Saturday, May 15, 2004
by Ann Marie Putter
A Butterfly Lights Beside use
But then it Flies on Again
We Feel Lucky to Have Seen It
Last Thursday morning I wrote: Hello friends! I'm writing today with hopes you'll please lift Christi up in prayer (again. I know your knees are worn out! I'm so sorry!) Tomorrow after school she and I will drive down to Columbus for our very early Thursday morning flight out - remember she didn't want to travel or be at the hospital on her birthday - so we won't! (Plus those sweet and amazing COSI friends of ours have a special birthday planned for her at Chuck E Cheese & a slumber party tomorrow night - yahoo! She's going to be so surprised!) She has tests/scans all day Thursday and Friday to determine if her disease is better, worse or stable since she started this new phase I oral chemo attempt. In order to continue with this ABT clinical study (which we would love to do) her disease needs to be the same or better, her heart function needs to be okay and her platelets need to be above 100.
Well, sadly today I just learned that her blood work conducted at the hospital this morning show that again all of her blood counts are down, but the real kicker which would disqualify her from this trial is that her platelets are now just 91. They must be over 100 to keep on this new trial. UGH!!! (I know, I know, we've been kicked off of studies before! smile. But now if this happens we're out of options!) We'd appreciate not only praying that we fly home with good news from the tests on Friday, but also that her platelets increase by Thursday morning to 100 or higher so that we can keep on with this new oral chemo. We know it's not a cure but my hope continues to be that this can buy us time until a cure is found for Christi and all of these great kids. THANK YOU!!!!
PS: She continues to feel FABULOUS!!!! Mastered riding a two wheel bike on Mother's Day and is still fully participating in school and ballet. I've received about 100 RSVPs from children coming to the Ritz on Sunday for her 7th birthday celebration. We've been blessed!
BLOOD COUNTS NOW:
This morning about 1:00 AM I wrote
sub: Christi Update: PRELIMINARY news "good"!!!
It is with tremendous exhaustion - after two grueling long days of traveling and rushing to and waiting for torture (oh, I mean tests) and more tests that I write this update for our dear friends. Keep in mind all reports are "preliminary" only, but I don't know of any other hospital in our great country where you an do a full battery of tests and even get ANY results within a matter of hours - amazing! (Thanks, CHOP! And we thought they were continually ranked as the top US Children's Hospital because they actually have a McDonald's within the hospital - hee hee!)
Preliminary tests indicate:
ECHO - fine
Pegboard test - no difference since before starting this oral chemo.
MIBG scan - clean
CT scan now clean!! (That new spot is now completely gone - thanks prayer warriors! Psalm 75:1
"We give thanks to you Oh God. We give thanks for your name is near. Men tell of your wonderful deeds."
Bone marrow - still positive for disease *UGH!* (about 5% on both sides, but it was 10-15% contaminated). Dr. Suzi and Dr. Maris both think this is really good news and definitely warrants continuing on with this new oral chemo (ABT 751) as soon as her blood counts recover.
"As soon as her blood counts recover"...........Hmmmmmm. Well, nothing is ever easy with cancer. Unfortunately, her low blood counts from Tuesday morning went even lower by our arrival in Philly on Thursday morning - actually almost low enough to need a blood transfusion. Even though they sent me home tonight with the new cycle of oral chemo, she will not be permitted to start them again until her platelets recover to 100. (They were 91 on Tuesday and down again to 79 on Thursday.)
Dr. Suzi told me that prior to learning the good news from Christi's test results she assumed that her counts were dropping because her disease was crowding her marrow now. Now she fully believes the low counts are an effect from the oral chemo she just ended on Tuesday. As I reminded Dr. Suzi, this ABT was not to affect her counts, but as Dr. Suzi reminded me this is a Phase I experimental study and a lot is unknown. Furthermore, Christi is only the 29th child to ever take this drug and is the very first child in the world at this newly increased third dosing level so a lot may be learned by her participation - like perhaps the dosage is too toxic now and needs to be lowered. On Monday at 7:00 AM here in Tiffin she will have her blood drawn at the hospital before school. No one wants to even guess how long it may be before her counts return.
Dr. Suzi also told me that Christi's disease is just like a smoldering fire that doesn't want to be extinguished. We need to put it out before it takes off. This disease is a beast. Once it takes off there's typically no stopping it. We often say you can beat it back, but you just can't beat it. Yet, we cling to the hope that somehow Christi will be able to do just that. We know that this ABT hasn't ever cured anyone, but we hope that it will keep her stable long enough until a real cure is found. When people ask me how I can even sleep at night, I think it is this hope that allows me to have peace.
On other happy notes: Christi and I were able to catch up with Alex and Liz Scot today. Alex just returned from Chicago and her taping on the Oprah show to promote her Lemonade Stand - raising $$ for pediatric cancer research "one cup at a time." Alex also has a book coming out in a matter of weeks. Liz told us that there is a likeness of Christi in her ballet costume in the book. We're anxious to see it. Today I took some pics of Alex & Christi in their matching "lemonade tee shirts" to use to promote the stand Christi will hold in June in Tiffin for Alexslemonade.com
I was also thrilled to finally see some of our dearest friends from NYC treatment days!! I just wish under totally different circumstances! Sadly, Michael has relapsed with NB for a second time; yet, we know Michael as "The Comeback Kid" so we have hope and of course our prayers remain strong. Before I left for Philly and was finalizing our arrangements to get together, Shayne said, "Give them a big hug from me," and this morning I did! May God be with Michael and his family.
Christi is STILL talking about the absolutely, positively, incredibly fantastic birthday celebration she had at Chuck E Cheese in Columbus with Traci and Jen and friends on Wednesday night. She was so pleasantly surprised; there couldn't have been anything better to put a constant smile on her face! And to have the party continue on at Traci's where she was able to go on a treasure hunt finding and reading backward clues - what a delight!!!!! And my sweet professor from last quarter emailed that she wanted to attend so she did! She even came along with her daughter (also a teacher!!) and her two beautiful, sweet little granddaughters I've been anxious to meet. It was a tremendous night for Christi and I!! God's people are great! We've been richly blessed!
Again, this was much, much longer than I intended! Thanks for all of your real and cyber hugs - especially the past few days, weeks and oh, almost years now! (smile) It just doesn't get any easier; however, knowing others care helps tremendously! Thank you! Early on my Mother told me that fighting cancer would be like a roller coaster - the highs would be really high and the lows would be really low and I can't think of a better description. Well, finally tonight - thanks to the great Creator, I am going to bed on the highest high I've experienced in a very, very long time! And thanks to Shayne telling me he'd take the girls tomorrow I can sleep in and work in my classroom for a few hour, I'm going to really rest well! Good night, my friends/family! Thank you!
With love, appreciation and gratitude,
Thursday's Blood Counts: 8.6 Hgb. (transfuse at 8.0. Normal 11.5-15.5) platelets 79 (normal 150-450), white 2.5 (normal 5.0-14.5) with an ANC of 1425. (ANC needs to be 1500 or higher to start more ABT) PT normal, but PTT again elevated - most likely due to the heparin used in her port during the collection of her blood.
Christi's Joke: Why was the snake late for school? He hissed the bus! (hee hee)
What's Next? Blood counts to be checked early Monday morning before school. If the platelets are 100 and the ANC above 1500 she shall start Round #2 of ABT on Wednesday. If not, we'll keep checking her blood counts until (hopefully) they're high enough to start this next cycle. After she's completed this second cycle, we must return to CHOP to repeat the tests/scans. I told Dr. Suzi I thought if she did well then we'd go two months in between having to test/scan and she told me that that will be true down the road, but it's too early to tell if Christi really is benefiting from this ABT so they won't let us get away with that for a few cycles. So, I can't start to book airline tickets yet until I know when she's going to start. She also has many summer activities planned that she isn't going to be happy about missing a little bit of one of them depending on when we have to travel: Bible School, Girl Scout Camp and the Ritz Theatre camp. I'm also taking three classes this summer so Shayne may have to make this trip.
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