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.

The day after my last post Claire went back to the hospital with a fever. Fortunately she didn't have to stay, but it brought up a lot of emotions. Then I started taking her temperature a few times every day, and she started worrying every time her back ached. She went in for her regular clinic visit on Monday. Everything was fine. In fact, she will now only see her doctors monthly, but will continue to get blood draws every two weeks. The sad thing is that I was actually relieved that I had another commitment and David needed to take her to clinic because I was so afraid that things would not be fine. The fear is real, but it is no way to live.  So yesterday Claire and I had a heart to heart. We decided that it was high time to stop acting like she is an invalid, because she is not. I committed to only take her temperature if she is actually feeling sick. She committed to getting dressed every morning and having an actual day. And you know what?  I noticed a difference today. We had breakfast with friends, stopped at Trader Joe's, and Claire even played her Viola for a bit. I think we are making progress.

On another note, I learned that our sweet little neighbor across the hall during Claire's transplant is nearing the end of his battle. He, and all of the other children we've met whose lives have been far too short, will hold a space in my heart forever.

And, FYI, I am doing a benefit concert for Curesearch for Children's Cancer on Monday, May 23rd at the Mount Olympus Presbyterian Church, 3280 East 3900 South, SLC at 7pm. Your support would be greatly appreciated.

Another beautiful shot by Pepperfox Photo.

             Visiting the farm.

          Cheering the BYU lacrosse team on to victory. Go Cougars!

      At the cult favorite, The Pie.

     Big brother's graduating recital.

Remember this little guy from an earlier post? I think Claire is winning the hair growing contest!

           Nap time. (Jasper just started a diet and he is not happy about it. I can relate.)

                 My concert flyer, if anyone is interested.

Things That Make Me Crazy:

1. Cancer
2. People (not doctors) who THINK they know what causes cancer.
3. People (not doctors) who THINK they know what can cure cancer.
4. Rats
5. Sour candy
6. The extreme anxiety that I (and I think sometimes Claire) feel before every clinic appointment waiting to see what her blood counts are, or anytime Claire has any sort of ache, pain, or extra tiredness. Because normal people don't have aches, pains, or tiredness, right?
8. Orange and chocolate together
9. Did I mention rats?
10. Cancer

Every night I kneel down next to my bed and I pray. And, despite all of the pain and sorrow in the world, what occupies most of my time praying is my children. Claire sometimes, but not always, gets the lion's share. But what I really pray for in connection to her is peace. And trust. Peace that she is in God's hands, and trust that whatever that includes will be alright. There is a beautiful hymn written by a Utah poet who used to live in my parents' neighborhood, Emma Lou Thayne, that captures my feelings.
"Where, when my aching grows,
 Where, when I languish,
 Where, in my need to know,
 where can I run?
 Where is the quiet hand
 to calm my anguish?
 Who, who can understand?
 He, only One."

Today Claire and I made the drive down to Utah County to go to a new student orientation at the Utah Valley University Culinary Arts Institute. Claire was so excited! We mentioned it yesterday at clinic to the oncology psychologist, and he looked at me and said, "So, what are you going to do while Claire is at her orientation?" I took this as a hint that maybe I needed to step back a little bit and let her have some independence. (Deep breath) I didn't exactly wait in the car, (she does still need some help carrying things since she was using her walker) but I did sit in the back of the classroom and let her do her thing. (And for the record, I was not the only parent there.) She even raised her hand to ask questions, and she used her own money to pay for the required uniforms. Not unusual for a 19 year old, I know, but pretty exciting for a 19 year old whose social life was ripped away from her in no uncertain terms. And scary for me, because I am so afraid that it will get ripped from her again. But it was amazing to see her take a little bit of control over her life. The things we take for granted, right?

            Of course I was the weird mom who had to take a picture.

 After orientation we had to stop by The Galilee Grill for falafel and baba ganoush. Delish. And yes, those beautiful eyebrows were painted on. Hers haven't quite grown back yet, haha.

        A little shopping trip on a rainy day last week.

     You may be asking yourself if our outings always include food. Yes. Yes they do.

        Spending some quality time with her dynasplints.