Noah Nelson

An Early Gift

Yesterday’s news from Dr. Kushner in NYC couldn’t have been any better.  We were thrilled to find out that Noah is NED:  No Evidence of Disease!  With the holidays closing in, the timing of this news was extra special.  Problem is, we can’t find a box big enough to put this present in…so we are just putting a bow on the top of Noah’s bald head (look for picture to come on the blog).

Of course, this is a great time to reflect on the on-going love from our supporting cast.  Quick recap of where we are after 10 months:  Over $75,000 has been raised and donated in Noah’s name to “Find a Cure for Neuroblastoma” – WOW!  This will amount to 2 healthy research grants.  Noah’s Giving Tree has become a huge success and an exciting thing for him to watch flourish.  It’s so neat for us to look down that long list of names who have participated – including some names we don’t even know.

Beyond that, the love and devotion becomes immeasurable.  Our family is blessed to have all of you in our lives.  We wish nothing but the best for your families during the holidays.

Cheers and warmest regards,
The Nelson Clan-

A Very Merry Christmas

I just spent the day with Sarah and Noah.  Once again, I am in Grandma heaven. The three of us went to see the Narnia movie and we had such a nice day.  Noah just put his mask on and we chose a place to sit where no one else was sitting.  Germs are still somewhat threatening but his blood counts are all normal so it's not as big a threat as it once was.  Noah isn't completely recovered and the last thing we would want is for him to pick up a virus.  We arrived way too early before the movie started and Noah decided that maybe a little Chinese food might hit the spot before the movie.  So, Noah, Sarah and I had a very nice early lunch.  Lara and Andy were able to run errands and get somewhat organized after being down in Tucson for so long.  They were even able to go out on a date for the first time in months.  This is the first time that Noah had really been out to do anything fun since he went down to Tucson.  He had a great time but was completely exhausted by the end of the day.  Both he and Sarah were in bed asleep by 7:00.

I arrived in Phoenix on Wednesday and Grampa and Sarah picked me up at the airport.  Sarah and I spent Wednesday afternoon decorating the house and Christmas tree so that the house would be ready for Christmas for Lara, Noah and Andy when they returned from New York on Thursday evening.  Thursday, Sarah and I went shopping and bought a few supplies for the house so that there would be a few things that we know Noah would like to eat.  We baked cookies that afternoon but sweets don't seem to be what's high on Noah's list of things to eat these days.

Everything went perfectly well in New York.  Noah loved New York.  They didn't get to see too much of the city because it was really, really cold and because he still wasn't well enough to do too much.  The coolest thing for Noah was that you could just go outside and get a hot dog from a street vendor whenever you wanted one.  Things went so well because of Lara's good friend from college.  Jaye Bea lives in Manhattan and met them at the airport. She saw to it that everyone of their needs were met.  They stayed at the Ronald McDonald House in New York and it is only five blocks from Sloan Kettering.  Lara was very pleased with the accomodations and plans to stay there for every subsequent stay in New York.

Noah had scans and tests done while in New York.  Noah had a MIBG scan, a CT scan and four bone marrow aspirations as well as an Echogram of his heart.  All of the scans done for Neuroblastoma were CLEAN.  All of his blood counts have gone back to normal.  The Echogram showed that his heart is functioning at a low normal level and they will be carefully monitoring that with follow up tests.  The doctors at Sloan Kettering were so impressed with how well Noah has recovered from transplant and how well he responded to treatment.  They are very happy to have Noah be a part of their 3F8 Monoclonal Antibody Therapy Program.

This is a huge commitment on Lara and Andy's part.  They will be going back to New York on the first of January for two weeks.  They will then return to Phoenix for Noah to have radiation therapy.  The good news is that Noah will only have to have the location of his original solid tumor radiated.  January is going to be a very busy month.  The radiation treatments are very exhausting and Noah will need to be kept quiet for those two weeks.  They will be returning to New York for more antibody therapy every three weeks after that.  This hectic schedule seems overwhelming at the moment but so did everything else facing them last March.  The Nelsons are amazing and just keep moving forward with Noah's protocol.  The good news is that there will never be anymore chemotherapy ever again.

Last Friday, Noah, Sarah and I went down to Tucson to check in with the doctors there.  They, too, were very pleased with Noah's recovery and the level of all of his counts.  Noah is still having to take multiple medications but is in the process of being weaned from as many as possible.  Noah will have to return to Tucson this coming Tuesday so that the doctors can check his counts once again.  Hopefully, this will be the last time they see him and they will be able to take him off of all the medications that they have had to prescribe for him.  You can't help but to think that not having to take all of these medicines will help Noah to start feeling better.  His body has been so saturated with chemicals for so long. 

I have an early morning flight tomorrow to return home.  It was so wonderful to see Noah.  I know that he's going to be feeling that much better each day going forward.  I can't thank all of you enough for the many prayers that have been said for Noah.  I'm so glad that I am able to share such good news with you.  This will be the best Christmas for the entire Nelson and Fitting families that we could have hoped for.  Just please continue to pray that any lingering cancer cells will be destroyed during his antibody therapy.  It's been a long ten months and there will still be two more years of treatment to face but let's just pray that the worst is over.

My Love and Gratitude for Your Support,   Grandma

Back to Scottsdale

Today the whole crew moved back to Scottsdale but have to return to Tucson on Sunday to go to Clinic. The doctors want to see Noah again before his next adventure begins.  On Monday, Lara, Andy and Noah will be going to New York to meet with the doctors at Sloan Kettering for the first time.  Noah will be examined and evaluated at appointments on both Tuesday and Wednesday of this coming week.  This will be the beginning of the next phase of his protocol.

If any of you are interested, I suggest that you go to: www.mskcc.org/mskcc/html/3215.cfm for all the information to answer any questions you might have about Noah's next phase of medical procedures.

Sarah is going to be staying with Grampa and Grandma Georgia for a couple of days and then I'll be arriving on Wednesday to watch Sarah until Noah and his parents return on Thursday evening.  Noah has to be back to Tucson on Friday morning to see Dr. Graham at Clinic.  My guess would be that Sarah and I will stay in Scottsdale while Noah goes down to Tucson on Friday.  I'm glad that Lara is the one figuring out these logistics but I'm sure that it will all work because it always does.

Noah is starting to feel much better but is weak and tires quickly.  His counts were up a bit today but still within a reasonable range so it is not a big worry for the doctors.  The good news is that the TPN (total parenteral nutrition) has been stopped and the megase (appetite enhancing medication) has begun.  Lara mentioned today that she has scheduled some needed physical therapy for Noah because of his being so inactive for the past six weeks.  So that's about all that has happened this past week.  Noah seems to have turned the corner with feeling better but is far from being completely recovered.

I really want to thank all of you for both your prayers that are being answered and for your overwhelming response to Noah's request for supporting Neuroblastoma research.  Lara and her family have the most incredibly supportive and loving team around them at all times. The support really shows when you see how many ornaments are on Noah's tree.  I will post Noah's note once again so that you will know what I mean if you click on the website that Noah talks about in his message.

Again, keep the prayers coming because Noah has another long road ahead of him in New York for the next two years.  I think that we're all grateful that transplant is behind him now.  That was suppose to be the worst of it.  I really hope that researchers come up with some less traumatic procedures for children in the future.  That is why research is so important.  Both to find a cure and to modify existing procedures so that they not be so debilitating.

Much love and gratitude,  Grandma

Thank you everybody for the awesome donations and ornaments for my "Lunch for Life Giving Tree". 

I really, really, really, really, want to go to the Big Kahuna - DisneyWorld, so please keep the ornaments coming - $5 bucks is all it takes.  I challenge everyone to decorate another tree before the deadline of XMAS Eve! 

Besides getting me to DW, your donations go directly to the Neuroblastoma doctors that are working hard to keep me ALL better.

The donation process is SUPER easy:  Just click on the "Lunch for Life" link @ www.lunchforlife.org.  From there, scroll down to learn and participate in the "Lunch for Life Giving Tree Program".  Once there, simply click on 'Donate your Lunch' located on the left side of page to donate and follow the directions.  Be sure to choose the donation in honor of Noah Glen Nelson to ensure the ornaments get hung on my tree.

Thanks again for everyone's help~

May the Force be with You during the holidays!

Love, Jedi Noah

A Message from Noah and Andy

Thank you everybody for the awesome donations and ornaments for my "Lunch for Life Giving Tree".  My dad and I looked at my tree this morning, and it's looks almost full already.

I really, really, really, really, want to go to the Big Kahuna - DisneyWorld, so please keep the ornaments coming - $5 bucks is all it takes.  I challenge everyone to decorate a second tree before the deadline of XMAS Eve! 

Besides getting me to DW, your donations go directly to the Neuroblastoma doctors that are working hard to keep me ALL better.

The donation process is SUPER easy:  Just click on the "Lunch for Life" link @ www.lunchforlife.org.  From there, scroll down to learn and participate in the "Lunch for Life Giving Tree Program".  Once there, simply click on 'Donate your Lunch' located on the left side of page to donate and follow the directions.  Be sure to choose the donation in honor of Noah Glen Nelson to ensure the ornaments get hung on my tree.

Thanks again for everyone's help~

May the Force be with You during the holidays!

Love, Jedi Noah


We just got news that Noah's platelets are still holding well at 46K after being at 55K yesterday.  NO platelets today.  Hemoglobin still stable at 8.8 and ANC is above 2500.  This all looks very promising.  Now if we can just get him off the TPN and eating.  He sure wants to eat, so hopefully we can start up the megase (appetite enhancing medication) soon to make it all possible.

xoxo
AGN