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.

Wow. I can't believe it's been almost a month since I updated my blog. I've just been too tired. I mean, I am SO TIRED! It's like all of the sleep I've lost for the past (almost) year has finally caught up with me, and I just can't. But I do. Because that's what life is all about. Today was clinic day. We have done a lot since our last trip to clinic. Claire saw the reproductive endocrinologist, and now takes birth control pills for the estrogen. My favorite exchange of that day was when the doctor asked Claire if she was sexually active. Claire looked right at her and said, "I am the opposite of sexually active. No hand holding, no kissing, nothing. I am 100% sexually inactive." We also did extra blood tests and a 24 hour urine collection, which was kept in a tightly sealed and very well labeled container in the refrigerator. The things we have done, haha. Claire has started using my father's old walking stick when she is walking on grass (which had been on long term loan to a group) and it is awesome. She successfully finished her summer classes. I won't miss that hour long drive at 7am. Then clinic today. Her albumin levels are up a little and her kidneys are functioning well, so that may really have been a nutritional deficiency. Dr. H said that they wanted to do blood tests to check for bcr-abl (the Philadelphia chromosomal abnormality that was present in her leukemia cells) and chimerism (if she is still 100% Faith's cells). It's routine, he said. They always check this every three months. Really?!? It's like you just start to relax, then someone slaps you in the face with a wet towel. WAKE UP! We're still working on this! No guarantees, no sitting still. We work a lot on the outside, and that's what people notice the most, but what really matters is what's happening on the inside. As we were leaving Claire mentioned to our nurse practitioner that she has become very sensitive to spicy and salty foods. L said that was interesting, and it could be a sign of GVHD (graft versus host disease). She said that the best scenario would be to get a little mouth GVHD, which would mean that the graft is still active and doing its job but wasn't causing too much damage. So we are hoping that this mouth discomfort is indeed GVHD, and that it will stop there.

I recently heard someone say that using chemo to kill cancer is like swatting a fly with with a sledge hammer. You may kill the fly, but you leave a lot of damage in the wake. Is it worth it? Yes, yes, yes. Because the alternative crosses the unimaginable line. And we have had to walk too close to that line.

Truth telling. Because one of the purposes of this blog is to make people aware. And Claire has given me permission to tell truths. Because the effects of cancer don't always end when the cancer is gone, and because most childhood cancer survivors suffer from long term effects of their treatments for the rest of their lives. It was clinic day yesterday. For the first time since transplant I wasn't racked with anxiety for the few days leading up to her blood draw. And sure enough, her blood counts, at least the ones that we all look at first, were fine. Her platelets had even jumped up. But after a closer look her nurse practitioner L saw some things that weren't so good. Claire's albumin levels are very low. Albumin is a very necessary protein in the blood that is made by the liver. Their are a few possible causes for her low levels. The least likely is a nutritional deficiency, but Claire needs to up her protein intake anyway. A likely cause is extensive scarring in the liver, so Claire will be going back to the liver specialists and possibly having another biopsy. Ouch. There is also the possibility that her kidneys  aren't functioning well, and that she is peeing out any albumin that her body is producing. This whole scenario is why her feet have been swelling, and she needs to tell the docs if she starts coughing or being short of breath, which would indicate fluid in her lungs caused by the low albumin levels. Another side effect she is dealing with is the absence of reproductive hormones. In fact, on a hormonal level, she is about the same as a sixty five year old post menopausal woman. Except at age sixty five your body can accept that, but at age nineteen your body is nowhere near ready for that craziness. This is probably the cause for her nightly near-fevers (hot flashes), thin, dry hair regrowth, dry skin, and fatigue. It is also highly unlikely that she will ever be able to conceive children, but we knew that. Her uterus is ok, though, so she could most likely carry a child with a donated egg. (Maybe that is why the good Lord sent me a house full of daughters.) Anyway, a trip to the reproductive endocrinologist is on the schedule, too. So, on we go. Scheduling appointments in between her classes, trying to get things done before she moves out in the fall (!), praying that things keep moving forward. Oh, and looking into getting hand brakes put on her car. Between that and her handicapped parking sticker I think everyone will want to catch a ride with her. Truth.

Btw, if you would like to watch musical numbers from my benefit concert, especially the one featuring Claire, go to YouTube and search Mary Driggs. We raised over $3000 for Curesearch for Children's Cancer!

       Visiting the new Provo City LDS temple after class.

      Too much food at Doghaus to celebrate the end of school for Faith and Ella.

      Visiting the grandparents on Memorial Day.

Day 171

Plts- 110
Hct- 38.1
Hgl- 12.3
ANC- 1.4

We keep moving along, bit by bit, step by step. Claire started taking a class two days a week, so she is officially a college student. Our beautiful friend from London has been here visiting. Today we had a photo shoot for the amazing Anything Can Be project. (www.AnythingCanBeProject.com) Sadly, our little hospital neighbor passed away. He will not be forgotten. And I have been moved daily by the Humans of New York Sloan Kettering posts on social media. If you don't read those you really should. They are telling some very special stories about the world of childhood cancer. AND I am enjoying preparing for my concert on Monday. There just might be an appearance on stage by my very favorite survivor...so PLEASE come. The rest of our story is going to be in pictures today. Welcome to our world.

     Special guests at the Mormon Tabernacle Choir concert.

   Four beautiful survivors! From the left, Bethany (read about her journey at brilliantbethany.blogspot.com), Lilly (read about her journey at bebraveforlilly.blogspot.com),  the lovely Madeleine, and Claire.

       An exciting night at the theatre. (pioneertheatre.org)

      Thanksgiving Point! (Madeleine and I may or may not be a little crazy in a golf cart ;)

                          Hello.

             At the Storm Mountain amphitheater with three young women who have faced their own storms.

            In case you are wondering, Silver Lake is still snowed in.

      Getting makeup before the photo shoot.

      Cooking with the chef. They are making pasta. A huge shout out to the talented young Chefs Nick Fahs, Mike Blocher, and David Barboza for a great day and a delicious lunch. I can't wait for their new restaraunt, Table X, to open in my very own neighborhood. (tablexrestaurant.com)

          Stirring the clams. I don't even like clams, but these were delicious!

        Taking care of that pasta like it was a baby. (Cooked in water that was as salty as the sea.)

        Claire especially liked plating.

       The finished product. Isn't it pretty?

       Channeling her inner Julia Child.

      Presenting the very first Claire Driggs Family Cancer Survivor Scholarship to this lovely young lady. A lot of people in my neighborhood were generous supporters of this scholarship, and to them we give a very heartfelt thank you. We can change lives one person at a time.