Day +28

WBC- 2.4
Hgl- 11.3
Hct- 33.8
Plt- 64
ANC- 1.1

Today was clinic day. We were also in clinic last week on Wednesday, two days after Claire was discharged from the hospital. The oncology clinic and the bone marrow clinic share the same space and the same nurses, but they are very different experiences. We aren't getting chemo. We could get blood products, but so far Claire hasn't needed them. So our appointments have been done in under three hours, which is pretty short for us. We go in, get vitals, draw labs, wait for lab results, then the bone marrow team comes in and does an exam. Today we talked about diarrhea and bumps on Claire's skin. She's not feeling great, but there is nothing really to indicate why. (Other than the fact that she is being rebuilt on a cellular level from the inside. No big.) She could be having more withdrawals, since we just went pretty low on her narcotic pain meds. The doctors also look for signs of graft vs. host, and again emphasized that if there is ever a question they want to know right away. If she ever has a fever of 100.4 it is an automatic admission to the hospital for a few days. We don't even go through the ER, they just admit us. As they said during our last clinic visit, it is an up and down battle, but the up slowly goes higher than the down. Today I talked to Dr. B about how I need to view Claire's ANC numbers differently. When she was doing chemotherapy, an ANC of 1.1 (1100) would have been great. But even though the number looks good now, her immune system is still incredibly fragile. During chemo she still had stem cells that could work and help everything recover. We have wiped out her stem cells and replaced them. Dr. B said that before we were laying sod in the hopes that it would take, but now we have decided to start from scratch and reseed the whole lawn.

Christmas was amazing. We didn't go anywhere or do anything, but we were together. And even our oldest son and his wife and our grandson (the cutest baby in the world) could Skype into our traditional celebrations. We felt so very, very blessed to just be under the same roof. And Claire was determined to make things as normal as possible, from getting up before the sun to eating what she could. The spirit of love was very strong in our home. And that's what it's all about, isn't it?

                        Enjoying a fun package from a friend.

              One of my favorite sights on Christmas. These two still like to be in the same bed.

                     Wiped out after too much holiday fun.

             These dear friends gave us a private concert on Christmas morning.

             The only perk at the hospital...we get the very closest parking spots.

              Getting weighed and measured, and, unlike the rest of us, hoping that the numbers go up.

                                          Vitals, vitals, and more vitals.

                         Not feeling great and keeping a bucket close by.

            And just because, the spectacular view from our driveway. Merry Christmas.

She's home. She's home. She's home.

We've known it would probably happen today, but we didn't tell anyone because in the cancer world you can never be sure something is going to happen until it actually happens. Plus we have been too busy getting our house ready to even ask for help. (But thanks to our few family members that we did ask for help, and to my regular cleaners who put in extra time, and to the local carpet company who pulled guys off another job to get our carpets laid, and a few more...) We also needed Claire's homecoming to be low key. She is still in isolation and won't be making any public appearances any time soon, but at least she won't be making them from HOME. Did I mention she's home?

This year our Christmas has had a very clear focus. All we wanted was for our family to be together. Our time in the hospital, although emotionally draining, hasn't been all that bad. I recently read a talk by one of our church leaders. In it he quotes an interview with Bishop Desmond Tutu. It describes what we have felt this past month.
"During the interview the host asked a perceptive, inspired question of Bishop Tutu: 'Have you found that your relationship to God has changed as you've grown older?' (or, I might add, as you've gone through this thing) Bishop Tutu paused and then said, 'Yes. I am learning to shut up more in the presence of God.' He recalled that when he prayed in his earlier years, he did so with a list of requests and solicitudes. He would approach heaven with what he called 'a kind of shopping list.' But now, he said, 'I think I am trying to grow in just being there. Like when you sit in front of a fire in winter, you are just there in front of the fire, and you don't have to be smart or anything. The fire warms you.' "

Being in the pediatric cancer world, with the other patients and parents, the nurses and techs and doctors, and focusing on the people we love the most in the world has been pretty close to being in the presence of God, because He has been with us. Merry Christmas. She's home.

                     In the car for the first time in a month.

                              A little serious radio listening.

                       I picked up 13 prescriptions before coming home.

                       Just a few of our favorite people.

                   I promise Claire is smiling under her HEPA filtered mask :)

                        Joyce is just happy that I made more caramels ;)

                             Seriously, Jemma couldn't stop smiling.

                   I'm pretty sure Poncho is smiling, too. Jasper was busy eating.

                  Cuddling under this amazing quilt my dear friend made for me.

Day +17

WBC- 2.9
Hgl- 10.2
Hct- 29.9
Plts- 28
ANC- 1.9 (without neupogen!)

"Recovery can be like a roller coaster ride: one day you may feel better only to awake the next day feeling as sick as ever."
We are certainly experiencing that roller coaster ride. As Claire's counts have gotten better, she has felt better. Yesterday she was allowed to leave her room for the first time since she finished radiation, and she went for two small walks around the Immunocompromised unit. Eating continued to prove challenging, but she was able to be completely unhooked from Fransisco. Unfortunately, one of Fransisco's functions was to provide a constant drip of Morphine to control Claire's pain. Morphine is basically the legal version of heroin, and once that was stopped, Claire went into pretty severe withdrawal. She had shakes, stomach pain, nausea, clamminess, and agitation with diarrhea and vomitting. It was a pretty miserable night. They had to let Fransisco give her some more morphine as they try to switch her, more slowly this time, from IV morphine to oral Oxy then slowly wean her from the Oxy. Our nurse said she sees this all the time as these kids come off of pain meds. It's a real side effect of treatment that people rarely think about.

But we are trying to look at the big picture, which is pretty good at the moment. As Dr. B said, we have made it through the first big milestone. The next one is the 100 day count. David and I have talked about how hard it is to answer the question we are asked so often, "How is Claire?" Well, how long do you have? Because the answer is not that simple. We usually answer, "She's doing good," (bad grammar and all) or, "She's hanging in there." Neither are anywhere close to the whole picture. Her doctors are very pleased with where she is. But no one, except the medical team and us, could understand how hard it has been to get her here. I ran into Dr. A, our oncologist, in the hall yesterday. She has been out of town, but one of the first things she did when she got back was ask the transplant team how Claire was. She was tearful thinking about how hard it has been. She reminded me how concerned Dr. B had been about Claire's liver (which, in his words, has "behaved beautifully) and she even said "Claire's re induction was harder than ANYTHING." I have friends who are trying to get to a point where their children can have a transplant. I met a lovely woman at hospital church on Sunday. She was there delivering soft blankets in honor of her 17 year old daughter Miranda who passed away last year. I told her that my daughter just had a BMT. She said that they had tried to get Miranda to that point, but it wasn't in God's plan for her. It was both sobering  and inspirational.

So, I can only caption pictures on my laptop, but not on my iPad, so I will describe the pictures here. The first is Claire looking at some amazing pictures from Magna Elementary. They did a project called Dragons for Claire. (Thanks, Robin) Then there is Claire on the outside of her room (!), sleeping through this morning's EEG to see if she can be weaned off of her seizure meds (she can), and Fransisco loosing weight on the pump removal diet.

Weirdest thing. I have had the loveliest day here in the hospital with Claire. After I spent an hour and forty-five minutes driving what usually takes twenty minutes to get to the hospital I settled in for the next 24 hours. I hadn't been here for four days because I had a stomach virus and fever and had to stay away. Claire was in such good spirits and we both loved watching the snow fall out of the window of our cozy hospital room. I know. I must be going crazy to call our hospital room cozy. But we have soft blankets and pictures on the walls and Christmas lights and my house has been loud and messy dealing with the flood. We spent a lot of time chatting with our nurses, and I chatted with some other visitors out in the hall. (The charge nurse wanted to keep the in room visitors restricted, and rightfully so.) I had brought cinnamon rolls this morning, and it was fun to see our medical teams enjoying them on this snowy day. Claire and I laughed a lot looking at funny pictures and clips on Facebook, and for some reason we found Steve Harvey on Family Feud particularly funny. One of the great old time nurses, Dave, used his badge to show me the secret stairwell that ends by the helipad with a great view of the city. Claire ate a cup of spaghettios and a few bites of a baked potato! And I ended the evening listening to great music on The Voice and the Adele Live concert. We watched it old school, running to the bathroom during the commercial breaks, with no pause or DVR. (I say we loosely. Claire pretty much conks out by 7pm.) And the best thing: our friend Madeleine, who has been fighting her own battle with cancer, was able to text with us for a bit. We just passed the three week mark being inpatient, and today I didn't care. Claire also said that she had a lovely day. Like I said. Weirdest thing.

Oh, and Claire's ANC happened to be 900 today. (0.9) What?!? So, it seems that she has engrafted. She is getting daily neupogen, which stimulates white blood cells. They will continue giving it to her until her ANC hits about 2,000, then when they stop it her ANC will probably drop by about fifty percent. I asked the bone marrow team, "What now?" She needs to keep recovering blood counts (she got platelets again today), then they need to wean her off all of her IV meds. They have already switched a few more back to oral, and they are cutting down her morphine drip. She needs to be able to eat more and have a solid plan for nutrition. (She said that she never lost her appetite, just her ability to eat. So sad. And it takes some work to wake up your body's ability to take in food.) She needs to be in a solid engraftment. We are on day 14 of a 100 day count, with several months after that rebuilding her immune system and regaining strength. But today was lovely. Or maybe I am losing my mind.

Day 14

WBC- 1.5
Hgl- 9.1
Hct- 26.8
Plts- 11
ANC- 900

We have an ANC! It's just a step above 0, but we will take it. Woohoo! Claire has had a few more platelet infusions, and she finally needed red blood cells yesterday. Her mouth sores are starting to get a little bit better, and she and David have made it through four of the Star Wars movies. She had a visit from three of the members from the group The Lower Lights (They are amazing. You should YouTube them.) and an adorable therapy dog. Her Aunt Lori came from Washington to help for a few days and they had a nice visit. Claire is a warrior of the highest degree. She doesn't complain or cry, even though she has every reason to. She is pleasant with everyone who comes into her room, and everyone loves her. In fact, at The Lower Lights concert that Faith, Ella, and I went to, at their invitation, one of the musicians talked about meeting Claire. They were singing Silent Night, and I joined in with harmony. On the video you can see Claire nodding her head and moving her hand. She couldn't sing with her voice, but she was singing with her heart. The band member said from the stage that it was a moment he will never forget. We won't either. Claire touches people, and I think they can feel the love we all share when they come into her room. It is a sacred space.

Things are a little less sacred on the home front. That flood I mentioned in my last post was very damaging. We have had disaster relief here, and all of the carpets in our basement have been ripped up. There is a large, loud generator right outside of my bedroom window, plus at least twelve more fans running day and night to dry things out. We have a large, very ghetto pile of damaged stuff in our driveway. And this all needs to be fixed before Claire comes home. (It's covered by insurance, but the timing is ridiculous. Where is Ellen or those cute HGTV cousins who fix things when you need them?) And the dog ran away. Thanks to a large posse of neighbors, we found her. On top of all of that, I became very sick yesterday and was in bed with a fever, so I can't even go up to the hospital to be with Claire. A flu test came back negative, so hopefully it will pass soon. On the bright side, David is gaining lots of levels playing QuizUp. When it rains, it pours.

*Update: David just sent me a text saying that Claire had a little jello and a few nibbles of cheese! Woohoo!

Day +8

WBC- 0.1
Hgl- 9.1
Hct- 26.6
Plt- 5 (38 after today's transfusion)
ANC- 0.0

Today was more of the same. The days melt into each other in an almost dreamlike way, making us all forget what day of the week it is and making us lose all concept of time. Claire still has a lot of pain, swelling in her feet that makes it uncomfortable to walk the few feet into the bathroom, and very dry itchy skin. Even little scratches on her skin become bothersome because she doesn't have any platelets to heal them. She still doesn't like to talk. Her platelets are low every day, requiring transfusions, but her red blood counts are just hanging on. The transfusion threshold for red blood is a hemoglobin level of 8 or lower. She is still fevering on and off, and her heart rate is a little elevated as her body tries to cope with what is happening. She received another dose of Lasix. They measure everything going in against everything going out to try and maintain a balance. Nothing unexpected yet, thank goodness. Despite all of this, her spirits are pretty good, when she can stay awake. She was hoping to do some things on her computer this afternoon, but so far she has just looked at a food network magazine, watched a little tv, and helped me with a project.

People have asked how Faith is doing. She is great. The BMT was last Monday, and by Wednesday she was playing in her orchestra concert. She was back at school on Thursday. She only took the prescription painkillers for two days, then she was ok. Today she is swimming in a meet. It's amazing how quickly you can recover when you are healthy! On Tuesday she and Ella came here to attend a beautiful mini concert given by violinist Jenny Oaks Baker and her kids. (Her dad, Elder Dallin Oaks, and her mom were also there.) People are very generous with their time and talents here at Primary, especially at the holidays. Claire has already had a giant stocking filled with gifts delivered to her, and a nurse told me that one of the conference rooms is so full of donated gifts that you can barely open the door. Members of The Grizzlies (our professional hockey team) were visiting the kids today. I myself have a special connection to this place. Primary Children's Hospital was originally started by the LDS church. As an LDS child living in the very non Mormon states of Texas, Oklahoma, and Kentucky I collected my pennies all year so I could put them in the cardboard Primary Children's Hospital bank at church. So I have definitely donated myself. If I can figure out the volunteer situation I hope to do some singing here this month. Seasons for giving and seasons for receiving. It feels nice to give, even just a little, especially when we are receiving so much.

And life goes on. David and I went to Faith's choir concert Friday night while our daughter Hannah and her husband Jose stayed with Claire. We both commented that it felt really weird to be out among people. It's as if the hospital has become our reality and everything else feels strange. It will be that way for Claire when she eventually comes home. Worse, even. And, believe it or not, last night we had an outside pipe burst and our entire basement was flooded. No joke. (Don't worry. It's being taken care of. No need to call.) But life goes on. You think it should stop, but families still need to be fed, dogs still need to be walked, the service engine light still comes on in your car, and pipes still burst. And you just keep putting one foot in front of the other.



.

Day +6

WBC- 0.2
Hgl- 9.5
Hct- 27.5
Plt- 14
ANC- 0.0

Claire received platelets again today. We were told that it's not uncommon to get transfusions every day. Her potassium was low, so she received potassium. She had another dose of Lasix to try and get some of the extra fluid out of her tissue. She only has a few pills that she has to take by mouth, everything else has been switched to IV. She can't really brush her teeth because her mouth is so raw and tender and her platelets are so low, but she does mouth care four times a day. First she swishes around some "magic mouthwash" to temporarily numb her mouth, but she can't swallow that, so the numbing stops right before her throat. Then she swishes around Biotine to clean everything. Then she swishes and swallows nystatin (the medicine you put on your baby's gums when they get thrush). THEN, three times a day, she swallows those few pills. Today when she was about to do this routine she asked me to hold on to her. She said, "Get ready. This is going to hurt." Some adjectives that her doctors have used for her are trooper, tough cookie, and rock star. The pain is pretty intense. She decided herself to switch back to Morphine from Dilauded for pain. The Dilauded helps with the pain a little better, but she has weird dreams and can't distinguish what was part of the dream and what is real when she wakes up. She said that last night she started writing things in the air and calling out to Faith. She said she would rather be on Morphine and take extra meds for the extreme itchiness. She continues to have random fevers, and every time it goes over 100.4 they draw labs to run cultures. Thankfully they haven't grown anything yet. Really anything could make her sick. Her linens are changed daily. She can't eat any food that hasn't been prepared there, not that she is eating anything these days. I take her laundry home and bring it back in a clean, large trash bag. Her room is thoroughly cleaned and sanitized daily. (We love Sharon who cleans our room.) Even though she is hooked up to a tall, dark, and handsome IV pole (she has named him Fransisco, her constant companion) continuously, she has to shower or bathe every day to remove any bacteria that might be on her body. I won't take any pictures of that, but let me tell, the two of us in the shower with Fransisco would be pretty hilarious to see.

So things move along. We are grateful for boring days. We are grateful for doctors and nurses who have amazing knowledge and experience. We are grateful for other parents who share their strength, hope, and testimony at hospital church. We are grateful for Claire's amazing attitude. We are grateful for neighbors and friends who leave treats and gifts on our doorstep, who bring us meals, and who put Christmas lights on our house while we are at the hospital. And for some reason, I am even grateful that we are going through this during this time of the year when I can be constantly reminded of the birth of a child who brought light and hope to the world.

               All the wires that are attached to her!

               Sunset over the Great Salt Lake.

               Here is a picture of her sleeping at night with the flash...

             ...and without the flash. It's like sleeping next to a spaceship. Named Fransisco.

             You can guess when she will engraft. Each guess costs a dollar (payable whenever). If you
             win, you get to say, "Yea! I won." but Claire still gets all the money. It's a hospital tradition.

Day +4

WBC- 0.2
Hgl- 11.1
Hct- 32.5
Plt- 16
ANC- 0.0

Claire had another platelet infusion today. She will be receiving many platelet and red blood  transfusions, so thanks to everyone who donates. It is an amazing gift to give. Surprisingly her red blood counts are hanging in there, probably because she received such a hefty dose on Monday with the stem cells. She has had some fevers, which is an expected response of her own body, and her antibiotics were changed to treat possible infections, but nothing has shown up in her daily blood cultures. She has started writing things down so she doesn't have to talk too much, since talking is very uncomfortable. A few people have asked me why she has mouth sores. The very high doses of radiation and chemo that she received in preparation for her BMT kill any fast growing cells in the body. Cancer cells are fast growing, especially in Claire's leukemia, which is why it is considered acute. Things like hair and soft tissue are also fast growing. So your hair falls out (Claire's had started to come back, surprisingly in white blonde (!), but is falling out again) and you get sores throughout your GI tract. If you look inside Claire's mouth, everything is bright red on her gums and tongue. These sores go all the way down to her stomach, and won't start to heal until her immune system starts working again. The excessive mucus that she sucks out with a tube several times a day (she keeps the suction tube tucked under her pillow and calls it her best friend) is the body's natural response to try to protect and coat the upper GI tract. She will probably have diarrhea, too, as the body tries to protect the lower GI tract. And yes, she will probably have sores there as well. She now has a pain pump which she can push as often as every ten minutes, and it is keeping her pain under control. We are figuring out the best pain meds for her. Morphine makes her really itchy, but Dilaudid makes her a little loopy and gives her weird dreams. Hmm. She was also given Lasix today to clear excess fluid out of her tissue. She is weighed at least once a day, sometimes more, to make sure she isn't retaining too much fluid. The meds (she also gets pretreated with Benadryl to prevent allergic reactions with blood products and antibiotics) make her pretty sleepy. She tries to get through movies and things, but she doesn't always make it. She and David are trying to get through all of the Star Wars movies, and today she found out that Darth Vader is indeed Luke's father. That will probably be the biggest excitement of the day. At least we hope it is.

I've been thinking a lot about prayer lately. I can't remember if I have mentioned this already or not, but a while back I asked Claire if she was remembering to say her prayers at night. (A mom thing) She said, "Mom, I pray all day long." Yeah, me too. Since her relapse, and in her previous treatments, I have an open, all day dialogue with God. I think it is the only way I get through some days. But I have been wondering about the nature of prayer. Don't get me wrong. I very much appreciate all of the prayers that have been said in our behalf. (I also appreciate all of the love, good karma, positive thoughts, and other support, but right now I am actually thinking about prayer to a Higher Being.) I have, on occasion, hesitated to ask God for what I specifically wanted. I have thought, who am I to tell God what would be the best thing for me? Surely He already knows. I have also had great empathy for the incredibly faithful people who I have been privileged to meet on this cancer journey who I'm sure sent many heartfelt prayers to heaven, but whose children have been taken. If I believe that Claire is doing well because my prayers are being answered, does that mean that their prayers weren't answered? I can't believe that. Then someone at church pointed out the Bible dictionary definition of prayer in our edition of the Holy Bible. (I hadn't voiced any of these thoughts when she pointed it out, btw. An answer to my prayers?) It says, " Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other. The object of prayer is not to change the will of God, but to secure for ourselves and others blessings that God is already willing to grant, but that are made conditional on our asking for them." I like that. It conveys that open correspondence I was talking about as we try to align our will with the will of our Father. And I have seen that alignment in others whom I admire, regardless of the outcome. So I will keep praying for blessing, and comfort, and peace, and even just to share my day, because I like that, too.

        Claire using that blessed suction tube.

        Sleeping with her note pad and pain pump close by.

Day +2

WBC- 0.3
Hgb- 12.3
Hct- 35.2
Plt- 9
ANC- 0.0

Mouth sores on her tongue, inside of her mouth, esophagus, down to her stomach. Excessive mucus that requires suction. Starting a pain pump. Groggy and sleepy from Benadryl and Oxy (soon to be Morphine). Platelet transfusion. Six wires coming out of her chest. Gets up several times a night to go to the bathroom. (No small feat dragging an IV pole with 6 pumps attached.) Liver ok so far. Doctors say she is just where they expected her to be. Still in pretty good spirits! Wearing her favorite Percy Jackson shirt :) Faith is recovering very well. Ella's anxiety flaring up, (our 13 year old) as her psychologist suspected it would. So, there's all that.

And our hearts are in London.

Day 0

WBC- 0.2
Hgb- 9.1
Hct- 26.9
Plt- 39
ANC- 0.0

It happened. T day. The day we have been waiting for. David described it as being similar to having our babies. You wait and plan and do everything the doctor says, then you give birth. After that you have more worry and sleepless nights and pain and unknown, but at least you have gone through the labor part. I didn't sleep much last night. Come to think of it, I never slept the night before going into labor. David spent the night at the hospital with Claire, and Faith and I woke up before the sun to arrive at the hospital at 5:45. Claire has been to the OR several times, so I recognized  most of the nurses and techs. It was strange to be there with a different child. After all of the prep, Dr.H talked to us (He's very personable and chatty and Midwestern. We like him quite a bit.) and our nurse practitioner D talked to us a little more, then the anesthesiologist took Faith back. When the doors closed I was hit with a flood of emotions. I have to admit, I don't think we ever asked Faith, or any of our children, if they would donate. It was always just assumed that if they were the match of course they would. And Faith has carried it like a champion. But as they took her away, I was so touched that she would give a part of herself so her sister could live. Shed her own blood willingly. I don't take that lightly, and am grateful that the gift of life through blood was also given to me and to each one of us.

It was interesting being on both ends of this process. Often a donor is unrelated so you don't get to see both sides. It took two people extracting from both sides of Faith's hips two and a half hours to pull out just over a liter of thick, healthy marrow. Dr.H had a blister on his hand by the time he was done, but he was excited they got so much. He explained to me that (I'll try to get it right with my actor's brain) the minimum goal is to extract 200 million nucleated cells per kilogram of Claire's weight. Of that, 1-5% is stem cells. They extracted 436 million nucleated cells, with 1.1% of that being stem cells, so about 5 million, which is within the desire range. And they give us this info off the top of their heads! Several of the nurses who have been there a long time said it was the biggest bag of marrow they had ever seen. The infusion took about 4 hours, and Claire didn't have any reactions as it was going in. Our amazing nurse stayed in the room the whole time and did vitals every 15 minutes. Faith (and Ella) were able to be in Claire's room with her. On a side note, I have to give a mention to the parents in the OR waiting room. What a range of emotions sits in that space! I was telling Claire's story to my seat neighbors, and the woman said that all of that might have pushed her over the edge. Her friend then quietly said that we might think that, but the edge just keeps shifting. As I left, she gave me a hug. The kindness of strangers.

Now we wait. We wait for engraftment, when her new marrow starts producing cells on its own. Then we wait some more. In the meantime, Claire has open sores on her tongue and down to her stomach and has started pain meds to manage that. She will probably stop eating soon. She has a suction tube to manage the excessive mucus. There will probably be bone marrow pain. She will undoubtedly receive many blood and platelet transfusions. There will be pain if she develops graft versus host disease. (Surprisingly, they want a little graft versus host. It is called graft versus leukemia effect.) We pray that while she has no immunity she doesn't develop any infections, and that her liver keeps doing its job (and her kidneys and her lungs). But today we celebrate.

        Thumbs up before surgery.

      Groggy and a little weepy (common in teenage girls) after surgery.

        Pink lemonade slushy (the best flavor, FYI) brought to us by our nurse friend.

       It's no wonder Faith was a little pale after all of this came out!

     The whole team singing Happy Bone Marrow Birthday!

        Dr.H looking pretty happy

                   Every last drop.