Journal Entry

Saturday morning, March 29, 2003

"We are the music makers and the dreamers of dreams."
-Willy Wonka in Charlie and the Chocolate Factory

My mother provided our music this week. She provided tremendous relief to the Thomas Team during her week here. It was hard to see her go. No matter how old I am now, there's nothing like "Mom" to always make me feel better. This week's crushing news was by far the worst we've experienced and just having Mom here was a tremendous comfort to me. Christi stayed overnight at "Nonee's" (hotel room) every night and I stayed a few nights too. Mom also watched Shayla while we took Christi to the hospital. Since there was no surgery, Christi and Mom had a great time together playing games, cooking and sightseeing. Christi thrived on her Grandma's attention and was just so happy being in her hotel room playing. Being able to keep "fighting sisters" separated, it was a fabulous stress relief to all of us. They have not been getting along very well lately. Perhaps everyone's "best behavior" has worn off. Using the "divide and conquer" method of raising strong-willed siblings, Shayla and Shayne spent most of the week together while Christi and I hung out with Mom. Shayla was able to go to her wonderful "Start with Art" class at the Met. Museum of Art three days. (Those ladies at the Met are fabulous!) Shayne and I also took her to the Central Park Zoo which we all thoroughly enjoyed. The spring-like weather this week was welcomed goodness! Thank you, Lord!! I bought a spring jacket at Macy's.

It was a wonderful surprise on Thursday morning, to receive a phone call from Shayne's cousin, Tony. Tony was near the city on a job interview; therefore, the cousins got together on Thursday night. Tony also loaded his car, bound for his return trip to Ohio, with some things that we no longer needed in our small room here at Ronald. (Thanks, Tony!! Best wishes!)

Our meeting with Christi's Neuroblastoma team was on Friday morning. The NB Team met to make their recommendation on Thursday afternoon. They have recommended putting her on a Phase One (Clinical / Experimental) Trial. While I said this fall that I'd never put my kid on a phase one study, I'd never walked in these shoes until recently. (Phase I's test the toxicity of the treatment. They dose escalate the item to see how much these kids can take.) I'm hanging my hat on the slight chance that this treatment may do the trick and also that her trial in the experiment may help find a cure so that other children never have to live the horror of neuroblastoma. If it doesn't help her, maybe the information learned can help some other child someday. This trial has proven successful in mice; however, many cancer treatments have shown promise in mice and then have done nothing in humans. God willing, this may be the step to becoming NED (no evidence of disease) and to allowing her treatment to continue.

The theory behind the next treatment is that by combining two experimental agents the immune system will be stimulated to locate and destroy cancer cells. The agents are monoclonal antibodies and beta glucan. MSKCC has pioneered the use of monoclonal antibodies for neuroblastoma and have administered over 7,000 doses since the mid eighties. (Seems like yesterday, eh classmates! hee hee). Basically, antibodies known as 3F8 mouse antibodies, are produced in mice and have an affinity to neuroblastoma. Injected into humans, the 3F8 acts like a T-Cell by attaching to the surface of the cancer and signaling to the immune system that it is a foreign invader. While the antibodies seem to work with minimum disease (although still an open question) it has never been considered for large amounts of disease (extensive) like Christi has. Just two weeks ago, a long awaited phase one trial was opened which combined 3F8's with a product known as beta glucan. Glucan is a naturally occurring agent that is found in a variety of plants and fungi. Our glucan is derived from barley. It has been long associated with stimulating the immune system and has been a focus of attention in Japan for 30 years. Hypothesis is that the combined administration of 3F8 and glucan would stimulate the immune system and provide the necessary markers to locate the "bad guys". As mentioned earlier, this combination proved to be effective on several cell lines of human neuroblastoma in lab mice. This is, however, the first human trial of this combination against any cancer ever anywhere in the world. Christi will be patient #4 on this study. I really believe that God led us to New York for a reason and perhaps with this study just opening up for enrollment two weeks ago, this is why. We hope and pray that this will be the answer to our prayers and will allow us to keep marching forward and to conquering this monster of a disease.

Although cliché we all know that there is no "free lunch" and in cancer treatment this has proved to be stark reality. Starting Monday, Christi will experience profound pain while undergoing treatment five days a week for two weeks at a time. Excruciating pain is induced because the 3F8's do not distinguish between neuroblastoma and some nerve endings. When they land on the nerve ending it sends a pain message to the brain. We've been told that it is more painful than childbirth. I can't believe that we're really putting her through this; however, we don't have any choice as she (along with her sister) is the joy of our life and we don't ever want to look back and wonder "what if" we would have tried an experimental treatment that was recommended by the medical team. Her pain management will be provided by the nursing staff; however, the screams and howls of intense pain are very familiar to us in the day hospital where the kids receive the regular 3F8's every day that we're there. So while Christi will be heavily sedated in treatment and may experience drops in blood pressure and possible respiratory problems, she should not have other side effects like low blood counts etc. and there are no known long term side effects of 3F8s. Sloan has been using them since 1986. (Go, SE Tigers! What a great class! We miss you!).

The game plan is to do four rounds of 3F8/glucan - IF it proves effective. If the disease does not respond or progresses, we will then shift the strategy to attempt MiBG therapy at CHOP in Philadelphia in order to arrest the disease. We have adequate stem cells for rescue so this remains a viable option; however, we're led to believe that there are tumor cells in them because of Christi's extensive involvement and the MiBG therapy should be kept as a last-ditch effort when the 3F8s have failed. Surgery is postponed indefinitely while we await a response to the current treatment plan.

My hope and my dream is that the treatment, beginning on Monday, will be Christi's ticket to ridding her bone marrow of this nasty beast. I once again have hope and something to hang my hat on. This hope and my faith will sustain me through the next few weeks of this "long roller coaster ride". I can't possibly thank everyone enough for their prayers, comfort and everything else that seems to get me out of bed each day. I truly believe in divine intervention and thank you from the bottom of my heart for praying for our precious five year old sweetheart. Thank you!!

We're THRILLED that we can keep Shayla here with us as we should be here for at least six weeks. Shayne found a preschool a couple of blocks away that permits enrollment on a month-by-month basis. I'm sure it won't be the fabulous Betty Jane Preschool like home, but I'm going to check it out this week and if it meets my high expectations I'm going to see if we can get Shayla into preschool two days a week. She's just loved playing with all of the kids here at Ronald. She's so social and such a good playmate. I think some structure and routine in her little life would be a good thing for her and would allow Shayne and I a break to tend to other matters.

Much love, thanks and appreciation,

Christi's Joke: What do you call a boomerang that doesn't come back? (A Stick)

Mom, you've provided so much comfort, strength and help this week. More than you could ever possibly know. While trying not to be emotional, it was extremely difficult to say goodbye and to let you fly home. Words cannot express how thankful we all were for your visit. I know you must be exhausted after everything you did for us, especially after how many different card games Christi talked you into playing with her. Thanks for your love and patience! Thanks for letting me take a daily nap on your bed. Thanks for everything!! We love you and can't wait to see you again when we return home one day!