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.

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.