Day +60

WBC- 2.4
Hgl- 10.8
Hct- 33.5
Plt- 83
ANC- 1.7

Claire was released from the hospital and came home on Monday after a 5+ day stay. It was never determined what caused the fever and drop in blood pressure. There is a teeny tiny chance that two of her drugs decided to not play well together, but most likely it just goes in the category of unexplained fevers. (A category that most cancer moms are very familiar with.) Her doctors didn't want to go a whole week without seeing her again, so we had a clinic appointment today. Claire and I were both laughing about how awkward it was. I mean, we loved seeing all of the nurses, the psychologist, the nurse practitioner, and our old oncologist (who popped her head in) because they are, after all, our biggest social group. But when Dr. H came in, Claire had been watching a funny YouTube clip of the top 10 worst reality shows. She paused the screen when he opened the door, and as luck would have it, it paused right on a close up shot of a chubby person in a tight swimming suit. Just the bottom half. Dr. H said, "What are you looking at?!?" Super awkward. Then he asked, "So, what fun things have you done this week?" Wait, what? Can Claire do fun things? I thought she wasn't allowed to actually DO anything! We had to dig a little bit. "Um, we went to the mall and did one lap around, and Claire cooked her own lunch one day (sausage and onions) and a friend came over and they watched a movie." So awkward.

Being in the hospital was definitely a setback. Claire has very little mobility in her ankles and calves. She has no balance. This is probably a late effect of the very heavy chemo she received in the five months prior to transplant. She is going to start working with her physical therapist three times a week, in addition to doing her exercises on her own. He wants her to use a walker when she is out and about. (Not at all awkward for a 19 year old.) Also, Nurse Practitioner D pointed out that since her last clinic appointment, when she was taken off TPN (IV nutrition), and which was 11 days ago, she has lost almost 8 pounds. She talked about the possibility of an NG (feeding) tube. I reminded her that Claire threw up two NG tubes and one NJ tube, and that she couldn't tolerate any of the several feeding formulas we tried, which she would throw up every morning. So for now, we have to calorie pack. Of course, we've tried that before. But we will try again. Do you know how frustrating it is for a girl like Claire, who was headed to culinary school and who loves to eat, to struggle with that! And how frustrating it is for a girl like me, who also loves to cook and to eat, but who needs to lose the twenty pounds she has gained since her daughter's cancer relapse, to have a house full of ice cream and butter? I actually made Claire a smoothie this afternoon and used heavy cream as the liquid. Yep. 'Tis a puzzlement.

               Cool headphones over a super cute beanie? Awkward.

A photobombing grandma blowing her nose in the background? Awkward. (And for the record, Claire ate one whole chocolate chip pancake and about 4 bites of cheesy potatoes. You don't need to know what I ate.)

                A very awkward grocery cart. I'm not even a big ice cream person, and can usually resist, but Sprinkled Animal Cookie ice cream could very easily change your life. Trust me on this one.

Day +53

Today Claire was moved out of PICU and back to ICS. We are hoping to bust out of here in a few days. She had a low fever last night, but no other fevers. Her blood pressure is stable. Her platelets have dropped and her white blood cells have soared, both expected when the body is fighting an infection, even though her cultures haven't grown any specific bacteria. She has been quiet, but as awake and alert as she usually is. I was thinking about what happens when a normal person gets sick and has a fever. For me, I usually just go to bed. I might take medicine to manage the symptoms, but I rarely go to the doctor. I sleep. I never think about the battle that is going on inside of my body between all of the different parts of my blood cells and whatever foreign thing has invaded me, but our bodies work very hard to heal us. What a piece of work is man. No wonder I usually sleep right through sicknesses. Battles are exhausting! Claire's immune system is just not old enough or strong enough to fight those battles alone. She needs antibiotics, epinephrine, monitoring, doctors, nurses, and several liters of fluids being pumped into her at a fast rate to fight. (And yes, she has spent a LOT of time in the bathroom.) This is why she can't go anywhere, have too many visitors, eat or drink certain things, or do a multitude of other things. It's just too dangerous. Even though we know that the greatest dangers often come from things that are already inside of her body.

The PICU is a hard place to be for so many reasons. It is such a hotbed of human emotion. For the last two days there has been a large family camped out in the PICU waiting room. Lots of people, lots of food, lots of emotion. A small part of me (and I recognize that it is THE small part of me) is resentful that they have taken over this public space. I have kind of wondered why we don't have that happening. (I know the answer to that. We don't invite people into our lives that way, and Claire would be overwhelmed by it, anyhow. And maybe we are just too accustomed to being in the hospital, which is pretty sad.) It also makes me mourn the fact that Claire doesn't have any living grandparents to stand guard for her. But the much bigger part of me hurts for this family. They are obviously here for a serious and sad reason, and their grief can be seen on all of their faces. Everyone has a story to be told and a battle to be fought. We'll keep fighting ours.

Day +51

And just like that, another shoe drops. Claire woke up last night shivering. She took her own temperature, then came in at about 4:30am to tell us that it was 103.4. We immediately called the bone marrow team, and they told us to go right to the hospital. When we got there, bypassing the ER and going straight to ICS (immunocompromised unit), her blood pressure dipped dangerously low. After pushing fluids through all three of her central lines it was still low, so Dr. H decided to transfer her to the PICU (pediatric intensive care unit) to be safe. They are the only ones who can give her meds to help raise her blood pressure. She hasn't needed them so far, but her blood pressure is still hovering pretty low. She is also NPO, which means she isn't allowed to eat, darn it. Probably the worst part is that she was put in the same room she was originally in after she relapsed in August, where we all had several very dark days. The PICU is full, so this room is our only option. It is probably a bacterial infection, but those labs are still pending. Keep breathing, keep praying, keep moving forward.

Day +50

Day 50! Halfway to 100! Halfway there! But where? Where is there? What is the meaning of 100? Are we just looking for destinations that don't actually exist? Landmarks on which to hold small, hopeful celebrations? Because we know that this journey doesn't end on day 100. In some ways, it will just be beginning. The journey after transplant, as I understand it, lasts a lifetime. Things will always be measured in 'before and after' from here on. These are the questions I asked nurse practitioner D today in clinic. I also expressed them to our favorite oncology psychologist, with whom I also discussed my feelings of being nervous that things were going well and waiting for the other shoe to drop in a long series of other shoes. He said, "Boy, we've really messed up your heads, haven't we?" Love him. D said that they do a whole evaluation at day 100, including a bone marrow aspirate. They wean her off of her drugs. By then the transplant should have taken, and we move on to the next steps. (Btw, Claire will have no immunity to childhood diseases, and will need to be re immunized as she will be at risk for those infections.) We will go to clinic less often. All of these things were said along with the words High Risk Disease, as in, Claire is doing great, but with High Risk Disease we usually...with High Risk Disease we sometimes...since Claire has such a High Risk Disease, even though she's doing great, we might...Thanks for the reminders. And we are starting the 10000 dollar drug today, which is literally worth it's weight in gold, since it can seek out any Ph+ cells that might still have survived all of this business and destroy them.

Really, it's enough to make my head spin. Claire's, too, even though she usually seems a lot more zen about it. Then I came home and read an amazing quote that our dear friend and fellow 19 year old cancer warrior posted by Alfred D'Sousa, (and I think Thich Nhat Hanh), " For a long time it seemed to me that life was about to begin - real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time to still be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life. This perspective has helped me to see that there is no way to happiness. Happiness is the way."

Indeed.

   Claire with her 6'8" physical therapist trying to undo the damage that has been done to her body.

Me at the gym trying to undo the damage that has been done to my body. Oy.

Day +44

WBC- 4.6
Hgl- 10.6
Hct- 33.2
Plt- 103 (!)
ANC- 3.3

I'm a little late with the blog this week. I think I have a case of Januaryitis, combined with a smattering of PTSD. We went to clinic on Monday. I really like the bone marrow team, and our appointments have a different feel than our straight up oncology ones did. We always like seeing our nurses and other friends there. Things went as usual. Vitals, blood draw, central line dressing change (Claire does not like that), then this week we had a one hour infusion of the drug pentamidine to protect Claire from various illnesses. It lasts for a month and makes it so she doesn't have to take Septra, a very large pill, and she's always on board with one less pill. She is gaining a little bit of weight (yea!) and they are hoping to take her off TPN (IV nutrition) soon. I then asked our nurse practitioner D if, when I think Claire is doing great, she is REALLY doing great. I mean, should she be having struggles if this is really working for her? Or is it ok to be improving? Isn't it sad that my mind works that way? That I am almost afraid of things getting better? D answered that yes, she really is doing great. That she would go back to the team and say, "Claire looks awesome!" and everyone else would go, "Yes! Claire looks awesome!" without any subtext of "shoot. Claire looks awesome." We talked about medical theories and what the future looks like. I asked if it would be reasonable for David and I to plan a trip for our 30th anniversary, which is after the 100 days. She said that it is indeed reasonable. I hope I can convince myself of that when we are in NYC this spring.

 You know the phrase, "It takes a village?" Well, we have a village. A very large village, and we couldn't feel more blessed. I mean, kids still ride their bikes unsupervised and knock on their friends' doors to ask if they can play in our neighborhood. Crazy good, right? And friends and neighbors have been leaving little gifts on our doorstep every day counting down the 100 days. They have been meaningful, lovely, funny, yummy, generous, and entertaining. But our village extends beyond that. Claire has received packages in the mail, notes, letters, prayers from far and wide. Even our medical team found an assist program for the drug Desatinib so we will have a $0 copay. (This is a drug that costs $10,000.00 a month, and it is January, so we haven't met our deductible yet. Most medical bills can be paid over time, but they won't let you take drugs out of the pharmacy unless you pay the full amount. I expressed concern over what card I would put the $10,000.00+ on for that and all of the other drug refills we need next week, and the team got right on it for us.) I really love my village. Thank you.

So, Claire was watching Guy Fieri on Food Network, and he was eating octopus at a SLC restaurant called Aristo's. It was pretty early when we left clinic, 11am, and the place was almost empty, so we decided to chance it. (I didn't need much convincing; it's one of my faves.) 

                  Not a big fan of octopus, so I had the lamb tacos :)

                Claire receiving the pentamidine.

                    Makes me laugh every time. Well, almost every time.

Day +35

We had clinic again today. There was nothing new. Except that one of our cute nurses told us about her mother. She brought it up because her mother knew my mother when she lived in her assisted living home. And her mother had been battling stage 2 breast cancer, which is pretty treatable. But after her fourth and final round of chemo she became neutropenic (no ANC, where Claire was for quite a while in the hospital), got an infection that the doctors couldn't get under control, and she passed away unexpectedly. Things like this remind us just how serious all of this is. But we are going to keep plugging along, inch by inch, day by day. Dr.B said that after 100 days most people have about 50% of their energy back. We are a third of the way through the 100 days. The other day Claire said, "You know what? I'm starting to realize that 100 days is a really long time." Yes, my sweet daughter, it is. And of course, things don't end after the 100 days. It is just the next milestone, and there are more milestones after that. Claire had a few hard days this past week. She is lonely. She is tired. She is weak. She is frustrated that eating is still so hard. She would like to see some friends. (And, as well meaning as everyone is, my friends don't count as her friends. Nope. Not the same for a 19 year old.) I struggle, too. I told someone yesterday that I think there are a lot of emotions that we all still need to process, just as soon as the battle lines recede a little bit more. I am sometimes overwhelmed by what has happened and what is happening, almost like it's hard to believe, even though I have been right there in the trenches. I can't always relate to people, and I get frustrated that the first thing people say to me is, "So, how is Claire?", even though I know they are only asking out of love and concern. Now that my two younger daughters are back in school I have a goal of getting Claire out more. Tomorrow we are going to see an early matinee of Star Wars, hoping that the theater might be empty. May the force be with us.

Since I don't have much to say, I thought I would include one of Claire's poems that was published in her school's literary magazine last year. I put it on Facebook once, but I know that not everyone who reads this blog is on Facebook. It's a little dark, but that's what I like about it.


TABOO

I write based on Feelings.
But my feelings are different from most others.
Many girls my age worry about their looks
and their social standing.
Had I grown up unaltered like my peers
I might have also had this luxury.

I was fifteen.
Sound familiar?
It's the truth, not only a copied line.
I knew I was sick
but the cause was not easily discerned.
Only through the grace of God
and an able doctor
I underwent the torture that saved my life.

No one could see me, once the cancer had settled in.
And no one cared to.
I was the oddity, the taboo subject,
The joke turned reality.
"At least it's not cancer."
But what if it was?

Outside looked dead.
Inside WAS dead.
If I bled, would it come out red,
or the yellow and clear of the acid they put in me?
Perhaps the blood that came out wouldn't even
be my own.

Not to bore you,
or, more accurately,
Not to horrify you,
with the daily hell of doing nothing.
But the moral is endurance.
I am alive, if only barely.

I have often joked
that I am, at the same time,
the most and the least mature of all my friends.
I laugh, and they laugh, but behind that
there is a caution, don't broach
that taboo subject.

But I don't care. Laugh to hide the fear
and celebrate the moments
when you hear and can say, with truth,
"At least it's not cancer."

Claire Driggs
Pegasus 2015

       In a shirt given to Claire by her former nurse and fellow cancer warrior.

 Every Sunday night I fill Claire's pill box for the week. She takes about 19 pills a day.

        Faith and I enjoying the lights at temple square after her violin performance.