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March 24, 2006

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

March 24, 2006 | Permalink


I always check up on you and have for over six months now, your on my regular prayer list! I hope this week isn't too bad!! I know you probably just want to go home and go on your disney cruise!! Lots of Prayers!!

Posted by: Susan | Apr 19, 2006 5:32:43 PM

Glad to hear you guys are back and enjoying some normalcy. I can't wait to see you again in a couple of weeks. It was cool seeing you at Luke AFB and showing you the jet. Hope all is well.

Much Love,
Uncle Brian

Posted by: Uncle Brian | Mar 30, 2006 1:04:31 PM


We were glad to hear that you had a successful trip to New York. Sorry to hear that you got so sick but I'm sure that it was nice to have your grandma there. You continue to display the strength and courage that we all admire. We look forward to seeing you at the golf tournament in April. Take care.

The Ritt Family

Posted by: Ritt Family | Mar 30, 2006 9:45:09 AM

Hello Noah Glen!! Wow! I wish I could be running all aroud New York right about now! I am very impressed to hear how well you and your family are managing it all. I am thinking about you every day and am so grateful for Grandma's postings, keep up the good work!!

Take Care,

Misha Newgren

Posted by: misha newgren | Mar 29, 2006 3:27:41 PM

Yo Buddy - What great news to hear you're home after your 2 weeks in NYC! I'll bet the best part was having Grandma with you for one of the weeks. I know being with you was a dream come true for her. It's been a long road this last year, but guess what.......all your hard work is paying off in spades (that means: NED!!!). So keep up your great work and please tell all your family how much we love and admire them. The Nelson/Fitting Clan RULES!!! Lots of love forever, Aunt Kathie and Uncle Jerry xoxo

Posted by: Kathie Allen | Mar 28, 2006 6:27:30 PM

You are all an amazing family and a true example of what unconditional love is all about. Thank you for being a source of strength and courage to me! xoxo Claudia Bishop xoxoxo

Posted by: Claudia Bishop | Mar 28, 2006 6:20:27 AM

Little Man,

I had a great time getting to see you tonight so that it gave your mom and dad a chance to go out on a dinner date. I know that you aren't at your full Noah self, but it made my day when I walked into your house and as soon as you saw me, you smiled. I hope that you start to feel alot better in the next couple of days... you and I Sir, have a date coming up soon. You truly amaze me by all your strength that you have. Talk to you soon. LOVE YOU BUDDY!!!! Love, Kylie

Posted by: Kylie Haworth | Mar 27, 2006 9:11:08 PM

Nelson family, I can't tell you how amazing I think you all are. You have all been amazing the past year and should know how proud everyone is of you all. Noah, you are the superhero of the year and put all other superheros to shame. You are probably so excited to go back to school!!! It sounds like New York was a match for you. Isn't it a fun plac? And great people to take care of you too. As always we are praying for you and your entire family. Stay strong Mr. Noah, Love the Kampfners

Posted by: Lorri kampfner | Mar 27, 2006 8:10:04 PM

Thank you for the great update Grandma Kathy! Noah we are SO glad to hear how well you're doing. I'm sorry you were so sick and sorry to hear how painful what you're going through still is. We are all sending our love and thinking of you all the time.

Posted by: Sarah | Mar 27, 2006 1:23:36 PM

What wonderful news. Keep up the good work!

We're still praying for you, Melissa Vos

Posted by: Melissa Vos | Mar 27, 2006 7:08:15 AM

Noah and Family-

What an inspiration you all are! We check in often on the family...we are so incredibly pleased with the current progress and grateful for the updates! Our family continues to pray for your entire family.

The Averitte's

Posted by: Monica Averitte | Mar 26, 2006 8:31:35 PM

Dearest Grandma. I have been concerned about you since we received reports fairly often. It was SOOOOO good to hear you are alright and Noah is "clean" Please don't feel bad about no update for awhile, for goodness sakes, you have so much to contend with. Noah, you are lucky to see all of New York like you have. It must be great!!!!
Prayers are always being said for ALL of you. Hope you feel my hugs. Nancy

Posted by: Nancy Clark | Mar 26, 2006 9:30:37 AM

It is such good news to hear that you are doing so well through all of your treatments. What a trooper you are! We'll keep praying that those cancer cells just stay away. We love hearing about your "adventures" in New York.

Love and Prayers,
Jim and Shirley Kredit

Posted by: Jim and Shirley Kredit | Mar 26, 2006 7:19:39 AM

Hi Noah,
I'm so glad to hear that your scan was clean . I think of you often and pray for you and your family. Keep up the good work Noah! And thanks to Grandma for the update!


Posted by: Lindsay Lanier-Calabro | Mar 26, 2006 5:51:02 AM

Hi Noah,
We are so glad that you are coming home for at least a short while. I am so sorry that you have to go through that horrible pain with your treatments, thank god you have a little break for now. Many thanks to grandma for the great update, we are so happy to hear that there is no evidence of the neuroblastoma. Have a nice, safe flight home. Hugs & prayers,
The Exleys

Posted by: William & Lois Exley | Mar 24, 2006 10:05:02 PM

Dear Noah,
I will be thinking of you and your Mom when you fly home tomorrow. I do think you could be a tour guide for NYC! Thank you to your Grandma for the update. We are all so glad you are coming home! Love, Mrs. Armstrong :)

Posted by: Patricia Armstrong | Mar 24, 2006 7:11:02 PM

Hey Noah:
I talked to grandma and she sure had a great time seeing you. I am excited to come and visit you and Sarah in Arizona in May. My dad, aka Uncle Jamie will even be coming out for the visit. We still haven't come up with a name for my little sister due in July. I heard your vote was Fiona. I think you just liked Fiona from Shrek, and that is why you suggested the name? Too funny! Keep the ideas for names coming. Tell your sister, Dora is not an option.
P.S. T-Shirt King: My mom found a website, www.zazzle.com where you can make your own t-shirt on-line using Disney/Superhero characters. Pretty cool. We will send you some easter cash and maybe you will decide to make one.
XOXO-The Not so Baby Sean

Posted by: Cousin Sean | Mar 24, 2006 7:07:07 PM

Thank you for updating the journal. Our prayers are with the entire family. And what an inspiration Noah is to each of us.

Posted by: Bertha Ferrell | Mar 24, 2006 6:09:08 PM

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