On July 2, 2007 just 10 weeks after Max was diagnosed with cancer, I wrote a letter to friends and colleagues. I just finished reading the letter. It is a letter that I wish to share with you. It is a letter that brings me back to a very dark time in our family’s life. I remember feeling as though I was being lowered into a dark well, reaching for something to hold onto, while the light above me faded away.
Since this letter thousands of other children have been diagnosed with rare cancer, and too many have passed away. Since this letter-We have raised hundreds of thousands of dollars, I have made a musical album of our family’s journey and have an album out on iTunes, soon to be hard released. I am writing a book, and developed a television show. I am in the process of making a documentary called MAX, and deep in the heart of the planning of our first annual…
ROAR FOR A CURE CARNIVAL – August 22nd – East Hampton, NY
I also ran two marathons, one of which was just six weeks after a heart attack.
This letter below was the beginning of a promise that I made. It is a promise that I intend to keep until it is met with a cure.
July 2, 2007
Dear Friends and Colleagues,
Ten weeks ago, our son Max woke up favoring his left arm. After my wife Annemarie touched his elbow and he cried out in pain, she took him to the pediatrician. We were told that it was probably just a bad contusion, and that we should wait a few days before taking him to get an x-ray. Two days came and went, and when his arm did not appear any better, we took Max for an x-ray. We were overwhelmed when the orthopedic surgeon at the Hospital For Special Surgery told us that Max’s arm either had a bad infection or, worse, cancer. We never thought that a precautionary visit to the doctor would result in finding out that Max’s life could be threatened and that our own lives would be changed forever.
It was a Friday and they scheduled a biopsy for the following Wednesday at Memorial Sloan- Kettering Cancer Center (MSKCC). It was going to take a full five days to find out if they thought our son had a potentially lethal disease. It was, by far, the longest and most arduous 120 hours of our lives.
Wednesday came and, with hope in our hearts and trepidation in our minds, we went to the hospital where they conducted the biopsy. Midway through the procedure, the surgeon informed us that it appeared as though Max had bone cancer and they would perform a bone marrow biopsy as well. Eight long days later, when the preliminary results of the biopsy were confirmed, the doctors told us that, indeed, Max had B-cell Lymphoma in the bone of his right arm, an extremely rare place for this type of cancer to form.
In fact, there are only 40 or so cases reported in the United States each year.
We had neither the time to waste nor the energy to expend to contemplate the age old philosophical question of why such a bad thing was happening to our child. Rather, we reprioritized every aspect of our lives, and now focus on doing whatever it takes to get our son well. Unfortunately, since the initial diagnosis, we have learned the numbing news that the cancer has also spread to his left knee. How did it get from one location to the other? Because the cancer showed up in two places, it was unusual for there to be no detectable cancer cells in the blood or bone marrow. The manifestation of the disease in Max was totally unique; in fact, MSKCC had not seen this situation before. After consulting with other specialists across the country, although the diagnosis did not change, it is suspected that there are microscopic cancer cells in the blood which did not show up in all the tests, and, as a result, Max is being treated as if he has Leukemia. He has been undergoing chemotherapy and will continue to go through treatment for the next two years. The doctors are optimistic and his prognosis is good.
Ralph Waldo Emerson once wrote, “What lies behind us and what lies before us are tiny matters compared to what lies within us”. Redefining the word brave, Max valiantly goes to the hospital and takes his medicines every single day, as he undergoes this highly aggressive treatment. He is a beautiful little boy, both inside and out, who makes an enormous effort to continue to demonstrate both his usual happy demeanor and youthful exuberance that he has always had.
He and I are a team if there ever was one. Just prior to the start of Max’s chemotherapy, we buzzed our hair together. Recently, he told Annemarie that it is okay that his hair is falling out, unlike Daddy’s, his will grow back one day. As a whole, we are trying our best to keep things as normal as possible for him. That being said, we are realists and know the road that lies ahead will be long and difficult. Believing in the power of positive thinking, I am confident we will beat this disease and Max will live a long, healthy life. Children are resilient and hopefully years from now, he won’t remember the treatments he underwent or the pain he endured. Life, in its unpredictability, can sometimes work in mysterious ways and unexpected events can change one’s course or direction instantaneously and without warning. Speaking from a firsthand perspective, it is important to see the reality of this terrible disease and understand that it can inflict any child, and his/her family, at any time.
The type of cancer Max has is quite rare and we are told the research for this type of pediatric cancer is severely under funded. As a result, our family has established a fund to raise desperately needed money for research to help Max and other children who are inflicted with rare forms of pediatric cancer.
The fund is called The Max Cure Fund for Pediatric Cancer Research. If you make charitable contributions throughout the year, and/or are looking for a new charity to be involved with, please consider The Max Cure Fund. How often in life does one have the opportunity to radically change a person’s existence for the better? You can make a real difference in helping to find the cure for this horrific disease which potentially affects all of our children. Please send your check to Carol Blumenfeld, Memorial Sloan Kettering Cancer Center, 633 Third Avenue, 28th Floor, New York, New York 10017.
Make the Check payable to Memorial Sloan Kettering Cancer Center and reflect on it that it is for The Max Cure Fund for Pediatric Cancer Research.
Annemarie and I are extremely grateful and would like to thank all of you for your support and prayers over this difficult time. Please feel free to forward this letter to anyone you feel might be interested in supporting important research for pediatric cancer.
All the best,