Day +127, if anyone is interested

So, here we are, spending the day in clinic. It started out pretty routine. Blood draw, check up. They stopped her remaining immunosuppressant, which means one less drug. They (her medical team) had already taken her off of one anti nausea med, and suggested she taper another just to see how her body reacts. Then the IV team came in to place an IV (no central line anymore) so she could receive her monthly infusion of Pentamidine, a prophylactic, or preventative, antibiotic. After about 25 minutes she started getting a rash and red streaking up the skin where the vein that was being used was and feeling some tightness in her throat. I told a nurse, and within seconds there were 7 medical people in our small exam room taking vitals, stopping the infusion, asking questions. Claire was given Benadryl, which totally knocks her out. They have decided to place another IV in a (hopefully) bigger vein, slow down the rate of infusion, and continue giving the drug. We won't be getting out of here anytime soon.

Yeah, the IV team just came in. It took them two tries to get the bigger IV into the bigger vein. Ouch. Poor Claire lost it. After everything she's been through, which is A LOT, getting poked for an IV is still the very worst for her. I told one of our nurses that every so often we get a reminder that all of this, even the things that seem routine, is still very serious business. I'll just add one more notch to my anxiety belt, I guess.

Aside from today, aargh, things have been ok. I think. No, they really have been. I'm seeing bits of improvement in Claire's walking. She has had a few small adventures like seeing the musical at her old high school and feeding some penguins at the aquarium. David and I went to NYC for 6 days (it was amazing!) and Claire and the other kids did great without us. I did get one funny text, though. I had given the girls chore assignments so the house wouldn't actually fall apart while we were gone. The second day we were away Claire sent this: "Well, it turns out you need  to be able to walk and be strong enough to push a vacuum in order to vacuum, and I discovered today that I can do neither. So I had to pass off the job." Points for trying, right?

One bright spot today is that her blood counts look pretty darn good.
WBC- 4.3
Hct- 35.1
Hgl- 11.3
Plts- 119
ANC- 2.2
And, even though our children's hospital says that it doesn't offer soda to patients anymore, you can still find Coke in the oncology refrigerator. Because sometimes, when you are a kid battling cancer, the rules just need to be broken.

Day- whatever. We're not counting anymore.

Well, we weren't supposed to go to the hospital for two weeks, but every cancer mom/kid knows how that goes. Claire's labs showed that she was a little under what the bone marrow team wanted for immunity, so yesterday we went in for IVIG (intravenous immunoglobulin therapy. Not immunogoblin therapy, which I said a few times before learning how to say it right.) IVIG is an intravenous blood product containing the pooled immunoglobulins from the plasma of between 1000 and 10,000 donors. (Try saying that three times fast) It is given to children and adults who have certain immune deficiencies. It took about three hours to infuse, but Claire tolerated it just fine. Then today, wonder of wonders, she had her central line taken out. Holy cow. In some ways it was more emotional for me than Day 100. Her central line (triple broviac-the Cadillac of central lines) was literally her lifeline. It was how she received chemo, nutrition, and the life saving bone marrow. Taking it out was tangible evidence that her body is functioning on its own. It felt like cutting the umbilical cord. Claire was giddy. She was smiling and cracking jokes all day. And everyone was thrilled for her, from the OR registration person (who has seen us too often and who got chills when she found out why we were there) to the tech and nurses to the surgeon and anesthesiologist (who was also a cancer survivor, and who offered Claire his arm as they strolled to the operating room). Claire laughed about the enormous, "one size fits all" scrubs she was given, calling them billowing and flowy, and had the song Do-Re-Mi from The Sound of Music stuck in her head. The whole surgical procedure took about 15 minutes, and by the time I was allowed into the recovery room, Claire was watching Family Feud and drinking a slushy. As the nurse was going over our discharge instructions and telling Claire to take food slowly, and maybe just start off with something bland, I started laughing and had to tell him that she was already planning to stop at Hires on her way home. She has done this whole anesthesia thing so much that she knows what she can handle. Tomorrow she will take the bandage off and have a very long shower.

David and I have both said to each other, "Did we really just do this? Did all of this really happen?" And Claire. She just goes through things. She just keeps putting one foot in front of the other. She did say today, as we were driving home, that she hopes to get into the dating scene. She never dated in high school. She went to some girl's choice dances, but being labeled as the girl who has/had cancer from age 15 on on top of being quirky (and by quirky I mean awesome) really puts a kink in your social life. Plus, being almost six feet tall isn't always easy as a teen, even though Claire likes being tall. I can't wait until she can start living a normal life and find her people! Not having tubes coming out of her chest is definitely a start. I will leave you with my favorite thing that Claire said today, "I do love me a good fried green tomato!" Ha! Happy Wednesday!

             Back in our familiar room. Thanks to everyone who donates blood!

          This dose, according to the pharmacist cost a couple thousand dollars.

                    Fun and games in the OR registration area.

                         Goodbye, central line. You've served us well.

        Have you ever seen anyone this happy about going into surgery?

           All that's left is a bandage, a few stitches, and one more battle scar.

 She hasn't had a fountain drink or fry sauce since November, and they tasted GOOD!

DAY +100!!!

WBC- 3.7
Hgl- 9.9
Hct- 30.7
Plts- 119
ANC- 2.1
Percentage of detectable abnormal (leukemic) cells and/or bcr-abl (Philadelphia chromosome)-
           0.00000%
Perentage of donor cells in the bone marrow-
            100%

You know that feeling you get when you are waiting for news, and you don't know if the news will be good or really, really bad? Maybe you found a lump, or you had a very important audition, or you see a police officer walking up your sidewalk? Well, I've had that feeling all week. Claire had all of these tests done- really big, important tests- and then we had to wait. And because we have had the bad scenarios happen, we know that bad scenarios are a real possibility. We aren't new to this rodeo. We have rung the "end of treatment/end of chemo" bell. Twice. In fact, as we were getting all of the business of our appointment done today (blood draw, dressing and clave change of Claire's central line, Pentamidine infusion) one of the bone marrow nurse practitioners poked in her head and said, "How are you guys doing?" I replied by saying, "I'm not sure yet. How ARE we doing?" She smiled and said, "Today is a good day." That's when I finally took a breath. Dr. H had Claire read the report. 0.00000% abnormal cells and 100% donor marrow. David said he didn't know whether to laugh or cry. Her heart is functioning fine, but they will keep monitoring it because heart problems can develop later. Her pulmonary function has decreased a little, so they will test again when respiratory/inversion season is over. Dr. H asked Claire if she would like to get her central line out now and get IV pokes at her appointments, or if she would like to keep it in for a few more months and avoid pokes. She chose now, so that will probably happen in the next few weeks. (She hasn't had a full shower or bath since July. She just uses a handheld shower head and tries not to get her chest wet.) They will continue to reduce her immunosuppressant and increase her Dasatinib dose. When you get an organ transplant you take anti rejection medication for the rest of your life, but that's not they case with a bone marrow transplant. The Dasatinib, however, she will continue taking for a few years. Even though we have reached this big milestone, the journey is far from over. Our appointments are every two weeks for a while instead of every week. At the six month mark she will start all of her childhood immunizations again. She has no immunity to anything, so she needs to wait until after flu season to really jump back socially, but many of her restrictions are over. She can actually eat salad and maybe even sushi! Dr. H even said it was reasonable to start talking to Claire's university about her going back to school in the fall. But, because of a study we agreed to, she will be monitored for the rest of her life as a bone marrow transplant recipient.

True confession. I have a lot of resentment. I know this about myself, and I'm working on it. I resent other kids Claire's age who are living a normal life. I asked Claire today if she felt resentment like that, and she said no. And she really doesn't. She just doesn't think that way. She has a few cancer friends, but, strangely enough, she is not as exposed to the cancer community as much as I am. In the past few weeks I have seen precious children die, others who are running short on options, some in the heat of treatment, and some who are celebrating time off treatment. Just like these families, cancer has changed us forever. But, despite my resentments, I have learned some beautiful lessons. I recently spoke at a large church meeting. Here are a few of the things I felt inspired to say:

"As hard and as lonely as it sometimes is, the opportunity to put aside my own interests and care for Claire during this journey has been the greatest privilege of my life. If you didn't know Claire and you met her for the first time she might not seem too remarkable. She's kind of quiet, she likes anime and science fiction, and she herself admits to often feeling awkward in conversations or groups of people. But in caring for her I have had many, many moments when Heavenly Father allows me to almost see her as He must see her, and I can say with certainty that she is absolutely the most remarkable person I know. And the beauty of that, I believe, is that He sees all of us that way. I believe that in His eyes and through His love we are all remarkable - capable of doing and being things we never thought possible.

We are often asked at the hospital how we can remain so positive and happy, and the answer is simple. It is because we are lifted and sustained every day by God's love. And we have seen this love through so many people, through our friends, neighbors, Ward,and particularly through our team of nurses who live their lives each day in such selfless service to others. We don't know what the future holds, none of us do really, but we do know that we are in God's hands.

In the October 2009 LDS General Conference Pres. Deiter Uchtdorf said, 'Though we are incomplete, God loves us completely. Though we are imperfect, He loves us perfectly. Though we may feel lost and without compass, God's love encompasses us completely. .. No matter our distress, no matter our sorrow, no matter our mistakes, our infinitely compassionate Heavenly Father desires that we draw near to Him so that He can draw near to us.' "

BTW, I want to give a big shout out to our neighbors, who have left gifts on our doorstep every day for the last 100 days. It's been so fun! And I'm going to keep blogging about this crazy journey that is far from over.

      And sometimes, if you are very lucky, you get Mexican coke in a bottle :)

         I see a ponytail in her future...

                         These two love a good puzzle.

      Claire looking not too happy at the dreaded pulmonary function test.

      Blow, Gabriel, blow! (Don't worry if you don't get it. It's a musical theatre thing.)

             Can you spot the true superhero?

              Ummm, whose appointment is this, anyway?

                       Toasting 100 days, and a long life ahead.

Day +92

From the Seattle Cancer Care Alliance webpage:

A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “chimerism” in hematopoietic cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue. A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue.

Today Claire was tested to determine chimerism, or the perentage of donor marrow to host marrow. She had a bone marrow aspirate on one side of her hips and a bone marrow biopsy on the other. An aspirate takes a small sample, through a needle, of the liquid part of the marrow, while the biopsy, also using a needle, removes a sample of the solid part of the marrow. Thankfully these procedures were done in the Rapid Treatment Unit instead of the OR, which makes it much easier. They use light anesthesia and she is only in recovery for an hour or less. We spent most of that time talking about food and restaurants with the nurses, who know us pretty well by now. She didn't even use a wheel chair when we left. On Thursday Claire will have an echocardiogram to see how her heart is functioning after all of this business, plus a pulmonary function test to see how her lungs are holding up. They took extra precautions during radiation to protect her lungs, but there could still be some damage. They also reduced her immunosuppressant a little bit more and took her off her liver medication. Since going back on Dasatinib her platelets have been dropping (which always makes a cancer mom nervous), so last week they cut her Dasatinib dosage in half. Today her platelets were back up, almost doubling from what they had dropped to. Yea! Next Tuesday, on actual day 99, we will have her 100 day evaluation and find out the results of all of these tests. We are hoping (and praying) that she is a true Chimera, which means either (1) an organism containing a mixture of genetically different tissues, formed by processes such as...grafting...or, (2) a fire breathing female monster with a lion's head, a goat's body, and a serpent's tail. Maybe she'll be both.

     Playing a fun game given to us by our neighbor.

       Sitting on the floor may not seem like a big deal, but she wouldn't have even tried it a month ago.

    Claire's sweet new dynasplints (she has two) that help stretch her ankles and calves.

          Recovering in the RTU.

Of course we went to lunch after. The tiny little juice boxes make me laugh, but Claire can't have drinks out of a machine because of potential bacteria, and this was the only sealed drink PeiWei had, haha.

                         That's my girl. I hope.

Day +81

Last night we took the family, Claire included, to a great event sponsored by an amazing charity. It was probably too soon to try something like that, but it seems like her doctors are encouraging her to do a few things to move back into normal life, so we went. Well, it turned out that Claire's feet, which still can't fully flatten to the ground when she walks, were causing her a lot of pain. And the event was much more crowded than I had anticipated, which made me very uncomfortable. So we ended up leaving shortly after we arrived. Then Claire almost fell going into our house, and she ended her day with a good cry in her room. In some ways it seems like the closer we get to this 100 day milestone the harder it gets. I lose sleep because I am so afraid of what might happen. My mind is often spinning because I don't know what things will look like next week, next month, in six months. I've said it before, but this is such a hard age to battle cancer. I know there is never a good age, but these young adults are in such a unique situation. My husband and I have six children, and when they were little we were pretty strict parents. I never had the primary goal of being a friend to my children. I always acted as their mother first, and the friendship came after that. And we have worked very hard as our children have grown to give them independence. I mean, six kids. We don't need any forty year olds living in our basement, right? But seriously, we make very conscious choices to try and support without meddling and guide without telling our adult children what to do. It's not always easy, but we went into this whole parenting thing wanting to help our kids become happy, contributing adults with their own lives. Then there is Claire. Independence is almost impossible. Encouraging it is sometimes painful. And the thought of her possibly living on her own later this year seems incomprehensible. I know four other kids Claire's same age who have or are battling cancer. Of course, there are more, but these are the ones that I know. I know their families. I watch their journey. I talk to their moms. Two of these young adults are, like Claire, still fighting. And two of them are, hopefully, done with their battle. One of those is a dancer and a college student, and I love quietly watching her life. The other  is serving as a missionary for the LDS church, which is so amazing. I want this for all of them. I want them all to start college, live in an apartment, find their passion, fall in love. Remember how exciting that was? But in this moment it is hard to see how that will happen. I have faith, it is just hard to have vision. The mom of one of these beautiful young adults who recently reached her 100 day post transplant milestone put it this way.
 " Unless you’ve lived in this world, you may not understand why we did not immediately jump up and down and shout with joy.  This has been our world for so long.  We’ve learned that with the Savior's enabling power, we can do hard, really hard.  We’ve taken up residence in a place we feared.  And we’ve found a home of sorts, here. We know how to do long hospital stays, multiple IV lines, beeping monitors, space age procedures, and a host of other things.  We’ve met people on this side of the door who have become lifelong friends.  We pray for those standing vigil each night beside a child’s bed and for “sisters” who are continuing the battle in their worlds of cancer.  Now, there is trepidation of a different kind.  Can we move outside this world somewhat and claim another? "
Beautifully said, don't you think? But for now we will just focus on this next goal. Try to live in the moment. Breathe deeply, love fiercely, and trust that we are in God's hands.

In parting, I leave you with a picture of some brand new hair starting to grow. Just in the back. Not on the top. I mean, come on! Seriously? Geez!

Day +75

Wow. I am running out of insights and things to report. Which is kind of awesome, in a way, right? I love weeks with no drama. As we hoped, Claire's platelets have finally recovered from her unexplained fevers and hospital stay and are now up to a respectable, if still low, 121. She started Dasatinib last night and I had a hard time falling asleep for fear she would have another fever, but she didn't. I hate to say it out loud because I don't want to jinx it, but it seems like she has turned a corner. She is starting to eat again, and she is HUNGRY. She's also gained a few more pounds. (How would it be to have people be excited about that? I wouldn't know, but it certainly gives me perspective.) She hasn't been reading because, you know, chemo brain. But this week she decided she wants to reread all of the Harry Potter books, and she's almost done with the second one. She started and finished a puzzle. And for the first time since she relapsed in July she actually drove the car. It was just a few blocks, from the library to our house, and it was a little awkward because her feet don't flex very well. But I thought it was a very big and very important step toward 19 year old normalcy. Oh, and we snuck her up to Logan this afternoon to visit our son and daughter-in-law. Technically it was probably a little too far away from the hospital for her to go, but she was so excited to go somewhere! Especially since we are experiencing horrible air quality here in Salt Lake City due to our infamous inversion and going outside isn't the best thing for her. (There were blue skies today in Logan!) But she really had fun, so it was worth it. Now that I am writing this I am realizing that I actually do have things to report. Good things. And for that I am very, very grateful.

                          These two love a good puzzle.

                      Playing Extreme Candyland. It was hilarious!

       Two of our amazing nurses enjoying the cupcakes we brought into clinic for Valentine's Day. I guess we should have brought wet wipes ;)

Cuddling with the fattest cat in the world. (Don't talk to me about kitty diets. Believe me, we've tried.) Its like sleeping with a tiger. A very slow tiger who loves popcorn.

Day +67 (I promise. It's not day +68)

Clinic day. More of the same. There wasn't much change in blood counts, but with today's medication changes things should go up a little. I might have explained this before, but Claire has been on two different immunosuppressant medications to make sure that her blood counts don't recover too quickly. Things need to go nice and slow to prevent heavy graft versus host disease. Today we stopped one of the immunosuppressants, and in a few days we will stop her IV anti-fungal medication. The fewer the better, I say. Her platelets are not yet high enough to start her 10000.00 medication (Dasatinib) which we keep in a locked safe that we have buried in a snow cave in the back yard guarded by our fierce guard dog Jemma. (Just kidding. We keep it with the other meds. You wouldn't really want it if you didn't really need it. Trust me on this one.) We were done in an hour and twenty minutes, our shortest BMT clinic visit to date! Afterwards we went to the zoo to try and see the new baby giraffe (it is apparently too cold for her to be making public appearances just yet) then went to an Irish pub type joint for some fish and chips. (Claire had been craving them all week.) All in all, a pretty nice day. I'm sorry for the overuse of parenthesis in this paragraph. (Apparently I have run out of more effective writing tools.)

Once again this week I was asked, "So, what's the prognosis?" It was as casual a question as "So, what's the weather like outside?" I was silent for a few beats, then said, "Claire is hanging in there." Seriously, why would you ask that? And what makes you think my child's chances of living or dying are any of your business? Or that I would want to discuss it so casually? God has brought us this far, and He will carry us through whatever the future holds. I can't emphasize enough how much a cancer parent hates this question. Ok, rant over.

On a happier note, I was very excited to start the process this week of setting up a scholarship. Woohoo! It is The Claire Driggs Family Survivor Scholarship, and it will be offered to a survivor of childhood cancer or the sibling of someone who battled childhood cancer. Right now it is just for Olympus High School students, but I hope in the future to be able to have one Olympus only scholarship and one Utah scholarship annually. I know several incredibly bright and talented cancer survivors, Claire included, who didn't receive any of the national scholarships they applied for. Claire ended up getting a full four year tuition scholarship from her university, plus two Olympus scholarships, so she is in good shape. This scholarship is my way of giving back, expressing gratitude, including my kids (who will hopefully make up the selection committee. I could never choose!) and honoring some of the most amazing human beings I have ever met. I feel like I just had a baby :) So, if you ever need something to donate to...(last parenthesis of the post- I now have something to tell people when they ask what they can do for us!)