Journal Entry

Monday evening, November 17, 2003

Winners and Warriors
Written by Raymond (NB IV SURVIVOR!!!)

The winners have very good faith and have crossed the finish line in the race to heaven.
The warriors continue to fight with all their power and bring honor and pride.
They bring joy and help us unite in the fight of cancer.
For in this race, there are no losers.
Sadness will come but joy and fun are abundant.

Greetings to all of you still fighting in Christi’s Corner! Thank you!! You’re the reason we’ve made it this far! Thank you for your loving divine intervention for our sweetheart! We’ve got a long way to go, but I’m feeling a wee bit of inspiration these days. The above poem was written by a gifted child, not just identified as academically gifted, but gifted in his winning bid over neuroblastoma as well and he continues to use his gifts and has created his own website featuring his neuroblastoma fighting friends all over the world. Please check out his Christmas tree which features NB warriors and winners.

You can click on each child’s photo to go to their website. (Christi’s picture is in the bottom, right hand side of Raymond’s tree.) Thank you Raymond for all you continue to do for others. God bless you!!

Seven days after Christi’s first high dose MIBG treatment, we were back at CHOP and she was still emitting radiation when it was measured (.4). I don’t know if that’s good or bad, but I feel like perhaps the radiation was still clinging and hopefully destroying those horrible NB cells a week later. During her infusion the radiation level was up to around (44.0). The safe level in order to be released to the public is (7). Eighteen hours after her infusion Christi’s level was down to (6.7) which earned her the golden ticket for a discharge and an unofficial world’s record!!

About twenty minutes after she finished her MIBG scan last week, the results were in and the MIBG scan was negative for the first time ever. Praise to our loving Father!!!!! The blessing was quite profound and being the "doubting Thomas’s" that we’ve become throughout this ordeal, three doctors confirmed that it was negative for disease and showed no uptake (Dr. Maris, Dr. Suzi and Dr. Radiologist – don’t know his name, but I’m sure I’ll see it on a bill in about four weeks. Hee hee). Again I really don’t know yet what this means, but we are thrilled (yet with guarded caution) about having no uptake show in the MIBG scan. We are singing His praises and are most thankful to have been so blessed by this wee bitty step forward as well as to still be in the fight!!! Of course, the real test will be when her bone marrow testing is conducted. Our prayer request is that our sweet six year old’s bone marrow will also be clean for the first time when tested. We won’t be surprised; however, to learn that the cancer remains.

While her blood counts are soon to plummet, Christi’s current counts this week remain great – just like last week’s. (November 11th’s labs were: Hgb 11.3, white 3.6, platelets 195 with an ANC of 2,754! - all normal, Go Christi!) and today’s labs were: Hgb. 10.9, white 4.7, platelets 110 with an ANC of 3,666. While not happy about having to get IV sticks in her arm instead of simple and quick finger pokes (That she doesn’t like either.) I’m happy that the lab results were very, very good. Radiation takes a while to show signs that it’s working (usually 4-6 weeks) and we know that we’re heading downhill fast from here on out with her blood counts soon falling.

In my opinion, for the very first time, things are beginning to look up – if only a teeny bit. Of course this is neuroblastoma and that diminishes any slight glimmer of good fortune, but nevertheless, I am sleeping a wee bit better at night since all of her scans and tests are showing "normal" (That’s a bit misleading as the jury’s still out on the marrow testing yet to be conducted).

So, why subject her to the 131-MIBG high dose radiation again if her scans are negative? Oh, I’ve asked myself this 200 times, but I always come back to the same conclusion – we have no other realistic choice. MIBG therapy has the most proven track record of the remaining options. While it tends to work (about 40%) it is short term and doesn’t last. That’s why it is considered palliative care; it’s not curative in and of itself but we think that is an important part of a nontraditional route to a cure. It is well known that neuroblastoma is sensitive to radiation and until two weeks ago Christi had not had any radiation. (You can become refractory to radiation, just like Christi did with the chemo meaning it no longer works as the cancerous cells have changed themselves to become resistant to it.) Prior protocols used total body irradiation as standard fare. Sloan Kettering has in the past used antibodies with radiation attached to them. The theory behind this new rapid, double high dose infusion clinical trial is that more radiation is better than less radiation. There is lab data that supports a better response to higher dose MIBG therapy, however, the maximum dose was set at 18 in prior phase one study. This current study will allow Christine to receive 30 and hopefully achieve a more durable response. The known toxicities are to the bone marrow and some evidence of hypothyroidism. Unfortunately, there are not a lot of long term survivors who have received the treatment so no one knows for sure what happens down the road. The key will be to move on to another novel therapy quickly following this treatment. She is scheduled to receive some of her stem cells back in December 2 hope of speeding her recovery and moving her on to her next treatment. No one knows for sure what effect this new treatment schedule will have on her. Of course that’s where the toxicity questions come in to play. (How much is too much?) That’s exactly what this dose escalation Phase I study in which Christi is participating is measuring. We’ve signed the papers and received "the talk", we know it is risky and even may be life-threatening, but we also know it may work. And if indeed this works as hoped, she’ll maybe only have about one more year of treatment – pending no relapse. We continue to research our next options (cis-retnoic acid, fenretinide, vaccine, antibodies, proton beam radiation, etc.) and try to determine what is best and what CT will qualify for because in a case as bad as Christi’s (refractory to traditional treatment) we don’t want to leave any stone unturned and we’re totally out there on our own making treatment decisions. Praise God Shayne is absolutely brilliant and he has gotten Christi this far!!! I continue to pray for wisdom. Of course we have a very long road yet to travel before we can even get to a next step in treatment. She hasn’t even jumped over this hurdle yet – much less cleared it. We’re hoping all goes well and that by mid-December she’ll have moved on to her next treatment (whatever that may be). Shayne’s absolutely amazing - each and every day reading, researching and consulting with oncologists and other experts all over the country. Thank God for the Internet!! Thank God for doctors and experts sharing their findings and information with us!!!!

The girls have been getting along like best friends. Sadly, Shayla left with my Aunt Marty and Uncle Jeff today. (Marty is also Shayla and my Godmother!!) We hope to all four be back together somewhere in about a week. She will be staying with my best friend this week and attending preschool to keep things as normal as possible in an abnormal world we live in. Who knew that the friend I’d make in kindergarten would still be my friend so many years later? (Thanks, Becky! I love you and don’t deserve you!! And I hope Shayla doesn’t teach your boys any bad tricks! Hee hee!)

Christi continues to pose very intelligent questions; however, she’s yet to ask, "Why is it okay for them to make me radioactive, while everyone else has to wear radiation monitors, stand behind lead shields and be far, far away from me?" I hope that question never comes!! Recently, we received a great email from a sweet Mother of a beautiful angel who sadly gained her wings this summer. I don’t know how, but this tremendous Mommy has continued to help and support us. She wrote:

"Christi, keep showing the scientists how things should be done. Angela and Shayne, take a deep breath and hang in there. We need a winner." We thought her email was so simple and yet so profound. Shayne and I again shed tears as we mourned over their horrible and devastating loss after reading her words.

I received an email this week from a friend telling me she ordered Christi’s cards from the NCCF and that they’ve arrived and are beautiful. I have not yet been home to see mine, but I’m looking forward to doing so soon. I thank all for buying her cards and supporting childhood cancer research. THANKS!!

Finally, I’ll leave you with a true story that has brought tears to my eyes more than once since I read it on our listserv. You may have seen it on CNN this week. Brandon, a young toddler from Atlanta with Neuroblastoma, was "himself a miracle" this week. Kristin, Brandon’s Mom, who I know from our NB listserv, emailed us all this week to tell us that when the family flew to California a few days ago for scans in preparation for Brandon’s paraspinal surgery the tumor was GONE!! A previously large visible spinal tumor ready for resection had literally disappeared. Truly, a MIRACLE. This story gives so many of us hope and faith that there is a cure beyond the walls of western medicine. We are so thrilled for Brandon and his family; he is disease free for the first time in 2 years. Praise God!!!! Brandon’s story is reason enough to keep hoping, praying, and fighting everyday for Christi and for all of our cancer fighting friends all over the world. Thank you to the Christi Crew who believes that Christi Can Conquer!

With love, thanks and appreciation,

Angela (wife to Shayne, mommy to four year old Shayla and six year old Christi: Diagnosed 9/11/02 Stage IV NB – thoracic primary tumor, 98% bone marrow metastasizes. Unfavorable Shimada, N-MYC. Treated Columbus Children’s on #3891 protocol for four chemo rounds. Mixed results, Treated with three rounds chemo at NYC’s MSKCC, Phase One Beta Glucan / 3F8s, full tumor resection by the brilliant Dr. LaQualia 7/24/03, Phase II irinotecan (3 rounds) Phase One double MIBG high dose infusion at CHOP 10/26/03-current.)

What’s Next? We’re currently making "Christi Sandwiches" as we prepare not to be able to touch her for an indefinite period of time. We hope its fast and we have already started our "Countdown to Cuddletime"!! The MIBG radioactive isotope is only made in one place in the country. It has been shipped here and is being thawed and countless tests are being run to prepare for tomorrow’s infusion. In the morning, Christi will be put under and they will put in her new port (Let’s not get me started on that one; I’ve nearly forgotten about that mistake.) and will also place the dreaded catheter to collect the radioactive "goodies" for the lead container. The infusion will take place sometime in the afternoon tomorrow and will last approximately two hours. I copied a sign language alphabet paper so that we will each have a copy. I plan to attempt to mentally distract her by "signing" her words through the window outside of her door. Of course last time there were six folks all gathered and assembled right outside her window watching the computer and monitors inside and out of her room so I may not have enough room, but I’m planning to try. Our prayer request is that this forever rids her body of all cancerous cells and that is not too toxic for Christine Shayna. Thanks to Christi’s Crew! We love you!