Saturday, January 17, 2009

A few new things to report, but more pressing news right now. Sad news. With heavy heart, we tell you that our friend and fellow cancer warrior Jacob has lost his battle with medulloblastoma.

We met Jacob and his family when Hannah was at Spaulding Rehabilitation Hospital in Boston while having her radiation treatments. We had heard that another family was arriving, a boy 9 years old from Manhattan, a fellow Yankee fan. Yankee fans were pretty sparse in the heart of Red Sox territory, so it was good to have an ally.

I remember thinking that we could possibly help their family feel comfortable and find their way since we had arrived first. I think I even wrote about it on the blog. Boy was I wrong, but in a good way. Jacob arrived and hit the ground running. His family was very in tune with what was going on, they didn't need support, they seemed to have it all together! His mom, Nancy, quickly became a friend. She showed me the ropes of all the online parents groups and research avenues. I learned right away that Nancy her stuff together.

Jacob was a bit more critical than Hannah when he arrived at Spaulding. He had already started chemotherapy, and was in the throes of posterior fossa syndrome, which Hannah had experienced also. Besides dealing with radiation like Hannah, Jacob had to deal with radiation and chemotherapy at the same time. Jacob's cancer was identified after it had already metastasized to his spine so he required more aggressive treatment. He was considered high risk, in contrast to Hannah's standard risk diagnosis. Regardless, Jacob had such an endearing personality. For those who got to know him, he had such a wit! His sense of humor was pretty dry, and totally in tack, even in his situation. He was a bit older than Hannah, he was a boy, he wore an eye patch and he didn't talk much. At this point Hannah was shying away from everyone, but she could relate to Jacob, the "Yankee friend next door" and his little brother "Ben." Jacob and his family introduced Hannah and I to our first Chinese noodles and shrimp when our families dined together one night. Jacob and Hannah didn't talk much, but they did eat, and that was always a good thing in those days. Hannah still likes Chinese shrimp and broccoli.

Jacob's mom Nancy has worked endlessly to manage his care and help him beat his cancer. I have learned so much from her. She is so smart, resourceful, tireless, inventive and such a good mom to Jacob. Nancy could research better than anyone I have ever seen. If there was a treatment to be found, Nancy would have found one. She has spoken with doctors in Serbia, India, Germany and all over the United States. She pushed Jacob's doctors to work outside the box and find new ways to help Jacob. I believe that she helped extend his life, and his quality of life more than he would have had otherwise. And you should hear what she has planned for the future. She is someone who acts quickly and decisively, and I know that any future project she sets her mind to, she will be successful.

If you have a moment, please take it and visit their website to offer than a word of condolence. Another brave warrior that fought hard and lost his battle. We will be celebrating his life tomorrow in NYC with his family. Our friends...

Jacob's website


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