Noah Nelson

Ready to Leave New York

The biggest news coming from New York is that the Tooth Fairy visited Noah yesterday.  Noah lost his first tooth and it was a pretty exciting event.  New Yorkers kept telling Noah that the Tooth Fairy pays better in New York when they found out that he had a loose tooth.  I think this might have been a motivator for Noah to get that loose tooth out. 

The second week of treatment proved to be a bit less difficult and Noah was feeling well enough to do a little more exploring with his mom.  FAO Schwartz was disappointing for Noah.  He found the four story Toys r Us far more impressive.  Noah's evaluation of New York is that everything is bigger.

On Saturday, a friend of Lara's from high school who also went to the UofA with her came and took Lara and Noah to the Museum of Natural History.  Lauren now lives in Manhattan.  It was really fun for Lara to see her after so many years.  Noah liked parts of the museum better than others.  His favorite part thus far were the mummies.  Those were pretty cool. 

On Sunday, Jaye Bea came and picked them up and took them to a mall in New Jersey that really was amazing.  It sounds as if it was copied after the "Great Mall" because it even had roller coasters.  Noah and Jaye Bea's son enjoyed the arcade games most of all.  They saw an IMAX movie as well.  It sounds as if they had a really fun time.  The Ronald McDonald House had two tickets for Lion King and gave them to Noah.  Noah saw his first show on Broadway.  Both Lara and Noah seemed to enjoy it tremendously.

Unfortunately, reality set back in again today.  Noah had his quadruple bone marrow aspirations done today.  He, also, had his tubies removed.  He seemed to be experiencing a good amount of pain and was only being given Tylenol for it.  Lara decided that it might not be a good idea to get on a plane today and so they will be flying back to Arizona tomorrow evening. 

The best news of all is that Noah has no medical procedures scheduled for the next three weeks when he goes back to New York for his third round of 3F8.  Noah will be returning to school this week for the first time in nearly a year.  It has been the longest year that any of us could imagine but with such a positive result.  Noah will be going back to school just about where he left off a year ago.

As always keep our Noah in your prayers that he stays healthy and is able to go to school everyday that he is home.

Much love,   Grandma

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Missed the Nor'easter

The biggest snow storm ever to hit New York happened last weekend and Noah pretty much missed it due to an unexpected admission to the hospital.  Last Saturday started out to be a pretty good day after having a pretty rough week with the 3F8 therapies.  The 3F8 was causing Noah to be itchy, he had developed thrush and this on top of the crazy narcotic euphoria that he then comes down from. Saturday was beginning to look like a better day. Noah and Lara went out to breakfast, did some errands and even made it to the movies to see Curious George.  Unfortunately, Noah developed a fever by late Saturday afternoon and was admitted to the hospital so that he could be closely monitored.  The doctors at first thought he had a line infection from his Broviac (venous cathetar) and started him on anti-biotics.  Later they thought that it was just being caused from the 3F8.  The doctors at Sloan Kettering are far more cautious than the doctors in Arizona.  It gave Lara a better appreciation of Dr. Cohen who trusted Lara to take care of Noah at home as much as possible.

3F8 started up again on Monday and Noah was allowed to go back to the Ronald McDonald house after his treatment.  The snow had pretty much melted on the city streets by then and was more of a slushy dirty mess.  Noah never seems to mind too much about being in the hospital.  Lara said the best thing about it is that Noah can order whatever he wants to eat whenever he wants it.  He's back on an appetite enhancing drug that tends to make him hungry but he still doesn't eat very much at one time.  A constant grazing is more of what's going on.  Noah lost a great deal of weight during and after radiation so they are trying to get him to regain the lost weight.

Life at the Ronald McDonald House is turning out to be pretty good.  One of the boys challenged Noah to a Yu-Gi-Oh duel and that just about made his week.  They also have had some dinners and a Valentine party for kids staying there.  This really helps pass the time a little easier.

Lara is hoping that they will be able to get out and do some things this coming weekend.  The Museum of Natural History seems to be high on the list of things to do.  Let's hope that this weekend goes better than last.

On Monday, Noah is scheduled to have a bone marrow aspiration.  This is done to reassure everyone that there are still no Neuroblastoma cells lurking around.  Since he has to be put under general anesthetic for his procedure, Noah, his parents and the doctors have decided that this would be a good opportunity to remove his Broviac (Noah calls it his tubies).  This is a huge step.  This venous cathetar has been a part of Noah's body for almost a year.  Noah has decided that he will have future procedures done with intravenous needles.  Brave boy, that one.

In the meantime, Sarah has been having a good time with her friends and school mates in Scottsdale.  It's always good to have one on one time with your dad as well.  Sarah and Andy went out to dinner this week and had sushi. I had no idea that my granddaughter was so sophisticated but apparently she now likes raw fish. Sarah has been learning to swim and has mastered snapping her fingers while her mother and brother have been away. Many thanks to Tracy, Amy and everyone else who is pitching in to help make this all happen.

That's about it for now.  Just keep everyone in your prayers.  This round of 3F8 is almost over and Noah and Lara will be able to go home in a few days.

Much love,  Grandma

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Hockey Night for Neuroblastoma

This journal was originally posted by Andy on the 30th of January but I'm afraid that some of you may have missed it because it was following the notice for the golf tournament that's going to take place in April.  I thought that I'd post it again in case some of you did miss it.  It sounds as if it was such a fun night for everyone and a great fund raiser as well.  I have a more recent journal entry following this one in case anyone would like to be updated as to how Noah is doing now.

              Love,  Grandma

We certainly want to extend our thanks to the Exley family and all of those who participated in the Coyotes hockey / Neuroblastoma fundraiser on Sunday night.  Everyone had a blast and the event certainly exceeded Noah's expectations all around.  He was so excited to see all his buddies, family and friends all at one place.  He got a huge kick out of the Zamboni ride (see photos) and really likes his new hockey jersey.  He even slept with it on Sunday night.  The event raised close to $2000 for the cause.  THANKS AGAIN EVERYONE!

Quick medical update:  Noah will wrap up his radiation therapy come this Friday afternoon.  While it pales in comparison to High-Dose chemo, it has been a little rougher than anticipated.  Heavy nausea, diarrhea and fatigue is a daily battle.  As a result, he is not eating much and we're fighting to keep him hydrated.  These side effects should subside come Monday - just in time for the 2nd round antibody therapy in NYC.

Lara and Noah are heading out to NYC on Sunday morning and I'm staying behind with Sarah for the next two weeks.  Thanks in advance to everyone who will be helping us out during this time.  Noah and Lara will be flying in style from Scottsdale Airport to NYC via a Gulfstream IV thanks to Corporate Angels - what a treat, AGAIN.  The pilot is flying from San Diego, stopping in Scottsdale to pick them up, and then flying onward to NYC.  The plane's ultimate destination is Orlando, FL.....so NYC is a bit off the beaten path.  They will have the plane to themselves during the trip, so it should be a very pleasant flight.  It beats the heck out of Commercial in many respects.

Stay posted for more details on upcoming activities-   

Love to all!   The Nelsons

Back to New York

I have taken a bit of a break from my journal duties because the end of December and the entire month of January are my busiest times at work.  Things are calming down a bit and I am only too happy to once again keep you updated on a more regular basis.  I first want to personally thank everyone who contributed to Neuroblastoma research through "Lunch for Life" by purchasing those wonderful ornaments for Noah's Giving Tree.  I never dreamed that we would have had such an overwhelming response.  Noah didn't win the trip to Disney World but a great deal of money was raised for research and that was our goal.  Thanks so much for your generosity once again.

Lara and Noah are in New York for Noah to receive 3F8 Antibody Therapy.  The reason they are there is because Neuroblastoma is very difficult to treat successfully.  Noah has so far undergone a combination of chemotherapy, radiation, and surgery to achieve being considered NED (No Evidence of Disease).  Unfortunately, there is always the risk of relapse with his disease.

The doctors at Sloan Kettering are providing a therapy with a monoclonal antibody called 3F8 in combination with a substance called GM-CSF, which will hopefully boost the power of the immune system to destroy any residual cancer cells.  3F8 attaches to neuroblastoma cells and helps focus a patient's own immune system-especially white blood cells-to attack the neuroblastoma cells.  Granulocytes make up one class of white blood cells.  GM-CSF increases the number of granulocytes, and makes them better killers of cancer cells.  If you would like to know more about it go to www.mskcc.org/mskcc/html/3215.cfm.

The worst thing about this therapy is that it is extremely painful and necessitates the administration of a very strong narcotic called Dilaudid.  This drug is administered when the 3F8 therapy is being done.  The problem is that Noah then goes through withdrawl from this very strong narcotic and becomes very emotional.  The other problem is that there is residual pain after the therapy is administered as well.  This comes in the form of peripheral neuoropathy.   This causes pain and numbness mostly in his feet and hands.  So, even though, it sounds exciting to be in New York and to sometimes fly on a private jet, it is not a very easy time for either Noah nor for Lara.

I would also like to thank Jaye Bea and her family for their incredible thoughtfulness to both Lara and Noah while they are in New York.  Being met at the airport is really so helpful for Lara.

So once again, I ask for your prayers that our Noah's pain is kept to a minimum and that all of his courageous undertaking is successfully rewarded.

Much love,   Grandma

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