Looking back our biggest lesson is that, as parents, we are the chief advocates for our children. Often doctors talk in absolutes, but with cancer there are very few absolutes. Every child is different. Doctors disagree more often than not. We must stay informed and involved. But too often the information is simply not there. The decisions are ours, but answers are not clear. I do not know why some survive and others do not. We just follow our hearts and do our best.
The decisions are countless. Every protocol has pros and cons. Then come decisions of how much treatment, and how many rounds. Basically chemotherapy attempts to bring you as close to death as possible, attempting to kill all cancer cells before killing you. Pushing this too far is just as life-threatening as not going far enough. Each treatment adds toxicity, with the potential of secondary cancers, organ failure, and life long side-effects. "Lessor of the evils" decisions must be made, as necessary life saving drugs begin destroying vital organs. When do you back off? When do you increase chemo? When do you sit back and wait? No one knows the answers. Cancer has an amazing ability to hide. But the decisions still must be made.
In Tyler's case, although only 3 weeks old, the cancer had already invaded every one of his vital organs and 85% of his bone marrow. Because of the aggressiveness of the cancer, Tyler received the maximum allowable doses for the maximum permitted rounds. The only thing remaining was the bone marrow/stem cell transplant. Personally, I found that one of the hardest decisions.
Bone marrow transplantation is the most extreme measure to cure decease. You are given lethal doses of radiation and chemotherapy that destroy the entire blood and immune system. Into this void, stem cells from a donor are seeded into the bone marrow, where they grow into all the elements that have been destroyed (red blood cells, neutrophils, monocytes, platelets, T cells, and B cells).
With Burkitt's, the "standard" position in the U.S. is to only perform transplants in the event of relapse. They believe the risks are too great unless it is known the chemo did not work. It is far too dangerous to perform on someone who might be cured. But in Europe doctors disagree, preforming transplants as soon as the first remission is achieved. They believe relapses are too common and relapsed Burkitt's is often resistant to the necessary chemo and radiation. They claim the U.S. is pressured by the insurance industry (transplants cost $2-$3 million).
So who do we believe? While at Children's, we lost a friend due to transplant complications, followed by another who died when the relapsed Burkitt's could not be controlled. So what do you do? The data is not conclusive. After many meetings with many doctors (including Europe), we decided against the transplant. Tyler is now healthy, so it was the correct decision.
Last year Brendan Kizar was a healthy 16 year old. Then, without warning, he was diagnosed with stage IV Burkitt's Lymphoma. His family made almost the identical treatment decisions we did for Tyler. And, like Tyler, he fought hard. Like Tyler, he beat the cancer. But, although he did all the same things, his cancer came back. Now he would need the transplant. So he started back on radiation and chemo . But this time the cancer would not retreat. It had become resistant to treatment, quickly spreading to 90% of his bone marrow and bringing on leukemia. Early this week Brendan was taken to the National Institutes of Health in Maryland. He became the first human to receive a new experimental drug, attempting to stop the cancer long enough to perform the bone marrow/stem cell transplant.
Brendan Kizar passed away last night at 5:15. he fought bravely for eight months. He used every available option, including new experimental drugs. The knowledge learned will be instrumental in saving many lives.
Some others to keep in your thoughts and prayers...
Mason McLeod was also diagnosed with Burkitt's last year. Mason also fought hard, and beat this ugly cancer. But within 30 days it was back. So, standing tall, Mason went back into treatments. High doses of radiation and chemo to beat the cancer back so he can begin his bone marrow transplant. But chemo is very toxic, so other drugs are used to flush it out of your system. But everything is flushed through the kidneys, placing great risks there. Mason's kidneys began shutting down, requiring the treatments to be stopped and the transplant cancelled. But there is good news. There is early evidence that the additional chemo may have killed the Burkitt's...making the transplant unnecessary. Mason will be getting Rituximab and spinal taps, and then start heading home. FIGHT TO WIN, MASON.
Sinjin and Tristan are also all working through the war with relapsed Burkitt's. They are still deep in the battle, but are making great progress.
Also remember Steven Measer. He has been able to beat back his Burkitt's, but can find no matching donors for the transplant. So he waits. With a cancer that doubles in size every 16 hours, he just sits and waits.