Murphy's Law

Sorry I haven't written in awhile but I just returned late on Wednesday night from New York after spending a week with Noah and Lara at Sloan Kettering and the New York City Ronald McDonald House.  I had every intention of updating the journal from New York but we had a dial up connection and I didn't want to spend that much time working on a journal when I could be spending my time with Noah. 

First, I want you all to know that all of the testing done in New York came out clean.  No sign of those nasty Neuroblastoma cells anywhere.  The only negative result is that Noah has experienced some high frequency hearing loss which was to be expected after receiving platinum during chemotherapy.  We were concerned about this result but the other parents at the Ronald McDonald House said that almost all of the children had experienced this and that it is amazing how they compensate for it.  The good news is that Noah had established his speech before the hearing loss.

I joined Lara and Noah so that I could be of help to Lara as well as just spending time with the two of them while in New York.  Noah was really doing well the whole time that I was there.  We had a great time going to his favorite New York restaurants, going to his favorite shops and even managed to go down to Chinatown and Soho on Sunday.  It's evident now that Noah has become a real New Yorker by his mastery of getting on and off the subway as well as hailing a cab.  Noah became very ill just after I left on Wednesday.  This developed into a fever by Thursday and resulted in being hospitalized overnight on Thursday.  This is why I was going to New York so that I could be of help if anything like this happened.  I left a day too soon.  Noah ended up being fine by Friday and I'm not sure anyone will ever know for sure what it was but the end result was that Noah and Lara missed their flight home on Friday evening.  They will be catching a flight bright and early tomorrow morning.

I can't even tell you how impressed I was by both Sloan Kettering and the Ronald McDonald House.  I'm so glad that I went so that now I have a better idea of what is going on with our Noah and his protocal.  The people that work at each institution are amazingly dedicated people.   I would also like to thank Jaye Bea and Ken for being there to help take care of Lara and Noah.  Once again meeting Noah and Lara at the airport as well as having us for Sunday dinner. It's really a wonderful break from the day to day agenda for Lara.  There's nothing like spending a little time with a really good friend as well.

Once again, a huge thanks to both Tracy Allen and Amy Kingsley for helping Andy take care of our little Sarah.  I understand that even Grandma Ann Kingsley was watching Sarah today.  Obviously, none of these trips to New York would be possible if so many of Lara's wonderful friends and support system wasn't alway right there helping.  A special thanks to Christine for the yummy cookies that she sent to New York and to Amy for coming up with the brilliant idea of sending burritos.

I can't tell you how wonderful the past week was for me.  I haven't spent that much time with Noah in such a long time and it was so good to see him doing so well. The treatment at Sloan Kettering is unbelievably painful and you hear children crying and screaming from the rooms but not our sweet Noah.  He just curls into a ball with his hot packs on his back and tummy until the pain stops.  Then he is ready to go.  The pain then will return to his feet and the hot packs are the only thing that gives him relief for that pain but that doesn't stop him from wanting to be out and about New York.  You just might have to sit for awhile with the hot packs and rub his feet until it starts to feel better.

Noah will be off from school this coming week but there are still many doctor appointments that need to be kept so it sounds as if that is how next week will be spent.  Lara and Noah will return to New York in mid April for the fourth round of 3F8.  This time, Andy will join them for part of their stay while I go to Scottsdale to take care of Sarah.  Thank you for all of your prayers that have helped Noah reach this point.  It has been over a year now since he was originally diagnosed and I want to thank all of you for being so faithful in your interest and your prayers.  I ask that you keep praying for our Noah that his clean test results will continue.

Much love,  Grandma