Noah Nelson

A Lot is Happening

A great deal has happened since I last wrote a journal.  Noah has had a platelet infusion and two transfusions and is eating like never before.  The platelets and transfusions have brought all of his counts up so that he's allowed to be in public once again.  The appetite enhancing drug has been increased and he seems to have an insatiable appetite.  He has learned how to swallow pills and can take his oral meds with no problem.  Noah has pretty much decided that he has had it with the feeding tube and is doing whatever it takes not to have it anymore.  He's really doing a good job.  The dreaded mouth sores returned but Noah has been able to express when he needs pain medication to keep the pain in check.  So most things are looking up.

I want to thank everyone for their response to the two requests that I made in the last journal.  Lara, Andy and both kids are headed off to Tucson to check out places to rent for their extended stay there.  They had quite a few leads on places and let's hope that one will make a perfect fit.  I also need to explain that Noah will need to be flown to Sloan Kettering in New York every five to eight weeks for two years for anti-body treatments after he's done in Tucson. This probably will begin sometime in December.  This will all have to be done on a private jet because he can't be exposed to all the germs that he would encounter on a commercial flight.  This does sound a bit daunting but that's what is going to be needed.  We have gotten some response on that as well but it will entail at least ten flights so we would still like to hear from anyone that might have a lead on any possbile connections.

Things are really going to start happening very soon.  Noah will be admitted once again to Phoenix Children's on Monday.  He will have both a bone scan and a bone marrow aspiration on Monday.  On Tuesday he will be given iodine to protect his thyroid from the radiation that he'll get from the MIGB scan that will be done on Wednesday.  All of these tests will give the doctors a clear idea on how Noah is progressing and what needs to be accomplished with future treatments.  Noah will be going down to Tucson on Friday to have more stem cells harvested in case he should need more in the future.  This time they will take stem cells from his groin so that he won't need to have a venous catheter put in his neck like he had the last time stem cells were harvested.

It hasn't been determined whether Noah will stay in Tucson and begin the stem cell rescue right away or if they will wait a few days.  It is scheduled that Noah will have two mini stem cell rescues and then a major one.  The first two mini rescues will mean that the Nelsons will be living in Tucson for about a month each time with a little time spent at home in between.   Then back to Tucson for a two month stay for the major stem cell rescue.  It's going to be a very intense next few months and we're all ready to help as best we can.  I'll be going to Arizona this coming week for an indefinite period of time and we'll see how it goes.  Both Nelson and Fitting familes are both on stand by to see when and where they might be needed.  I know there will be plenty of help between both families and friends.  The key will be to have Sarah spend as much time with her mom and dad as possible.  There will be times when she will have to be with either extended family or friends but I'm sure it will all work out.

That's pretty much what has been and will be happening.  The whole Nelson family has an incredibly challenging few months ahead of them.  I'm sure that many of you will be called on to help and that you will respond with the amazing generosity that you have shown in the past.  Lara and Andy are lucky to have all of you in their lives.  Keep all of us in your prayers and thoughts so that we might all face the challenges ahead.

With love and gratitude,  Grandma

Click on Seaside San Diego to the left of the journal if you'd like to see recent photos of Noah

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Chemo Recovery

Not a whole lot is going on at the Nelson household these days.  Noah's counts are almost depleted and he has very little energy.  He's sleeping a great deal and is back to looking at food as if he might like to eat it but just can't bring himself to eating it.  This is getting to be a pretty familiar pattern.  This is the end of day eight since his last chemo ended and hopefully he will start to be feeling better in a few days.  Noah is seeing Dr. Cohen and a platelet infusion has been ordered for tomorrow so that should help him feel a bit better as well. 

Dr. Cohen has been in consultation with Dr. Graham about the two new spots that showed up on the PET scan and they both feel that Noah should  move forward with his prescribed protocol.  They will do a complete work up before Noah goes down to Tucson for his mini stem cell rescue.  This will include another MIGB scan.  These scans will be used as a comparison tool.  Dr. Cohen seemed to think that these new spots were not as troublesome as they might be if they had shown up after Noah has had his stem cell rescues.

So far they are thinking that Noah, Lara and Andy will be going down to Tucson for his mini stem cell rescue during the first week of August as originally planned.  Then he will come home to recover for about six or seven weeks.  They will then all be returning for the major stem cell rescue sometime around the end of September.  The problem that Lara is having is finding a place for Lara and Andy to stay in Tucson for this time period.  They will need to rent a place in Tucson for about two months.  It would really help if anyone knows of a place that is within a ten minute drive to the University campus that isn't part of student housing that they might be able to rent.  Please let us know if anyone knows of a place that might work.

They are planning to go to Sloan Kettering in New York for further treatment in the winter after Noah somewhat recovers from his treatment in Tucson.  They are going to need an angel flight.  What I mean is that his counts won't be high enough to fly commercially and he will need to be flown on a private plane.  I've been told that there are such things as angel flights and that corporations or individuals will provide their private planes for kids with cancer who can't fly commercially.  Please contact us If anyone knows anything about this possibility as well.

That's really all that is happening for now but it has given Lara time to think about what needs to be arranged for the future and it would be great if anyone can help with either of these problems.

Thanks again for everything that's being done by all of you to help.  I know that meals are still being delivered every few days and this is an incredible help now that Brigit has gone home.  A special thanks to Madelein Himmelein who is foregoing her birthday gifts so that money can be donated to Neuroblastoma research.  There was recently an article in USA Today that explained how dismal the amount of money that is spent on pediatric cancer research because it is so rare.  It doesn't seem fair when you're in the middle of trying to find answers for this horrible disease.

I will once again ask for your prayers and for you to keep Noah in your heart.

With much love,  Grandma

PET Scan Results

Yesterday, Noah went for his first PET scan and Lara received the results today.  PET stands for Position Emission Tomography.  PET scans use an injection of radioactive glucose, which gets quickly taken up by most cancers making them easier to detect.  A scanner then spots any cancer deposits.  There were two spots located this time.  One was in Noah's neck and the other was located on his right kidney.  Noah's initial solid mass tumor was located on his left adrenal gland which was removed during surgery following his fourth round of chemotherapy.

This was not the news that we were expecting as Noah's MIBG scan done in May had been totally clean.  Dr. Cohen seemed calm about the PET results and said that it could be possible that this was a false positive result.  Noah is now recovering from his last round of chemotherapy and will not be up to having any further tests until his counts come back up.  Tucson is still on the schedule and I will let you know if there are any other comments about the PET results from Dr. Graham once he sees the test results.  Lara did say today that one thing that she learned at the Neuroblastoma conference was that MIBG scans are more accurate than any other tests for Neuroblastoma.

Keep Noah in your prayers,  Grandma

Chemo Is Over

Noah returned home today after completing his sixth and final round of chemotherapy.  It appears to be another successful round and he now has three weeks to recover before having to go down to Tucson for a mini stem cell rescue.   Lucky for both Andy and Noah that Kylie (Baby sitter Extraordinaire) was able to spend time with Noah on Saturday.  This allowed Andy a little time to get away and for Noah to spend time in the play room at the hospital.  Kylie's visit also provided time for  Andy to go out to dinner with Lara when she returned from Chicago so that she could tell him about the conference while everything was still fresh in her mind.

Lara returned home yesterday afternoon from her incredible submergence into the world of Neuroblastoma with both medical experts in the field and with other parents who are going through the same experiences that she and Andy are having.  It sounds as if the whole experience was very intense and sometimes sad but that overall an invaluable source of knowledge.  She was so lucky that Christine Kingsley was able to go with her because Christine has a scientific background and was involved in doing antibody research.  Christine was invaluable for Lara to have with her because they were able to discuss the lectures that were presented at the conference so that Lara could confirm that her understanding was correct.  It was also good to have an old friend with her who was able to see when Lara needed a break and to get her away from the conference when she was on overload. 

The one stroke of bad luck is that Lara had a cold when she left for Chicago and it seems she has returned with an even worse one.  Sarah also seems to have come down with a cold while she was at the shore with her Nelson Grandparents.  Obviously, this was a concern for Noah coming home because Noah's counts will drop and will be very susceptible to such germs.  Dr. Cohen, however, feels that Noah probably will come down with it anyway and that it's more important for him to spend time with both Lara and Sarah because there will be such long spanses of seperation once he goes down to Tucson.  It's best to just spend time together as a family.  Normalcy is key.  They will deal with the cold if they have to and it's not that big of a deal.  Everyone has now mastered the breathing treatments and if that is what needs to be done then so be it.

Noah always gets a treat when he leaves the hospital for being so good and brave while being there.  He has been wanting a bow and arrow ( a toy one with a rubber suction cup for a tip) forever but has always been told no.  Well, rules are sometimes overlooked because let's face it there's not much to look forward to when you've just finished a round of chemotherapy and you won't be able to go out or have visitors.  Lara caved today and Noah had a great day playing with his treasured new toy.  I have to tell you that I'm really happy that he finally got it because he's wanted it for so long.  Apparently Maggie has been hunted all afternoon.  Don't notify the SPCA because he's not a very good aim but he had such good time doing this.  I'm sure that Maggie was loving it because she misses Noah when he's in the hospital and there's no one to play with her. 

Sarah returned home from being with her Nelson Grandparents for the last week.  The whole family will be home together tonight but Andy has an early morning flight to the midwest for a business trip.  Lara will be back on duty for the next few days.  She has decided that she and Sarah will both visit the doctor tomorrow to see if there is anything that can be done for their colds.

A lot will be going on for Noah now that all of his rounds of chemotherapy are behind him.  A PET scan will be scheduled for either Tuesday or Wednesday to make sure that there is no evidence of Neuroblastoma.  A meeting with Dr. Graham will be scheduled as well to determine when the mini stem cell rescue will take place in Tucson.  Lara asked tonight if I could come down and stay with Sarah when they all have to go Tucson.  Of course I am delighted because I haven't seen Noah or Sarah in a month and I really miss them.

I will let you know if there are any changes or if anything new happens.  For now that's about all that I have to report.  Pray that the stem cell rescues go as well and are as successful as chemotherapy has been.  It's so great that the chemotherapy is behind Noah but his biggest challenges are ahead of him and he needs more prayer to get him through these next intense procedures.  He's an amazing little fighter and is doing his part.  I'm so proud of him and how he accepts every new challenge.  Prayers for Lara and Andy are needed as well to help them get through all that they have facing them.

With much love,  Grandma

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A Bit More Vacation Fun

Sorry that I haven't updated in awhile but I've been very busy at both work and at home.  I had begun a house renovation before Noah got sick and am now just getting back to it.  I also had Baby Sean with me this past weekend and that of course takes priority.  It's really good to be able to spend time with him again.  He was gone for a very long time.

Noah saw Dr. Cohen last Thurday and his counts were up so he was given the okay to join the Nelson family on their vacation.  I think that Lara must have assured Dr. Cohen that they would be near enough to a hospital if Noah needed a platelet infusion while they were away.  Thankfully Noah never needed one and they have all been having an absolutely wonderful time.  The appetite enhancer that is being administered to Noah is working like a charm.  Noah is eating like he did before he got sick and that is wonderful news.  Let's hope that he's gaining some weight because round six of chemotherapy is scheduled to begin this coming Thursday.

The Andy Nelson family will be returning to Scottsdale on Wednesday so that Noah can keep his appointment with Dr. Cohen.  Noah and Andy will be checking into Children's Phoenix on Thursday so that Noah can begin round six.  Sarah will stay with her Nelson grandparents and Lara will fly to Chicago with her good friend Christine Kingsley to attend the Neuroblastoma conference.   Lara and Andy will have some big decisions to make after Noah completes his stem cell rescue in Tuscon and she wants to be completely informed as to what the next step should be.  She's hoping to find out what's the latest on continuing therapies and to talk to other parents in her same situation.  She's hoping that this will help her to know what has worked best for those that have survived.

That's about all I know that's happening.  I hadn't spoken to Lara until today so I was sure that they were having a great time or I would have heard otherwise if Noah hadn't stayed healthy enough to be a part of the vacation activities.  I'm so glad that Noah has had a little bit of fun this summer in between his stays at the hospital.  I'm sure he'd rather stay with Sarah and have fun but he knows that he needs to go back into the hospital.  He's always such a good sport.

I will only update my journal if I have any news that anything has changed.  This is the game plan for now and I expect that this is how things will stay for the next few days.  Let's hope and pray that this next round isn't too rough on our brave little guy.  He's been such a trooper and is so lucky to have the parents and extended family that he has so that he can have a little fun in between treatments.  As always, keep him in your thoughts and prayers.

With love,  Grandma

A Fun 4th of July Weekend

Noah and his family were able to go up to his Nelson Grandparents' vacation home in Flagstaff on Friday afternoon.  It wasn't even determined that they could go until Friday but they were hoping that they could.  Noah's counts were low and he was still getting sick but Dr. Cohen finally gave his okay.  It was so good for everyone to get out of the Scottsdale heat and to finally be able to  get out of their house.  It was a real morale booster for everyone.  It must have been nice for Lara and Andy to just spend some relaxed time with the kids by themselves.

Noah was able to go fishing every afternoon and that is one of his favorite things in the world to do.  Just being outside playing was great for Noah and Sarah.  They got to go to the park and play.  Lara and Andy got scooters for Noah and Sarah which they were able to ride out on the driveway.  They just had a great time being outdoors.  Lara said Sarah had a wonderful time putting peanut butter out on the deck for the birds and squirrels and would watch them when they would come to eat it.  This apparently kept Sarah entertained for hours.  This combined with all the games and puzzels that Grandma Georgia keeps for the kids was just a wonderful time for the family.

Just to let  you know how times have changed, however, Lara dropped Andy and Sarah back home on Monday on their way back from Flagstaff while she and Noah headed off to Phoenix Children's emergency room for a platelets infusion for Noah.  It was pretty traumatic when they first had to take Noah to the emergency for a platelet infusion but now it was done as if it were a perfectly normal thing to do.  Andy dropped Sarah off at the hospital after her nap because he was on his way to the airport.  He had to go to Chicago on a business trip and Sarah just stayed with Lara and Noah until Noah was ready to go home.  Fortunately fireworks were being shot off close by their house and they were home in time to see them.  Just a normal 4th of July with a detour to the emergency room. 

Noah saw Dr. Cohen today and the news on all of his blood counts are dismally low.  Dr. Cohen lowered the boom and Noah is not to be out in public nor is he to have any visitors until all of his counts come up. His traveling days are a thing of the past for now.  So, it's back to confinement in the house in Scottsdale.  Hopefully, it won't take too long before they come back up.  His platelets are still very low considering he had an infusion on Monday.  His red count is almost nonexistent and is a good indication that a transfusion might be in the works.  The good news is that Noah's appetite seems to be returning a bit.  Dr. Cohen prescribed an appetite enhancing medicine today so let's hope that does the trick.  Noah should be scheduled to have round six of chemotherapy start next Wednesday but everything depends on his counts coming up high enough.

Lara has decided that she will be going to Chicago for the Neuroblastoma conference and Andy will go to the hospital with Noah if he needs to start chemotherapy when she's gone.  They would have loved for it to work out so that they could all go to the conference but it's more important not to interrupt Noah's protocol than for them all to go to the conference.

So that's pretty much what's been happening.  I didn't really talk to Lara while they were away because it was best that they just spend time enjoying being together and not being bothered by Grandma.  I was so pleased that they were able to get away and have a break from hospitals and doctor's offices.  I have to admit that I really missed Noah last night while I was watching fireworks.  This is definitely a shared love that Noah and I have.  I can't wait until next year and I have Noah on my lap watching them together.

I know I'm not updating the journal as often as I had in the past but there isn't always anything to report.  I will let you know If anything really drastically changes but I won't be updating as often if there's nothing really new to report.  I think that we have all relaxed a bit with Noah's progress and have become accustomed to what it's like to live with Neuroblastoma.  I still marvel at Lara and Andy and how well they deal with everything.  Keep everyone in your prayers because they're helping and we cherish them.

Much love,  Grandma

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Noah's Circle of Love

Please join us in creating a circle of love, prayers and positive thoughts surrounding Noah Nelson.

As most of you know, Noah was diagnosed with neuroblastoma on March 4, 2005.  He has responded well to initial treatments and is showing us all what a strong little guy he is.

Noah's Circle of Love bracelets have been made to bring together all of us who love the Nelson's dearly.  By wearing this bracelet, we will be reminded of the challenges that Noah is so bravely facing, we will be reminded to send our prayers and positive thoughts and we will all be part of his recovery.

Please see the information below to make a donation and request a bracelet.  A minimum donation of $5.00 per bracelet is requested.  For additional information please contact Amy Kingsley at [email protected].

To make a donation using your PayPal account, click the button below:
(Please specify the number of bracelets that you are requesting, and preferred size - Adult / Child -  under the "Request Details" section)

To make a donation by check, please send to:

Amy Kingsley
2223 E. Vista Bonita
Phoenix, AZ 85024

Please be sure to include your name, address, phone number and the number of bracelets you are requesting.

Thank you for your donation.  All proceeds will be delivered directly to the Nelsons.