A few hours after that, Timothy was diagnosed with Stage 4S neuroblastoma that infested his skin, liver, and adrenal glands. As his liver continued to expand with cancer, it almost suffocated him as his lungs could not fully inflate. Yet surgeons would not attempt to remove the cancer in the liver given the risk that he may bleed too much. Our only option was to start chemotherapy on his second day of life.
Timothy’s face has Mom from the eyes up and Dad from the nose down. He has red hair and loving eyes that show how he feels about himself and us. Timothy laughs in his sleep and burrows his brow when he’s uncomfortable. He is amazingly dexterous for his age, reaching out to our faces and hands as he seeks connection with us. And that is AFTER he had a significant brain bleed! What a fighter. Timothy makes grumbly sounds when he’s annoyed and clarion cries when he needs a diaper change. He smiles at our voices and loves when we carry him, sing, and dance.
In babies, neuroblastoma is usually relatively easy to defeat, requiring only 2 rounds of chemotherapy. But after his first round of chemotherapy, DNA from a biopsy of a skin tumors showed that his cancer was not the standard form, but a high risk form of neuroblastoma.
There are two ways to treat high risk neuroblastoma. This cancer has a 40%- 50% long term survival rate regardless of which treatment plan we choose. Both methods involve 5 initial rounds of strong chemotherapy, followed by surgery to remove whatever masses of tumor are remaining, radiation of the tumor sites, and one more round of chemo, followed by immunotherapy.
However, the protocol followed in hospitals in the DC area requires that we harvest from Timothy stem cells from and administer 2 additional, extremely severe rounds of chemo. Because the chemotherapy is so strong, many patients cannot regenerate their own blood cells without transplanting the harvested stem cells, and even then, sometimes the transplant doesn't work. Stem cell harvesting has only been performed on a baby Timothy's size once or twice in the US. Of course, the harshness of this last chemotherapy, the lack of experience in harvesting stem cells from small babies, the likelihood of infection, and the possibility that the harsh chemo's side effects may kill Timothy give us serious reservations in selecting this approach.
The second method requires us to travel with Timothy periodically in New York over 18 months to receive treatment that uses a different form of immunotherapy and 7 doses of vaccine to help the body develop the ability to attack the tumor cells. This specialized treatment is only available at Sloan-Kettering in Manhattan. We have decided to take the him to Sloan-Kettering after his fifth round of chemotherapy, as it will be gentler on Timothy and its success rate is comparable to the prevailing method in DC.
Doctors also recommended genetic testing of the cancer cells to see if there were some sort of non-toxic, targeted collateral attack we might use against the cancer.
While insurance has helped with covering some of the costs of fighting this awful disease, it is not covering as much as we'd like. Further, insurance will not cover genetic testing that could target Timothy’s chemo and speed recovery. And while some Sloan-Kettering costs will be covered, much of the treatment and the costs of living with Timothy in New York for 3 months out of 18 will not.
Since the day Timmy was born, we have lived from minute to minute, waiting and watching, making decisions about his care, and praying that he will live. And we've thought more broadly about our other three children, working to give them consistent focus and love to help them as they suffer through this as well.
Foremost, we ask for your prayers for Timmy and us. We accept God's plan for us all through this and are grateful for the focus on faith and love this trial brings. Our church community, family, and other friends have been extremely supportive.
In fact, it is only through the suggestion and encouragement of our friends that we make this plea. We estimate that we will incur out-of-pocket expenses of at least $65,000 over the next 12 months as we fight for Timothy’s life. We hate asking anyone to help us with this, but do so in hope we can stay afloat for Timothy and the other children as well. Should we have donations exceeding expenses, we will contribute the remainder to cancer charities.
We thank you so much for considering supporting Timothy and his family, and wish you God's blessings.
-Patrick and Mary Anne
**As federal employees, we have consulted with our ethics advisors at Navy and DOC. We ask that, if you are considering supporting Timmy financially, no corporate donations, but rather only personal donations, are provided to ensure we keep within federal ethics guidelines. Thank you for considering!
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