Noah Nelson

Happy Halloween

I'm happy to report that Noah is still doing well.  The nurses are very surprised and one of his doctors is as well.  Dr. Graham says that he's not really all that surprised because each child that he treats reacts differently and Noah may be a bit more fortunate than others.  Now that doesn't mean that things couldn't change dramatically very rapidly. Noah has been able to have a good Halloween in the hospital.  He's the only child in that part of the hospital right now and all of the medical staff is making sure that his Halloween is special.  Last night, his night nurse painted pumpkins with him and played Monopoly with him until 11:00 o'clock. 

One of the social workers at the hospital came around and offered him a choice of costumes.  Noah's first reaction was to refuse them because he had brought his own Stich costume with him.  He asked what one of them was and the response was that it was a bu-- ugly Martian.  Noah loved the terminology and had to have it.  Now he can tell everyone with giggles that he's a bu-- ugly Martian.  The nurses have taken to calling him by that name.  Noah like any other five year old little boy can't believe that he's getting away with using that word but that was what he was told and he's sticking with it.  Who could deny that his having a few giggles would only help with his recovery?

Grampa and Grandma Georgia went down to Tucson on Sunday to stay for a few days and are helping to keep Noah entertained as well.  They came with some new games and are helping to keep Noah occupied with learning to play them.  Lara and Andy were even able to sneak out for awhile to go out to dinner.

I went up to Auntie's house this evening and went trick or treating with Sarah and Sean.  Sarah was pretty tired so we weren't able to be out for too long but she did manage to get some of her beloved "chocolate".  It was a bit unfortunate that we went to standard time this weekend so that her time table was a bit off.  She went to bed soon after we returned home so I hope that she adjusts to the  time change within a few days.

Things are going fairly well for now.  Let's hope and pray that it continues to go that way.  Lara has been in contact with the doctors at Sloan Kettering in New York and they will be in charge of Noah's protocol after he leaves Tucson.  She's not exactly sure what the scheduling will be but there will be more treatments for Noah in the future.  Radiation will take place for sure but just when they will do that hasn't been positively scheduled as yet.  So there is still a long road ahead and I will once again ask for prayers that Noah's recovery from this transplant goes as smoothly as possible.  Also pray that all the decisions that will be made for his future treatment are the correct ones. 

With much love,  Grandma

Please leave us a message.  It's so nice to hear from you and to know who's checking the website.

Things Are Still Going Well

I just want to let you know that things are still going well.  Noah's first chemo ended yesterday at 4:00 P.M. and he has had today off.  Things have been going reasonably well because he has had absolutlely no nausea whatsoever.  The doctor said that he probably won't experience any since it hasn't materialized by now. He's still eating normally and his energy has been pretty high considering that he's completed the first phase of this very powerful chemotherapy.  Noah will begin another type of chemo tomorrow and it will begin in the morning and will only last for four hours.  This chemo will be given intravenously.  I believe that he is to receive his stem cells on Wedneday.

The doctor had mentioned to Lara that Noah would start being sick on Monday and what Lara thought by that was that nausea would set in at that point.  What he meant was that his energy would drop and that the oral mucositis would start once again.  This is what Noah experienced during his last mini stem cell transplant.  This is commonly referred to as "mouth sores".  Oral mucositis is an inflamatory reaction of the upper gastrointestinal tract from mouth to stomach and surrounding soft tissues.  This is extremely painful and will require a morphine drip this time.  Unfortunately, it is anticipated that recovery will be slower and more difficult due to the intensity of the chemicals used this time.  This is why Noah is required to stay in the hospital for another three or more weeks for his recovery.  So this is why not having nausea added to the mix is a really big plus.

I asked Lara yesterday, if she was getting bored being in the hospital since Noah was feeling so well and she explained that there was a lot to do everyday even though he was feeling well.  His mouth has to be cleaned at least five or six times a day.  He has to shower and having a dressing change everyday.  Not to mention all of the tests that are run and all of these activities add up to filling your day.  So boredom has not been an issue.  It's nice for Lara on the weekends because Andy spends the night with Noah and so she gets a break from the hospital.  Hospital food is the thing that no one is going to miss.  Lara is still bringing food in because Noah will be losing his appetite pretty soon and wants him to eat before that happens.  The good news is that Noah is up to forty-eight pounds.  He's grown taller than he was last Spring but at one point his weight had dropped to thirty-four pounds and he dropped to that weight fairly quickly.

Sarah was at another Halloween party in Auntie's neighborhood yesterday and they had a jumpy as well.  I went and brought Sarah home with me to spend the night and Sean went  off to his other grandparents' house for the night to give Auntie and Uncle Jamie a break.  We met up at the pumpkin patch this morning where we met up with a good friend of Lara's from high school and her family.  And guess what?  There was another jumpy.  So, Sarah has been in good spirits having her favorite pastime provided for her.  I'll go up to Brigit's house after work so that I can go trick  or treating with Sean and Sarah.  I'm so grateful that Noah was able to have his Halloween before he went into the hosptial.  Once again, a big thanks to all of you who provided that for him.

So, this week is predicted to become a tough one.  Please, please keep Noah in your prayers so that the next few weeks go by quickly and without any unexpected complications.

With much love,  Grandma

Please leave a note so that we know who's checking the website.  The website hasn't been working and so it didn't post if you were trying to leave a message.  I haven't been able to post a journal until now as well.  Things seem to be working now so let's hear from you.

All is Well

Sorry I didn't post a journal last night but I didn't get home until late.  I just want to let everyone know that things are still going well and the doctors do not anticipate any side effects to begin until next Monday.  Noah moved into the Lilo and Stitch room yesterday and he was very thrilled about that.  A little change is always good during a hospital stay.  Things have even calmed down during the night because they don't need to check his blood quite as often as they did during the start of chemo.  Noah seems to be tolerating everything just fine for now.  He's even eating.  He's not fond of the hospital food and seems to refuse to eat that but Lara manages to get out and bring back things that he likes to eat.  So, we're hoping that the weekend will go smoothly as well.  I won't update again unless something changes.  For now, everything is okay. Keep Noah in your prayers that things don't get too rough on Monday.

Much love,   Grandma

Not Much Happening Today

I debated whether or not to post a journal tonight but then checked the website stats and saw that there had been over three hundred hits in the past twenty-four hours. I realized that maybe I had better let you know that things were going very smoothly so far today.  I haven't spoken to Lara since the afternoon but that's how things were going when we last spoke.  The taste of the chemo passed Noah's approval so that proved not to be a problem.  The one negative is that the nurses come in every hour to check on Noah and have to wake him up. Lara said that the night was pretty rough.  Lara also mentioned that Noah is hooked up to several individual pumps with tubes of medication being pumped into him.  I have this vision of Noah being completely tangled in this web of tubes.  I'm sure that I'm wrong and the medical staff has it all very organized.  The biggest challenge today was keeping Noah entertained because he was feeling well and his energy was up.  He was asking for his dad to come to the hospital when I was talking to Lara.  I'll bet Andy was able to come up with some good ideas to pass the time.

That's really all I have to report about Noah thus far.  Sarah and I did have our ladies' lunch today and it's such a treat to have my granddaughter so nearby that I can do that now.  Sarah was well rested and a delight to be with this afternoon.  All is going well at Auntie's house. 

Once again, please keep Noah in your prayers so that the next weeks will go by quickly and as smoothly as possible.

Much love,  Grandma

Don't forget to leave a message.

Chemo Has Begun

Noah was admitted to the hospital this morning according to schedule.  The day began by having intravenous fluids given and chemo started at 10:00 tonight.  This time his chemo will be given orally instead of intravenously.  He had a choice of either taking fourteen pills or taking it in liquid form.  Lara couldn't imagine which would be worse but decided that it would be near impossible to get Noah to swallow fourteen pills every four hours so opted for the liquid version.  The doctor promises that it tastes good and that it shouldn't be a problem.  Let's just hope that Noah thinks it tastes good.  The bad thing is that it will be administered every four hours for five days.  This means that Noah will have to be awakened to take it at night.  Having interrupted sleep every four hours doesn't sound very appealing either.   Noah was hoping to be in the Lilo and Stitch room but it was occupied. It may become available in a few days so he may be able to change rooms if he still wants to be in that room.

Sarah and Kevin arrived this afternoon.  Sarah is staying at Auntie's house and I went to see her at dinnertime. I stayed until she went to bed.  She seemed very tired and Auntie said that she was asleep before her head hit the pillow.  Sean has Gymboree tomorrow so Sarah will come and visit me at my office.  We plan to have a ladies' lunch out while Auntie and Sean are off doing their activities.  It's so nice to have Sarah so nearby.  I'm so looking forward to spending some time with her.

That's about it for now.  I just wanted to let you know that everything is going as planned.  Noah will have this chemo for five days and then another one after that.  I will keep you updated on how things are going.  Please remember to keep Noah in your prayers.  His tests showed that there were some irregularities with his liver.  No one knows exactly what that means at this point but there was nothing to do but to keep going.

Much love,   Grandma

Please leave a note.  It's nice to know who's checking the website.

Noah Nelson Night at the Glendale Arena

Join Noah, his family and friends for Noah Nelson night at the Phoenix Coyotes vs Edmonton Oilers game Sunday, January 29 at 6:00pm at the Glendale Arena.

Tickets are $35 (Upper Level, Center Ice) with 50% of the ticket price donated to Noah and his family and child cancer research. This will be a wonderful opportunity for friends and family to show their support for Noah and celebrate an end to his chemo treatments! 

Don't show up late or you might miss Noah riding the Zamboni during the 1st intermission!

Game Night Details:

• Groups of 15 or more receive special recognition on the Jumbotron!
• For more information call the Lois Exley at 480-664-6893
• Deadline to order is Saturday, December 31st at 5pm (All orders are subject to availability)

Order Your Tickets Today:

Mail Orders:
Noah Nelson Night
Attn: Lois Exley
24215 N. 82nd Place
Scottsdale, AZ 85255

Phone Orders:
Lois Exley  480-664-6893

Ticket Order Information:
# of Terrace Tickets ($35.00) __________
Name: ______________________________
Phone: _____________________________   
Company: ___________________________
Address: ___________________________
City: ___________________ State:_____Zip: ________
Email: ______________________________

Method of Payment:
Check: (made payable to Phoenix Coyotes) Check #: ________
Credit Card:   AMEX   Visa   Mastercard   Discover
Card # _______________________________ Exp. Date: ___________

Download a printable Form:
noah_nelson_night_flyer.doc

It's Back to Tucson

I'm afraid that Noah's reprieve from medical procedures will soon be over.  Disneyland proved to be a great time.  Noah was able to go on all the rides and loved it.  He even braved the Haunted House and Space Mountain.  To answer Uncle Brian's question, he did go on Pirates of the Carribean this time.  Sarah wasn't tall enough for Space Mountain and took a pass on the Haunted House but Noah did them all.  The family even enjoyed having breakfast with Lilo and Stitch along with other Disney characters at the Disneyland Hotel

Sarah and Noah dressed up as these characters at their Halloween party.  Noah, however, had a costume change during the party.  He switched to his Bionical costume because Stitch proved to be too warm for a Scottsdale outdoor party in the middle of October.

After they returned from Disneyland, Noah was able to be on a tee-ball team with many of his buddies that were in his class at Casa last year.  Many thanks to Cara Hoffman for moving so quickly on getting a uniform for Noah.  This was really another highlight of being home and being one of the guys.  Noah was able to play in a game last Thursday afternoon and the coaches let him play pitcher and first base to maximize his time spent in the game.  A heartfelt thanks to all who moved so quickly to allow this to happen.

Sarah had come down with a cold while they were at Disneyland and I think that Lara was secretly hoping that Noah would catch it so that the return to Tucson would be delayed.  Noah, however, remained healthy and the Stem Cell Transplant will begin this week.  Tomorrow, Noah will go to the hospital as an out patient for blood tests, an EKG and an Ecogram.  Tuesday will be the big day when Noah will be admitted to the hospital to begin intravenous fluids and Chemotherapy will begin that evening.  Kevin and Sarah will fly back to California on Tuesday morning.  We're hoping that all goes well and that Sarah can rejoin the family by Thanksgiving.

Noah mentioned earlier today that he's "done with the summer cut".  Meaning that he's ready to have his hair grow back in.  Fortunately, this is his last round of chemo and his hair will start to grow back after this is over.  Obviously, this is the most difficult procedure that Noah has had to face thus far.  The doctors keep preparing Lara for how difficult this is going to be. They are telling her that every living cell will be destroyed and then Noah will be given his previously harvested stem cells to help his cells slowly come back to life.  The intensity of this chemotherapy will be ten to fifteen times what his normal rounds of chemo were and thus the side effects sound as if they are going to be that much worse as well.  This is why Noah's hospital stay is anticipated to be about four weeks.   This time Noah has to stay in the hospital for his recovery period.  Whereas, in the past, he could go to the house in Tucson and return to the hospital as an outpatient during his recovery.

Please keep Noah, Lara and Andy in your prayers once again because this is going to be a very difficult month for all of them.  I will start to update the journal more often because I know that this is a time when everyone will want to know how things are going.  The last eight months have been very long and very difficult but let's hope and pray that we're coming into the home stretch. My hope is that all Noah will have to face in the future is winning or losing a baseball game with his team.  That is to be just a kid playing with his friends.   

With much love,   Grandma

Please leave a note because it's always so good to hear from everyone when Noah is in the hospital.

   

Halloween at Entrada de Oro

Last night was Halloween for Noah.  The Nelson's neighborhood, which is called Entrada de Oro, celebrated Halloween last night by having every household prepared for trick or treating for Noah and all of his friends.  The Nelson's friends and neighbors decided that it wasn't fair that Noah would miss Halloween so they changed Halloween to last night in their neighborhood.  All of this came to fruition due to the magnificent organizational skills of many friends and neighbors but most especially Amy Kingsley, Tracy Allen, Cara Hoffman, Amy Fratatoni and Pam Riley.  Things really got started when word got out that Noah would be in the hospital on Halloween. 

Invitations went out to many of Noah's friends and their families for a huge block party out in front of the Nelson's house.  I think the the final number ended up being that sixty children and forty adults accepted the invitation.  There was a "Jumpy" out in front of the house and tables of food and pizza were put out for all of the party goers.  There were fliers sent out to all of the neighbors to put on their doors if they wanted to participate in the trick or treating for all of the children.  Lara thought that maybe some of the neighbors would do it but that was not the case.  Just about everyone in the neighborhood got involved and had mountains of candy for all of the kids.

I cannot thank everyone enough who participated in this huge undertaking.  Noah is Mr. Halloween and the fact that so many went to such great lengths to do this for him warms my heart more than you will ever know.  Noah has always loved dressing up anytime of the year but Halloween has always been his very most favorite thing in the world. The fact that so many realized this and allowed him not to miss this holiday was truly fantastic.  The organizers of this event were also so considerate of Lara and knew that she didn't have the time to be involved with any of the details of the planning.  It was so wonderful that she could simply enjoy Noah and Sarah having such a great time. 

It never ceases to amaze me how much love and support is given to Noah and his family.  The fact that all of this was done for Noah is almost overwhelming to me.  It is so hard for me to be so far away and sometimes I feel so helpless. Knowing that Lara and her family still have this incredible support team after so many months is really reassuring for me. 

I know that I have been very neglectful with my duties of keeping the journal updated for the past ten days but sometimes I just have to take a break. I just want you to know that things are going well if I don't post a journal.  Sometimes I think that Lara and her family need to have their own personal time when Noah is feeling well.  The last ten days have been spent just doing what they do.  Noah has been able to spend time with his friends and Sarah has been able to go to school.  Lara has been able to get caught up with everything that she needs to do so that she's ready to spend a month in the hospital with Noah.  And of course Andy is working like crazy so that he can clear up his schedule so that he can spend time with Noah at the hospital as well.

So, the last ten days have been spent being together as a family because they have an incredibly difficult month ahead of them.  Fortunately, they are going to get away for a few days and go to Disneyland starting tomorrow.  Sarah's third birthday is next month and she won't be with the family for her birthday so this is going to be her birthday celebration.   Kevin will fly to Tucson next week and spend a few days with the Nelsons before he brings Sarah back to California.

Thanks to all of you for your outpouring of love and concern for Noah and his family.  My complete gratitude to all of you who participated in the fantastic party for Noah last night.  No one likes to party more than Noah and it is so great that he had this big extravaganza before he goes in for transplant.

I probably won't update the journal again for awhile because I won't talk to Lara while they are away.  So, don't worry if you don't see a new journal posted.  All that it means is that things are going well and we're giving the Nelsons a little time to themselves.

Much love and gratitude,   Grandma

Eight Long Days

I haven't updated until now because I've been waiting to hear better news about Noah and it finally came today.  Noah awakened this morning to say that his throat didn't hurt anymore.  He has been on morphine for pain for the past eight days and the weekend seemed to be the worst.  He would wake up every two hours at night and ask for the morphine because the pain was so excruitiating.  Needless to say, it's been a difficult week for everyone but most especially for Noah.

I had mentioned in the last journal that Dr. Graham thought that it might be a virus that was causing the throat pain but that proved not to be the case.  Dr. Graham's partner thought that it was being caused from mucositis due to the chemotherapy. Oral mucositis is an inflamatory reaction of the upper gastrointestinal tract from the mouth to the stomach and the surrounding soft tissues. This is what is commonly referred to as "mouth sores".  Noah's sores or blisters were concentrated in his throat but his lips were also blistered. The doctor predicted that things would get worse before they got better and, unfortunately, he was correct.

The TPN feedings are working and Noah has been able to sustain his weight even though his eating was limited to a few bites of soup every now and then.  He was eating better today so, hopefully, the TPN feedings will be stopped soon.  His blood counts are starting to come up slowly but surely as well.  He's had both transfusions and platelet infusions this past week to help with his counts being so low.  Lara is hoping that Noah will be well enough to go back to Scottsdale by the end of this week.  I think that the whole family is really looking forward to going home and putting the past few weeks behind them before they have to go back to Tucson for the "Major" Stem Cell Implant.  It is still scheduled for the 22nd of the month.  So, they only have a couple of weeks before the whole process will start all over again.

Kevin will come home to California for awhile and then he will go back to get Sarah and bring her back to California when Noah goes into the hospital.  The next stay will be much longer and we anticipate that Sarah will be with us for at least three weeks or more.

So, that's it for now.  Let's just hope that the next couple of weeks will be spent being pain free and having his energy back so that Noah can go back to playing and seeing some of his friends.  Remember to keep Noah in your prayers because he still has to recover from his last ordeal so that he can face his next big challenge.

Lots of love,  Grandma

Please leave us a message below