Journal Entry

Friday, January 2, 2004

"And the prayer offered in faith will make the sick person well; the Lord will raise him up." (James 5:15)

So sorry for the delay for those of you who had been expecting me to post the preliminary results. Unfortunately, despite three phone calls to Dr. Suzi, the bone marrow prelim results weren't back before she left for a much needed holiday break on Tuesday. Today is the first we heard ANY of the news ourselves. Waiting was extremely difficult with a lot of worry and lost sleep! Know that wasn't healthy I tried to read and to pray, but that was often fruitless too. Minutes seemed to turn into hours, hours into months and days into years.

On Tuesday, Shayne took Christi to the hospital for her CT scan while I stayed back at Ronald with little Shayla. Thankfully, THIS TIME, he didn't have to chase her around the waiting room getting her to drink the second batch of contract like he did last time! (I wish I could have caught that October situation on video!! Someday we would have found it humorous!) You'd think with as many medications as Christi has to drink and swallow that she'd get used to it; however, that is not the case and she still continues to put up a pretty good fight regarding medications and needles. (like Mom and Dad need one more challenge - nothing is ever easy)

Thomas Team thanks to one of Shayne's awesome business friends back home!! As a result of Steve E., who has a wonderful contact here in Philadelphia, we went to see the Pennsylvania Ballet's performance of The Nutcracker Tuesday night. Yipeee!! Even though it was a great way to help take our minds off of the task at hand (hot and heavy cancer treatment effects testing) it was still hard for me to concentrate as I kept wondering what the tests results would be. We had second row seats and the girls were captivated and enthralled with the entire production. It was breathtaking! Thank you, sweet friends at Tiffin Scenic Studios for making it all possible!

Since I like to play "amateur radiologist" I wanted to take Christi to the MIBG scan and ECHO tests on Wednesday morning. Tension was thick as they took her about 1 1/2 hours late. (My friends know how very little patience I have so it was grueling for me to wait, but she was happy reading her book and playing Gamboy as the hands slowly ticked by on the clock.) During the scan, I was 95% sure that I didn't see anything new (PRAISE GOD THE ALMIGHTY!!); however, I was also fairly confident that there was still very faint uptake in both femurs. Ugh! I hate this wicked beast of a disease harming our precious children all over the world!!! I snapped a photo of the screen and sadly Shayne agreed that he also thought she was still MIBG positive when we returned back to Ronald that afternoon.

So our New Year's Eve was pretty much a downer knowing that the Double High Dose MIBG treatment probably did nothing good and unfortunately a lot of bad as a result of the "big-gun" treatment attempt that apparently failed. The girls wanted to stay up until midnight, but Shayla fall asleep at 10:00 and Christi and I soon after. Shayne went out the front gates of the house to watch Philly's beautiful fireworks at midnight. (Much more calm and quiet than last year when he ventured down to Times Square in NYC to ring in the new year with thousands of others!)

Because of the new heavy weight on our shoulders, Shayne wanted us to get out of our room on New Year's Day to help pass the time and to lift our spirits. The weather was great (about 49 degrees) and the girls insisted on borrowing Ronald's double-stroller so that they could ride and talk together; Shayne agreed to push the heavy load. Off we went to view the HUGE Mummer's parade here in Philly. We'd never seen anything like that before; we loved it! In case you don't know what a mummer's parade is, you must not be from Philadelphia. (Smile. I never heard of it until yesterday but it's a really big deal here!)

Seriously, about 15,000 Mummers perform in the ten hour parade of which we watched just over an hour of. Nearly $400,000 in prizes is awarded - which is a small fraction of the cost of costumes which can cost several thousand each. All "floats" must be man powered - and it's a very long parade route (nearly five miles). The mummers tradition dates back to 400BC and the Roman Festival of Saturnalias where Latin laborers marched in masks throughout the day of satire and gift exchange. This included Celtic variations of "trick - or - treat" and Druidic noise-making to drive away demons for the new year. Reports of rowdy groups "parading" on New Years day in Philly date back before the revolution. On January 1, 1901 this Mummers parade became the first "official" parade for the city.

After another night filled with worry and not much sleep, Friday morning f-i-n-a-l-l-y arrived and we loaded up to head to the hospital to meet with Dr. Maris. It was possibly the biggest blow yet knowing fully we've played the last big card to play and didn't get the response we all hoped and prayed for. Here are Christi's test results from the week of December 29, 2003:

Today's blood counts were unbelievably low. If there had been any doubt in the need to give her stem cells back, today's the counts proved the need. white .9 (ouch!), hgb. 7.2 (ouch - received a blood transfusion) platelets 24 (ouch! received a platelet transfusion) with an ANC of 423 (ouch! ouch!) Dr. Maris transplanted her stem cells into her mediport about 12:30 PM this afternoon. The pre medications had knocked Christi out, but because she was so excited about getting "my baby stem cells back" Shayne woke her up to watch. Shayla did not want to go back to Ronald with me so I took her to explore the gift shop to keep her content and out of the way. It was an uneventful 15 minutes as Dr. Maris pushed them into her from the syringe until she vomited profusely. The engraftment period should be about 10-15 days and then hopefully, God willing, she will have blood counts again! (Happy Birthday, Christi as your stem cells should restart your life today!) We were totally wrong in our decision to wait on not giving her the stems cells as scheduled according to the study in early December, but we had to prove it to ourselves that she really, really needed them and obviously she did. Unfortunately, we've also now delayed her next treatment by 2-3 weeks as a result, but we hope that proves to be okay in the end and this delay just gives us 10-14 days to catch our breath and to do blood checks and transfusions in Ohio.

With great praise, thanks and celebration we report that her CT scan was again negative and that her urine markers (VMA/VHA) are again within normal limits. Her ECHO (testing her heart function) was also fine. For the first time ever her MIBG was negative (PRAISE GOD!) however, her bone marrow again tested positive for neuroblastoma. UGH! UGH! UGH!! The aspirates were negative; however, there was nothing in her bone marrow to really get a good sample so that's debatable. An unbelievable less than 5% of the marrow was cellular which clearly indicated, under microscope, that she desperately needed her stem cells back as there was nothing healthy in her marrow. (Typically for a child of her age 70-80% of it should be cellular.) In the biopsies, he wouldn't give us a percentage but said that there are scattered tumor cells, but less than in October when she had her last bone marrow testing done.

Dr. Maris stated, "This is not where we hoped to be." "The MIBG chipped away at her disease, but didn't get rid of it." and "She had a response, but not a complete response." He also told us that while we seemed very disappointed, he many times sits with parents and shares with them that the MIBG didn't even hold their child steady and that their child's disease is much worse. I was pretty good during our intense 1 1/2 hour conversation regarding results and future options with Dr. Maris. I only felt tears rapidly slide out of my eyes when Shayne said, "What if we have had enough and just want to go home? We're tired." Of course we're still in this fight and we'll continue to make great sacrifices for Christi, but at that point I think we were just beyond exhausted. Dr. Maris responded that no one would blame nor question us if we make that decision. Well, we've had a few hours to reflect and we've made that decision. We're still in this fight! We're not giving up until we feel she has no fight left in her. While it was tough to watch her on the bed getting three transfusions today as she looked so very sick, tonight she's bouncing around our Ronald room weaving on her little loom, gluing a craft project with Shayla and watching Cyberchase. She's simply FULL of life!

Although we knew that even with a good response from this high dose MIBG attempt it was still palliative care, not durable, and that we would need to continue treating this beast, it is still absolutely heartbreaking and gut wrenching to learn and to try to accept the fact that this didn't get us where we had wanted to be - disease free. (I think I operate best in denial!) Yet, I still feel so very, very blessed that Christi doesn't have any "new" disease at this moment and that she appears to be stable with persistent disease. I am thankful and have joy, yet it's mixed with horrible emotions knowing how many of our little cancer friends are struggling so hard right now with their diseases taking off. God, please be with these little ones who are fighting insurmountable odds. It's not that they are not putting up the fight of their live, it's just that this disease is simply too much!! When it comes back it comes back it is resilient and relentless. Nothing can typically stop it. Cancer stinks!

While last year we set a new years resolution of "Cancer Free 2003" I guess we now have a new one: "Cancer no more, 2004!" which was emailed to me a few weeks ago by our friend from the Met in NYC (Thanks, Carolyn! Best wishes on your new adventure overseas!)

"Call unto me, and I will answer thee, and show thee great and mighty things, which thou knowest not." (Jer. 33:3)

With heartfelt thanks and gratitude for all of your prayers, love and support,

Thomas Team Mom - Angela

Christi's Joke: Right now I'm too down to even ask her for a joke. Sorry.

What's Next? .Dr. Maris has contacted Dr. Kushner (back in NYC) and Dr. Suzi and together they will give us a recommendation next week. Dr. Maris mentioned many possibilities of other Phase I and Phase II trials that Christi should qualify for in 2-3 weeks when her blood counts recover. This stem cell rescue should really give her badly trashed blood counts a boost. While none of these new clinical trials are promising, we're still hoping and praying that one of them will eventually get her into a NED status. Dr. Maris said by mid-next week they will have a recommendation for us. Until that time, we're heading for home tomorrow. We will have Christi's blood counts monitored and transfused at home and will enjoy our time at home pretending there is not a dark cloud over our heads.