Noah Nelson

Kudos to C.B. Wetmore

When I heard that Noah was going to be able to go to the Diamondbacks' batting practice on May 5, I wasn't sure who it was that was responsible for setting this up for Noah.  I learned today that it is Andy's former colleague and friend whose name is C.B. Wetmore.  I want to thank him for giving Noah this exciting experience before he has to undergo so many more medical treatments.  The whole family would like to express to him our heartfelt thanks.

Noah saw Dr. Cohen today and once again Dr. Cohen is thrilled with his progress.  Dr. Cohen always sees his steady progress in the process no matter how sick Noah seems to be to the rest of us. Despite all of his nausea, Noah is up to 35.2 pounds from 34.7 pounds, so his weight is going in the right direction for a change.  He's still down about eight pounds from his original weight but the feeding tube must be working some of the time.

Noah seems to be enjoying having Uncle Jamie around as well.  Noah once said that Jamie is his best friend and that seems to hold true.  Jamie and Noah have always had a special bond and it's good when Jamie gets time away from the law to come and visit Noah. Of course, Noah isn't the only one who likes having Jamie around.  I'm sure that it's great for Auntie and Baby Sean to have the missing link to their family to be with them as well.

With Jamie there to help Brigit with all three kids, Lara and Andy were able to have a quick dinner out this evening.  While Lara and Andy were out, the nausea got the best of Noah again.  Up came the feeding tube once again.  Noah said that it felt good not to have the tube down his throat.  Lara told him that she wouldn't put it in until morning in hopes that Noah might get a really good night's sleep.  Let's hope that it works. 

Again, a huge thanks to everyone that contributes to helping the family with this stressful time.  It wouldn't be going nearly as smoothly without you.  Having Auntie there really helps Lara concentrate on Noah and getting him well.  It, also, helps Andy to have the time to concentrate on work.  All of the other friends and neighbors who are there to help at the drop of a hat is what really makes it all work as well.  Thanks to everyone.

Noah's blood counts are still up enough to go out in public. A game of miniature golf is in the works for tomorrow.  Let's hope that Noah feels up to it.

Don't forget to check in at the comments line. 

With much love and appreciation for everyone's help,  Grandma

A Really Special Treat

Noah found out today that he will be able to go to the Diamondback's batting practice before the game on May 5.  Noah will be given the opportunity to meet all the players on the Diamondback team.  What a special treat for a very special little boy.  The timing on this couldn't be better.  Noah should be feeling better by then and it will be right before his really big undertaking.  That will be right before surgery, stem cell harvesting and round four of chemotherapy.

It's so great that Noah has something to look forward to in the week to come.  Hopefully, this will keep him going and keep his spirits up.  What little boy could think of anything better?  It's so wonderful how the Phoenix professional sports teams will get involved to try and brighten a child's life when they are as sick as Noah.  It really warms my heart to know that there are so many that have so much compassion for a sick child.

This morning Noah stayed home with Auntie while Sarah went with Mom to get her hair cut and to see "her" doctor.  Sarah had to have the tubes that were put into her ears a year ago checked by "her" doctor.  Sarah seemed very pleased to have some "mommy" time all to herself.  She was very specific in her claim that she too had a doctor that takes care of just Sarah.

Noah seemed to be feeling much better today and was up for an outing.  It was off to Wal Mart with Mom and Sarah.  They also made a stop at Jamba Juice.  Things seemed to be going so well that he insisted that he was ready to reclaim his life and go out for an early dinner.  He had it in his mind that he wanted pizza and root beer.  The whole group headed out for the restaurant but Noah wasn't really ready for the dining experience.  Unfortunately, he got sick once again when they reached the restaurant.

Pizza was ordered but they had to make a quick exit and get Noah home.  Fortunately, Uncle Jamie arrived today and he went back to pick up the pizza.  Maybe Noah will be ready for pizza tomorrow.

With love,  Grandma

A Quiet Day

Noah wasn't feeling very well today and spent most of his day being quiet. He saw Dr. Cohen this morning and his blood count hasn't dropped too low yet. His weight, however, has dropped to 34.6 pounds. No matter how much is done to counteract the nausea, it all seems to be for not. The other disconcerting fact is that he told his dad that he is hearing dinging sounds. Tinnitus is a side effect from his last round of chemotherapy and it seems to have set in as well. Let's hope that the "ringing in his ears" subsides quickly.

The one bright spot of his day was that he had a visit from his teachers. It is really sweet of them to take time from their day to come and see Noah.

I only hope that tomorrow is a better day.

Love, Grandma

Finding a balance

Today was a pretty quiet day all and all.  Noah's energy level seems to be going down very quickly.  Lara thinks that he must be getting weak from not having any nourishment for so many days.  The answer today was going to be the feeding tube but the company that supplies Noah with the formula and feeding tube delivered a feeding tube that was way too short.  They never delivered the correct one until five this evening.  The hope is that now that this new feeding tube has been inserted that Noah will be able to be fed through it continuously even after his appetite returns.  The real goal is to get him to gain as much weight as possible before surgery.  Dr. Cohen seems very concerned about the weight loss now as well.

Lara was saying this evening that everything is based on finding the right balance as to what Noah needs and what he can endure.  He needs nourishment but hasn't been able to tolerate anything that doesn't upset his stomach.  It is her goal now to get him to eat what he can tolerate and to supplement his diet with the high calorie formula.  She's hoping that he can be receiving the formula all night while he sleeps.  It would be a very good thing if as his blood counts go down that he will sleep and rest while the formula is being pumped into his stomach.

I am once again amazed at how cooperative Noah is with anything that is being done to him.  The feeding tube that Lara and Andy put in tonight is the third one that he's had to have put in.  I can't imagine that there are too many children that wouldn't put up a  fight having this done to them.  Sweet little Noah just goes along with what needs to be done.  He is really an incredible little boy.

That seems to be the name of the game for what's going on.  Trying to get Noah to gain weight.  It would be a good thing if he could lose the terrible cough that he's had for weeks as well.  He's suppose to have breating treatments several times a day as well.  This makes the cough intensify and the cough sometimes causes him to gag.  Once again finding a balance.

That's pretty much what went on today.  I'll update you again tomorrow.

With love,  Grandma

   

A Better Day

Noah came home from the hospital today.  His spirits seem to be up and so is his energy.  Noah had a transfusion before he left the hospital and that always seems to boost his energy.  His tummy still seems to be sensitive so Mom and Auntie tried their best to come up with something to eat that would both satisfy Noah's taste buds as well as be easy on his stomach.  The good news is that Noah seems to have an appetite but the trick is to keep it down.  Unfortunately, after all their culinary efforts, Noah had a breathing treatment and started coughing and gagging.  You can guess what happened.  The feeding tube also came back up.  The level of frustation must be high.  Lara decided that she would leave the feeding tube out tonight and will put it back in tomorrow morning.  Let's just hope that the nausea is subsiding and eating will begin in force tomorrow.

The really great news is that the surgeon of choice has agreed to perform the surgery that will remove the tumor.  The surgery will be scheduled for some time during the week of May 9.  The other great news is that Noah is half way through chemo.  Three down and only three to go.  The schedule as it stands now is that after Noah recovers from surgery, the stem cells will be harvested, and then the fourth round of chemo.

It's amazing to think of how much has already been done in such a short period of time.  I will remind you that Noah wasn't even diagnosed with Neuroblastoma until March 4.  In less than two months, he has undergone three rounds of chemotherapy and is scheduled to have the tumor removed.  It will be a little over two months from the time that the tumor was discovered and was shrunk enough to be removed.  I think this is the positive that we have to focus on and that will keep us going. 

Noah has an amazing spirit about him and always takes everything in stride.  He truly is an extraordinary child.  I know that I'm his grandmother and of course I would think that he is extraordiary but there really is something very special about his vitality.  I think this spirit along with modern science is a truly great combination.  I will always ask you for your love and prayers.  This is what keeps the whole family going.  I also have to comment on my total admiration for both Lara and Andy and their combined strenth and devotion.  Noah is really lucky to have them as parents.

I hope that I can report tomorrow night that Noah was eating like crazy and was able to keep everything down.  That is our focus for tomorrow.

Don't forget to comment at the end of this journal.  Just click on comments and let us hear from you.

With love and gratitude for all of your support,  Grandma

Not a very good day

Noah was suppose to be discharged from the hospital today because his third round of chemo ended yesterday afternoon.  Unfortunately, this is the sickest that he has been after a round of chemo so they are keeping him in the hospital.  When I spoke to Lara earlier, they were hoping that after not being allowed to eat all day and not having anything milk based put into his feeding tube that he would be ready to try something to eat.  He had a piece of toast at about five and they were hoping that this would be the trick.  Unfortunately, it wasn't.  I only hope that the night goes smoother tonight than the last two have.

Dr. Cohen said this morning that if the surgeon concures, surgery will be scheduled for two weeks from tomorrow. Noah has a lot of eating to do in the next two weeks. Let's hope that his stomach settles soon. Keep those prayers coming.

A personal thanks to Pam Riley for being such a canine sleuth extraordinaire. 

I'll update you again tomorrow night.

Much love,  Grandma

Maggie is Home

The search for Maggie has ended......and the story has a happy ending!  With some great investigative work by our neighbor Pam Riley, the mutt was located in Goodyear, AZ (approx. 55 miles west of her home). 

Cliffnotes of the story:  Some new friends from La Casa and MOPS brought us dinner on Thursday afternoon - THANK YOU BAIRDS.  After sending Brad off in his green Cadillac, I quickly gathered my belongings and headed down to PCH to see Noah and Lara.  4 hours later Auntie called from home inquiring about the whereabouts of Maggs.  Unfortunately, I had no idea - but could only imagine that she shimmied out the door during Brad's visit (as she has done hundreds of times before), only this time, nobody was home 20 minutes later to let her back in the front door.  Friday lunch hour was spent posting LOST DOG signs around the neigborhood and checking the East and West Valley Humane Society locations, but we received not a call nor luck spotting her at the pound.

Today around 2p, Lara was on the phone with Pam, who had just gone around the neighborhood probing for any further information.  I was sharing Noah's bed and dozing off at the time while he was napping.  Pam was telling Lara that one of the neighbors saw a yellow lab jump into a car with a gentlemen.  At that point, Lara said the magic words out loud, "Green Cadillac".  I jumped up out of my snooze and said "BINGO".....turns out, Pam was describing to Lara that the neighbor noticed the man with Maggie was driving a Green Cadillac.

As you could guess, Lara's next call was to the Bairds (whose phone number we found in the MOPS phone book).  They had a yellow Lab alright!  They described Maggie as a calm and well-behaved dog.  Lara apologized for an apparent mixup as these certainly were not the characteristics of the spaz whom we call Maggie (just kidding).  The Baird kids (four of them) said they had a blast playing fetch her in their pool and chasing/prodding her around the house.

She is home safely now!  We'll probably be getting a microchip embedded in her shoulder shortly in case we aren't as lucky next time she gets loose.....and there definitely will be a next time.  Another THANK YOU goes out to the Bairds and Rileys for their help.  The excitement never stops around here-

OK, now for the NoahMan.  Dad stayed at the hospital last night, and overall it was fair to midland.  The nausea was getting him good throughout the night which was negating all the benefits of the feeding tube.  Sarah, Grandma and Grandpa Nelson visited us this morning with Krispy Kreme.  What a hit, temporarily anyway.  5 minutes after they left, it all came back up ALONG WITH HIS FEEDING TUBE.  The RN removed it completely at that point and let his body recover from the trauma.  Later, as I was making the drive to Goodyear, Lara notified me that they were going to put the tube back in soon...and that they wanted Lara to do the procedure.  As we'll plan to keep the tube in for a few weeks to beef him up, it was necessary for her to practice at least once before going home after this round of chemo.  Lara executed like a PRO and Noah was as brave as he's ever been.  Both of them did phenomenally well!!!!!

We battled with nausea throughout the rest of today, but thankfully he has finished up with the Chemo and these side effects should be dwindling over the next few days.  We are very happy that the nutritionist and Dr. decided to go with the tube....he can't afford to lose any more weight.

Family came down this evening to visit him.  He was excited to show cousin Hannah and Grayson his new Star Wars video game he received last night from his good buddy Clayton.

He is sleeping comfortably now as I write.  We'll hold off on the feedings until tomorrow midday to give his body a rest.

As Noah is slightly anemic according to this morning's bloodwork, Dr. Cohen would like to give him a RBC transfusion before his leaves the hospital...which is scheduled for tomorrow.  If all goes according to plan, we should all be home before dinner tomorrow night.

Go Noah and Go SUNS!!!

Love, Dad

      

Buddy or Maggie?

Here's a funny story for you all.   I quickly posted what I thought was Maggie's picture last night.  Lara and Andy being the nice people they are, did not tell me until a few minutes ago that the dog previously posted on the website was not Maggie.  When I looked at the picture last night I thought to myself, I should not be the one to look for Maggie at the Pound, because she does not look like what I had remembered and I don't want to be the one picking up the wrong dog.  Anyhow, the dog photo previously posted was that of Uncle Brian's dog Buddy.  Buddy had stayed with the Nelson's last fall while Brian was away and Lara thought it would be funny to take a picture of him and send it to Brian with a message from Buddy.  Now it all makes sense why there was a picture of Buddy on Lara's computer.  I have deleted the photo, because no photo is better than having a picture of Maggie's cousin Buddy. 

PS At least Lara and Andy got a good laugh in at my expense.  Hopefully we will locate a digital photo of Maggie and post it soon.

~Auntie

Where's Maggie?

Poor Andy !!!  He's driving around the neighborhood and putting up signs trying to find Maggie.   With all that's going on, this is the last thing that they need.  Apparently, Sarah walked around this morning asking where her dog was.  Auntie kept avoiding answering the question directly.  Sarah left for Grandpa and Grandma Georgia's this morning so she never caught on to the fact that Maggie is really missing. Noah will be home tomorrow night or Sunday and we hope the dog is found by then.  I don't think that Noah will be so easily distracted from a straight answer.  We need to find Maggie and fast. 

Meanwhile, back at Phoenix Children's, Noah was extremely courageous this morning with having both the bone marrow aspiration and having the feeding tube inserted.  The nurses were very impressed with Noah's cooperation with having the feeding tube put into place.  It doesn't sound like a very comfortable thing to have.  Apparently, Noah thinks that it's cool.  That's all that matters. 

Unfortunately, by this afternoon, this round of chemo is starting to catch up with Noah. There is a great drug called Zofran that is to help chemo patients with nausea but even that seems not to be working very well now. It sounds as if little Noah is pretty sick once again. I'm asking for prayers to help Noah get through the next week or so. The side effects are so unpleasant and he really is so good with dealing with them. He's really so brave and so uncomplaining most of the time. It just breaks my heart to hear what he's going through. I hope that I have happier things to report tomorrow. You might want to say a prayer that Maggie is found soon as well. That would be one less diversion for everyone to think about.

Much love, Grandma

Have you seen my dog Maggie?

Well luck would have it that Noah's dog would be lost when Auntie was in town.  Auntie, Sarah and Sean went to pick up Uncle Jamie at the airport this afternoon.  Dad was at home working when dinner arrived.  Perhaps the escape artist snuck out then.  Dad met us all at the hospital for a quick visit.  I just called mom and dad and asked them where "Mags" was.  Dad said he would be right home searching the neighborhood and driving around looking for her.

In Case you don't know Maggie she is a yellow lab who is about 10 years old.  Unfortunately she was not wearing her collar.  Auntie called the Pound and the recorded message said that dog owners need to visit both locations (Mesa and Phoenix) every few days to see if their dog is there and due to the high volume they can not verify over the phone.  If any of the neighbors are checking Noah's website, please let us know if you saw Maggie tromping around this afternoon.

Many Thanks:

Auntie