Today is one year.
April 17, 2007: the day our lives changed forever. And one year later, after 2 surgeries, 10 week-long rounds of chemotherapy, more than 50 cycles of radiation to abdomen, spine, upper arm and neck, after countless hospitalizations, 15 days of 3f8 immunotherapy, a month of shingles, and hundreds of injections, we have some good news. We know that you don’t usually visit this blog to whoop it up, but today is different.
Today, Toby is clean.
The CT and MiBG scans showed no signs of neuroblastoma. The bone marrow biopsies and aspirates showed no cancer cells. And the urine results are normal.
Toby has no evidence of disease.
So what’s the possibility of having a giant love-fest in Prospect Park, where we all whirl around and eat lots of food and wine, hug each other and sing praises to God, friends, doctors, nurses? Where Randy sings and the sun shines and children laugh? Where we feel the power of love and hope and community? We are SO there.
Toby most likely has cancer cells still lurking in his body. Since neuroblastoma is aggressive, with an extremely high relapse rate, doctors don’t speak of remission. So treatment will continue unchanged: another round of chemo at the beginning of May, with an attempt to harvest more stem cells on April 28. And we wait for Toby’s hama level to come down.
But today we celebrate, with all of you.
An email from yoram, the cancer doc:
Sent: Thu 4/17/2008 12:04 PM
To: Saltzman, Mooki
you and your gang have lived through a horrendous year. there have been more "downs" than "ups" and both your psyche and physical stamina have been continuously challenged (again and again). somehow, the four of you have persevered and arguably are stronger for it - this is not an empty statement, i have seen the remarkable change in all of you.
if my math is correct, one year ago today, i received your frantic call from the radiology suite at nyu with the worst possible news. i clearly remember how your voice quivered despite your best efforts to keep it together - you knew something was amiss. my own realization of the gravity of the situation was confirmed when you passed the phone to the radiologist who described the results of toby's abdominal/pelvic CT to me. even as she was talking, i feared the worst and my fears were realized when she answered my two questions affirmatively that the mass appeared as though it originated from the adrenal gland and "crossed the midline" and that it contained calcifications. until this point i was hoping that the mass was "benign" or at the worst a wilms tumor, unfortunately, it was neither.
over the past year you all have been to hell and back many times.
i've seen how these "trips" affect (other) kids and their parents. some of them become so hardened and withdrawn that they can no longer function. the dreaded disease consumes them and their entire being becomes a manifestation and reflection of it - they find it exceedingly difficult to live with their disease. i can not say the same for the four of you. while it's true that each trip tests your resolve, at the same time you become more determined and earnest to live a normal life, "tubies," chemotherapy, and endless restrictions be damned. you and stephen are advocates-extraordinaire for toby, insisting that he go to school, have play dates, and be as much a kid as he deserves to be. i'm continually amazed by this and i'm not sure that you and stephen appreciate how truly important and remarkable this is.
anniversaries are meant to be positive; reminders to commemorate and to celebrate good. today is one anniversary i would prefer not to remember.
God, I love my brother.
On Saturday, May 10, Stephen, Yoni, Toby and I will be walking in Central Park to raise money for neuroblastoma research.
Kids Walk for Kids with Cancer was started 7 years ago by Shirley Staples’s daughter Sophie. Since then, it has raised almost $525,000. The walk is organized by NYC middle- and high-school students and it has blossomed into quite a wonderful event. It starts at 2 p.m. in Central Park, across from Tavern on the Green at W. 67th and CPW. First is a brief program that includes doctors who treated both Shirley’s son Simon and Toby. Next is the 4.5 mile walk. Everyone is welcome, from babies to grandparents, and even pets. We will be there to walk with Toby, in support of all the brave children battling this terrible disease. The survival rate for neuroblastoma is a dismal 30%, so more funding for research is desperately needed. Funds raised will help MSKCC researchers improve the odds for our children. We hope you can join us. Please email our dear friend Reva at firstname.lastname@example.org if you would like to participate. Thank you so much and we hope to see you there.
mooki + stephen
Ed Clark, Christmas Guest
9 months ago