Monday, July 26, 2004
"Through research we will see more novel approaches emerge to help cure neuroblastoma and to improve survivorship."
Dr. Seeger, CHLA / NCCF Conference, Chicago July 2004
Information overload! That is how I would sum up the absolutely incredible and amazing neuroblastoma conference we attended, along with 200 other parents / grandparents and oncologists, over the weekend in Chicago, Illinois. It started out with Dr. Aubrey Evans of CHOP who is often referred to as the "Queen of Neuroblastoma" as she has been working with NB for 50 years (yes, fifty years). Not only is it Dr. Evans who is responsible for the current staging system of NB (I, II, III, and the dreaded IV) but due to her work with cancer patients and their families she also founded the first Ronald McDonald House of course this first "house that love built" is the wonderful Ronald McDonald House of Philadelphia. Not only could I not believe that we heard from her, but I continued to be totally amazed and impressed that it was one dynamic and impressive researcher/doctor/scientist/speaker after another - all working relentlessly and tirelessly on finding a cure for this terrible deadly disease called neuroblastoma.
As we already knew, currently, there is no cure for any NB Stage IV diagnosed after the age of 18 months; however, I do believe that one day a cure will come as a result of their work and through our children's participation in these trials of investigational drugs. While I do not know of ANY long term survivors of NB IV, I have hope that one day a cure will be found and I'll be able to recite a list of names. Whether the cure will be discovered in time to help Christi and our brave little friends or not, only God knows, but we will continue her participation in these clinical trials with the hope of finding a cure for her and of helping other children along the way as a result of her participation. One oncologist/research shared that he felt that the tools to really cure the disease are now out there (PZA, CEP, ABT, MIBG, Immunotherapies, etc.), they just need to figure out the right order and the right drugs and doses that will really work to forever kill these cells growing out of control in our precious kids' bodies. With such a small number of children participating in these trials of investigational drugs, the answer won't come any time soon - yet some children may get lucky. We hope Christi is among the lucky ones.
It was absolutely heartwarming and refreshing to meet in person so many of the great folks I've emailed with for nearly two years from our information-packed listserv NB support group. (Although it was strange when someone I've never seen before would come up and ask, "Are you Christi's Mom? We've been emailing. I'm so and such's Mom.") I joked that we should all be wearing our email addresses on tee shirts in big bold letters so we'd know who we were really in meetings with! We feel that we share such a special bond with these folks we consider our dear friends.
We also met a lovely couple that I've been following their son's story on the Internet. Little did I know that both of these parents work for Abbot Labs - makers of ABT-751!!!! I was nearly shell shocked when they shared that and immediately asked, "Did you work there before your son was diagnosed with cancer?" and the answer was that they've worked there for years and it is a great company. (Their son was just diagnosed with NB IV in March.) They were happy to hear of Christi's preliminary success with ABT and promised to give the man in charge a thank you and to hand deliver Christi's little business card with her website on it so that he can follow her journey if he so desires. Thanks, Abbot Labs! Keep marching on!! Our kids are counting on you!! And please keep their precious, recently diagnosed son, Jake in your prayers. His website is now in Christi's Clubhouse at www.JustforJake.com
It was also great to get together with some of our tremendous old friends that we've literally lived with during treatments. While at lunch one day, we were blessed not to be sitting in a Ronald House with the Leslie's, the Hammers, and the Robinson's, but we were all sitting together under fancy chandeliers in a clean room being served lunch with linen napkins on the table cloths in a fancy downtown Chicago hotel a block away from Michigan Avenue - wow! (That's a big change!)
Another great memory that sticks out is hugging beautiful Anna - a 19 year old diagnosed nearly the same time as Christi and who has participated in nearly identical trials as Christi has (3F8/beta glucan, MIBG, and now ABT) yet our paths never before crossed so meeting Anna and her family was great. I had been following her story since last year when Shayne returned from the conference and he said that there was a beautiful teen who went to the microphone and bravely said, "I'm Anna. I'm 18 years old and why is my disease so stubborn?" (And her Mom is a teacher and her father a Professor so I feel like we have so much in common with this family.) Anyway, Anna is absolutely beautiful - inside and out and sadly knows the incredibly reality of this horrible disease. My heart goes out to her- a top 3 graduate of her high school class who had a very bright future ahead of her wanting to be a doctor like her Grandfather. Now life's not so bright with persistent neuroblastoma still in her body threatening her life. She is working on her college degree while juggling cancer treatments too. Life is so unfair. Anna's website is now in Christi's Clubhouse at www.annabanana.org. We love you, sweet Anna!
We'd like to share our deepest thanks with the NB Conference founders and organizers Pat and Milt Tullungan's (Angel Parents to Nicky). Nicky's Mom said, "Things could have helped us throughout Nicky's fight. After Nick lost his physical battle, we wanted to do something to help other parents." Therefore, they started the CNNF (Children's Neuroblastoma Cancer Foundation). I can't think of a kinder and more helpful project than hosting that conference in addition to the other work that their foundation does on behalf of our NB children. How they were able to once again obtain the leading researchers and oncologists of neuroblastoma and to provide this conference, child care, meals and hotel at no charge to participants, we'll never know, but we'll forever be thankful! One doctor commented that for every neuroblastoma child in treatment, there are 2-3 folks in labs working behind the scenes on neuroblastoma. After hearing from tremendous individuals all over the country and learning more about their work, I really believe this is true! Sadly, as the doctors all seemed to indicate, it's not enough and things aren't happening soon enough for our kids. The thought I couldn't seem to shake all weekend was the bond that brought us here is not neuroblastoma, but the fact that nearly everyone of us in the room will bury our children to this beast. May God give us strength and comfort.
I was so happy to also see some of the special Angel parents (and Grandparents) who were at the conference attending special sessions on bereavement and grieving. I've worried so much about some of them that to actually hug them in person could not have relieved any of their pain, but it certainly made ME feel better. I won't say it wasn't hard seeing them without their little one at their side, but at least they were in Chicago getting some help and support that they really need. Our prayers continue for healing.
Shayne and I haven't had a chance yet to dialogue with one another over the conference, but I was extremely impressed of the trials being conducted in a couple of institutions with immunology. After emailing with for over a year, we spoke in person with Dr. Heidi Russel (an incredibly young, well spoken and brilliant oncologist!) of Texas Children's and I think we may be heading to Houston in the near future to get started on the vaccine trial for Christi's participation. While it's nothing really promising, you never know how a child's disease may respond. There has been very, very limited success yet I want to make certain to "leave no stone unturned" in trying to slay this dragon. This vaccine therapy I've written about before appears to be a trial Christi could participate in. (She has tested EBV positive thanks to CHOP testing her to see if she'd qualify and when Dr. Russell asked if she HAMAed on the 3F8s and we both responded with, No!" she literally did a hop and said, "Good!!".) It appears that she could receive the shots while also participating in another trial (such as her current ABT experiment). At this time, all she'd really need is to go to Houston to have them draw some blood. Then, it would take those scientists 3-4 months to try (no guarantee that they can grow the precious T cells for her or not) to specially produce an individualized, targeted vaccine designed just for Christi's specific biology of neuroblastoma tumor, so it would be nice to have them create this while she's feeling well and (hopefully) doing well on another treatment attempt (ABT) and then have her start to receive the injections down there later. We'll see. I'd like to discuss this with Dr. Maris as well as a trial with adding Zometa to Irino or maybe even ABT with the goal being keeping the disease from infiltrating from her bone marrow into her bone which often occurs with NB progression. Again it's not a cure, but has slow down the disease in early testing.
After the conference ended on Saturday, we walked down Michigan Ave and went to the Naval Pier as Christi had been asking to go to a Museum while we were here in the city. We chose the Children's Science Museum, then took a cab to Little Italy to meet our dear friend from high school Kaye and her family. (Yes, friends, Kaye is as beautiful as ever and just as nice as we all remember and their two lovely daughters are charming!) Not only did we meet with the Heinholds, but also friends that we've made from Oklahoma whose son, Nick, also has been fighting persistent Neuroblastoma too. Lydia and Nick have been with us in NYC, CHOP and now Chicago so it was a special bond of the totally freak coincidence of having mutual friends and children with this wicked disease that has drawn us close together. It was a lovely night despite the fact that none of us wanted to be in Chicago because of having children who are seriously ill; we just wanted to be in Chicago hanging out with the Heinholds for FUN!
Sunday afternoon we went to that very special place where we all have been anxious to attend - the American Girl Store!! Last summer, some very kind Prayer Warriors from Upper Sandusky (Grandma Nonee and Paw Paw Joe's hometown) went together and bought Christi her favorite American girl doll - Felicity. Shayla absolutely drooled over it and wanted one so bad, but like I said over and over, "She's not getting one of those expensive dolls. The literature is great, but the dolls are a waste of money." Well, I did something I couldn't believe I did. I allowed Shayla to pick out her very own American Girl - along with its book and $84.00 price tag. (ouch!) She picked Kit - the 1934 girl from Cincinnati. So far the doll hasn't left her sight. (I also allowed Christi to pick out a modern girl outfit for Felicity and boy did she!) Had our last session not be on the permanent emotional effects siblings will forever have to cope with and had Shayla not just said at lunch that her favorite childhood memory was when she got to go to New York to be with her family (talk about a knife in your stomach - we really thought at 3 1/2 she'd never remember that we had to leave her for about 7 weeks) I don't think I would have offered, but those two events made me ask Shayla if she'd like to buy her doll now too. We arrived home safely about midnight thanks to Shayne's careful driving and our Guardian Angels guiding us back home.
Today's blood counts were unbelievably wonderful. OK, downright spectacular in my opinion! white 3.4 (normal 5-15), hgb. 11.1 (normal 11.5-15.5), patelets 101 (normal 150-450) with an ANC of 1800 (no danger above 500). You go, girl! Thanks all for your sweet divine intervention! She's on ABT day #11 and thriving so far! (Perhaps she doesn't know she's a "kid on chemo" but I'm not about to tell her! hee hee!)
Wishing you peace and good cheer,
PS: Karel - Christi has packed your sweet, sweet finger puppets which she can't wait to pass out to the other kids' at the hospital. Thank you!! (We don't call her "Christi Claus" for nothing! hee hee! She's going to LOVE this special compassion mission.)
Christ's Comment at the Conference: "These eggs are even better than yours, Mom." "Christi, those eggs are made with quadruple the butter, so don't plan on having those at home anytime soon."
Shayla's Comment as we were driving out of Chicago last night and she was holding her new American Girls dolly: "Hi Kit! How does it feel to be out of the American Girls store? I'm Shayla Thomas!"
Christi's favorite childhood memory: "Going to Disney World for my sixth birthday!"
My NB Listserv Post:
A HUGE Thomas Team THANK YOU to the wonderful Tullungan's for an incredible experience here at the 3rd annual CNCF's conference in Chicago. I'm sitting here in this absolutely lovely hotel room overlooking the windy city in reflection of the fantastic NB conference that far exceeded my high expectations. (Due to living in NYC last year with Christi's treatments at MSK, I was not able to attend this conference with Shayne. I found the conference to be everything he raved about and more.) Words cannot possibly express the love and expertise shared here and not a single detail was overlooked. From the fabulous volunteers and activities for our 5 & 7 year olds in the "Kids Room" to the fantastic DJ playing "kid friendly" music to the short little mini tables filled with kid-style food, it was one classy affair! The speakers were of the highest caliber and to FINALLY meet so many of the wonderful folks I have emailed with over the years, was wonderful; I'm filled with gratitude. Thank you everyone for the tremendous amount of time, energy, and effort - not to mention blood sweat and tears that I'm positive went into this amazing event. THANK YOU to everyone involved!!
With love and gratitude,
Christi Update: Her blood counts were finally high enough to start her
third cycle of ABT-751. We shall fly back to CHOP for tests/scans August 5th and 6th. As many of you saw her here at the conference bouncing around with her full head of hair and energy that literally jumps out of her body, she's still feeling TREMENDOUS despite the cancer that remains in her body.
She's never yet made NED, but she's happy, pain-free and we feel incredibly blessed! Our prayers are with you all! Please take care of you and yours!
2nd Annual Friends of Christi Poker Run to be held on Saturday. All proceeds will benefit "Just for Kids" of Seneca County.
The schedule is in!!!! The study nurse emailed that it will be a quite a grueling event to try to do all of this in just two days, but if we really wanted to squeeze it in OUR time frame, she'd let us do it. Yahoo! (More time at home = less time at the hospital and away from Shayla and Shayne) I'm THRILLED!
Wednesday (August 4th) noonish: fly out of Toledo, one change of plane, arrive in Philly at rush hour - cab or train it to the Ronald McDonald House if they have room. Get a hotel room close by if not. No food after midnight due to general anesthesia.
Thursday, August 5th: 8:00 AM blood tests, VMA/VHA urine collection testing, bone marrow testing under general anesthesia, hopefully wake up happy (smile) yet I'll take "just wake up", 11:30 AM isotope injection in nuclear med, drink CT scan contrast at noon - no food after that, 2:00 EKG / ECHO, 4:15 drink more contrast for CT scan, 5:00 CT scan - hopefully catch the 6:00 CHOP employee shuttle with a drop off very close to the Ronald house and walk from there home for dinner. (No, Christi. You're NOT taking your bike! We're taking just one very small suitcase and not checking any luggage, remember? hee
Friday, August 6th: 9:30 AM MIBG scan while watching the movie "Holes" as Mommy hovers over the screen, praying not to see any bright shiny spots like she's a real radiologist or something! ha! (We read the book "Holes" together in May after CHOP's awesome MIBG folks offered her that video choice and she's been saving this video for her next MIBG scan now that she read the book. Oh, how I hope they still have and offer it!!!! She shared her end of the year "Favorite Book Commercial" on this book one of the last days of second grade.) 11:30AM meet with the wonderful Dr. Maris to learn of the majority of the test results. (That's CHOP's speed and style for ya, gotta love same day test results!!) Walk to the train station (hopefully with GREAT news - I may splurge on a taxi then, hee hee) to catch the train to the airport with the suitcase I'll be pulling all day (smile), arrive back in Toledo at 11:00PM and home about midnight. Blood drive and lemonade stand on Saturday morning at Hospice.
Well, until we go CHOPing! (hee hee! Cute, Mike! Good one! Thanks for your sweet love and support! You've richly blessed us!) Thanks everyone for your extra prayers during these stressful and tense times that always seem make or break us. May we be prepared to deal with any news we hear come August 6th.
PRAYER REQUEST: smooth and uneventful travel and testing schedules, the good news of hearing NED (no evidence of disease) for the first time EVER - even though we know her treatments will still continue due to the nature of this beast. (One cannot just stop treating the neuroblastoma cells unable to be detected because they are STILL in the body at microscopic levels) or if we don't hear NED (which would be a miracle) we will really be happy to hear "stable. no progression. no new disease" That awesome news would keep Christi on the ABT - 751 oral chemo pills and we don't believe she'd need to return to CHOP for three more cycles (most likely Thanksgiving time). That would be a TREMENDOUS blessing to hear all of those great things we're praying for! May God give us strength no matter what the testing results show and may God grant good news to all of our little friends and their sweet families too. We've been blessed!
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Shayne & Angela Thomas: email@example.com