

Please e-mail Oprah so we can make a life saving transplant a reality for the 6,000 people searching the National Marrow Registry for a match each day. “

We have flyers, stickers, and t-shirts available! So, if you are interested in any of the above-shoot me an e-mail at cecisclimb@gmail.com. The t-shirts are $6.00 and come in sizes S-4XL. (Picture of shirts coming soon.)

Get ready Oprah, because we're climbing your way!

Let Freedom Ring (almost)

2010-09-09T22:19:00.006-07:00

Yes, this is still my blog. It's not pink and black (gasp!). I tried changing it, which you can see was a success. However; I don't like it, so it's going to change again. I had messed with it enough for one day and decided to leave it and fix it later. I've been working on "Have You E-mailed Oprah Yet?" which is September 29th if you hadn't heard. Lots of flyers, stickers, t-shirts, interviews, Facebook groups, etc has been in the works. I've had three clinic visits and a barbecue to attend this week!

The best part of all is that I'm down to 8ml of Cyclosporine (anti-rejection) twice a day from the previous 10ml. Yes, that means WE ARE TAPERING! It's supposed to be a ten week taper. Of course, my liver will be conductor on the "taper train". There goal is to get me off ASAP because just like the Tacro once did, the Cyclosporine is hemolyzing (eating my red blood cells). Therefore my hemoglobin is dropping ever so slowly and we all know I already had my last transfusion. Plus one. That doesn't mean I will refuse a transfusion, but I'm really hoping we can avoid one. Infusions aren't exactly on my "top ten favorite things" list. My white blood count is 4. That is normal!! We started a new antibiotic-it's the picture above, it doesn't taste as bad as it looks, I'd say it tastes much worse. It's pretty icky, but I'm used to it by now. Hopefully I'll be off as soon as we say "buh bye" to the Cyclosporine. Hopefully, we'll also say goodbye to the fluids at that time since the large dose of magnesium was needed because of the Cyclosporine. Geez that drug is a trouble maker. Last, but certainly (nowhere near, not even close to) least...February 1st. What a wonderful day! It just sounds great right? It's the day that I will be freeeeeeee. I know I've said this once before, but for the first time my ideal release date coincides with the doctors'. How did we come up with it you ask? If I am off the Cyclosporine in 8 more weeks, February 1st is 3 months post anti rejection; therefore giving my immune system time to build up.

There seems to be one lyric stuck in my head a lot these days, maybe you've heard it..."I can almost see it, that dream I'm dreamin". Okay, that is all.

I Am Home.

2010-09-02T21:22:00.014-07:00

Home from downtown? No. Home from East Valley Clinic? Nope. Home from Gamie’s? Uh uh. Home from a vacation? YES! This past weekend the doctors gave me the privilege of going to see Aunt Ro and Uncle Rick in Kansas City. It was like an escape from reality (minus the serious plane wipe downs). So, here’s how it worked. My Momma works for Southwest Airlines and they are ridiculously “fly”. Hah get it, fly, plane, SWA? Bad jokes aside, Mom picked two flights with over 60 seats available, I wore a mask, flew through the VIP security line, and I sat in my own little corner until pre-boarding time. When the lovely gate agent called for departure, I followed my Mom and Chelsea onto the plane. They had sanitizing wipes galore. They cleaned our row and then threw a sheet over it. I wore gloves (they so didn’t match my outfit) and a mask. You would have thought we had a bubble surrounding us. There was no one within three rows in front, back, or beside us. I carried my fluids on board to be sure they wouldn’t get lost or explode. Other than that, KC was a complete escape from the medical world. This is how the doctors put it...they have been saying “no” so much that with the proper precautions and arrangements it was about time they say “yes” before cold and flu season hit. They also knew a BMT doctor at the hospital 10 mins away from my aunt and uncle’s house! She used to be on the team at PCH. They gave me permission to eat outside at a few restaurants and go in a few stores. I was nervous even though I was masked. How can you expect me to go from my house to a completely different state without a little bit of anxiety? It was so wonderful to stay at Uncle Rick and Aunt Ro’s house. The change of scenery was extraordinary. There was even a little bit of rain while we were there. It was a Sunday to Wednesday trip. We stayed up til 2am every night, woke up at 11, and left the house at about 2pm each day. We spent a lot of the time just resting and relaxing upstairs watching movies and goofing off. But of course we also enjoyed the plaza, lush scenery, and the beautiful fountains. It’s such a beautiful state!

I went through four bags of wipes, four masks, and about 8 pairs of gloves. It’s hard to let yourself not worry after eighteen months of being afraid. I’m getting better, but I seem to cling to the doctors words. I’ve reminded them that each one of them has become a little voice in my head. It is so nice, that finally they’re telling me to relax and live my life.

This was like a little teaser reminding me what I have coming soon; a healthy, happy, silly and hospital free life. I desperately needed it. It was also my last hurrah before icky, cold and flu season begins. It’s hard to go back to the reality of hospitals and doctors appointments after this trip. It makes me want to be better so badly. It makes me want to cry. I got a new antibiotic at clinic this week since the Bactrim I usually take seems to affect my counts. My counts are thriving. I am so thankful. I love that I was allowed to take this trip. Thank you to Southwest for making it doable and ACAP (as clean as possible), Chels for being so amazing, and of course the fabulous Uncle Rick and Aunt Ro.

Thank you God for safe flights, family & friends, hope, and sanitizer.

Teenage Dream

2010-08-20T23:49:00.009-07:00

It’s been quite awhile since I last wrote and a lot has gone on:

1. Allan is at college. Awe my big little (aka middle) brother has grown up. You would have thought I was the one who went to college considering all the planning and list making I was doing. I was exhausted for three straight days after.

2. I’m off the every eight-hour antibiotic! Yippee. I was not enjoying the seven am alarm.

3. Aunt Ro came and went. I loved seeing her. It was beyond wonderful.

4. I got permission to wear make-up.

5. I smiled.

6. I cried.

7. I prayed.

8. I laughed.

9. I lounged.

That doesn’t sum it up at all. It was an incredible day Tuesday. My labs were marvelous. My liver enzymes were actually in the normal range. I got to pick out make-up in a real store (masked of course). I get to eat out once a week as long as “mama bear marches into the kitchen and demands sanitary measures”. Those are the doctor’s words; not mine. The good news kept coming. I would begin the 8-16 week wean of cyclosporine in two short weeks. Plus I could do one activity a week. I was crying and thanking God over and over again. It was pure bliss. I recall walking around saying, “I’m healed!” repeatedly. I kept looking at the cloud filled sky thinking, Grandpa is smiling right now. I told her if she told me anything else exciting I would most likely faint. Of course, these conditions will change when cold and flu season begins (Please I beg you; wash your hands!).

Funny enough, I woke up the next morning unhappy. I think I was feeling something somewhere between disappointed that every day couldn’t be like that and fear. I’m starting to step back into the world for the first time in seventeen months. I feel like my Mom and Dad are dropping me off at the first day of kindergarten. Everything is new and exciting; yet scary. When I was in the hospital I was in survival mode; now I have a chance to step back and worry about things. I consider it a good sign, but anxiety isn’t exactly my favorite emotion.

Don’t make any plans on September 29^th! Okay, you can make plans, but please tell everyone you know: your mailman, your paperboy, your son, your daughter, your great grammy, your veterinarian, your uncle’s brother’s cousin’s daughter’s sister’s mother to e-mail Oprah! Tell anyone and everyone. I can’t share the details of my surprise yet, but above is my logo for “Have you e-mailed Oprah yet?”

This week had it’s share of high’s and low’s. Fortunately, every high was much greater than the lows. I’ll end with an e-mail I sent to my Mom when I was really struggling one night. I keep reading it over and over again; reminding myself who I am and what I believe in, and nothing can ever take that away from me.

"I believe that every single event in life happens in an opportunity to choose love over fear.
-- Oprah Winfrey

I do believe that when we face challenges in life that are far beyond our own power, it's an opportunity to build on our faith, inner strength, and courage. I've learned that how we face challenges plays a big role in the outcome of them.
-- Sasha Azevedo

I went back and reread some of my old blogs. I never realized it, but along the way I've lost some of me. The happy, silly, girl who was just in love with life. The positive, upbeat, you're never going to get me down attitude faded to an anxiety ridden, worried, stressed out adult. Before I was the girl who always chose love. Somewhere along the way I lost sight that although I have very little control over what's happening- I still play a very important part. I always think back to that day I was scared and crying and I looked up at the sign that said believe. That's still my motto. BELIEVE & ACHIEVE. I seemed to have let this battle affect my thoughts, confidence, and belief in myself and my belief in the power of positive thinking. There was no doubt I would make it on Oprah, and there is no doubt I will get better. Just like I want to instill in my kids one day...NO matter how BIG or small ABSOLUTELY ANYTHING is possible if you believe, have faith, have dreams, grow, and work hard. As of right now, I'm reclaiming love and a belief in my myself. That's right MDS-another battle that I just won.

I'm so thankful for that blog. Time and time again it's been a huge blessing."

School Shopping...Sort of

2010-08-10T19:17:00.006-07:00

I spoke too soon; the back pains returned, but only because they gave me another dose of Neupogen. Heating pads and pain meds are such a beautiful invention when you're in pain. The pain has almost completely resolved, again. My ANC had dropped to 500 and is now up to 2100! That is the highest it's been in awhile.

I tapped my little red heels together and I'm home. Well that and the doctors signed the release forms. We have already given the first dose of antibiotics at home. It was a party ball and it went quite easily. We also have our medication schedule up in my room, color coded and all. I came home to a clean house. I love that feeling when you walk in your door; ahhh home. It's so comforting.

Tomorrow, school starts. Yes, I'm sad. Yes, I want to be there. It's not the first time I've missed a first day of school, it's still difficult though. But to be honest the more I think about it; the more excited I get. In January; I will have my first day of school. I'll worry about my outfit endlessly, I'll have a backpack full of shiny new notebooks and sharpened pencils, and I'll be the happiest girl you could imagine. But for now; instead of buying school clothes; I got new pajamas and instead of pens and pencils; I got slippers. Works for me!! :)

I'm so very thankful that the infection is cleared up, that I'm laying in my own bed, that one day I will have the opportunity for my first day of school, and that I'm still climbing. God, thank you for being a part of my climb.

P.S. I've got some exciting news about Ceci's Climb coming up...yes, I'm going to leave you hanging :)

Tired & Can't Think of a Title

2010-08-08T22:01:00.011-07:00

We said goodbye to fevers and chills, and hello to back spasms. My fevers subsided that Friday morning. The next day I woke up and was nauseous. I quickly grabbed a bucket only to feel my back start spasming. It happened about three times. My Mom was sitting on the couch and was mortified as she saw the pain literally jolt through my body. Immediately she hit the call button and the nurse came in. I was not in the mood to answer questions like "on a scale of 1-10...", "What meds. work best?", "Do you have anything ordered?", "Where is the pain?", etc. I wanted medicine and I wanted it ASAP. I was sobbing and I told her it obviously hurt where I was grabbing (I get slightly sarcastic when I'm in pain.), that I wanted Fentanyl, and with a final plea, "I NEED MEDICINE." she left to go grab it. It wasn't pretty. I was in a lot of pain. Two days later, after Oxycodon, Fentanyl, and a heating pad the pain has almost completely subsided.

They have identified the bacteria as Pseudomona. It is typically found in water. The think it is a line(broviac) infection. They also think the culture was contaminated and the second bacteria was a skin bacteria. The last two cultures they have drawn have been negative which means the antibiotics were successful. Originally the plan was to stay in-patient for 10-14 days on the three antibiotics. But, as we've learned, plans change quickly (and this time for better). They took me off all three antibiotics and replaced them with Meropenem, an antibiotic that runs over a half hour, every eight hours. Plus the two fluids we already infuse nightly. There hope is to send me home in the next few days and run the antibiotic ourselves. It will add stress to our schedule, but my bed sounds so good right now! I'm pain, fever, and infection free now; there is no need to be in-patient other than to finish the treatment. I'm so thankful this is the only encounter we've had with line infections.

The right side of my lungs are sounding slightly heavy so they have me back on the incentive spirometer and they are checking o2 sats frequently.

I've had lovely home cooked meals each day in the hospital. The nurses keep asking why I'm not 1,000 pounds since I know people who cook so well. (I think they're just saying that because they want to keep getting the leftovers.)

It's been a rough week. Although I find myself unhappy to be back; I've still got a lot to be thankful for. I got to see one of my favorite doctors that was on my team during the code in June of 2009. It was great to catch up! I'm excited to head home. I'm starting school again soon! (Home schooling, but school nonetheless.) Dad saw this rainbow outside the hospital after the back spasm episodes...there's a rainbow at the end of every storm.

ER & A Baseball Game

2010-08-05T23:11:00.000-07:00

Hello Ceci's Climb Fans!

Thanks for checking in on our girl today! This is Aunt Jane to give a brief blog update on Ceci.

Yesterday, Wednesday, Ceci began to run a fever in the afternoon. She arrived at PCH and they began working immediately to figure out the source of the fever. Needless to say they admitted her. The fever abated and then returned at 1 a.m. and then again at 6 a.m. They added more antibiotics and believe it could be her liver or graft vs host that is the cause of the problem. They will continue to eliminate the possibilities to find the source.

There is a great story to be shared, however, that happened in the middle of her getting to PCH. Ryan was pitching yesterday for the Great Lake Loons and Ceci had brought her computer to listen to the broadcast. The nurses and staff were very supportive in keeping the medical team around her quiet so that she could hear it! It was cancer awareness night at the game and Ryan had shared before the game with the announcers that he wanted to send wishes to his sister in AZ to get better as she recovered from her transplant. Ok, no dry eyes for any of who heard this and especially knowing that Ryan had no idea she was at PCH! Can we all agree that this was a “God given” word of encouragement? I know Ceci would also want to share that Ryan went on to pitch 5 fantastic innings and he got the win. Go Loons!

As always, we thank you for your prayers of strength, wisdom for the docs and a peace that passes all understanding. You are all appreciated. Until the next update…take care!

Not so fast. Thanks Aunt Jane for updating while I was shaking like crazy. Fevers are pretty mean little suckers. The nurses kept coming in to take my temperature, my blood pressure, etc..which meant they would be removing my covers. That was cruel. I thought I would add what else we found out today. My culture (blood sample) grew with an infection overnight. They believe there are two bacterial infections. It could still be a little GVH flair up or an infection of the liver, but until further testing we can't be for sure. It's great that we know what we are dealing with; that leads to better treatment.

I forgot how annoying it is to be touched all of the time and the early morning lab draws. I feel so thankful I'm this far along. I think about the kids in the rooms next door and shudder remembering what it feels like to be in their position. I'm not sure how long I'll be in-patient or the exact treatment, but I just have to remember; "It's all about the climb."

Fear

2010-07-28T16:43:00.008-07:00

Allan and I found the old game cube and we have been playing Mario Party. He beats me in every single game. But it's still fun. We finally started playing as a team. Hey, if you can't beat em join em, right? A little brother-sister bonding.

My diabetes was steroid induced and since I'm off those little monsters now...it is gone!! I don't take shots anymore. I only have to check my blood sugar twice a day for one week. I'm so thankful. It's amazing how when you have to do something; it just becomes a part of your routine. However; I have no problem removing it from the schedule. Again, my love and prayers go out to those whose case isn't temporary.

I started feeling better and I wrote this long blog about how excited I was to be on the lowest dose of magnesium (in my fluids) I'd been on and feeling the best I've felt in a long while. The next day I ended up getting labs drawn in the East Valley and poor results landed me an afternoon appt. downtown. Then that appointment landed me a transfusion the next morning. I was disappointed, angry, and frustrated. I had already had "my last transfusion"! They think the Cyclosporine is doing the same thing the Tacrolimus did-eating my red blood cells. The doctors said I shouldn't consider it a step back. It was still disappointing. I'm feeling better after the infusion.

This is totally random, but I had McDonalds. Yes, you read that right. A mighty kids meal to be exact; chicken nuggets and french fries. My Mom went inside and explained the situation and they made them fresh. The employee who helped her was wonderful. Her boyfriends brother had recently had a transplant. I think getting approval was most likely a lapse in the consistency of the isolation rules, but hey, I took advantage of it.

I have gotten so much positive feedback on the website! Thank you so much. We are planning the Oprah e-mail attack for September. I'll continue to update you on the progress.

Each day of this fight has been different. Each day I've learned something new, felt a different pain, worried, and felt a happiness that's unfathomable. Not only is this a physical battle; it's an emotional battle and a spiritual battle. I have never once doubted that I would get better. The time line I'm clueless too, but I believe it; there's going to be a day. Well, this week I began to question whether it was God's will to heal me. I'm doing so well, why would this doubt come out now? The doubt was like a mosquito that was going to bite me one way or another. For a week, I let it try, swatting it away constantly. But a few days ago, I unraveled. I was sobbing. I was beyond scared. My heart ached. Well, here's what I came up with: God wants to heal me. Growing in my faith I've realized my walk with God is about finding my truth in Him; not someone else's. I believe it is His will to heal me. I can't live my life afraid of MDS returning. Life is full of risks. To let fear mask the remarkable beauty isn't living. John 14:27 "...Let not your heart be troubled, neither let it be afraid."

The Big Unveiling

2010-07-20T22:12:00.006-07:00

Okay, I've been working on the website nonstop. Alright, there has been some stopping, but I've been working hard and I am so proud to finally present it to you. I am still working some of the kinks out. For instance, if you are on a Mac computer using Safari it doesn't open properly, but it opens well on Firefox. Anyways; I hope you enjoy!

Quick update: off steroids, mag and electrolytes were steady, the lower Cyclosporine dose proved effective in not eating my red blood cells, and my liver enzymes are continuing to improve. Rewind, YES, I said OFF steroids; as in I don't take any, zero, zippo, zilch. Thank you God. Oh, hallelujah. Goodbye, little monsters. I had another pulmonary test on Monday and the results are pending. My cheeks are going down, my hair is still growing, and I now eat about 1/4 of the portion size I did on steroids. I've been very fatigued and having back pains (and hot, gotta love AZ). They are still unsure of the cause of the fatigue, but I believe the back pains have something to do with the fact that I haven't been doing my stretches, OOPS. Learned my lesson, well not really, I'm still not stretching. (But in my defense I am getting more exercise, you should have seen the stairs I climbed the other day!) Okay, now quit reading this...you've got a website to check out.

www.cecisclimb.com

P.S. Thank you for loving and supporting me. You will never know how much it means to me. I am sincerely grateful. I don't say it enough. Now really, website!

Half of the Results

2010-07-08T13:14:00.006-07:00

Two posts in one week! Wham, bam, slam. I am sitting on my couch eating the ever delicious (and not at all nutritious) bagel bites. We were home from clinic by noon; that's a record.

On Tuesday we tapered my steroids to 5mg in the am and zero (zippo, nada, none, etc.) in the evening. Yesss. Unfortunately; I didn't feel good the next morning and didn't have a good appetite. We found out that my body is not yet used to producing it's own hormones because we have been giving it prednisone for so long. It will take a little while to realize it needs to start producing them (in other words..get their lazy butts back to work). Plus, my Mag was even good-we got to taper just barely on the amount in the fluids; another positive.

I'm still working on my drinking...thanks for the reminders.

And last, but certainly not least. CHIMERISMS! We only have the T Cell results back. It was previously 83% Ryan. It is now 87%! It doesn't sound like a huge jump-it's 4%, but it really is marvelous news. I am taking immune-suppression drugs. The goal is to suppress Ryan slightly so that we don't deal with GVH, but one of the biggest fears is that it will suppress Ryan's percentage in chimerism. Yet another blessing; it hasn't.

Speed of Life

2010-07-05T23:35:00.002-07:00

Yes, I am alive. I honestly mean to post more frequently and for some reason I never do. My excuse lies in the fact that when I don't know what I'm feeling; I certainly don't know what to write. But each time I sit down to write I realize it's therapeutic. It clears my head. I promise, I will get better at posting.

This week has been good. My counts are relatively unchanged. I am at 5 and 2.5mg of steroids each day. We are behind on the initial plan (for tapering) by two weeks. We are hoping to get back on track tomorrow if my liver permits. This Cyclosporin drug that I'm on (in place of Tacro) has a stench. Pills don't usually give me a problem, but I dread taking these. My Magnesium was above the normal range and we went down to 3 grams in my nightly infusion! However; I was reprimanded...I haven't been drinking my goal of eighty ounces. I was unhappy when they "slapped my wrist". I would like to know how many ounces they drink a day. Anyways, it's not that I don't want to drink it. I know that I am supposed to; I just don't always remember. They upped the amount of fluids by 1/2 a litre. So if you think about it; please remind me to drink.

I do have some wonderful news to share about my blood sugar levels. I am down to about two shots a day. My levels are finally under control. It's such a relief to know that the Diabetes is continuing to improve as my steroid doses decrease. Not only does that mean less shots, but I feel better. I can see myself improving. I'm not as tired. That feels wonderful to write. So wonderful I'm going to write it again; I'm not as tired. I'm not as tired. I'm not as tired. I have gotten so accustomed to being tired; I'm in tears just thinking about the power of those little words I just typed. It's a step in the direction I so desperately yearn for.

I was in the crowd for Ryan's first minor league start. It was extraordinary. I sat surrounded by friends and family (I was masked of course). I felt like I was witnessing the start of something big; something great for someone I love so much. Plus it is Allan's birthday today. He's nineteen. It's surreal how time is flying by. Life is changing. I knew it would happen sooner or later, but I didn't think I would feel like it's almost passing me by. Ryan comes home for "visits" and Allan is going to college; what happened to the two little boys that come and jump on my bed at 4am on Christmas morning to tell me what's under the tree? To be honest, I'm a little afraid. I always had plans and goals. I knew what I wanted. But my life has changed; along with my priorities and my goals.

Last night; it was 12:30am and my Dad was massaging my feet. We were channel surfing and somehow we ended up on Joel Osteen. His message revolved around knowing that God's got a plan for each of us. He said something that really stuck with me;"Satan isn't fighting us for where we are; he's fighting us for where we're going."

I've been working like a mad man on the Ceci's Climb website. I was hoping I would have it ready to show to you by this week. Unfortunately; it's not yet ready. I get so giddy when I work on it. I'm like a little kid with a new toy; marveling at all of the possibilities.

My hair is growing. I have a very short pixie cut. My hair has a little personality of it's own. It's dark brown, thick, and can officially hold a part. I touch it a lot. My Mom claims it's because I'm checking to make sure it's still there.

We started something new. PCH has a newer clinic located in the East Valley. They are working on expanding the Hemot clinic and I was the first transplant patient to be seen out there! Oh, let me tell you, I felt special. It is much less congested; not to mention cleaner! Since I was the first BMT patient they treated me like a VIP. I got a new blood pressure cuff at check in, was whisked straight into a room in the back, was introduced to some of the staff, and I was not forced to step on the scale barefoot. Plus; it is only eleven minutes away from our house!! The only downside is that the transplant team does not visit that office. So, each week we will have one visit downtown and one in the East Valley.

Chimerism pending...come back tomorrow for results.

Let's Talk About Allan

2010-06-24T11:29:00.018-07:00

No, let's not.

Monday, clinic was really great! My liver enzymes improved. It was a leap towards normal levels compared to the slow crawl we seemed to be stuck at. Plus, my magnesium level was in the normal range. Both of these improvements are attributed to switching my anti-rejection medication. What took us so long to make the switch is what I want to know!

Some people say they've never seen me angry...you should have been with me on Tuesday night. I noticed that my fluids had finished two hours early. I thought, "Great, here we go again. More problems with the fluids." It just so happens we had a little mishap that caused my magnesium to go in at a faster rate than it was supposed to. Wednesday, I payed the price. I had headaches that led us to clinic for an unplanned visit. We checked lab values, headed home, and then received a phone call. My mag was so low we would need to come back again today. So, I am sitting in clinic harassing the doctors. I'm getting a magnesium rider(infusion). Actually, Dr. Douglas just asked me, "If I was always this facetious?" I responded, "No, just around you." I quite enjoy the relationship I have with my doctors. They make what would be an unpleasant situation bearable.

I had been very giddy on the way to the hospital and my Mom couldn't figure me out. Finally, I explained that I could have the headache and be in a bad mood or I could have the headache and be happy. Either way I would have the headache. I couldn't do anything but pray and hope it would get better; I might as well be happy? I'm tired of this situation controlling everything about my life. So, I'm taking the control back starting with my attitude. Ironically enough, on the way home I was in a bad mood. HAH!

Fine, I'll talk about him; Allan, waited in line for twelve hours and is still waiting outside the Apple store to get the new phone for his favorite little sister(awe, how wonderful is he?). I like to call Allan my physical therapist. He makes me laugh so hard, it's quite an ab workout. I've enjoyed his company this summer, but I'm thrilled he might take the scholarship he was offered to play baseball in Kansas this fall. Ryan moved out, he's officially a Dodger. And I just expanded my wardrobe with two new t-shirts; Dodger blue and Dodge City purple.

I've come to see that although I can't have all of my life back; doing things that are close to normal are still enjoyable. I finally realized that the doctors said I had to be isolated, but I had also been retreating because it was easier for me. I thought if I wasn't constantly reminded of what I couldn't have; I wouldn't miss it as much. I found myself shying away from friends. I wasn't sure we had common ground anymore. I was scared to put this vunerable and different side of myself out there. It made it so real that I was the sick one. But I've started driving again (with an adult in the car) and we have been trying to find activities I can do with friends outside. I have done a couple of things and realized that putting yourself out there is most definitely worth it. It made me realize that people love me for me. My theme for this week is love. My Bible study was about owing one another nothing but love, the song I have on repeat is about forgiveness and love, and Mrs. Bray filled my bucket with it. Sometimes I get so caught up in worrying and stress that I forget that love is what this crazy life is all about.

Let's Talk About Ryan

2010-06-15T11:58:00.006-07:00

Ryan Paul had a very big week last week starting with Monday night. We got a phone call from PCH at about 7:30pm. They had chimerism results to share with us! Are you ready? I am 98.5% whole blood Ryan (same as last time) and 83.4% T Cells Ryan (8% improved). It was wonderful news. He's got feisty little cells. They are using steroids to calm the graft vs. host down and he is still improving! That stubborn personality is a blessing (in this situation at least).

Tuesday was the second day of the MLB amateur draft. As I've mentioned before, Ryan, was scouted by various teams. I was at Gamie's house making a baseball cake and cupcakes to surprise him when I heard it,"the LA Dodgers select Ryan Christenson, a left handed pitcher, from South Mountain Community College in the seventh round". The feeling of absolute joy and happiness that consumed my body was incredible. I was jumping, crying, screaming, and thanking God. I am so proud of Ryan. The little boy who sat the bench on the team his Dad coached has the opportunity to play professional baseball. "Keep a dream in your pocket and faith in your heart. Anything is possible."Things have been extremely crazy around my house for the past 15 months. My brothers and the entire family have graciously made my health the number one priority. Tuesday was something we all needed. It was hope for the future, reward for Ryan's hard work, and a reminder that things are worth fighting for. The high I felt was not induced by medication, and I was on cloud nine. As a matter of fact; I still am. I am one proud sister.

Well last week had been quite an exciting (and busy) week. I'll save you the boring details of the medication changing throughout the week. We will jump straight to yesterdays labs. Chelsea went to clinic with us. I am officially off of Tacrolimus and I'm starting a new form of anti-rejection. They think I have something called "TAM". That is where the Tacrolimus eats my red blood cells. Then they turn into indirect Bilirubin. Plus, the Tacro is metabolizing my magnesium. (That tacro likes to eat everything I guess). My mag level continues to drop no matter the amount they infuse nightly and is the reason I feel so poorly. So, they decided it would be best to try a new anti-rejection med that has less of a chance of metabolizing the mag and irritating the liver. We still tapered on the steroids; 7.5mg in the am and 5mg in the pm. We are getting there! At this rate we are looking at about four more weeks on the little monsters. We are finally starting to see lower and almost normal blood sugars! It took a lot of playing with the insulin, but we are definitely making strides. I am at an average of 4 pricks and 4 shots a day.

The summer flu is going around. I know that because both Allan and my Dad caught it. I'm hanging at Gamie's for the time being. I showed up at her house yesterday afternoon, smiled, and said "Hi Roomie". Thank you for loving me Gamie; that's all I can say.

Last week was a good week emotionally. My life has revolved around MDS, transplant, and the medical world for so long. I was losing sight of the fact that that is not who I am, but merely what I am dealing with. Last week helped me see that more clearly. There's a teenage girl full of life and personality behind the needles and the mask. Praise God for Ryan, his cells, an improved chimerism, oh the list goes on and on.

A Lovely Realization

2010-06-05T14:44:00.017-07:00

Oh, life you are so confusing. I realize that's a very broad statement, but that seems to sum it up. Emotionally, physically, mentally, and spiritually...it's all confusing. There are moments I feel like nothing could get harder or more overwhelming and then they do. Yet, there are moments that I feel at peace with the ways things are. It's strange.

Just when I thought I had done all of the "soul searching" I could possibly do; let's just say I found some more soul to search. We will never be done growing and learning here on this earth. It's been quite a week. I don't know how to sum it up honestly.

Medically things are all over the place. They are constantly changing medications and routines. Which is very stressful for a girl who likes things organized. I dealt with "petty symptoms" all week. They just pile on top of each other. Charlie horses, headaches, warm to touch, toothaches, nausea, dizzy, weak legs, itching, heavy eyes, extreme fatigue, etc. The majority of the symptoms were attributed to low magnesium and electrolytes, but there are so many contributing factors. My blood sugars are still fluctuating, but are improved! I haven't had to take insulin four mornings this week because my level was in the target range! My tacrolimus level was upped to 5ml. That is the largest dose I've been on. Since we are getting farther away from the posaconozale, it hasn't shocked us that it is being metabolized so quickly. Oh, and I am absolutely thrilled to report that we are down to 10mg twice a day on the steroids! Uh huh, oh yeah.

I always complain about being tired and after thinking it through my Dad realized that I haven't gotten more than 4 hours of consecutive sleep a night since January. I wake up about 3-4 times a night to go to the bathroom because of the 10 hour infusion of fluids I receive. Plus, on steroids; falling back asleep isn't the easiest thing to do. He brought it up at clinic and they came up with a solution. We changed the type of infusion to three hours. I wouldn't mind a better nights sleep. This was a welcome change. We have used three different forms of IV fluids this week; the pump, the party ball, and the dial pro. Hopefully, the dial pro will be a nice fit for both my medication and my sleeping schedule. To be quite honest; I have no interest in learning how to use another form of IV fluids.

It's very clear that I like food. Specifically that of the chocolate and sweets variety. So much so that my Grandpa coined the nickname "Sweet Girl". (He always said it was becuase my personality, but I think it had to do with food). I had been using the excuse of steroids to consume large amounts of food. I would even dare to say I ate for comfort in those rough two weeks. Well, it's the complete opposite as of late. After one of my "aha moments" I realized I would have to face my own problems and feel my own emotions rather than drown them in a bowl of ice cream. (That and I had to start carb counting). I am so proud of how I've been eating. I am on a proper diet. It's beyond strange to me. I eat lots of vegetables and my big splurge is a bowl of ice cream. Like I said, if you know how much chocolate I used to eat you'd realize how far I've come.

We had a photoshoot about a week ago with our friend, Annie Gerber. She is an amazing photographer who wanted to capture this phase of my journey. It was so much fun! We spent an hour at a bird park here in Gilbert. You should check her blog out: www.anniegerberphotography.com.

I've struggled this week with the fact that I go to clinic twice a week and have 4 people sit in a room and decide what I do, when I do it, and who I do it with. I'm sixteen years old. I don't really like scheduled naps. My phone alarm went off and the doctor joked about it being a boy trying to get ahold of me. That shouldn't just be a joke. I shouldn't be worried about meds, shots, carbs, and insulin. I wanted to scream. I wanted to get out of that room immediately. It wasn't supposed to be like this. But you know what I realized? Right now, I don't have all of those things, but God still gave me the chance in the future. Yes, my situation sucks, but I'm still here and I can handle this. I can suck it up and get through it. There are so many other families who don't get that second chance. I'm so thankful for it. The next time we catch ourselves complaining about something small and petty; let's all promise to stop and realize that we could have it a whole lot worse.

I want to make one thing clear: I'm going to keep going. You don't have to remind me to "keep hanging in" or "we're going to get through it". I know that. I believe it whole heartedly. Right now; I'm just trying to manage everything being thrown my way. My suffering is for a greater purpose. I'm not sure what it is, but my pain is not pointless. God's got a plan. And that gives me the ability to push on.

Finding Happiness

2010-05-29T10:38:00.014-07:00

I expressed my desperate attempt to be happy two weeks ago. I wrote about how sad and frustrated I was and the response I've received has been extraordinary. The love I’ve felt is incredible. It’s made me feel so strong after feeling so weak.

Two of the hardest weeks I’ve dealt with were followed by the most inspirational week. It has been full of more self-growth than I could’ve ever imagined. I’ve had to dig down deep and really look at who I am. For fellow Oprah lovers, I’ve had so many “AHA moments” in the past 5 days.

Here's a few of the fun things I've gotten to do or received: first there was “I love Carolyn” day on Facebook. Next, I got a package of notes from my cousin Casey’s class in Atlanta; who knew I needed some inspiration. They are juniors and seniors who spent there last day of class sending a girl they’ve never met well wishes. Third, we’ve been working on t-shirts and web/ logo design all week. Fourth, Make-A-Wish came for a visit. The volunteers, Amy and Don, were incredibly nice! I submitted my wish and they were almost as excited to get the ball rolling as I am. My wish was to promote the need for donors in the National Marrow Registry with Oprah Winfrey. Lastly, I want to talk about the statistics class at Gilbert High School. They used my story and a charity to compare the best way to fundraise. I was beyond surprised when they showed up at my door with a gift for me. This week has been full of craziness and love. I have enjoyed every minute of it. But I should mention; there were rough spots too. The steroids still leave me high strung and stressed out. But I’ve been trying to focus on what is really worth stressing over. I've continued to learn that if you can’t control it; there is no sense in worrying about it. All we can do is hope and pray for it to improve.

I’ve received some of the greatest quotes this week. Here are a few that really resonated with me:

“ We are all in the gutter, but some of us are looking at the stars.” -Oscar Wilde

“Remember today is the tomorrow you were worried about yesterday.”

“You have the sky in your hands. Blow it away and watch the dark clouds disappear.”

I’ve caught myself feeling guilty about my cries and complaints. But it’s easy to look back and say I could have been more positive. That’s the way I was feeling those two weeks and I can’t be sorry for how I felt. But I can try and appreciate what I have more. I can focus on what is positive even when it seems so negative. And I can learn from those feelings I experienced.

Medically, my liver enzymes took a turn in the wrong direction. They removed the drug, called Posaconazole, that had initially been added to help take the stress off of the liver (funny how that works). It was the medication I took three times a day accompanied by fatty meals. That helped ease the crazy schedule slightly. Mycamine took it's place. It’s IV and takes an hour to infuse. I hook up at 9pm and then follow it with my nightly liter of fluids, magnesium, and potassium that finishes in the morning. After stopping; the liver maintained it’s levels, but the Tacro is now being metabolized more quickly so we went back up on that dose! If none of this makes sense, please forgive me. Up and down, up and down, I have to take notes while the doctors talk to try and keep it all straight. Regarding my blood sugars-I have some great news!! We have fine-tuned the insulin twice this week and we are starting to see improvements! Right now, we are at four pokes and five shots a day. I am proud to announce I can actually poke myself! (I think I’ve mentioned I don’t like seeing needles before; so this is big! My Mom still does it, but at least I know I can.) We had started a new medication last week that had a one percent chance of an itching reaction. It happened. Now, I think it’s actually kind of comical. So, needless to say, we stopped that too.

The difference in my weeks has been a mental change. It wasn't the activities I took part in that brought the happiness. I did fun things those two hard weeks, but I had been focusing more on the negative than the positive. It was the inspiration and hope, the love, and a realization that you just have to bounce back up that was different this week. It felt like the steroids took my personality and my ability to bounce back up. They can and have undoubtedly changed my personality. But they can only take it away completely if I let them. We all have a right to down days, down weeks, heck; being down for as long as we need to be. But we all have a reason to smile after we’re done frowning too. Sometimes we just need to be reminded of that. Thank you and thank God for helping remind me.

“Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.”

Only fine, then Happy... Oh, I don't know.

2010-05-21T14:52:00.016-07:00

Okay, so they changed my insulin doses yesterday, and they changed them again this afternoon, and most likely they'll change them again. We have to get the right schedule for my body. "I've needed more than they anticipated." is how they put it. I told my Mom, do they not get it yet? All along my body's motto has been "go big or go home". Sometimes that's been good and sometimes bad, but it's been consistent. Thankfully, we don't have to count calories anymore. A huge weight has been lifted. Our transplant doctor called the endocrinologist and pleaded that with our already hectic schedule of meds it was too much. (And people say complaining never gets you anywhere. Just kidding. It doesn't.) My blood sugar levels are still fluctuating from 250-400. My target sugar is about 150. I'm now taking five shots a day. The units I take depends on a sliding scale. Basically, instead of compensating for carbs; we compensate for blood sugar points over 150 in the daytime and 180 before bed.

My liver enzymes went up slightly and there was no drop in steroids like we had anticipated. However; my Tacro was above therapeutic again. So, we tapered again on the Tacro. We went from 4.0ml to 3.6ml. I suggested a larger drop (I do every time, like I said-go big or go home.) So, clinic was fine. That's my word of choice these days; fine. People don't really like it, but it works. I'd be lying to say I'm in a good place, but I'm so tired of complaining about it and having pity parties. I don't want to feel this way. I have so much to be thankful for, but it still hurts. I'm fine. But someday; I'll say "I'm great" and I'll mean it. God reminds me that each time I open my Bible, hear an inspirational quote/verse, and read your comments. Ooo, and He reminds me each time I look down and I'm wearing this new pair of pajamas I got. It's like he is saying, "Soon; they'll be street clothes."

The thing about steroids is the wave of emotions and the frequency they change. It is incredible. For example, I wrote part of this blog, walked away from my computer for fifteen minutes, came back to the computer, re-read it, and I was like where is all of the positive? Who is this girl typing? What is going on? Ahhhh, why do some professional athletes choose to take these stupid steroids? I know they use different types and have different circumstances, but this is not worth an increase in batting average. I wish I could accurately depict what Prednisone makes you feel like for every person who has ever faced it's wrath.

Overwhelming & Informative

2010-05-18T17:59:00.006-07:00

There is so much to update you on. I complained about the slowly/ nearly unchanging day to day basis. Well, I got my change.

Monday, my labs were all strong, with the exception of Magnesium. They upped the dose in my fluids. My liver enzymes decreased. Plus, my Tacro level was above therapeutic. So, we decreased my Tacro and (drum roll please) we tapered to 15mg on the steroids! My clinic appointment ended up including a visit to the endocrinologist (which is on the third floor in the same building). They couldn't fit us in until 1:30, but felt it was necessary we see a diabetes specialist. My glucose took another jump and they felt starting insulin was imperative. We were given a little machine to poke my finger four times a day and check my blood sugars. I also received my first dose of Lantis. It is a slow acting, long lasting form of insulin that works for eighteen to twenty-four hours. My glucose took a drop after the shot, but hours later; it reached the highest level yet. I was an absolute mess. It almost felt like too much to bear. At one point, I asked if I could just have some Fentanyl (strong pain med). When they asked what hurt I told them, "It was heartache and I just needed to go to sleep." Usually, I only joke about that, but I was serious. I was declined. Later that night, I took the wrong dose of steroids and calcium. I was beyond overwhelmed and tired. I sat down and opened my Bible to a random page; it was about pain and how God has a bigger plan than we can see. It was the first relief I felt all day. I had resorted to searching for comfort at the bottom of an ice cream carton. When in fact the most comfort I have found is in God's strength and love.

Today, I woke up from a good night's sleep very tired, but I was refreshed emotionally.I had made it past the overwhelming phase. On top of that, I was served french toast and bacon in bed. What a great start to my day! We returned to the endocrinologist to lay out a plan and discuss how we would treat the diabetes since the one shot was unsuccessful on it's own. The meeting today was much more informational. They had a baseline and therefore an idea of which direction to move. There were no tears or pleas for pain medication. I now take a fast acting insulin shot before each meal and Lantis once a day. The general consensus of our meeting was to limit my carbs and sugars. As a growing young woman I need both, but in moderation. That's where compensation comes in. We take my level, count the carbohydrates of the meal we planned, take one unit of insulin per 15carbs, wait fifteen minutes, and dig in. Although, taking four shots a day isn't good news; I was relieved to no longer feel like I was drowning. I was reminded it will be temporary. I am so thankful.

My heart goes out to those with Diabetes. Even though I was aware of it's existence, I never realized what a burden it is. Poking your finger constantly, counting your calories, taking shots, and the fatigue and stress of your blood sugar levels is not pleasurable. Although I'm aware that my empathy provides no relief; I hope it provides comfort.

We are going back to clinic Thursday and will be on a day to day basis with my blood sugar. We will report my levels each morning and they will decide how to move forward. I'm so happy to be in a better place emotionally and moving there physically. Thank you all of for your comments on my last blog, they brought my Mom and I near tears. Jena Belle, if "The Climb" starts playing tonight and you send up your prayer requests, please add an extra "thank you" for me.

Let's Get Real

2010-05-16T17:02:00.007-07:00

You assume that once you have the actual transplant the hard part is over. Boy, they were spot on with the saying about where assuming gets you. I guess the physical part has been much easier and near painless compared to what transplant was like, but the emotional battle continues to worsen. And that is putting it mildly.

I wasn’t going to update. I didn’t know what to say…how I felt seemed too harsh and boring, but again I realized even if it’s just me complaining; it’s honest; something I’ve tried to hold true too. It almost feels too vulnerable to confess some of these emotions.

It’s been a very hard weekend; probably one of the hardest yet. Let’s just put it this way, yesterday, I resorted to having two bowls of ice cream. It’s slow and dreary. Some days I feel like I wake up and live the same twenty-four hours over again. My time consists of eating, drinking, and taking medication.

Last week, I really focused my attention on packing my Mom to leave for graduation. My energy went into planning and getting her ready, but once she left I had no choice but to focus on my own problems. There was no escape. I wake up at 2 in the morning some nights and have a small (or large) pity party for myself. I know deep down that I am not stuck, but it sure feels that way the majority of the time. My future is bright, but the present appears very dim from where I stand. Everyone is in this whirlwind of growing up and changing, summer vacation, and the future and it feels like someone pressed the slow motion button on mine. And of course; steroids intensify all of my emotions. I have to keep that in mind. This feeling is temporary and so is this phase. I am so very grateful for that.

I’ve walked around with this sad look on my face. My puffy cheeks emphasize my tired eyes and pouty expressions. I haven’t even been attempting to laugh at things I really don’t find funny. (Like my Dad’s “mabel bacon” joke, sorry Pops, that one is just not funny.) My smile is seen scarcely and usually when I’m huddled over food or working on Ceci’s Climb.

I came to a breaking point this morning. I started crying and screaming. My fists were pounding my pillows. I couldn’t hold it in any longer. I’m confused and struck with severe boredom of the routine I’ve fallen into. I’m in need of a change of pace and a healthier alternative than consuming calories to lift my spirits. Thankfully, God always seems to remind me it is coming. I want share a quote that did indeed make me smile:

“God helps us to do what we can, and endure what we must, even in the darkest hours. But more, He wants to teach us that there are no rainbows without storm clouds and there are no diamonds without heavy pressure and enormous heat!”-W.T. Purkiser

I love rainbows and diamonds…I know that.

On a sillier note (yes, I still have those on occasion) I also love music. I've been listening to this song by Martina McBride called "Wrong Baby Wrong Baby Wrong" (I'm a country fan). I've decided to look at MDS like an ex-boyfriend. I'm not sure why, I think it might have something to do with the fact that more people sing songs about boys than transplants, but regardless, it's a fun song. Here's a few of the lyrics: “Come on now. Everyone falls down. Everyone crawls now and then, then they get up again. You cry if you want to. That’s what we all do, but if you think you’ll never move on, you’re wrong baby."

But like the title of this post, let's get real, it's all about the climb.

The Line Graph of Life

2010-05-11T17:48:00.006-07:00

I feel like I'm in the montage of a movie. You simply see the characters live their lives while music plays; the plot unchanging. Ooo, better example: if we were to make a line graph, we'd be on a flat line. Nothing is changing drastically. Okay, I'm done making comparisons. My point is that there is nothing to yell from the rooftops or to cry about. My liver is improving at the same pace of my recovery; slowly. But; it's improving! The doctors print out charts to show me the course of recovery. They know me so well.

My Tacrolimus level dropped. It was nowhere near therapeutic Monday. I bet you can guess what came next; an increase! It didn't come as a huge surprise because with the change in medication; the Tacro will be metabolized faster. But it was still a disappointment. It also gave them a reason to schedule a lab draw today to re-check the level. I wasn't that upset; it gave me a reason to get dressed and somewhere to go this morning.

I've been fatigued and achey. My joints and back hurt for an unknown reason. But I'm pleased to report the burning from the Tacro has improved. We got the new antibiotic from the Apothecary shop today. I have to take it three times a day with a fatty meal (oh darn). Phone alarms are going off all of the time. I have to be up at 8am to take it, 10am is Tacro and other pills, 3pm the antibiotic, and 10pm Tacro and the antibiotic again. It's quite the medication schedule. My glucose continues to vary. It's still sky high. They don't want to resort to insulin, but we know it's an option if necessary. It's just one thing on top of another. However; my Mom and I were talking and it's all manageable. Yes, annoying, but minimal compared to what we could be doing. The best news is that we started to taper the steroids Monday. I am now on a 20mg dose twice a day! My entire family (and our grocery list) are thankful to be headed down on the prednisone.

We were sitting in clinic this morning waiting on labs and I heard the nurses talking about another little girl. They were discussing whether she needed an infusion or not? I shuddered. It took me back to when I would stand at my door and attempt to listen for my name and what my day would entail. There was a horrible feeling in my stomach, but my heart was filled with so much hope that I would hear that my counts had miraculously improved. I'd run back to the table when I heard Dr. Etzl's footsteps. Each time he'd tell me the infusion I'd need and the plan. I'd smile and say okay; crying on the inside. I haven't had a transfusion since March. It brings me to the quote "When the journey seems long; there's no better time to look back and see how far you've come." Although I feel like I can only look back so many times; each time I do, I realize I'm a little further. I've conquered one more day and one more struggle. And that in itself is enough to keep going forward (ice cream helps too).

Happy Mother's Day!

2010-05-09T13:47:00.003-07:00

Happy Mother's Day to all of my mom's out there. I love and appreciate each of you.

(My Mom is going to be very angry at me for the picture!) Love you Momma. Thanks for being you.

Define Busy.

2010-05-06T14:41:00.008-07:00

I've been complaining about not being busy, but I’ve come to realize the thing that upsets me is the lack of pleasurable things I do to keep busy. I had this idea (that I thought was brilliant) to make a pie chart and presentation to show the doctors how much free time I had. I had my business outfit picked out and everything. I sat down and looked at the numbers I had come up with. When did I have time for anything before? There is no way I fit sports, school, homework, and a social life in. I’ve come to find out maintaining your body consumes a lot of time and energy. The way I think about it is that the average teens job is to go to school. Right now, my job is to focus on my body. Needless to say I won’t be showing the doctors that chart.

We saw Dr. Adams Monday and she sensed my frustration. So of course we had to talk about it. The best way of explaining where I feel I’m at emotionally is that it is very, very slow process, but my health is improving. So many answered prayers and hopes. Boys, clothes, high school, driving, and sports will be there when I get better. It’s hard to accept, but I'm working on it. The stupid steroids like to mess with my personality; which I'm not digging so I'm looking forward to tapering those. It’s not that I just want to do one thing like go to one movie. I want it all back. And I’m learning to accept that right now that isn’t ideal. I’m in a good place though. I can honestly say that. Give me twenty minutes; it’ll change. Then I’ll change back. Then again. That's the beauty of steroids.

We are trying to make sure we differentiate between boredom and fatigue. We are focusing on filling my cup back up...with enjoyable things! I've been doing a lot of computer work. Chelsea turned sixteen and I planned her a birthday surprise. Plus, I got permission to venture onto the tennis court. It was the first time in fourteen months I'd held a racket in my hand. I had batting gloves to protect my hands and the first swing I missed the ball by about a foot. It was interesting. I didn’t know what to expect. I can’t completely straighten my arm from the infiltrate last June, but I wasn’t too bad. My feet were incredibly slow and I lasted for ten minutes of my Dad on the other side of the net hitting the ball directly at me. But it was a nice release of frustration. It felt natural.

Concerning the medical world my GVHD has been acting up. We’ve been moisturizing constantly…coconut oil, Aveeno lotion, Neutrogena oil, Tacrolimus cream, and steroid cream. You name it; I probably have to use it. It’s not too bad though. Might as well come out of this with well-moisturized skin! And when my Dad is willing to massage my feet every night; how can I complain? Monday, my glucose levels were sky high. I was informed that it wasn’t my fault. It is a temporary side effect of the steroids. I was so upset; “Don’t take my ice cream! It actually makes me happy.”, was the tune of my response. They said I could eat sugar free. Score! So I spent an hour and a half online looking for sugar free brands. Poor Mom, my grocery list was ridiculous.

Gamie took me to clinic today. It's the first appointment my mom hasn't gone to in fourteen months. That's crazy! She and my Dad left for the Arnett state baseball tournament. I wore my Wildcat shirt to clinic to show my support. Let’s go Wildcats!! I am home from clinic with news that my liver functions are on the downhill trend. They are slowly decreasing. No leaps and bounds. We are going to adjust one medication that is known for irritating the liver. We want to make sure we are treating the right problem. My Tacro level wasn’t therapeutic and the change in medication could lead to a faster rate of metabolism of the Tacrolimus. So that was upped ever so slightly. My other labs are looking beautiful. My glucose is still elevated, but was lower than the outrageous level it was Monday morning. All great news.

I wanted to end by saying thank you for being a part of my journey. Whether you listen to me complain and vent, pray for me, or even just think about me; I appreciate it. The love I’ve received is extraordinary. I am so thankful. We just stopped to get baked Doritos and I believe they are calling my name. Until next time…keep climbin!

I had this blog ready to post when I received the most wonderful news. My chimerism results came in..well part of them. My whole blood is 100% Ryan and 0% Carolyn. I'm sobbing tears of joy. Miracles do happen. I want to shout it from the roof tops. The sheer joy and relief that has been placed upon my heart tonight is indescribable. Thank you, thank you God!

Crazy Week

2010-04-30T18:28:00.004-07:00

It’s been a week full of extreme up’s and downs emotionally. Which I have the steroids to thank for. Or at least to blame. I have done more this week than I have in a while, but it feels like less.

We had clinic Monday morning. My magnesium level was low and Dr. Douglas claimed I had “earned” a magnesium rider. I quickly pointed out that I did nothing to earn this. They acted as if they were doing me a large favor in giving me this infusion. Needless to say I wasn’t in the mood for the small talk and frustration of spending my day there. But I did and felt better afterwards. My Tacro was upped once again and the steroid dose remained the same. The day brought no extraordinary news; good or bad. Which should be looked at as a major blessing.

Tuesday I woke up at 5:50am and made chocolate chip muffins. I was headed to get my license. My instructor’s name was Chuck and he willingly wore his mask and asked me about MDS during the test (which kind of worried me). I was close to asking him if I could just focus on driving, but refrained. Who knows what I actually said during the conversation. I was dealing with nerves. This was the first thing I had gotten to do, and I didn’t want to mess it up! I passed.

My first big drive consisted of dropping my Mom off at a store front and parking alone. It was actually exciting! We headed to Ryan’s game later that day at Yavapai College. I was feeling sheer joy of the open road, beautiful scenery, and good music. We arrived at the field and it was so windy!! Since when did Arizona turn into Chicago? It’s felt like the windy city since the day I was introduced to the idea of avoiding spores. I sat in the car watching the game from afar. Ryan didn’t pitch; so I didn’t mind. It was hot though! My lack of hair wasn’t bothering me that hour.

Wednesday, the adrenaline high from my license seemed to have worn off. I was in the mood to pick fights. I wanted to say something mean and sarcastic, but I didn’t. So I would try to hold my mouth shut and that came across as mean. Even though it’s nice to know it’s the steroids it’s really frustrating. Why would I want to be mean to my family who have been incredible and won’t say anything back? I can’t count the times they’ve had to bite they’re tongue so I don’t feel bad.

Thursday, I had clinic . I asked about Allan’s graduation and was laughed at. I told her I had been expecting no, but that wasn’t going to stop me from asking. We waited a significant amount of time for labs to return with outstanding results. My hemoglobin was a “manly” 15, ANC- 9,636, and WBC-10.7. My liver enzymes are decreasing, slowly, but decreasing. My tacro and steroid doses will remain the same as I am still experiencing sypmptoms of GVHD. I got in the car and was so thankful, yet I started crying. The health conscience, mature Carolyn needed to hear that my counts were improving. I needed to hear that my hard work and effort was all going to pay off, but the sixteen-year old Carolyn desperately wanted to hear that freedom was soon around the corner. At the rate we are going I am looking at about four more months of severe isolation. I know freedom will come. But it still hurts. People always throw the “but” word in. “But, Carolyn, this is just two years.” Or “Freshman and sophomore year weren’t that great anyway.” I need to experience that on my own and right now I don’t have the opportunity. I hear it from the people who are living their lives and their dreams while I attempt to sit on the couch and plan mine.

As I got in the car and said thank you because I truly am grateful for the beautiful blessing I’ve received, a second chance at life, I prayed for an open heart and mind. And a patient faith and love that would help me find myself in this world.

I assume by now that you know I’m a big fan of Oprah. Today, is “National No Phone Zone Day”. I just signed the pledge after watching her show. Just like the amount of donors in the national marrow registry this is something we have the power to control. You can join at http://www.oprah.com/questionaire/ipledge.html?id=4. A phone call isn’t worth a life.

MVD, Meds & Mailing Lists

2010-04-25T13:14:00.013-07:00

Our clinic days have been changed. We are so lucky to be able to switch our schedule when needed. Thank you Southwest Airlines! It would be incredibly difficult to make it to clinic every time the doctor declares it's necessary without you. Thirteen months later, I still find it remarkable how everything revolves around the hospital. I am so thankful to be surrounded with friends and family who are willing to drop everything for my health. I know that everyone is not that fortunate.

We have an appointment tomorrow morning at clinic. They want us to come more frequently because my levels are continuing to change. We are on the 5th day of the 25mg dose of steroids. Unfortunately we saw an increase in some of my liver enzymes. Not what we wanted, but when you remove medication it poses that threat. The other problem is that steroids also increase risk of infection. It's a double edged sword. Plus, my Tacro level was upped once again. Obviously it's disappointing because the higher you go the farther you have to come down. But I continue to remind myself that this is what is best. We want Ryan's feisty cells to get rid of all of the MDS. That's the logic behind the transplant! What I'm trying to say is that I'd rather have to deal with this than MDS. You can see my cheeks puff up a little. Just more to love. But I've lost three pounds. Go figure; eat more and weigh less. Beat that Jenny Craig.

I have some exciting news to share! They are considering letting me get my license. My permit is going to expire soon. I would have to show up at the DMV prior to opening, under no circumstances can I go inside, and lastly I will ask the instructor to wear a heavy duty mask and hand sanitizer. The reason I'm not yet jumping for joy is that I can get my license, but I'm not allowed to drive anywhere alone. Which is equivalent to um... having my permit? My Mom thinks they are budging. I don't consider it a huge push, but it's a start. I've been practicing my three point turns, parallel parking, etc. You think after eleven months with my permit I'd have it down! Otherwise; I'm trying to keep entertained with world studies, moisturizing, reading a Nicholas Sparks novel, avoiding germs, and of course; eating!

As I've mentioned over and over again; I am working on Ceci's Climb, the charity. If you would like to be added to the mailing list shoot me an e-mail at cecisclimb@gmail.com with your name and address. Let's prove to the world that it really is all about the climb.

Turn on the Radio!

2010-04-22T11:05:00.005-07:00

OH. MY. GOODNESS. Some much needed reprieve came this morning that I just couldn't wait to share. I'm at clinic waiting on results giddily typing away. As you can probably tell from my last blog I've had a rough week. I kept trying to plan something to make me happy or at least make me smile. I was clearly frustrated of this unpleasant state of mind, but nothing seemed to make me feel better.

Each day we drive to clinic we listen to 104.7 on the radio. The weekday DJ's are JohnJay, Rich, and Kyle. They make us laugh each morning talking about celebrity gossip, JohnJay's bike riding fetish, and more. I mentioned I had been working on the website for Ceci's Climb. It was suggested I get a twitter account for publicity. I had zero followers. Well, I decided I would tweet JohnJay because I had seen a guy bike riding in a wacky helmet and yellow safety vest in West Phoenix. He responded back and followed me. I was thrilled. I had a follower!! He made my night. I woke up this morning and turned 104.7 on to listen like usual. They were talking about silly things and right before commercial came JohnJay said he wanted to shout out "Ceci Christenson driving from Gilbert, AZ to Phoenix Children's. She is a listener and loves the show. Hang in there and good luck." How cool is that? Ryan had e-mailed him about me (what a good brother). I just thought I'd share my happiness with you this morning. It really is proof that what you do and say affects peoples lives in ways you would never expect. So, thanks JohnJay for giving me a reason to smile.

God works in mysterious ways!

Digging into Food & Emotion

2010-04-19T22:40:00.008-07:00

There is so much inside my little (bald) head. Thoughts constantly streaming, but not collected enough to write them down. I have struggled. The only way I can think of explaining how I feel is that something separated me from everything I know. Nothing feels right. I feel so far away from myself, yet strangely closer to who I want to be. It's like every time I see a glimmer of the beautiful road I will soon embark on something steps right in my path. I can smile and say I feel good. I can cry and say I feel bad, but it doesn't go away. It's strange, frustrating, foreign and heartbreaking. It's confusing and hard. People ask me to blog and how I feel, but I struggle to write anything down. I don't know how I feel and that makes it difficult to tell you. But afterwards I always feel excited that I could slow my head down long enough to write. Here's what came out today..

Steroids make me hungry. When I heard about this symptom I thought it would be no big deal. So, I'd be hungry. But it is embarrassing. I would go into further detail, but I need to go eat. No, just kidding. I've always been relatively good about portion control. I love to eat on and off medication, but I have never craved food like this. Not only am I hungry, but my sodium and glucose levels have been fluctuating. I'm supposed to stay away from a lot of dairy, sugar, and salt. What in the world does that leave? Pasta? Thank goodness my levels balanced out this week- I can just eat. Steroids aren't know just for the munchies. They have a lovely list of side affects including mood changes, acne, and puffiness. Hopefully, we'll skirt those issues. The plan is to remove them as soon as possible. And that's not just my plan. In this particular situation I happen to be on the same page as the doctors.

The "plan" is to taper steroids by 5mg a day as long as my liver enzymes are decreasing. Once we reach 25mg we will remain there for at least 4-7 days. From there, we will taper according to the Tacro and levels. We had to increase my Tacro today because we haven't reached a therapeutic level. I asked them why it was so important to add this medicine immediately. They informed me that as we do with any problem we add various medications. We conquer the problem immediately.

I still haven't processed the thought of not going to Allan's graduation. It's back there, but I'll worry about it when I get there. I haven't heard yes, but I certainly haven't heard no. The doctors have come into my life like new parents. And at sixteen that's not exactly the ideal situation. Five more adults telling you what you can and more specifically cannot do.

Yet, I'm holding on to hope. Trying to find something to make me happy. Working on Ceci's Climb seems to provide the most joy. It's something I so look forward too. And since the restrictions were reinforced it seems to be the best thing to do from my couch (look out for the website coming soon). Oh, and theres always world studies. I did some laundry today. I read my Bible and pray for strength and that itself seems to help. And last, wearing my clothes! I look forward to any opportunity to wear them. It's liberating to wear pants without drawstrings (aka sweats).

Okay, now I have to go get something to eat. And this time I'm not kidding.

Searching...for so many things.

2010-04-14T21:26:00.009-07:00

This is me, last March, throwing away my Tacro.

As I mentioned before; last weekend had been a hard one. Initially I thought my busy weeks had started to catch up with me. I soon found out Graft vs. Host is acting up. Which technically; we've been asking for. We want Ryan to fight MDS. I got news that Dylan had passed away on Friday morning. It's a harsh and tragic ending to this journey that so many families have to face. That same evening the Chimerism results came in. Both lines were up. The doctors are so pleased. We all needed good news. We needed to hear that MDS is indeed losing. Whole blood is 92% and T Cells were 84%. Isn't that awesome? We couldn't ask for better news. Honestly; it is such a blessing. When I say, "Go"; you say, "Ryan". "Go Ryan!" As we deal with side effects we realize that the Chimerism was the test we really needed to improve and GVHD will be manageable.

Although it provides comfort mentally; it doesn't seem to ease the physical burden. You can see the Graft vs. Host acting up in three different ways: skin, liver, and stomach. I have red, warm skin, elevated liver functions, and an upset stomach. I have headaches that affect my vision, dry skin and throat, I'm extremely tired, itchy, nauseated, and sensitive to smell. All of these could be symptoms of a)GVHD or b)an infection. They tested for infection on Tuesday and the results came back clear. Plus, all of my counts are holding steady. Today, after they decided a liver biopsy could be more harmful than helpful, they started me on high doses of steroids and Tacrolimus. I'm obviously not thrilled about the addition of meds. The plan is to hit hard with steroids at first and remove them quickly. The goal is to help my liver, but minimize side affects. My family has been warned that it will make me irritable and snappy, constantly hungry, and potentially puffy. Now they're really excited. Basically, it has similar side effects of recreational drugs. I am so thankful to have been able to avoid steroids for this long. But it's just beyond frustrating. I could see the doctors displeasure as she realized I quickly caught on to what adding these medications entails. It means losing the privileges I had just recently gained. I held back tears and reinforced myself saying, "It's just a step backward. I'll get through it." I guess I've come to the realization that life is hard. Extremely hard at times. My Mom is shocked its taken me this long to find that out. Obviously; I knew it was hard. But when you are reminded of it daily, and it's your life; it's nearly impossible to avoid the reality.

To be honest; lately, I've chosen to ignore text messages, facebook, and talking to people. Sometimes I find it easier to do so. It hurts to see what your missing, but it also shows that it's coming soon and knowing that is imperative for me. I didn't do anything until Sunday night when Ryan took me to a drive-in movie. I really enjoyed it. It was the new one with Miley Cyrus. She goes off on summer vacation and meets a boy. It's about the love shared between both a father and daughter and a boy and a girl. One of these days it'll be me laying on that beach. And one of these days I'll be standing next to Miley Cyrus while she rants and raves about Ceci's Climb.

This is me today; looking for my Tacro :)

A Quickie

2010-04-13T23:21:00.005-07:00

Oh, there is so much I want to say. However; it's getting late and I have to get up early tomorrow and head to clinic. I'll update you in full while we wait on labs, but I wanted to report that I have had a long weekend. It was both emotionally and physically long. Graft vs. Host disease has made me feel terrible. We went to clinic today and they barely let me come home. They were on the fence, but decided I would be fine overnight. My liver enzymes are up, but so is my chimerism!! And on that note...goodnight.

The Meeting & More

2010-04-07T20:32:00.008-07:00

Our meeting with Dr. Adams went extremely well. It lasted about two hours. She talked about the medicines I'm on, my broviac, and the plan moving forward. The words that seemed to stick with me the most went something like this, "Carolyn, you are doing extremely well. I am so pleased. But we aren't out of the woods yet." It summed up where I'm at in this point in time. Another chimerism was drawn. We are anxiously waiting for next Tuesday's results. It will alter the path we take moving forward. We are hoping and praying I am 100% Ryan. If I am not at least heading in that direction we will consider other options to help my counts. They say it isn't unusual to do so. But until I get those results I'm not going to worry about it. I'm tired of the what ifs. It's energy I can't afford to waste.

I got permission to start building strength. Thanks to Pro-Advantage I now have five exercises I perform twice daily. Yes; they're small, but still difficult for my fragile body. I'm not going to wake up one day with stamina; no one will. We have to build it. But the thing I'm most excited I got permission for was shopping. Well, not any shopping exactly, but one store. I can go to Anthropologie under the following provisions: I will wear a mask, arrive at the stores opening time, only go to one location, shower when I get home, and not over do it. Woohoo. I shopped. It was wonderful. It felt so normal and felt like I picked up where I left off. The girls who work at the store were so kind and understanding. It was just what I needed. A reminder of what I'm fighting for. It was refreshing.

However; I was declined permission to eat out and get my license. Getting my license isn't a matter of germs, but it comes down to the fact that I'm on medication that can alter the way I act. Driving without someone in the car watching me could be dangerous. And why do I need a license and a car insurance bill if I can't go anywhere? Eating out has to do with germs. You know those signs in restaurant bathrooms that read "Employees must wash hands before returning to work."? Well, let's just hope they're effective. It was disappointing and I was visibly upset. Even though I got great news that I was getting better and I was so blessed to be in the position I was I couldn't force myself to be happy. Sometimes I forget that it isn't the doctors that gave me MDS. They're not just saying "no" because it's shorter than "yes". Honestly it feels that way a lot of the time. Later on I realized that I am getting better . I'm even on the fast track compared to others. And I should be on my knees thanking the One who's making it possible.

That brings me to my next topic; Dylan. It's my hope you'll send lots of positive thoughts and prayers his way. He's a three year old boy who has MDS. You've probably heard my Mom and I talk about him. I had the honor of watching him sing and play at the clinic when he was first diagnosed. Anytime we mention him to a nurse or doctor we hear how "full of spunk" and "strong" this little fella is. Unfortunately; the last we heard, he was still in the PICU on a ventilator. We just celebrated my day one-hundred which happens to be his hundredth day in-patient. His first transplant was unsuccessful and his second match wasn't compatible. He's fighting stage four GVHD. Sadly for him he's a perfect example of the reason I started Ceci's Climb. He needs our love and more importantly our prayers.

I don't know if you've noticed, but I changed the countdown clock. I'm not sure if June 16th, the day it's counting too, is a big day. It's the date I will have been off of Tacro for three months. None of the doctors have told me I'll have more freedoms, but somewhere along the line I heard that in three months the effects would wear off. It would signify a stronger immune system. So, it's certainly important to me. I'll once again be practicing my MLK Jr. speech. "Free at last, God Almighty, I'm free at last." Until then; I'm just going to keep on keeping on. (And praying for that chimerism!! Let's go Ryan.)

Busy Bee (named Ceci)

2010-04-05T18:34:00.006-07:00

I've actually been busy for reasons not related to the hospital. Last week, I had been resting up for day one-hundred. Friday morning we went in for labs. We talked to Dr. Douglas and blindsided her with the question, "Could we go out to eat?". After a great debate with fellow nurses and doctors, researching the restaurant menu, and many weary facial expressions they said I could eat outside. I could have the chicken and baked potato. No salad, fruit, or ice. I finally decided it wasn't worth the worry. Every member of my family would sit at the restaurant smiling on the outside and fretting on the inside. I know, I'm loved. If the doctors were making such a big deal out of this; it surely wasn't worth it.The problem with making decisions post-transplant is the fact that they are all based on judgement. As we all know judgement and personality vary with each person which leads to inconsistent answers. I'm not saying this to shake my finger at PCH. I love that fact that they think I'm "too precious" to risk. I happen to feel the same way. But inconsistency is frustrating.

I came home from clinic Friday to a room filled with bright balloons decorated with the number one-hundred. Ryan surprised me. (Insert "oooo", "aww", or other approving comment here.) He's a keeper. He has been consistent.

I had a lovely night. Gamie, Aunt Jane, Aunt Ro, and Momma cooked the menu of my choosing. Plus my parents spoiled me by ordering my favorite cake. It's called the "Chocolate Tower" if that tells you anything. We sat on the back porch and laughed all night long. Being at a restaurant didn't cross my mind. I have been blessed with quite the family.

I ordered a summer romper and it arrived Friday. It's been my first clothing purchase that wasn't pajamas since March of 2009. It told you this was a Daddy's (or at least his wallets) dream come true. My body has changed so much, but somehow I'm back to the same size I was before MDS was even in my vocabulary. No smaller and no bigger (just less hair). Well come to think of it; less muscle too.

I decorated Easter eggs with Gamie on Friday. Saturday we made Mackenzie a bunny cake for her thirteenth birthday. This is where my type A personality becomes both a blessing and a curse. It turned out good and I had a great time talking with both Gamie and Aunt Ro. Poor Gamie, she's going to get sick of me soon. I've been spending a lot of my time at her house while my parents are at work. Plus you can only stare at the same walls for so many months. I watched her and Aunt Ro make Easter dinner on Sunday. So let's see: I spent Friday, Saturday, Sunday, and today at her house. Most of the time it consists of me eating and making a mess. I've gotten to hear lots of stories about Grandpa, but I've been quite the talker. Stick me in a room full of people willing to listen and I'm a happy girl. Especially when it happens to be my family.

Today after a quick appt. at the East Valley Clinic, Aunt Ro let me practice driving and parking. Hopefully, I'll soon be off to the DMV. Tomorrow we've got our day one-hundred meeting with Dr. Adams. I'll let you know how it goes. Needless to say; I've had a great week. And I'm looking forward to another good one!

Day Ninety-Eight

2010-03-30T23:23:00.010-07:00

Last week was extremely hard. It seemed like all of the bad and scary of this disease was behind us. We've always had the motto "two steps forward, one step back". I allowed myself to forget the second half of that motto. Last week hit our hearts hard, but today; I have great news. The "mystery virus" has fled the scene. It was just a hiccup in the scheme of things. My ANC is 3,250, my Hemoglobin is 11.8 from its previous 9.2, my platelets were 71. All of these counts are fantastic. The boost in my ANC was artificial from the neupogen, but is holding it's own at 3,250. Plus, my platelet count is "climbing" so to speak. If you haven't taken a look at the countdown clock lately you'll notice you can count the days on one hand. Friday is day one hundred. It feels like kindergarden again when we counted down to the hundredth day of school. But somehow; I'm more excited this time around.

I had some fun things to share I never mentioned last week due to the circumstances. The day I went into anaphylactic shock I met the UFC wrestler named the Big Show. According to Wikipedia he is 7' tall and 485 pounds. He was extremely sweet. He told us about his twelve year old daughter and he was touched when I introduced Ryan as my donor. It was fun meeting him, but I was glad Allan wasn't there because Allan probably could have taken him down. After all, he hit two home runs and a grand slam in the Arnett/Hammon game. Plus, Ryan got the win in his game! It's been a good week for the Christenson family. It's funny how drastically things can change in a week.

I wanted to say thank you so much for all of the comments. I read them each week with a smile on my face. I can feel the love jumping off the computer screen. I'm so thankful and touched to have everyone taking part in this journey with me.

Let's be Honest

2010-03-28T18:38:00.007-07:00

I've never understood the saying "drowning your sorrows away". Not until tonight that is. I had my headphones in, pajamas on, and oreos on the counter. I dunked those suckers 'til MDS and Phoenix Childrens seemed like a distant memory. No, I only wish. But I did eat the oreos and milk. And believe me, they were good. The thing I've learned about fighting a disease is that you can't let it get the best of you. It seems like it keeps you away from boys and drama (a daddy's dream come true), far from the mall and driving (Mom's relieved). But as I've learned these past twelve months it's a family's nightmare. Each time you walk through the hospital doors the memories flood black. It was a very rough week. I was going to be the first patient at PCH to remain out-patient; or so that was the goal. Instead, I was hooked up, poked, prodded, and tested. Each time the nurse grabbed my arm to check a blood pressure I'd grit my teeth and hold back the wise comment. I'd flash a fake smile when someone asked me how I felt. And I cried when I thought no one was looking.

I'm sixteen and I want to be out in the world. But yet I sit inside the hospital doors playing twenty-one questions about how I feel. Every question I'm asked either tears well up inside or I hold back a sarcastic comment. My face was constantly tearstained and I felt like someone was ripping me to pieces. I felt lost, angry, scared, mean, nervous, anxious, unsure, blessed, thankful, and fragile. In a single moment I could feel all of those emotions and all I could do was pray. Sometimes all you can do is pray.

Utterly Shocked

2010-03-25T18:20:00.013-07:00

There's a lot in my mind and a lot more going on in my body. But as I lay here and my Mom asked if I would write a blog, I told her I had other things on my mind. She offered to have someone else do it, but how could someone who wasn't even here write about it? So here's a recap of the last few days straight from the girl who lived through it.

The doctors prescribed neupogen because my counts were dropping. At one point my ANC was twelve. Neupogen boosts your infection fighting cells. It is the drug Ryan took to stimulate production before they harvested his cells. My ANC was at 189 after receiving the shot for 3 days. The doctors were unhappy with the small improvement. But it was an improvement; nonetheless. They decided to add additional doses on Tuesday. I went home that night feeling fine. At about 7pm I had lower back pain. We expected pain, but we didn't expect what came next. By 10pm I had taken two oxycodon, I was writhing in pain. Pain was pulsing from my tailbone to my head. The heating pad was helping, but failed to cease the pain. Finally, by 11:30 I was asleep. Only to wake up at 2am roll over and vomit. Thankfully, I fell back asleep.

I woke up at about 10:15 Wednesday morning. I limped to the bathroom in pain. I returned to my bed and had just enough time to vomit again. What a great start to my morning. Thank goodness my Dad rushed into my room with my favorite color of gatorade and the bucket of pills asking "which pills I wanted". We were at clinic by 11:40am to get one liter or fluids, IV neupogen, and anti-nausea meds. They admitted me at 5pm after a full day in the clinic because I had a low grade fever and high risk of infection. They went back and forth between going home and staying. In the end they decided I was "too precious" to chance. I was grateful for that plus they thought I'd be out in two days.

This morning I woke up to great news. My ANC was up to 1,332 and my platelets were at 88! Yes!! Unforutunately, my fever spiked and my blood pressure was very low. A new antibiotic was added. It's called Pentamidine. I was pre-medicated with hydroxizine and tylenol to be safe. I noticed I was cold and shaking a little, but I was soon asleep. I woke up shaking uncontrollably, cold, rashed, nauseous and I found it hard to breathe. Ryan called the nurse in while I slowly waddled to the bathroom (thanks fluids). I knew something was wrong. She came in and I immediately asked for zofran, hydroxizine, and oxycodon. She took my blood pressure, O2 stats, and temperature while another nurse brought in the medication. Next thing I know there were two doctors and two nurses by my bedside. Ryan was soothing me and holding my hand. I was in anaphylactic shock. It was a reaction to the medicine. Soon everything calmed down. I was on oxygen followed by a breathing treatment. Albuterol, Hydroxisine, Hydrocortisone, and Tobra were all added to my med. list. It was quite the afternoon. I'm still very sensitive and today's little stunt extended my stay for a good couple of days. Another reminder of how very fragile life is and how thankful I am to be here.

New York

2010-03-17T15:01:00.006-07:00

On my first day of spring break I woke up and found a letter with a "ticket" slid under the door. I was heading to NYC! Well, minus the plane trip and germy people. My friends re-created New York in my backyard. It was nothing short of amazing. It was a great way to spend my first day of Spring Break. I saw the Empire State Building, Times Square, Chinatown, Broadway, the Rockettes, the NY strip, and so much more. Oh, plus they brought a chocolate fountain, candy, and sweets galore! Let's just say I took a day off of the sugar free kick.

I've been resting and gaining strength after my big trip. Traveling really wears you down :)

A single picture couldn't capture it. Check out the video!

Anniversary

2010-03-16T23:25:00.004-07:00

I've had a great week. I woke up on March 13th, a year from the day this journey began. It feels like it was so long ago, but I remember it very clearly. I was crying while packing my suitcase. We were leaving the next day for Oklahoma. I didn't have much strength. I was extremely fatigued and when my Mom walked in my room I told her I just couldn't go. As it turns out the next place I'd be packing for would be the hospital. I had labs drawn the day before and the doctor called with the results. My hemoglobin was 6. We were immediately sent to the hospital, but first I had to take a shower (I heard the hospital didn't have good shampoo). "Ceci's Climb" was born. I’m happy to be sitting here today and looking back at how far I’ve come.

Something I've been really excited about is writing Oprah about Ceci's Climb. I feel so passionate about it. I've written way too many drafts and finally I think I've got my final draft. So the process begins. I sent an e-mail, next will be the letter, a video, etc until our cause is heard! But, if anyone has connections, please speak up!

We went to clinic today and actually left the doctor speechless. She looked at my chart and back at me. She didn't have anything to say. It was fantastic. We waited on my lab results to find that my counts were lower. It gave the doctor something to say. She said counts could fluctuate; which we already knew. It's always upsetting to hear you're counts are down. My platelets were 90, WBC-1.4, ANC-770, but my hemoglobin was holding at 10.7. We had to go over the entire list of things that could be affecting them. So much for speechless. They like to discuss every option. Bacterial, fungal, the meds. could have side effects, etc. It almost seems premature to hear "if it's this, we'll do this." My opinion is that we should just wait and find out what it actually is!

I'm officially off of the tacro(anti-rejection)! This is wonderful news. Not only can I sleep through the morning, but it is a big step to freedom. I take that back a HUGE step. First, I get off of the tacro. Second, say goodbye to IV fluids. Third, the Broviac comes out. And three to six short months later I'll be reciting Martin Luther King Jr.'s speech "Free at last, God almighty, I'm free at last." Well there's a little more to it than that but you get the gist. Actually, they told us that not many people are off of Tacrolimus before day one-hundred. I am so blessed. Makes you want to drop to your knees and say thank you. As a matter of fact, I did. The word I'd use to describe clinic today is bittersweet.

In the picture, I'm holding volume three of my file. Hopefully, the final volume.

Humble Pie (Sugar Free)

2010-03-09T20:35:00.008-07:00

Well, it’s been an entire week since I’ve seen the brightly colored walls and inhaled the aroma of PCH. Which is a combination of alcohol wipes and medicine. I didn’t miss it for a minute. Well, it has cut down on my social outings.

As much as I know I should be focusing on the present my mind can’t help but wander into the future. I’ve been doing what I do best; planning and organizing. Planning trips and a lot of work for Ceci’s Climb. I’ve been applying for grants, writing letters, starting the website, etc. It’s something I’m really excited about.

Something I’m not necessarily too excited about is world studies online! No, it’s not that bad. I’m just adjusting to school again. It’s a great step forward. Plus, I’ve been working on those thank you’s. Sorry, I promise they are coming! I really, truly am thankful!

My counts were all hanging on. No star and no failure today. My hemoglobin was 10.4, ANC-1,740, WBC-2.6, and Platelets-117. They’re looking good! Even my glucose (sugar) was in a normal range. The only thing was my creatine level was slightly increased. A simple fix-drink more.

The better I feel; the worse it is to sit and wait. And that was definitely apparent this week. So technically, it’s a good and bad thing I’ve been bored. The doctors sensed my boredom. They say it happens to all of the kids. They told me they had given me permission to go to Ryan’s games. Although I do really enjoy the games, I had to remind them it was a once- a-week affair. It’s hard to explain, but sometimes they think they are giving you a mile when really it’s only an inch. But an inch is still an inch! I guess what bothers me is that I can’t have it all back. I know waiting will only make it that much sweeter, but it doesn’t make it all that great in the meantime. Haha suck it up, Carolyn. They asked me what I wanted and I said “everything”, I don’t want to do something to harm me, but a little room to move would be nice. So they promised me they’d think about it.

I was feeling bad for myself until what came next. Baby Walter, the 8 month old boy who also had MDS, passed away last night. It was a moment of realization that my “problem” was petty. I know I’m allowed to complain but I am so blessed to be alive and thriving. Who cares if I’m not out every Friday night? I’m surrounded by my family and the people I love. And I am so thankful for that. Whether you’re eight months old, sixteen, or sixty, life is precious. So thank you baby Walter for reminding me.

A fellow fighter.

Day Seventy. <----WOW!

2010-03-02T21:33:00.004-07:00

We went to clinic today and they removed the final stitch from my left shoulder-pain and blood free thanks to those platelets which were at 128 today! We threw lots of questions at our PA (physicians assistant). When could I go get new glasses? My eyesight has markedly decreased. I can be sitting at a stoplight and unable to read the street sign. (Don't worry, no driving until I get glasses! You are still safe to be on the road.) No contacts for awhile because they can lead to infection. She said my eyesight would continue to change even 3 months from now. When are we removing the Broviac? She said as soon as my body can handle enough magnesium and when I am able to drink enough fluids. Plus without need of an infusion. When will I be off of the tacro? Hopefully by the middle of this month. When could I see the dentist? When we remove your Broviac and put you on a special antibiotic. When can I go shopping? Yeah, I didn't get a very clear answer. She just laughed. Lots of q&a. I suggested she take me off of the tacro, fluids, and magnesium today and remove my Broviac tomorrow. I was problem solving for her! But she didn't go for it. I got the "this is best for your body spiel" and "what could happen if we did that" talk.

The good news is we are lowering the Tacro to 0.6 today. The fluids were cut in half along with the amount of magnesium. All heading in the correct direction. See my persuasive argument wasn't wasted!

I have been on a low sugar diet for the past week and a half now. Basically no sugary candy, gatorade, soda, etc. It's honestly not as hard as I expected. Granted, I do have sugar free candy and lots of carbs. I cheated for the first time today. Ryan brought me a piece of chocolate cake. That Ryan!! The only thing about the diet restrictions that has gotten to me is my craving for Buffalo Wild Wings lately. I wasn't even a huge fan before, but it sounds so good. The boys ordered pizza and wings. I ate Totinos frozen pizza and pouted for the rest of the night. But I'm over it and excited now. I hate to admit it, but without cramming my face full of ALL of that sugar; I feel better. My body feels more steady. I don't have random bursts of energy and then crash. It's a nice change.

So far so good with the Lupron situation. I'm due for my shot next week, but with my platelets almost at a normal range I'm hoping thats something I can go without.

Probably the best news to report is that my next appointment at clinic isn't scheduled until next Tuesday. We can always walk in and have an appointment any day. Plus, my Mom gets a little nervous unless I have labs drawn twice a week. I understand, it's scary trying to decode what your body is saying. But we better get used to it. Seven days free of that place sounds wonderful.

Oh, and the picture is of Allan and I doing yard work. Well, okay, Allan working and me watching. But I did hammer a few times. We fertilized Grandpa's fruit trees.

Got platelets?

2010-02-26T11:44:00.012-07:00

I do! 126,000 of them actually! That is the highest my platelets have been in a long, long time. We don't know how long exactly, it could be years. We will never know how long my counts were affected by MDS. But something I do know for sure is that I'm happy they are improving. This is the closest I've been to the 150,000 "normal". I told one of the doctors and all she responded with was, "Are you serious? You are lying. No way!".They were very excited to say the least.

The other counts were holding. No improvement, but no decline either. My platelets are in the spotlight this week. Can't wait to see what's shining next week!

Another highlight of my week was laying in my bed on Tuesday night to realize I wasn't collapsing. I wasn't exhausted. Yes, I was tired, but healthy people are tired too. I started to wonder if the exhaustion would ever go away. I wondered if I would ever feel energized again. God answered in a big way. I was laying there crying. The tears were happy. I was crying because I was only tired. My body didn't ache of exhaustion. My head didn't hurt and my legs weren't heavy. I was only tired. I'm healing. It was an incredible thing to realize and be aware of. One of those precious moments I will always treasure.

Earlier that night, I went around the house asking everyone the scariest and happiest moment of the past twelve months. My Mom cringed as she relived the code. Looking at what we have overcome is amazing. In the last twelve months I've been diagnosed with six different diseases. I've spent most of my days at PCH. I've coded. I've had a transplant. I've lost liters of blood and tears. My hair is gone and I've been poked and prodded. I've got a scar from each of the five biopsies and three surgeries. Over 70 units of product have been infused into my 5' 4" frame. I've been nauseous, received more drugs than you can imagine, and endured numerous side infections. I've been sick.

But in the past twelve months I've also overcome my fear of needles, learned to enjoy living in the moment, and I've gotten to know so many new people. I've changed my priorities and started a charity. I've gained confidence and appreciation. My relationship with each of my family members and friends has deepened. I know that whatever I want to do in life, I can. No matter the odds or the people who doubt me. I've gained perspective. I've lived and I've been healthy.

The moral is that the lessons I've learned will stick around longer than the scars will. I've been so blessed to have a second chance to live, and I plan on enjoying it.

Unexpected Visit

2010-02-22T20:04:00.006-07:00

We had an unplanned visit to clinic today. Don't worry, no emergency. My allergies appeared to be acting up. I've been a mess; sneezing and puffy. The doctors decided it would be best to do a CT scan to be sure. It turns out I have a sinus infection. It is not contagious and a mild case. They started me on a Z-pack of antibiotics to be safe. They say it could come from a variety of different things. Anyone could have caught it with or without a suppressed immune system.

Every once in awhile I stand up to find my vision turning black. I never fall. I just grab on to the nearest stable item. It happens a lot less since the transplant. At first, we attributed it to low hemoglobin. If your hemoglobin is low there is a lack of oxygen in your body. You only see symptoms with a hemoglobin around 8. And my hemoglobin is 10.3! So we are trying to get to the bottom of the problem.

We are also still trying to get to the bottom of the fatigue. The adrenal glands test came back with normal functions. Yet, I'm still tired. They're hoping that curing the sinus infection will help the fatigue. Plus, they added more fluids because I had only been reaching 40oz a day (slacker). Keiry also mentioned I could be dehydrated. Sounds crazy, but my body needs so much fluid to maintain itself. We're plugging away.

My glucose levels are elevated. She said it wasn't the amount of sugar I was eating that was the problem; it's the way my body breaks it down. During the transplant the break down process could have been damaged. My body is trying to do a lot. So, guess what they decided to do? Put the girl who LOVES chocolate on a no sugar diet. Obviously, you can't cut out all sugar because it's in almost everything. So, we are cutting all chocolate, candy, juices, Gamie's homemade desserts, and so much more tonight. If I get a little edgy, blame the doctors. Plus, we are cutting dairy products because they are hard on my stomach. So basically, that leaves whole wheat pasta. However; this could be another clue to the mystery fatigue. High blood sugars most well known symptom is fatigue.

These issues are all small and manageable. Now, to the good stuff. My counts were as follows:

Hemoglobin:10.3

White Blood Count:3.0

ANC:2040

Platelets:94.

As of right now, I will not have a Lupron shot in March. What a huge blessing! My platelets have to remain above fifty for that to happen. I have faith in them. Plus,my tacro level has been dropped to 1.2ml from it's previous 1.8ml. We are most definitely headed in the right direction.

Read this. Trust me.

2010-02-19T18:02:00.010-07:00

Obviously this wasn't a recent picture. My hair didn't grow that fast.

Hmm..who wants to hear some good news? Because I've got quite a bit to share! Let's start with Thursday's appointment. My counts are improving! My hemoglobin had increased to 10.1 and my platelets were at sixty-one from their previous forty-three. This is the first time my counts had improved on their own in the past 12 months. That means no transfusion or drug to assist their production. Ryan's cells and God's grace pulled this off. One of the beloved clinic nurses ran into our glass room and delivered the great news. Mom was in tears. A constant stream of emotion filled the room. After, we were visited by Dr. Etzl and various other doctors and nurses who congratulated us. Everyone was extremely pleased. Kiery said ideally if my platelets remained at thirty and my ANC at 1,300 for a year she would have been happy. Well, we have already passed that!

The only downside to Thursday (if you can even consider it a downside) would be that one virus level was elevated. It was a small increase. The level was in the nine-hundreds. Our doctor was not worried. The only thing we will do is monitor it closely for an increase. If it approached around five-thousand we would consider starting a stronger medication. We got news early this morning the level had dropped back down to zero. Now, we officially couldn't have gotten better news.

But yet, we did. They called this evening. The chimerism results came in! Like I mentioned before, all we wanted to see is improvement. Well, we got it! Ryan was 57.5% in the T cells and 94.5% overall. The doctors were pleased with these improvements also. The previous numbers were T Cells 41% and overall 89.5%.

Just a reminder (mostly to remind myself) that things can still change. Numbers can still fluctuate. We have to keep on top of things even more now. No rules are removed. However; we are that much closer. This is one big, huge, gigantic hurdle we can say we've overcome! I can hear the chorus singing..."Hallelujah" and "It's a Raining Cells."

Terrific Tuesday

2010-02-17T10:22:00.013-07:00

The test is officially out of my hands (hah like it was ever in my hands). The results should be back by next week.

I've had a few symptoms of the flu lately. They did a swab to evaluate what might be wrong. Thankfully, the swab came back negative. They are attributing the symptoms to allergies which I've never had before. Allergies are a small price to pay for uhh living!

We are still having trouble balancing the magnesium. I will remain on the IV fluids with Mag. until I am off of the Tacrolimus. Tacro is extremely hard on your kidneys. It excretes magnesium at a faster rate than normal (hence the need for magnesium). The good news is that we are approaching the time to start tapering off the Tacro! That means my skin will be less sensitive, less need for fluids, and my kidneys won't be stressed. Plus, the best part, the sooner the Tacro is removed, the sooner I get to go in public!

I have been very tired lately. They have been using the process of elimination to determine the cause. First, they claimed the Mono was the culprit and then we tried adding a pill to counteract the Lupron shot I receive every 3 months . However; I'm still tired. On Thursday, we are going to check my adrenal glands. Stress or steroids can harm the glands which produce adrenaline. Plus, the allergies could be causing the lack of energy. Last, the doctors continue to remind me, "Carolyn, you had a transplant in December. Your body can't heal in a day. We killed your entire immune system. Give it time. Rest and heal. Full recovery can take 9-12 months." It's nice to know that something isn't necessarily wrong and it's normal.

Yesterday, one of the nurses asked me if life was back to normal. I felt guilty. The look on my face was sheer disbelief. Was my life back to normal?! Is she crazy? Well for the first time yesterday, I got a taste of life outside the hospital. I did three things in one day! Clinic, Ry's baseball game, and dinner with the family. I didn't have to sit in the car! The wind was minimal. I wore a mask and sat down the left field line. Aunt Ro, Uncle Rick, Uncle Ricky, and Matt were in town. Plus, our friend, Janet even came to watch. We were so excited to watch Ryan pitch only to show up to a forfeited game. Two of the opposing players and a coach were ejected before the game even started. After a lot of yelling and heckling the team refused to play. We later learned the visiting team had severed ties with the umpire the night before. South Mountain eventually played an inner squad game (played each other). It was one crazy day. Later that night, we ate at Gamie's house. Chelsea came over and I actually felt like the teenage girl I am. Let's just say I slept very well last night.

When this journey started my goal was to get back to "my normal life". I now realize I will never go back. I've changed. My life has changed. The life I have in the future will be that much better, and that much more worth it. I'm not saying there won't be obstacles. I guarantee there will be, but it feels good to think this one will eventually be in the rearview mirror. Praise the Lord that I can talk about my life in the future. I owe all the thanks to Him.

And thanks to you for all of the support :)

Love

2010-02-14T17:19:00.007-07:00

"I love you." Mmm. It's a three word phrase we don't say enough. I don't understand why people don't like Valentine's Day? It's not just about a boyfriend or a girlfriend. It's about loving those in your life. Plus, pink-what a good color! Anyways, I'm done preaching.

The Chimerism test has been moved to Tuesday for reasons unrelated to me. Actually, do you want to know the truth? They gave away my time slot! Talk about not being loved on Valentine's Day :) In actuality they just booked these appointments unaware it was my "usual time". I'm hoping my stem cells are "feeling the love" today. I am so excited for this test. Well not the test itself; but the results. I don't want to put too much emphasis on the importance of this test. It determines the speed of my recovery. It's not the end of the world if it isn't up to par, but it will be disappointing. We are looking for both the T cells and the the overall to be trending upward. Let's flash back, the results on Day 30 were: T Cells-40% Ryan, 60% me and Overall-89% Ryan, 11% me. We want to see all Ryan by Day 100 atleast (if not sooner). There is a lot of pressure on Ryan. Clinic on Tuesday at 10am we are asking for a shut out. Later at 3pm I'll be his biggest fan at South Mountain while he's on the mound.

Butterflies

2010-02-10T14:00:00.006-07:00

Thanks guys^

Well, the last few days have been uhm...interesting. I'm re-learning how to drive so I can EVENTUALLY get my license. It's a jolly good time. My parents have been calm and patient. They tend to brace the dashboard, but they understand it's a learning process. I drive slow and I'm cautious...so the next time you are in a hurry stuck behind a slow poke, take it easy..it could be me :)

Medically, I couldn't be better. Everything is going great. We got the Tacro and Magnesium levels right and the GVHD is under control. We are thankful. So, so thankful. We have a big day coming up! The chimerism test is scheduled for Monday. This will dictate what the next step is. I'm nervous; here come the butterflies again. We have no control over the tests. We don't have control over much, and that itself is scary. Good thing we know who does :) Hopefully we'll have results by next Friday!

RPC pitched yesterday. I got to sit in the car in the parking lot, but it was fun nonetheless. The darn scouts were in the way, but that's okay we want them to have the best view. I get butterflies when Ryan pitches. I'm a nervous wreck. So I must be 100% Ryan by now. My Mom takes pictures and loads them on the computer. Over the years my Dad taught me some of the mechanics and he lets me critique the pictures before he says anything; it's kind of fun. But I won't be a pitching instructor anytime soon.

Clinic tomorrow. Tomorrow is Day+50. Half way to 100. Wow.

Day Forty-Four.

2010-02-05T18:06:00.007-07:00

So, my Mom thinks I have gained Ryan's procrastinating trait. Sure, I'll let her blame my late blogging on Ryan. Well, come to think of it, I better be careful, he's played a big role in this journey!

My counts are soaring! Well maybe not all of them, but my ANC and WBC's are. My white blood count is 3.5 and my ANC is 2,600. My EBV tider is back down to zero; which means I don't have Mono. Actually it's been zero since last Thursday. The EBV comes and goes. For instance Monday, Jan. 25th my EBV came back at 4,300. Thursday, Jan. 28th it was back down to zero. The doctors say Ryan is working really hard. He is fighting off the EBV and producing new cells. It continues to remain at zero; mono free! However; they said if the EBV flares up I will get the chemo again.

Both my hemoglobin and platelets have been dropping slowly. Yesterday morning the doctors told us that "not every cell line could be a star at the same time". My bone marrow is cranking out white blood cells and filling the marrow, therefore leaving less room for RBC or platelet production. I've had small headaches lately that they are attributing to the chemotherapy, but to be on the safe side they gave me platelets. They also gave me Hydroxizine which induced me into a 6 hour nap yesterday!

I was sent to a dermatologist this morning for an irritated mole. They weren't too worried, but decided to do a biopsy while my platelets were high. I had no idea what was going to happen. We walked in, they looked at the mole, decided to biopsy it, and the next thing I know we were finished. It isn't the same as a bone marrow biopsy. I was awake, my shoulder was numbed, biopsied, and stitched. Easy enough, but I was a little nervous...shaking nervous to be honest. I was unsure of how the process worked, but soon after realized anticipation was worse than the actual procedure. We also went to clinic today, only to be sent home because they said I looked to good! Great day :)

Lately; I've been trying to work towards my goal of drinking eighty ounces a day. My appetite has been hearty and to prove it none of my jeans fit! It's only day forty-four and I am so thankful to be feeling and doing so well. God just continues to watch over us and we are so thankful for that. We are counting our blessings.

Small Bump

2010-01-31T20:06:00.010-07:00

Every Monday labs include a weekly check for any viruses. We got news early last Friday morning that I tested positive for Epstein Bar Virus (also known as Mono). We went into clinic asap that morning to start Rituxan. Rituxan is a chemotherapy drug. They want to treat the virus very aggressively to prevent it from progressing. I didn't catch the infection from anyone. My immune system is just so unprotected because the transplant knocked out my bone marrow (which was the purpose). However; it wipes out all childhood immunizations as well. I am a candidate for mono, MRSA, chicken pox, etc. They are all diseases that lay dormant in the body and can flare up. That is why we have to be so cautious and clean. I am not contagious because other than low counts, an elevated Epstein Bar level, and fatigue I am not symptomatic. The chemo makes me achey and tired. I told the doctors it was a good thing I had so much practice resting. It's treatable and has managable side effects! The mono is only a small bump. Thankfully we caught it early!

I will recieve the chemo once a week as of right now. Depending on the latest labs that time frame could change. I have a scheduled CT scan tomorrow to be safe.

Since I have been at Gamie's house I've heard quite a few Grandpa stories. It's been fun to have this time with Gamie who I haven't been able to actually sit down and talk to since last March. The construction on our house was completed! One last quick clean and I'll be heading home soon. Gamie asked me what I was looking forward to most about going home. I told her no offense (which usually means the next words are offensive) but my shower head is better. Honestly, I miss that most. I have a hand held shower that Uncle Vaden recently bought and installed so I can manuever it so I don't get my Broviac wet. It is awesome. So Uncle Vaden, if you are reading, thank you! It makes showering less of a chore! Well, that and my bed! There is just something about home. But without a doubt; I will certainly miss Gamie's company and being Chelsea's neighbor!

This week was a big week for me. I got my first official Ceci's Climb check. I am announcing the start of Ceci's Climb, the charity. My goal is to be an advocate for Be The Match. Eventually; I want to be a spokesperson encouraging people to join the registry. I want to help those who have to deal with MDS and cancer. I don't have the resources to find the cure to cancer. But I certainly have the ability to help those who have it. It has become clear that this is my dream and my desire. Obviously I won't be in public anytime soon, but from the comfort of my couch I can lay the groundwork and do the research.

Lets talk about my hair. Let's talk about the lack of it. I'm just going to say it. It's not growing; it's stuck. I have peach fuzz currently. So technically I'm not bald, I'm merely fuzzed. My hair started to grow back rather quickly after I lost it. Now, not so much. That's okay, less work! (Yeah, I'm going to keep telling myself that.)

Working Hard or Hardly Working?

2010-01-27T18:06:00.009-07:00

Sorry I haven't blogged in awhile, Gamie has put me to work. She makes me do all of the laundry, dishes, vacuuming, and daily chores. She's tough. NOT! Gamie has waited on me hand and foot since I've been here. I've been laying in Grandpa's favorite leather chair. When I'm not in his chair, you can find me asleep or with my head in the freezer grabbing an ice cream bar. I actually went outside and played with Tylie yesterday. I wore gloves and a mask. There was no petting or loving physically, but we played fetch. She retrieved the ball again and again. I had a great time, but I was exhausted. Ask my Mom and she'll tell you I'm just a drama queen.

Since fast food and eating out are a no-no; we've been cooking at home. Gamie's home cooking, mmm, doesn't get much better than that.

Our house is still "under construction". It was a process of elimination to find the leak. With the big storm that hit Gilbert the water runs down a pipe off of the side of our house. The run-off happens to land in one spot. The water leaked through our stucco. They are re-stuccoing tomorrow. We were so blessed to have caught it early. That is the sole reason we are mold free. After the new pad and carpet is laid down I have to wait 72 hours until I can move back home.

My mom had a meeting with my school counsellor. The goal is that I would return to school caught up my junior year. I will be taking online classes for the remainder of my sophomore year. The school couldn't be more accommodating and understanding. Everyone has gone out of their way to help us. Thank you GHS. Go Tigers!

I'm only on 1/2 liter of fluids daily. My anti-rejection is still under control. Each day we are just more and more thankful to be home and doing so well. The doctors are so pleased with my progress. Praise the Lord for the healing process! I cannot say that enough.

A Bloody Good Day

2010-01-23T22:12:00.003-07:00

I want to remind everyone to donate blood. You can donate up to 3 times a year! Most likely the blood won't go to me, but it makes it available. Hopefully, I had my last transfusion, but that makes donating blood no less important. You are helping someone else's niece, daughter, friend, or cousin. You are making someone elses climb a little bit easier.

There was a United Blood Services bus in our neighborhood today. All of the time slots were filled (actually overbooked) thanks to Chelsea and our wonderful neighbors. Forty-nine units of blood were donated and eighteen donors added to the registry. What an amazing honor! Thank you. If you didn't have a time slot you can go to London's Run at Schepf's Farm on January 29th OR to your local UBS office anytime to donate. Go to www.bloodhero.com to schedule an appointment.

The video includes bits and pieces of todays excitement and the generous people who came! I bet you can guess what song I chose :) Share the love. Share the blood.

Day Twenty-Nine, Hoping Ryan's Blood Wins Not Mine.

2010-01-21T13:53:00.009-07:00

Today is day 29. They sent out a Chimerism test today. The results won't be back till next week. This test is performed every thirty days until day one hundred. It determines how much of the blood in my body is Ryan's and how much still belongs to me. We are hoping and praying I am 100% Ryan. The doctors told me this was a fight I should let Ryan win :) I'm waving my white flag (to Ryan, NOT MDS). But I could still take him in a fist fight. If it isn't 100% they will manipulate meds to get it where it needs to be.

Here are my counts from today's appointment:
WBC-3.2 (hasn't been that high since March)
ANC-1,952 (hasn't been that high since March)
Hemoglobin-13.3 (with help from Monday's transfusion)
Platelets-44 (haven't held this high since March)

I could go on and on about the excitement of getting better. As a matter of fact, I just might. The feeling I get is so richer and deeper than anything I could have imagined. It's so rewarding to know that I've worked so hard to get to this point. You know, I think people may know what they are talking about when they say hard work pays off. There were and will be bad days, but my Dad has always told me, "Let your highs be high, and your lows not too low." So I'm going to enjoy it. The days I struggled and my life was in God's hands, when my faith was the only thing keeping me going, and every single minute of pain makes these days that much better. My cheeks hurt from smiling and I wouldn't be surprised if tomorrow my voice is hoarse from blasting "The Climb" on our way home from clinic.

Not only were my counts looking superb, but they took me off IV nutrition(TPN)! The best part was I didn't have to beg. I didn't even ask. It was their idea! I am only on sugar water for 12 hours a day. Some of the medicine can have harsh effects on my kidneys so they want to continue to give me a large amount of fluids at least through the weekend. This is all great news. It's one step closer. They are very pleased with how well everything is moving along.

We are most definitely speeding along, but we hit our first speed bump. We were loving the outside weather and rain until it came inside. There is a leak somewhere in Ryan's room. Mold is dangerous to anyone, but especially to someone with a low immune system. It can easily work it's way into the lungs and cause big problems. We are thankful we caught it early. Since I am not allowed to be around construction (torn up carpet) or mold (wet carpet) which are both in Ryan's room I am typing this from my new bedroom, our car. No just kidding. I'm waiting in the car for my Grandma's house to be deep cleaned. Boy, am I a lot of work! I'll be spending the next few nights at her house until the problem is resolved. It is the safest and doctor approved way. Good news is-the doctors say they'd rather have to fix the house than me! My new roommates and I are pictured above :)

Now more than ever, "I can almost see it. That dream, I'm dreaming."

Homecoming

2010-01-19T23:43:00.004-07:00

Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. Home. If you haven't caught on, I'm at home. I am typing this blog from MY couch while watching MY television. All I can say is that OUR house is so much better than THAT hospital room. Okay, I'm finished with the capitalized pronouns. I got home and walked around the house. I have walked more in the past two days than I did in all 5 weeks I was there. All I could say was,"Ahh. Home." My parents were laughing at me. I was a little hyper from excitement. We all sleep a little bit better. I'm tired because I won't let myself nap. Being at home I just want to be awake and walking around, but I have to allow myself to rest.

Sleeping in my bed was so nice not to mention good on my back. I helped my Mom unload groceries today. My ability to move around is better for a couple of reasons: there's more room to move, energy from excitement, and I had 2 units of RBC's on Monday before we left. We are hoping that was my last ever transfusion. If it's not that's okay because we know it's one of the last.

We had a big celebration before I left (and the nurses probably had one after). The picture was taken Monday at 2:00pm when I left PCH. My team of nurses and doctors made a "finish line". I actually ran through! Yes, I ran, not walked! Speaking of celebrations, there was a welcoming comittee lined up in my driveway. The balloons and "It's a Boy" sign were a nice touch. Now people are going to think I had a baby and a transplant. For the record, a transplant was plenty. There was clapping and cheering. I'm glad it was from a distance so you couldn't see my tears. I was just overwhelmed with excitement and love. You guys are the best. I don't tell you that enough.

We went to clinic today. It was only a lab draw. It was a quick appointment that lasted an hour. Apparently when you have a transplant you get the VIP treatment. No sitting in the waiting room and I wear a special mask. Plus I had a sign on my room welcoming me back to clinic. The first official appointment will be on Thursday and will take a good 3-4 hours.

I feel like since I've been home I've already started to eat and drink more, but I'm still working on those 2,500 calories. Maybe it's because I don't want to be on TPN at night. Being hooked up at home is better, but still brings the hospital environment here. Let's just say that on Thursday I'll be on my hands and knees begging them to take me off. I want to do what is best for my body of course, but I won't be sad the day the wires go. I've found I have to eat slow and that cold drinks bother my throat. Meat is still hard to eat, but slowly I'll continue to readjust to a normal diet.

I took my nightly medication (which thankfully there isn't a lot of ) and I'm heading to bed. I'm still so thankful to be home and engrafted. Every so often I'll randomly remember, and each time I can't help but smile and say a little thank you prayer. My advice tonight (take it or leave it) is to enjoy your own bed, your family, and your home. We don't appreciate what we have enough.

Keep on moving. Keep climbing. Keep your faith.

Keeps Getting Better

2010-01-16T13:12:00.005-07:00

I am ecstatic to report that yesterday was the best day of my life (to date). I can't think of another day that could top this. I woke up feeling like I'd barely slept when the doctors came in. We started discussing like we normally do...keep drinking, switching meds, etc. However; after that, Doctor Salzberg announced that my platelets were OFFICIALLY ENGRAFTED. To be "officially engrafted" they have to hold consistently for over 5 days. I have gone without a platelet infusion for 8 days. Shortly after, the doctors reported that, "Oh, so have your red blood cells." ALL THREE OF MY CELL LINES HAVE ENGRAFTED. I wasn't aware of the qualifications for being "officially engrafted" because I thought that it would be a long while for that to take place. I was so elated to hear the news yesterday. Now, this doesn't mean I will never have a transfusion again. They warned me that I should not feel defeated if another infusion was the case. My counts can and will still fluctuate up and down. But this is a huge step! I was giddy with excitement yesterday. All I could do was pray and thank God for this HUGE blessing that I am oh so thankful for. I thanked Grandpa,who we all know, is in the passenger seat, and I thanked Ryan Paul. He won't take any credit, but I say he's earned some. Not only did I receive that news yesterday, but I was completely unhooked for the first time in 31 days. Plus, we are still on track for Monday! What a day.

Thanks to so many of you who have helped power clean my house before my homecoming. I am so excited not only to go home, but to a home that is clean. To give you an idea of the depth they went into while cleaning...they cloroxed every wall, scrubbed the tile with a tooth brush, and moved all of the furniture out to reach every spot. Not only did they do this to my room, but the entire house. Mom says they are giving me every chance to stay infection free.

We are continuing to prepare for Monday. Slowly, the pink palace has begun to lose its decor each trip someone heads home. I had my last physical therapy. The Apothocary store brought my medications for home. These are all signs that we are moving in the right direction.

I will go home on 12 hour nutrition through my Broviac. I am not yet able to meet the 2500 caloric need. (Pshh, before that was easy.) It won't be too bad though. I will only be hooked up overnight and even less than that in the near future.

I know this journey isn't over, but boy does it feel good to be sitting where we are. Only 10 months ago everything seemed to go so wrong. Now, it's all going so right! I am so thankful for that. I'm thankful for my family who have been there every day and night. I am so thankful for you, all of my friends, who have given me so much inspiration each and every day. There will be an obstacle(s) to overcome, but sitting here and looking at how far we've come, I know we can handle it.

A Little Bit of Everything

2010-01-13T11:28:00.010-07:00

Woah. It's been crazy. I feel so busy. Trying to stay rested yet active is more difficult than I imagined.

Thank you for all of the support. There's been an outpour of love. I got to watch Grandpa's funeral (live) online thanks t0 Sun Valley Church. It was almost like sitting in the back row. It was an absolutely beautiful service. Grandpa's heart of gold and love for God were made clear. I am so thankful and happy I got to be a part of it. To anyone who was a part of the remarkable celebration of his life thank you again for your generosity. Happy 77th birthday GP.

The doctors say everything is going extremely well. It's so exciting to hear yet almost scary in a way. There have been small rashes found on my body that come and go (and itch). They say it is a "good rash". I've never considered a rash a good thing. After you have a transplant you want to see small signs of graft vs. host disease. The reasoning behind it is that we want Ryan's cells to fight against the MDS. We do not want it to come back. So basically the rashes we are seeing are signs that Ryan's cells are indeed moving in.

Recently; I've become restless and so ready to get home. After they started taking me off certain medicine it was a mental struggle. Apparently some of the meds can mess with your head while being removed. The combination of a stressful couple of weeks, the medicine being removed, and being cooped up seemed to hit me hard. Thankfully; it's passing. The doctors say it's a good sign. Dr. Adams said that it tells her I am feeling better.

Hot, cold, hot, cold, hot, and cold. Both the room and my temperature changes frequently. I'm always adding and shedding clothing. My new favorite accessory, hats, keep my head warm.

I seem to get better sleep during the day with less interruptions. They fear I'll mix my nights and days up. They say it happens to most of the transplant kids. However; I certainly understand how. Being woken up at 4am for labs, 5am for vitals, 6am for weigh in, and 7am for shift change seems to do the trick. However; shhh don't tell, but we've talked one of the nurses into doing 3/4 things at one time. It makes the nights easier to sleep through.

I have some big news to share. I am OFFICIALLY ENGRAFTED as of January 10, 2010. My ANC was above 500 for three days in a row which meets the qualifications. Now, we hope and pray for no infections, fever, or significant graft vs. host disease. It's a big step towards moving home.

Speaking of home, we have a tentative release date!! I cannot tell you how excited I am. They are planning to release me on Monday, the 18th. That is less than 5 days away. I miss my bed, Tylie, and the peace and quiet. I have to admit I'm going a little (or a lot) stir crazy. Although all of the planning is taking place and we're on track there are a few more steps we have to take to go home. I have to be eating and drinking enough, all medication has to be given by mouth. I am not taking that pole home. That's for sure! For now I am only on two new pills.

Time to go to bed. Sweet dreams. So thankful for the blessings we've received this past month!

Grandpa's Halo

2010-01-07T00:34:00.006-07:00

The last three days have been bittersweet. The earth lost a great man, but Heaven received a new Angel. Grandpa passed away on January 5 at 12:20pm. Bitter because we miss him so much and sweet because Grandpa is no longer suffering. His shingles are gone. His internal bleeding stopped. His lack of hearing was restored. He's no longer enduring the pain and agony he had to for so long. GP is in Heaven. Grandpa is embracing God and I think he's already started making things happen down here for us. Each time something good happens I always look up and thank God first and GP second. He'll be greatly missed. All of his great belly laughs, congratulatory thumbs up, giving him "sugar", his candy, leaving hopeful voicemails, and hearing him call me "his baby" are some of the things I'll miss most. However; I am at peace to know he's in Heaven, out of pain, and my guess, eating some chocolate. Once again and forever, I love you Grandpa.

Thank you for the love, prayers, and support you've shown my family. We extend are greatest appreciation to all of you. There will be a public viewing on Sunday, Jan. 10 at Falconer Funeral Home from 6-8pm. The funeral service for Grandpa's will be 11am at Sun Valley Community Church on Monday, Jan. 11.

Day 12

2010-01-04T08:41:00.013-07:00

Ceci again. Each day seems to bring something new. Two days ago, it was oxygen to help me breathe. Sunday brought more pain medicine (Praise God). And today, brought an ANC!! My ANC reached twenty-four. Although that's still extremely low it is the first line of cells to some back after a stem cell transplant. How incredible is that?However; my doctor cannot officially confirm my engraftment. Hopefully tomorrow will bring the good news.

The pain seems to be increasing each day. Along with the mucus. However; yesterday was my last dose of Methetrexate. The doctor has informed us it will only get better from here! I'm still getting oxygen. When you are on pain medicine your lungs don't fully expand. (I think it may be my body recovering from my big New Year's Eve party). Drinking gatorade and taking my single oral medicine is quite the task. Three additional pumps have been added so that my medication can be infused through my line. I'm on three different antibiotics and fever free since yesterday morning.

I haven't done much in the days I've been here; I basically sleep and clean my mouth. That honestly sums up my day. However; I was in a silly mood and my alter ego "C-Sweezy" came out recently. Here's what happened:

"Grandpas asleep. He isn't allowed to make a single peep. He's got an
open wound. They're giving it time to heal while he can't feel. He's
got an IV meal. Called TPN it's bagged and sealed. I'm at PCH on some
of the same meds. He's at banner--we have different sized beds. Well I
hope for his sake. He's in ICU until he can be awake. I guess this
gets us both out of yardwork since we share the same one. I'd say we
are both doing hard work. Hospitals aren't all that fun. Good thing
our stays are almost done. We both can't wait to see tylie run and get
out into the sun. Enough about this. This message is about gp who I
miss. Sending him a virtual kiss."

We are still praying for Grandpa. I don't have anything new to report on him. Let's consider that a good thing. Please continue to pray for both of us. I have a BIG prayer to say tonight and includes the word "thanks" often.

A New Year

2010-01-02T20:08:00.004-07:00

Can you believe this is 2010? As we reflect on 2009, we have many emotions that correspond with the many events that the year brought. In that reflection, we want to express our gratefulness for the emotional, physical and spiritual support that we have received from all of you. You have been a blessing!!

The New Year ushered Ceci in with a fever. So since Ceci IS the party, the New Year’s Party in the Pink Palace had to be put on hold!! It is difficult for her to fight infections and fevers because of her low white cell count and her current ANC is 9 (a normal ANC is 1500). I know, YIKERS!! The meds continue to produce sores starting from her mouth and continuing through her digestive system. It is very painful. So as you can imagine, her new best friend is her pain pump.

Thank you for your thoughts and prayers for our Grandpa. He remains in the ICU with his health issues unchanged. Today they will change the dressing on the incision, which does require them to take him to the OR. The doctors also shared today they will probably leave him sedated until next Friday because he will be sore from them stitching him up on Wednesday.

We wish you each blessings for the New Year of peace, love, joy, and happiness!

Aunt Jane

Penning for Ceci

Triplets

2010-01-01T00:21:00.006-07:00

Today finds Ceci with a new “do” and more pumps! Ryan and Allan have become hair stylists….move over runway stylists!! Due to large quantities of hair loss yesterday, Ceci decided it was time to lose it all. So the boys assisted and voila, they all three look alike now! Talk about natural beauty!

She had a good night, only getting up once…woo hoo! They did add another pain pump today. She likes that pain med being “on demand”. Her pole is getting heavier now with eight pumps and three bags! It is quite the process getting from her bed to the bathroom. No wonder she told Dr. Douglas that she was going to run when they unhooked her a couple of days ago!! It’s not “run, Forest, run” but “run, Ceci, run”!!

Grandpa fell on Sunday (27^th) and unbeknown to us, he started to bleed internally. So Tuesday morning he was admitted to Banner Gateway Hospital and underwent surgery to relieve the internal pressure of his organs. The way his doctor explained it was his organs were like the toy snake in a can… when you took the lid off the snake jumped out. He is sedated completely. He will remain that way until next Wednesday when he will undergo another surgery to remove the “sponge” they put in on Tuesday and stitch him back up. Please pray that he remains comfortable, that his blood levels continue to improve and that his right kidney continues to respond to the medication (the left one has shrunk and does not function properly).

We cannot express our appreciation enough for all of your thoughts and prayers. We are encouraged and our family is staying strong! Have a safe and fun New Year’s Eve!

Aunt Jane

Penning for Ceci

I'm baaaack!

2009-12-29T19:44:00.004-07:00

As I sit here and listen to "The Climb" for the billionth time I can't help but bob to the rhythm and smile. When I'm in pain, like I have been frequently, I start to sing. "Ain't about how fast I get there. Ain't about what's waiting on the other side."Mmm it just comforts me. There is one part I disagree with though..."my faith is shaking". My faith is stronger than ever. God has blessed me with so much. This experience has only made that more clear to me.

Each day I feel stronger and more excited. Each day I also feel a lot of pain. Believe me, everyday is a struggle. The struggle is physical and mental. But somehow; at the end of each day the strength and good overcomes the pain.

Three weeks ago I wanted to be anywhere but home. Today, I don't want to be anywhere but home. However; my pink palace is as close as I can get right now. It's day +6. The doctors all seem to say everything happening is expected. The nausea, the pain, the mucus. We find it both encouraging and annoying they predicted this.

I'm not eating too stealthily these days. I eat what feels good on my throat and what my stomach can handle. I get veggies (TPN) every night to keep my body stable.They're warned us that the food I eat now may not taste good later. I'm a popsicle girl lately!

Regarding meds, the list is long and fluctuates daily. I'm constantly hooked up to the pole. Personally; I think they're afraid I'll run. Dr. Adams says it is to early to see graft vs host but never to early to prepare for it. For now, we are just waiting for "Ryan" to make his way to my bone marrow and unpack.

Grandpa is checked into another hospital tonight. He's on pain meds and will hopefully have a restful night! (What's with this family and the hospital?) We are expecting test results tomorrow.

Sending Grandpa Sugar

2009-12-29T08:06:00.003-07:00

Grandpa was taken by ambulance to the hospital this morning. He is doing well with family at his side. I wish I could be there holding his hand. But instead, I'm sending prayers his way. Please, please pray for him. I love you Grandpa, and don't you forget it.

Her Progress...

2009-12-28T22:23:00.003-07:00

Ceci overall is making great progress through this transplant process. There are, however, things that come up and happen and you think…what next! She enjoyed almost two days without vomiting…big Praise!! Last night though was one of those “first” times that you have to deal with. She began to get sick again and she broke out in a rash on her neck and throat area. They are very careful with her skin care because that is where the graft vs. host will manifest itself first. In this case, the rash was an allergic reaction to morphine.

Meds had to be changed and monitored. It was a very busy night as the nurses came in every 30 minutes. Needless to say, she was tired this morning! I think we should even give her permission to be a little grumpy, don’t you think? All of the results of the testing done today were very positive and encouraging in the fact that she is where she needs to be in the process. They watch all of her organs (i.e. liver, gall bladder, etc.) to make sure they are functioning properly and don’t shut down. Thank you for all of those prayers said on her behalf!

Aunt Ro, Ryan and Allan spent the afternoon with her and word has it they played some games!! Boys, I hope you let her win!! They are all so competitive it probably got a little rowdy in the room…good thing you were there to referee Aunt Ro!

Please continue to remember Ceci’s next door neighbor, Kate. She continues to run a high fever and they are trying to arrest the infection which is complicated by the fact she has no white blood cells in which to fight it with. Just in case you would like to read about her, this is her blog sight: HYPERLINK "http://www.caringbridge.org/visit/mcraekate/journal" http://www.caringbridge.org/visit/mcraekate/journal.

Aunt Jane

Penning for Ceci

A Day in the Life…

2009-12-27T22:32:00.001-07:00

Today is “day 4” for Ceci and I thought it may be interesting to take this blog today and give you a glimpse of what a day in Ceci’s life is like. On day 1, 3, 6, 9 and 11 her day starts very early…12:20 a.m.! She is given a dose of chemo at that time because that is the time her transplant was completed. This chemo assists engraft vs. host complications. Each morning at 4 a.m. the nurses will come in and do lab draws so the results will be ready for the doctors to review when they make their rounds. The draws give them all kinds of information from platelet counts to how this is affecting her other organs. It is so amazing! What else is amazing is that Ceci can sleep through this 4 a.m. visit!! This girl has developed some “sleeping genes”!

At 6 a.m. each morning the nurses roll in a large set of scales to weigh her…gotta keep that cute figure! Actually, her weight is a critical component in this whole process because she cannot lose weight. She does get to crawl back in bed and snooze until breakfast which is midmorning. She has not had a huge appetite; however, she has had a few bites of pancakes and ate a breakfast pastry this morning for her breakfast. Since she has been put on the nutritional TPN med, her theory on eating is “chocolate during the day and veggies at night”!! Doesn’t she have the best sense of humor?

After breakfast, she showers and her bed linens are changed. She has to make sure she does mouth care four times a day because it is another critical component; it is the gateway to her system. Cleanliness is paramount. Ceci is also required to do four breathing treatments a day. This keeps her lungs clear of any mucus.

A physical therapist arrives to encourage Ceci to get on the exercise bike. This therapist does not know our Ceci and that she is “self motivated” and does not need her bossing her around! She also has other exercises that are required but she can do those in bed.

She, of course, can take those needed naps in between all of these activities! Whew, aren’t you exhausted for her?

The nurses are in and out hourly checking the pumps, changing the meds, giving her more, etc. At 6 p.m. they bring the scales in again and weigh her. You may be wondering this is a lot of information how does she keep track of what she does? There is a white board in her room and true to “Ceci form”, she gets to check it off when she completes it! Great visual and it’s organized!

The schedule during the night is just as rigorous. At 8 p.m. a 12 hour drip of fats and lipids are started (those would be the veggies!). 9 p.m. rolls around and she gets an iv of attivan and at 11 an iv of protonics and zofran. Midnight comes and the vitals are taken. At 1 a.m. she receives hydrozoxine and more attivan at 3 and another dose of zofran at 5. Ok, are we all exhausted?? There is something to be said for uninterrupted sleep! Ceci, you take all the naps you can girl!!

Aunt Jane

Penning for Ceci

Christmas Day

2009-12-25T22:37:00.003-07:00

Merry Christmas greetings from the “Pink Palace”!! The day has been laid back and very restful! Naps were taken by all! Gammie, Grandpa, Uncle Randy, Tyler and I took a drive to wave to her through her room window and wish her a very Merry Christmas. Ceci looked very festive and cozy in her pink (of course!) sequined Santa hat covered up with a Christmas blanket. Her hospital pole is filling up with many pumps…meaning more meds to combat all that she has going on. She has been put on a nutritional med called TPN because she has a hard time eating and keeping it in her system.

Ceci has been blessed with such a great team of professionals. Her transplant doctor, Dr. Douglas, responded to the “pink theme” and wore pink shirts and even pink barrettes in her hair!! Is that cool or what? She has a wonderful group of nurses that provide constant care and are so personable. They work hard and have been such a blessing.

While this is not exactly the way one plans to spend a Christmas, we are just thankful to be this far along in the process of the restoration of Ceci’s health. When you think about gifts for a 16 year old girl they do not typically include blood, platelets and fudge!! Exactly the gifts that Ceci received today!

Next door to Ceci is a precious little girl named Kate. She turns 6 tomorrow and has an aggressive brain tumor and is in her 5^th round of chemo. She is running a bad fever and they could really use some extra prayers. I know her family would really appreciate it. You quickly become attached and become part of an extended family when walking along side others going through what you are going through.

Gary continues to improve on his cold and hopes to be able to visit Ceci tomorrow! I know both are anxious to see one another! Thanks for praying for him, Ceci and the rest of the family. Our family prays that you and your families had a blessed Christmas!

Aunt Jane

Penning for Ceci

Christmas Eve

2009-12-25T07:44:00.003-07:00

It’s Christmas Eve…who would have ever thought one year ago that Ceci would be spending her 2009 Christmas at Phoenix Children’s Hospital! A lot can happen in a span of a year. To Ceci, the time right now is probably in slow motion because she continues to be in pain and very nauseated. They have made some adjustments in the pain relief medication, but it is a slippery slope of finding the exact amount to give relief but not too much for other side effects. It will probably be like this for the next two weeks…ugh! 

Ryan and Allan showed up at PCH this afternoon sporting new haircuts in honor of their sister! You guys are the BEST!! (Just in case you are wondering… yes, Ceci still has her hair.) The nausea subsided, somewhat, for a couple of hours this evening and they had a great time playing “Catch Phrase”, which is one of her favorite games! They also enjoyed laughing as Ryan read “how to make a turkey” from a second grader’s perspective! Thanks to Myrna Holloway and the 2^nd Grade class in Arnett, OK for sharing those cooking tips! Lookout Julia Childs!!

We are experiencing the power of all our prayer warriors out there! Thank you and please continue! Gary is battling a cold and is therefore unable to visit Ceci. Pray that he will get well soon and that the rest of the family stays healthy.

Aunt Jane

LATEST UPDATE

2009-12-24T00:02:00.001-07:00

Well, here we are on day “one” of the climb! If Ceci were able to blog she would share details of her “transplant” day. However, because she is not the one blogging you will get those details later!

Ceci’s day has been filled with a lot of up and down moments. She got up this morning feeling good and then nausea arrived and hung around way too long! The medication that makes her body be a good “host” for Ryan’s stem cells is the one causing her to experience a pain level of 12 on a scale of 1 to 10. One of her “up” moments was when Allan read to her some Christmas cards sent from her friends. To all of you friends out there, thanks for making Ceci have a smile and a moment of laughter!

Ryan remained home today getting some much needed rest after his long day yesterday. They cycled his blood four times to harvest the number of stem cells they needed. Hopefully, he will recover quickly and be back to conditioning for baseball season.

We cannot thank you enough for your thoughts, prayers, love and support you have shown our family. Please continue to pray for strength, rest and health as we “climb” toward the day when Ceci is 100% MDS free!

Aunt Jane

Penning for Ceci

Transplant

2009-12-23T00:57:00.002-07:00

Really quickly, I wanted to let everyone know that the transplant was similar to a transfusion in process. Except with long lasting effects. I am thrilled to report it went great. All of our prayers got through! I need rest after our busy day. I'll give you all the details tomorrow! Good night.

Holiday Cheer!

2009-12-21T05:57:00.006-07:00

"Twas the Night Before Ceci's Transplant"

'Twas the night before Ceci’s transplant, when all through the city

not a creature was stirring, not even a kitty.

The clipboards were hung by the nurses with care,

in hopes that Dr. Etzl soon would be there.

The patients were nestled all snug in their beds,

while visions of stem cells danced in their heads.

And Rhonda saying her prayers, and Ceci in her gown,

had just settled down for a night with no sound.

When out in the hall there arose such a clatter,

Ceci looked from her bed to see what was the matter.

Away to the hall Ceci saw a glimpse of red,

tore open the door, and “Ho, ho, ho!” he said.

The light on the tile of the newly waxed floor

gave the luster of Ceci’s smile to all who adore,

when, what to Ceci’s wondering eyes should appear,

but Doctors Etzl and Adams and eight nurses near.

With a prick of a needle, so lively and quick,

Ceci knew in a moment she wouldn’t be sick.

More rapid than Etzl, his nurses they came,

and he whistled and shouted and called them by name:

"Now, scalpel! Now, gloves!

Now, needle and I-V!

On, doctors! On, nurses!

On, Ryan and Ceci!

To the top of the roof!

To the end of the hall!

Now come nurse! Come doctor!

And come all!"

As everyone gathered they began a quiet hum,

as they met with the obstacle of the surgery to come.

so up to the surgery floor the doctors they flew,

with Ceci herself and Ryan, too.

In what seemed like a moment, Ceci heard on the floor

the dancing and skipping and hopping galore.

As Ceci put out her hand and was looking around,

down the hallway her family came with a bound.

They were crying tears of joy, from Gammy to Aunt Ro,

and Gary and Allan’s smiles told her just what she needed to know.

The transplant had been a success and she suddenly knew,

she had a long, healthy life in her clear view!

Ceci’s eyes--how they twinkled! Her dimples, how merry!

Her cheeks were like roses, her nose like a cherry!

Her big, happy smile was drawn up like a bow,

and the gown on her body was as white as the snow.

She reached for her family and they all joined hands,

and they said all at once, “God is grand!”

Ceci has a sweet face and a thin, little belly,

that will soon start growing as she’s eating rolls and jelly.

She was faithful and positive, a right jolly ‘ole girl,

even when life threw her for a whirl.

A wink of her eye and a twist of her head

soon let her family know they had nothing to dread.

Ceci spoke not a word, but the smile on her face,

told everyone she knew, she had run and won the race!

And laying her hand over her heart,

she said, “God and I had this, right from the start.”

“I’ll admit it was hard and no easy coast,

but these are the moments I’m gonna remember most.”

Then Ceci exclaimed, “I don’t care about the loss of time,

Merry Christmas to all! It’s all about THE CLIMB!"

Adapted by: 2009-2010 Arnett six grade.

Big thanks to all of you in Arnett; and especailly Ms. Holloways class your supposrt has touched me.

Transplant Eve

2009-12-20T17:51:00.018-07:00

Our last two days off chemo have been restful, (sort of). On day negative two and negative three we are still battling the nausea, but it has become less severe as the doctors and staff worked out the appropriate medication schedule. They are trying to prevent the loss of fluids in my body.

Transplant Eve is upon us. December may officially be my favorite month of the year. Santa, friends, stem cells, family, and Christ's birthday! That is a

winning combination.

We've been talking through a couple of things like hair loss and the lengthy stay, and of course good health. However; we've decided We will deal with those as they approach us, but for now we are fighting one battle at a time. I've will be excreting all of the MDS just in time for the new cells to arrive tomorrow!

Chemo Complete!

2009-12-19T21:46:00.003-07:00

Thanks Aunt Jane for updating yesterday.

Woah. It has been a rough two days. After we sailed through the first two days; the third day a title wave hit. A title wave of nausea. I can honestly say the strain both mentally and physically were overwhelming and I'm glad to have those 2 days behind me. As Ry puts it, "I'm ridding my system of MDS". The chemotherapy has proved it's toxicity. I get anti nausea medicine every two hours and I'm wearing the sea sick patch behind my ear. We hope to have the nausea under control moving forward! I've mostly been eating ramen noodles and cheerios. I cram down as many carbs as my tummy allows. We don't want to have to start any IV nutrition.

I can honestly say I have still been getting up and exercising. Some days more willingly than others. I've started making faces to show how poor I feel attempting to persuade them that they should go easy on me, yeah, nobody fell for it. Well, except for Mom. The plan is to rest and be strong moving forward. Keep on a 2,500 calorie diet, being active, and mouthcare. Basically we want to set ourselves up for success.

Ryan got his second round of shots this morning and can already feel the side affects. He has an achey back, stiff neck, and his thighs are sore. Allan claims "he wouldn't complain. He would be tougher." All I can say is that all of the pain Ryan and I've endured is weakness leaving the body. Leaving room for strength only.

I'm feeling well tonight and praising God for holding my hand through the last two days especially. I cannot stress how thankful I am for all of the support and love I've seen. Dr. Adams no longer has to fly in platelets thanks to many generous donors. However; platelets are always in need.

I know there will be more rough days to come, but don't forget to "Keep on moving, keep climbing. Keep your faith. It all about the climb."

The Ugly Truth

2009-12-18T20:56:00.008-07:00

Hello to all who read this…it’s Aunt Jane and I have been given the honor of blogging for Ceci when she is not feeling up to doing so. I will throw in a disclaimer right now that I do not have the wit nor the charm that our Ceci has! But please bear with me as we want to share with you how she is doing and what she is up to.

The news from the “Pink Palace” is that today is day negative four…a big shout out that she only has one more day of chemo! As for her day today, not so good :( The chemo has revealed its ugly side and made her sick for most of the day. The expectations are that she still has to eat and drink to maintain proper weight and excretion levels. That is rather hard for a girl when the output is faster than input! Ryan started on his portion of the transplant today by receiving a shot that will allow him to produce mass quantities of white blood cells which make the stem cells. He has to receive these shots between 8-8:30 a.m. for the next three days. Rumor has it that he will not feel very well. Good thing those finals are finished!

Thank you, thank you to all who have gone and donated blood and platelets! The blood banks are very low! We appreciate all of your thoughts, prayers and support.

Six weeks ago in clinic Ceci had her pictures taken by an organization called Flashes of Hope. Here is one of the final products.

Getting Into the Routine of Things

2009-12-17T11:59:00.005-07:00

Day negative five has started out at a more leisurely pace than yesterday. We were extremely busy talking to the nutritionalist, the physical therapist, Dr. Adams, Dr. Kiery, and the ICreate team. I got platelets early this morning and the chemotherapy drugs are infusing right now. Each day we are adjusting to the hospital routine more and more.

I think there has been some confusion about the sudden need for platelets. For the duration of the transplant the goal is to keep my platelets at twenty or above. (Platelets are for clotting.) My platelets have been dropping a little each day. Yesterday morning; Dr. Adams came in and told us that there was a shortage of platelets. Although it is the season for sharing people tend to stray from donating over the holiday season. And the need is greater thanks to icy roads, recreational accidents, and lack of donations. Trying to find the perfect gift this year? If you are 16 or older call 1.877.448.4483 and set up an appointment to give blood products. It's the gift of life. All of my neighbors and I here at PCH need your help.