Friday, January 29, 2010

Memorial Sloan-Kettering Cancer Center

We arrived at the Ronald McDonald House in NYC around 12:30am.

The place was very welcoming and beautifully decorated for the holidays. After sleeping through the second half of the ride, William woke just in time to check out the place when we arrived.

Friday, December 18th

It was so nice to be out of the hospital, even if we were at a Ronald McDonald House far from home. William's hair was just crazy that day...I tried many times to wet it and get it to lay flat, but it had its own agenda.

The Hope Mobile took us door-to-door to Memorial Sloan-Kettering Cancer Center. Little did we realize that RMDH is just 6 blocks from the hospital - super convenient!

Ready for our next adventure!

MSKCC has a team of four pediatric oncologists who specialize in neuroblastoma...and only see kids with this form of cancer. There is also a pediatric surgeon who only performs surgery on neuroblastoma cases. Given the rarity of neuroblastoma, we sought to travel to MSKCC for a second opionion. (The team of 6 pediatric oncologist at Upstate Hospital have treated 3 other cases of neuroblastoma over the past year or so.) The doctors at Upstate had told us William's tumor was inoperable due to its size and complexity. They recommended we follow the Stage 3-Intermediate clinical trial, which would involve 8 rounds of chemotherapy (every 3 weeks) - over the course of 6+ months. Before agreeing to that treatment plan, we wanted to be sure William was receiving the utmost care for his needs (not to mention the thought of chemotherapy for my 6 month old was more than I could handle deciding). We couldn't think of a better place to bring him!

It was a gorgeous, crisp winter morning in NYC.

Thanks for the lift, Hope Mobile.


Just after arriving at the Pediatric Day Hospital, we got to witness a big donation made specifically for the neuroblastoma team. After reading about all their credentials, experience and published studies it was like seeing celebrities for us.

Dr. Kushner, Dr. Kramer, Dr. Cheung & Dr. Modak

There's a gorgeous playroom filled with every possible toy on the other side of the bottle wall.

It was definitely an eye-opening and humbling experience to be amidst all these other families who are also dealing with their child with cancer. This was at the end of the day when it was nearly empty, but usually its just packed.


Ahhh, a giant fish tank. William is really becoming a fish fan - they seem to be the main attraction at hospitals and doctors offices.

The staff at MSKCC was amazingly child-centered and welcoming. We felt as though they gave us superb attention and time, from the receptionists to the nurse practitioners, oncologist and the world-renowned neuroblastoma surgeon, Dr. LaQuaglia. Dr. Modak (oncologist) listened to our detailed account of William's previous presentation, reviewed every bit of information we brought from Upstate and that was sent earlier in the week. He thorough explained to us their treatment philosophy. Sloan's team emphasizes focus on using minimal chemotherapy and radiation on children, due to its toxicity. They also are working on the most innovative treatments for this disease, including immunotherapy, an approach that destroys neuroblastoma cells by strengthening the child's own immune system. Their primary focus is to surgically remove the tumor, or as much as possible without using chemo unless absolutely necessary.

We felt very fortunate we were able to be seen by such reputable forefront experts in this disease that has made our William so very sick. Unfortunately, the surgeon, Dr. LaQuaglia did not feel as though the tumor could be removed at this time, due to its extreme size and its encasement around many vital vessels and nerves. Dr. Modak and Dr. LaQuaglia told us they wanted to present William's case at their Tuesday tumor board meeting on the 22nd and get back to us as to their final recommendation.

And so, we packed up and headed back to the Ronald McDonald House. But first, Fred had to get his fix for NYC street food!

As lousy as the circumstances were that brought us to Galisano Children's Hospital, we really were in the lap of luxury, in comparison to most hospital experiences. Our room at RMDH was a little different...

The hospital social worker put it best when she was helping me make housing accommodations for our visit to the big city. Describing RMDH as "a hotel without housekeeping" was right on...you have to make your own beds (they provide sheets and blankets) and wash all linens and towels, dust, vacuum and clean the bathroom before checking out. Our room as definitely cleaner when we check out than when we arrived!

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