Day 272 (The Adventures of Claire)
And...she's off.
Last weekend we packed Claire up and drove her down to her university, which is only 45 minutes away. After several hours decorating her room, buying groceries, and getting textbooks we drove home. WITHOUT CLAIRE. I can't really describe my feelings. In fact, I am still processing them. I have waited a week to write, and I still don't know what to say. I will say that I am so very, very grateful. I know too many families who would have loved to have this moment in time for their children. A young man who is in our cancer community that was diagnosed while serving an LDS mission in Russia and who was about the same age as Claire passed away just two days ago. The realities of cancer are all around us, but so is hope and faith and the incredible feeling of moving on. Claire came home this weekend to hear her friend speak in church before leaving to be a missionary in Ukraine. We heard all about her first week at college, not that I hadn't texted her everyday. I think she overestimated how much energy it would take for her to have a normal university schedule and she was very tired by the end of her week, but she said she has enjoyed it. She really likes living on her own. I noticed a difference in her...a confidence or sense of independence that wasn't there before. It made my heart full. So, in the spirit of independence, I have decided to stop keeping this blog. Oh, I will probably write something on her bone marrow birthday or post an occasional picture, but I think I will just let her live her new life without letting everyone in on it. (Even though the support we have received through this blog has been so beautiful and appreciated.) And I will keep breathing.

"...this storm isn't something that blew in from far away, something that has nothing to do with you. This storm is you. Something inside of you. So all you can do is give in to it, step right inside the storm, closing your eyes and plugging up your ears so the sand doesn't get in, and walk through it, step by step. There's no sun there, no moon, no direction, no sense of time. Just fine white sand swirling up into the sky like pulverized bones. That's the kind of sandstorm you need to imagine.
   And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about."
   Haruki Murakami

            Beautiful new blond hairdo.

       Its time to start getting all of her childhood immunizations again. So, Claire, how do you feel about that?

   
      "In my own little corner in my own little chair..."

       Moving into her new digs.

         Three college bound cousins.

    Last week was a turning point. For the first time in over a year, I went in my car to do my things, and Claire went another way in her car (by herself) to do her things. It felt right and wrong at the same time. Legally Claire can drive, but there have been so many issues with her feet and ankles that it hasn't really been safe. She has made so much progress, though, that we decided it has become a safe option. I'm still not exactly sure how the whole foot measurement thing goes, but for those of you who are in the know about physical therapy, she has gone from about -27 to -3 when stretching her feet back, and her heels can touch the ground when she is standing. So she bought herself a new car. Wow. We also went on our first family vacation in two years. As I looked at my six (+ three + grandchild) children, I was overwhelmed with gratitude. It was a joy just to see them all together.
    I've also looked back at pictures from this time last year. I started this blog after the first six weeks following Claire's relapse, so I haven't talked too much about that time. There were a lot of decisions about treatment being made those first few days in the hospital. Claire had previously (in 2011) had a toxic reaction to one of her drugs, Methotrexate, that was injected into her spinal fluid. Historically the brain was a sanctuary for leukemia cells and relapse often occurred there, so it became a vital part of treatment to treat the spinal fluid with chemo so it could reach the brain. Despite her toxic reaction (and the fact that every one of her medical papers have a big red tag on them stating that she can't have IT Methotrexate) it was decided that her body would be re challenged, and four consecutive doses would be injected into her spinal fluid over four weeks. On August 1, 2015, after her fourth dose of IT Methotrexate, Claire started to feel really sick. Then her blood pressure and heart rate began to drop dangerously low. Within a matter of minutes our room was filled with doctors from the PICU (pediatric intensive care unit). Claire was septic, and she was quickly moved downstairs. Blood cultures showed that she had a bacterial infection, which was critically dangerous with no immunity to fight it. Her central line (a port) was removed and three other lines were placed. She was on heavy antibiotics. For several hours our room was filled with medical personnel just standing there staring at her monitors. After a few days Claire developed delirium, which is not uncommon in the PICU because your body loses all sense of its natural rhythms, and since Claire was so immunocompromised, we were in an isolated room with no windows. (We were so grateful to our nurse who fought hard to eventually get us moved to a corner room with lots of natural light.) Claire started speaking nonsensically, thought that her room was haunted, and saw things that weren't there. One night, as David was sleeping in a parent room down the hall and the nurse had turned her back for a moment to prepare meds, I witnessed Claire having a seizure. Her head, eyes, facial features, and arms all pulled to the right, and I screamed, "She's seizing! Help!" The room was immediately filled with people who went right to work, and someone went down the hall and woke up David. Claire was wheeled down to imaging for several tests. After the seizure she became non responsive. Every day we had several teams from many different disciplines visiting daily, everyone waiting for her to wake up. During this time it was the nurses who helped me keep my sanity (somewhat) and one particular doctor who would come in and sit for a while, chatting with us about things that had nothing to do with what was happening. Ministering. And there were definite moments of  "peace...which passeth all understanding." My friend whose son just passed away writes so beautifully about this peace on her blog, www.brendans-story.blogspot.com. When Claire finally did wake up and recovered enough to be moved back to the immunocompromised unit, she yelled out, "No! You said we were leaving! I want to go home!" In all of this journey, nothing has been more heartbreaking than when her mental capacities were compromised. That was almost unbearable, and I give huge props to the mental health professionals at Primary for helping her fight her way back. Even after she went back to ICS, she would often have a memory and she would ask me if it was real or not. Most of the time it wasn't. But the road to mental recovery was faster than her physical recovery, thank goodness. We have all decided that those six weeks after relapse were even harder than transplant.
    Now here we are, a year after those events. Claire is moving out in two weeks to start culinary school at her university. (I'm still taking deep breaths over that one.) My two younger daughters will go back to school and I will start rehearsals for my first show in over a year at that same time. The other day someone asked me how it felt to have my life almost back to normal. I was really taken aback by the question, which was well-meant. But in my mind I thought, "Normal? What is normal?" My life, Claire's life, our family's life, can never be normal again. But we can have joy and light and love.

    "Take the very hardest thing in your life, the place of difficulty, outward or inward, and expect God to triumph gloriously in that very spot. Just there he can bring your soul into blossom."
      -British artist, Lilias Trotter

      Claire's darling haircut. And I have sat in this amazing stylist's chair through so many of our toughest (and best) moments. We love her!

       Cute pixie side view!

      Claire and her new sweet ride.

        At physical therapy. Our therapists were so concerned when she stopped coming for the ten days that she was recently inpatient that they checked out the blog to see what was going on. She has made a lot of progress there.

        It touches!

          Enjoying a little Pioneer Day (a Utah state holiday) picnic.

        We were so excited to have the chance to see our dear friend and maestro of the Utah Symphony conducting a Rogers and Hammerstein singalong at the Deer Valley Music Festival. And yes. we sang along!

         Just because he is so handsome...

       Claire might have gone a little overboard buying treats for our road trip. On a happy note, her doctors were thrilled that she had gained almost ten pounds in less than three weeks!

        My cute kids, minus one daughter in law, with a weird photo of our orthodontist thrown in. Don't ask.

      Enjoying the beauty of Muir Woods.

     Is anything better than seafood by the sea?

        Lombard Street. The drive up was terrifying.

       Claire is behind me, but you can still see her long legs.

      Farmer's market picnic. The produce in California is ridiculously good. And my daughter Hannah's hair is ridiculously long.

      At the park with the grandchild, trying out the equipment.

       Planking.

       Free food everywhere!

         After years of watching cupcake wars, we finally got to try Sprinkles cupcakes. Sooo worth every calorie.

       Just spinning with Aunt Claire.

       At a recent cancer kid photo shoot, Claire had the honor of holding these pictures of our two beautiful, brave friends who have recently passed away, but who will never be forgotten. August 2016.

           August 7, 2015. What a year it has been.

     Home again, home again, jiggety jig. Sorry it took me so long to update, but Claire was discharged from the hospital on Saturday. What we thought would just be a day or two turned into a TEN DAY stay! It was long, tedious, boring, but there was also a feeling of calm because we knew that she was basically ok. In fact, a few days in we were asked if we would move from the 4th floor (the main oncology area) to the overflow pod on the 3rd floor because Claire was one of the healthiest kids there and didn't need a ton of care. (A fact that she repeated to more than one visitor, so it clearly resonated with her.) It was quite a change from our past stays, when she was one of the sickest kids in the unit. As I watched some of the kids who are just a few weeks out from their transplants walking in the hall at night, after visiting hours when it is safer to come out of their rooms, I was reminded just how far Claire has come. It was very humbling. So, over the last year, Claire has spent over 14 weeks inpatient. Here are a few facts you might not know about hospital stays:
     1. You wash and sanitize your hands so much, especially in the immunocompromised unit, that your knuckles crack and bleed.
     2. Parents aren't allowed to use the bathroom in the room. The bathrooms we use are down the hall and are shared by all of the visitors. This is a pain if you drink a lot of Diet Coke in the hospital because of stress/boredom and you have to go to the bathroom several times during the night. And you should always sleep in pants. Just ask the night nurses, who often see more than they want to.
     3. Speaking of bathrooms, doctors and nurses like to see just how much you are eliminating, so Claire always has to pee and poop (excuse the potty language) in a hat placed in the toilet. This is especially annoying when you are being given Miralax and Cenna to help your bowels REALLY work.
    4. Therapy animals are awesome.
    5. At Primary Children's Hospital there is a Ronald McDonald house within the hospital, and very kind families and organizations volunteer to come and prepare meals for families there. I met one family during this stay who was from Jackson Hole, Wyoming, and they were living in the parking lot in their camper while their daughter received treatment. Free, hot meals are a blessing.
    6. There are five Pokestops at our hospital, even though I understand that they have asked to have them removed because random people are wandering into areas where they don't belong. It was fun while it lasted.
    7. Because Claire had a chest tube she couldn't shower. But in the  immunocompromised unit you are supposed to bathe every day. So, every day, I helped Claire have a sponge bath. And it wasn't weird. In fact, it was very sweet. Parents of children with serious medical issues have such a rare opportunity to give some of the most selfless service I have ever witnessed.

      A few other updates: our dear friend who was in a coma is awake! We could not be more grateful for that miracle. On two days our nurse was a beautiful young woman we knew who had a bone marrow transplant herself when she was 16. We loved getting to know her better. And my life has been changed for good as I have watched two amazing young men and their families face the end of their battles with love and grace. On the Sunday that we were inpatient, Claire and I went to the LDS church that meets at the hospital. It is a very short meeting by our church's standards, only 30 minutes, and it is filled with families, doctors, nurses, and a even few patients. I thought my emotions were pretty in check until a nurse wheeled in a five and a half year old boy. (I know his age because I asked him. He was very proud of the half.) He had an IV pole, and he was clutching a much loved stuffed dog with bandages on each of its paws. When it was time for the closing song, this little boy sat up tall in that wheelchair and sang loudly and with conviction, "I am a child of God, and He has sent me here..." It was a moment I will hold in my heart for a very long time.

     Claire with therapy dog Winston...

     and Betsey.

      One of the many times her lungs were checked in the x-ray room.

      Finishing up some yummy creme brule cake from The Baking Hive.

    This beautiful young woman went to high school with my older daughter and her husband. After her unexpected and tragic death, her family generously built Sophie's Place at PCH, a music room that is filled with joy.

    Our cute survivor nurse.

   Trying to pass the time. I believe this air hockey table was donated by one of the young men I mentioned.

     The Rainbow Horse Pokestop.

    Two of our favorite clinic nurses left this on our window while we were napping.

    Everyone was very interested in watching the radiologist pull Claire's chest tube. Dr. B said she should have charged admission.

    And this is what new baby hair looks like after ten days of sponge baths,

    I was using Claire's car for a few days, and I opened the trunk for the first time since she relapsed. I found the contents so bittersweet that I had to take a picture of the play and musical posters, a novel, and a yoga mat.

    Passing time at today's clinic visit. Her lungs looked beautiful, thanks to steroids.

    So beautiful, in fact, that we treated ourselves to a little outing at the mall.

    Crap. It's been a couple of crappity crap crap days. Day 227. (I don't keep track, I just counted.) And it's only 3 days away from being exactly one year since relapse. AND here we are, back in the hospital. Like I said, crap. Saturday afternoon Claire called me (I was on a one day work related excursion to Montana with my hubbie) and told me that her right side felt achy. It continued to hurt, but only when she was lying down. Then we felt and heard some rattling in her lower right lung. On the 4th I asked her if she wanted me to call the doctor that day or the next, knowing that if we called them they would most likely want her to come in. She opted to go to the 4th of July festivities and call on Tuesday. My favorite quote of the week from Claire? "If they have to do a surgery I hope its just a little one because I have plans this weekend." These are the words of someone who has had a few too many surgeries. Sure enough, they had her come in (but not until Wednesday). That was the crappiest day of all. She started out not having slept well, smashing her finger in a drawer, then getting two cavities filled. Then we went to the hospital where she had an x-Ray and a blood draw. The x-Ray was inconclusive (why do they even start with that? Go right to the big equipment!) so they ordered a CT scan, which included an IV (nope, they didn't just leave the blood draw needle in) in order to inject contrast. Then back to clinic where we were told that she had a large amount of fluid around (not in) her right lung. Dr. H said that it needed to be drained, but since they couldn't do it that day, and since she wasn't in distress, we might as well go home, shower, pack a bag, and come back the next day. In discussing possible causes he said that cancer was way down at the bottom of the list, since last week's tests showed that Claire's marrow was still 100% donor and there was no detectable bcr-abl, to which I replied, "Hang on. Say that again?" I think maybe they could have led out with that information, right? It would have made the day just a little less crappy.
    So, today. We got in at 11:00, but they didn't actually take Claire in until about 1:30. Of course she hadn't eaten because she was being sedated. The procedure was short, and they drained over a liter (!) of fluid from around her right lung. It is still draining, so we are up to about 1.5 liters. There wasn't any blood in the fluid, and initial tests didn't show any signs of infection. One possible cause is the million dollar med she is on (Dasatinib) so they are switching her back to Gleevec (imatinib, and still very pricey) to see if she will tolerate it now. Dr. H told her to expect to be here at least through the weekend, maybe longer. Of course she had planned a party for a friend who is leaving soon on an LDS mission, and he is giving his farewell talk in church this Sunday. Stupid cancer likes to ruin the best laid plans.
    It's strange being back inpatient. Part of me almost feels like one might feel going back to visit an old neighborhood. I know this place and these people, and there is a level of comfort here. It helps that I don't feel a sense of panic over what we are doing. But we do feel anxious as our dear friend is having a very difficult time during her hospital stay right now, and our thoughts and prayers are with her. I ran into another friend who was bringing her son in for a transfusion. They are faced with unimaginable choices right now, and our thoughts and prayers are with them. One of our nurses today is a BMT survivor (not too much older than Claire),  and we are grateful for her life and story. And there are so many more stories. Even in the midst of trial and sorrow, we are surrounded by inspiration.
"The most beautiful people we have know are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen" -Elizabeth Kubler-Ross

          Claire waiting patiently for her procedure.

         In the dreaded CT scan machine, painted to look like a pirate ship. it is a children's hospital,      after all.

     Then into this Utah Jazz room to place the chest tube.

    So, Claire, how do you feel about being inpatient?

      She is draining, and this little pump goes with her everywhere.

     Independence Day festivities.