Noah Nelson

A Happy Independence Day

Hi all-

We are one week down with Noah's current round of treatment.  It was a rough week so I know Lara and Noah are looking forward to the weekend break.  Great news from the doctors today - Noah's MIBG scan was clear as a bell - no evidence of NB.  To be sure, we will be celebrating the 4th of July with good reason.

Sarah and I are off to NYC tomorrow to meet Lara and Noah.  According to Lara, Noah has been telling everyone just how excited he is for his sister to be with him for this round.  He plans to show her the town, ntroduce her to all his new friends & nurses, and sleep together in the pull-out couch at the luxurious Ronald McDonald House. 

Our ever-gracious hosts and longtime friends, Jaye Bea and Ken Smalley, have invited us to spend this weekend/holiday with them at their place in the Hamptons.  What a pefrect venue to unwind and spend time with the families!  We will be juggling some logistics back and forth from beach life and Sloan Kettering as Noah does have treatment on Monday...but he is 'off' on Tuesday.  It will be more than worth the short trips to and from the casa de Smalley. 

Next week brings results of the CT scan, urine analysis, and Bone Marrow aspirates.  Since BM procedure will be done on Friday, his bottom will be pretty sore for a few days.  We'll plan on staying in NYC until Saturday evening or Sunday.  He should be somewhat recovered by then.

Thanks to the Allens for their continued help with Sarah this week.  The sleepover was very successful!  It was hard to peel her away from her 'second family' earlier today when I picked her up from their house.  That brings us a great sense of comfort know that Sarah is enjoying her time with her best friend Payton while the family is apart.

Everyone have a wonderful and safe holiday weekend!

AGN

Quick Shout Out

OK, we have traveled from the left coast of San Diego to the right coast of NYC.  SD was a blast and there will be a few stories not to forget from that trip.  Today Noah and Lara finished Day 1 of 10 in his 5th round of 3F8 treatment.  The first day always seems the hardest, but some good news did arise out of the laborious day.  Noah is up to 47 pounds...up 3 hearty pounds from his last visit.  It was very evident in San Diego that his muscle mass, stamina and overall physique had changed for the better - and it was nice to validate this on the scale.  While his appetite will diminish a little during this treatment, it is a great indicator that his body is bouncing back.

We are a little bent out of shape with respect to his daily GM-CSF shot.  This is the medication that his takes over the course of his treatment which boosts his white blood cell count.  The manufacturer of this drug has recently added preservatives and additives which lengthens the shelf life of the drug.  This has proven to have a big negative impact on the kiddos who are going through this protocol.  These new preservatives are causing Noah and the other kids exponential physical pain during the daily shots.  Noah said it was 'a lot worse' than getting his IV poke and Lara said it was rather miserable.  Given he needs this shot for the next 11 days, it is going to make for a long ride and, thus, more sympathetic trips to Toys R Us and the Disney Store.  The dagger:  the drug manufacturer is chasing the ole' mighty dollar without consideration for the kids that are putting up with the pain.  I suppose it is the world we live in today....

Noah will be getting all his scans/tests done this round:  MIBG, CT and Bone Marrow Aspirates.  We'll be nervous but very positive given his disposition and spunk as of late.

The Allens are watching Sarah during the daytime hours this week.  Sarah is glad to have her 'Payton time' and continually begging to be invited over for a sleepover.  We were invited over for fresh dorado fish tacos this evening that Chris brought back from his recent successful fishing trip to the Baja.  Thx Allens!  Come Saturday, Sarah and I will head out to NYC to be with Noah and mom. 

We will be sure to post Noah's results ASAP.

All of our love!

Fun in the Sun

Hello All,

We are back from the Disney Cruise!  The kids had a wonderful time visiting characters on the ship, seeing shows, swimming with the dophins and feeding stingrays (without stingers).  We also spent a few days at DisneyWorld after the cruise.  Noah was brave enough to take on Space Mountain (again), Splash Mountain and Thunder Mountain.  Peter Pan, Dumbo and the Carousel was more Sarah's speed...

The heat is in full swing in AZ...and we are staying busy with summertime activies.  The pool is king!  There is nothing better to stay cool and expend some energy.  It's also been a great form of low impact exercise and muscle therapy for Noah. 

It is going to be a fun/busy summer around here.  Auntie Brigit, Uncle James and Sean spent last week with us.  Next week, Noah is going to a 5-day camp at the golf course that includes golf lessons, swimming, indoor activities and more.  From there, the extended Nelson family is off to San Diego for a few weeks to escape the summer heat.  This year's trip should be much nicer trip for Noah (and everyone) in comparison to last year - no NG feeding tube nor central line to worry about - AMEN!  The kids are looking forward to spending time with their grandparents, aunts/uncles and cousins.  Sea World, beach time, sailing, dinners on the grill and relaxation will consume the agenda.  Beyond that, summer will bring a trip to SF to visit Grandma Fitting and Lara's family.

Right now, Noah is focused on one thing - his 6th Birthday.  Although his birthday isn't until June 15th, he is getting his buddies together this Saturday for a celebration that includes Laser Tag, Pizza and cake.  We'll have a follow-up celebration in San Diego with the family-

Our next trip to NYC for treatment is late June.  Sarah and I will meet Lara and Noah for the 2nd week of treatment.  It will be nice to have Sarah with us this time.  We'll all be celebrating the 4th of July in NYC together...should be a good time.  The Doctors will be doing a full workup of scans and tests during this visit and that always brings a sense of anxiety. 

Finally, we are putting a bow on the golf tournament.  We exceeded the 50K mark this year which represents a 10% increase over last year.  These dollars will fund a significant research project - so THANK YOU! again for everyone's support.

Since we'll be mighty busy until then, the blog may not be updated for a while - unless something renders a post.

Love to all-