Noah Nelson

A Slow Recovery

I'm sorry that I haven't updated the journal in awhile but I've been very busy.  I tried to spend as much time as I could with Sarah when she was here in California.  She and Uncle Kevin returned to Tucson last Tuesday to be reunited with her family.  I will miss her but I'm sure she's happy to be at home.  Kevin has joined the Nelson household to help with anything that he can.  Kevin and Sarah seemed to have bonded and I think she's enjoying having him there.  I know that Lara appreciates his being there.

Noah on the other hand has had a very slow and painful recovery and has been pretty miserable overall.  What has been the biggest source of his discomfort has been his throat.  At first, they thought this was being caused by the dreaded mouth sores that is caused from the chemotherapy but now they are starting to question that diagnosis.  It is thought that maybe it is a virus that had been dormant in his body that has now materialized.  Noah has been receiving morphine for the pain.  Obviously, eating has been nearly non-existent because it is so difficult to swallow and a feeding tube is completely out of the question.  They have begun TPN (Total Parentarel Nutrition) which is administered through his venous catheter.  This will provide some essential nutrients such as vitamins, minerals, glucose, protein, and fat that will go directly into his bloodstream and should help with the threat of malnutrition.

The doctors were concerned because Noah's tests were showing abnormal liver function but Lara remembered that she had been told that an anti-fungal medication that Noah was being given could cause liver damage especially at the dosage that he was receiving.  That medication has been stopped and the problem hopefully will correct itself in a few days. 

Noah received platelets yesterday but his other blood counts are almost non-existent.  This very essential part of Noah's recovery is a reminder as to how important it is for people to donate blood.  Noah as well as every other cancer patient are dependent on these transfusions and platelet infusions.  Lara has asked that those of you who are so inclined to please donate blood for those who are so dependent on this life saving gift.

Noah had a MIBG scan last Tuesday and it came out clean so that is very good news.  He is now scheduled for a PET scan for the sixth of October.  They are going to keep doing these scans so that they will always have a comparison after each stage of his protocol.

Once again, I am asking for prayers that Noah's pain soon subsides.  This has to be the worst that he has felt in a very long time and it really needs to end.  He has been enduring incredible pain now for quite some time.  Hopefully, he will start to feel better in a few days.  The doctors seem to think that he should start to feel better by the beginning of next week.  Let' s hope that it happens before that.

I will try and be more faithful to keeping you informed but I have Baby Sean this weekend so I may not have a chance until the beginning of next week.  I'll let you know if anything dramatic happens before that but let's hope that Noah just starts to feel better beginning today.

WIth much love,  Grandma

Out of the Hospital

Noah was discharged from the hospital yesterday and is at home at the house in Tucson.  Lara certainly seemed happy to be out of the hospital.  That was a long stay and she knows it will be even longer next month.  Noah seems to be getting a bit better each day.  His fever is gone and his blood pressure has stabalized.  He seems to have been left with a very itchy rash over most of his head and torso which seems to be both inside and out.  Even the inside of his mouth seems to have this itchy rash.  The end result of this is that Noah has become irritable and who wouldn't be?  Noah will receive his stem cells today and then he can be smelly and itchy.  What a winning combination.  Poor guy !

That's really all that is happening.  Noah is able to walk around a little bit and ate a little bit of bread yesterday and so that's what it's back to.  It seems like it might be a rather slow recovery period but we know that he should start feeling a little bit better each day.  He is tentatively scheduled to go back into the hospital on October 22 for his major stem cell implant.  So, he has about a month to recover before he will have to go back.  And, yes, he will more than likely be in the hospital for Halloween.  That's such a bummer.

It's looking as if Uncle Kevin and Sarah will be flying back to Arizona as early as this coming Tuesday.  Sarah has really been a trooper and likes being with Sean at Auntie's house but I'm sure that she would love to go home and see her Mom, Dad and Noah.  So, that's pretty much what's going on for now.  Uncle Brian called this morning from Germany.  It sounds like he feels he's a plebe back at Annapolis.  They were serious about his having to polish his boots and getting a haircut. 

Much love, Grandma

A Rough Last Couple of Days

Today will be Noah's last day of chemo and not a minute too soon.  This will be the fifth and last day of chemo.  One of the chemicals being used has never been given to Noah in the past and it has proven to take its toll.  The chemicals are being administered for four hours in the morning and Noah started to react negatively to them on both Monday and Tuesday afternoons.   He developed a fever that spiked to 103 degrees and lowered his blood pressure which became a huge concern to the medical staff.  The nausea has once again kicked in as well.  Let's just say that Noah is one very sick little boy.  Fortunately he is being administered a medication for the nausea that is a narcotic and that helps keep him a little "loopy" as Lara would say.  Increasing his intravenous fluids helps to raise his blood pressure and bring down his fever so that he was feeling better by evening and able to sleep.  He also was given a blood transfusion on Tuesday and that seemed to help a little bit.  Only one more day of chemo to go and this round will be over.  He should be discharged from the hospital this evening if everything goes well.  He's scheduled to receive his harvested stem cells on Friday.  Let's just hope that today goes better than Monday and Tuesday.  Obviously, his appetite has disappeared once again and he's not eating but hopefully it will return soon.  It seems as if the only thing Noah has the energy for these days is watching television.  That's when you know that Noah is really not feeling well at all.

Noah has also had another MRI done and the preliminary results are that it's clean.  It appears that the doctors in San Francisco may have been right when they thought it was bone marrow activity that was showing up on the previous scan.  So that is a bright spot that has occured during these past few difficult days.

Fortunately, Grampa and Grandma Georgia have been staying in Tucson for the last couple of days and are there to help. It's so much nicer for Noah to have them with him when Lara goes to take a shower or does something that she needs to do.  It, also, allows Andy to work without having to worry too much about not being able to be with Lara and Noah all of the time. Lara and Andy also get a break from hospital food which gets old really fast. 

Sarah is here with us in California and proves to be a delight as always day after day.  She and Baby Sean spent the night with me last weekend and it was great.  Uncle Brian was home again as well but left on Monday for Germany.  I know how hard it is for him to be so far away when Noah is sick but, hopefully, the next six months will go by quickly and he'll be back to see Noah completely well once again.  Auntie brought the kids to my office yesterday and went to lunch with me and Uncle Kevin.  I just love having Sarah so near.  I know she will be going home soon but I am so happy that she is adjusting so well at Auntie's house.  I will be baby- sitting Sean and Sarah tonight so that Brigit and Jamie can go and celebrate their third wedding anniversary.

Uncle Kevin will be flying to Tucson with Sarah when Noah is feeling well enough.  Kevin will stay in Tucson for as long as the Nelsons are there and help Lara with whatever needs to be done and allow Andy to take any necessary business trips.  So, hopefully, today will go by quickly and Noah will be on his road to recovery very soon. 

So that's the latest and keep Noah in your prayers so that his recovery goes well and quickly.  He's been through so much and still has so much ahead of him.  The chemicals that Noah has been receiving these last two "Mini" Stem Cell Transplants have been five to eight times the intensity of regular chemotherapy.  His next Stem Cell Transplant will be ten times the intensity.  He still always does his part and faces it straight away.   He is my hero.

With much love,   Grandma

Please leave us a message because it's especially fun for Noah when he's in the hospital and not feeling well.   Also, check out the new pictures that Auntie has posted. 

 

Positive Update

Our family visit was absolutely wonderful on all counts.  It was so fun to have everyone home for a few days.  Noah led the way for having the optimal amount of fun for our Sunday spent at Great America.  My four children and three grandchildren were all together for the day.  Unfortunately, both Andy and Jamie had to work and so they couldn't join us.  Great America is a theme park with all of the Nickelodeon characters that Noah and Sarah love.  Sarah met and had her picture taken with the "real" Dora the Explorer and Noah was happy to see both Scooby Doo and Sponge Bob.  Uncle Brian and Uncle Kevin were even able to relive their childhood by riding a couple of roller coasters.  They couldn't convince Noah to join them but Noah took Sarah on the Bumper Cars and that was enough of a thrill for him.  Auntie was even persuasive enough to convince a complete stranger to give Noah a Sonic X doll that he had won playing one of the carnival games.  This doll was as big as Noah and posed an interesting challenge on how to get it back to Arizona on the airplane.  It was a great day because the park wasn't very crowded and the weather was perfect.  It was simply a slice of heaven for Grandma.

Monday was spent up at Auntie's house.  Uncle Jamie took Monday afternoon off from work and was able to take Noah to the movies and a stop at the costume store before they came home.  Tuesday afternoon provided a few hours off for the "Mommies".  Uncle Kevin and I took care of the grandkids so that Lara and Brigit could have a couple of hours to themselves which was spent shopping.  The big day of course was on Wednesday when Lara, Andy and Noah went to see the Neuroblastoma specialist at the University of California San Francisco Children's Hospital.

The doctor in San Francisco is a true clinician who has been treating Neuroblastoma for a study that hasn't changed since 1997.  Lara knew this before meeting with her but knew that her opinion was worth seeking.  Lara was very impressed with the doctor's knowledge of Neuroblastoma because all that she deals with are Neuroblastoma patients and the study of the disease. The doctor in San Francisco was somewhat taken aback by some of the unconventional procedures that Noah has been receiving in Arizona.  It is pretty clear that both Dr. Cohen and Dr. Graham think outside the box and that they prefer to deal with treating the whole patient and not just the disease.  Their focus has always been to keep Noah's life as normal as possible and keeping him out of the hospital as much as possible.  Lara and Andy have always been in agreement with this aspect of Noah's treatment.  The doctor did feel, however, that Noah should continue on with his stem cell transplants and that a wise next course of action would be to go to Sloan Kettering in New York.

Lara, Andy and Noah flew back to Arizona on Wednesday evening and Sarah settled into Auntie's household where she will stay until Noah is well enough after his second "Mini" Stemcell Transplant for her to return home.  Today, Lara received a phone call from the doctor in San Francisco and was told that she had presented all of Noah's scans to a board of doctors comprised from around the Bay Area and it is their opinion that Noah is in COMPLETE REMISSION at this point.  They were convinced that what had shown up on the scans was not a reoccurence of Neuroblastoma but rather bone marrow activity that was caused from Noah receiving the drug Neupogen to increase his white blood cells for stem cell harvest.  A normal white blood count is 2,000 and Noah's was at 17,000 when the MRI scan was done on his leg.  Chemotherapy could also be responsible for something showing up on the MRI.  The doctor has been in touch with both Dr. Cohen and Dr. Graham and has encouraged them to do various scans of Noah's entire body after his second "Mini" Stem Cell Transplant.  Lara has always been pushing for this and is hoping that having a doctor recommend this will do the trick to convince Dr. Graham to follow through with this suggestion.

So, Lara, Andy and Noah are now in Tucson and will be entering the hospital on Friday to begin the second "Mini" Stem Cell Transplant.  There could be far worse side effects from one of the chemicals that will be given to Noah this round.  Please pray that he doesn't develop the allergic reaction that could happen but that he recovers as well and as quickly as he did the last time.  Grampa and Grandma Nelson will be going down on Monday to spend some time with Noah and to help give Lara and Andy a bit of a break.

So that's what's been happening for the past few days.  Again, please pray that Noah's recovery will go easily from this Stem Cell Transplant.  Not once has Noah complained that he has to go back to the hospital.  It seems as if he is willing to undergo what he has to so that he can get it over with and get back to being a kid who has such a fantastic sense of fun.  He really has the best outlook about what is constantly facing him. 

I'm so happy to be able to report such good news about Noah's overall status but please pray that the next few weeks will go smoothly.  It is quite a strain on such a little guy.

With lots of love,    Grandma

An Emotional Roller Coaster

I just spoke to Lara a little bit ago and the MIBG scan has come out completely CLEAN.  I think this is the best news that we have had in a long time.  The MIBG scan is still considered to be the best scan that is done in determining what is actually going on with Noah's battle with his disease.  We were all so depressed after the MRI that was done last Friday that I couldn't even comprehend what was going to happen next.  Lara and Andy have set up an appointment with a pediatric oncologist here in San Francisco who is a  Neuroblastoma expert and who is doing trials with isotopes for patients who have relapsed.  I haven't updated the journal all week because I have been so busy trying to get everything ready for them to move in with me and Uncle Kevin. That was Plan B because the MRI had implied that chemotherapy was no longer being effective and that there would no longer be any point in continuing on with the Stem Cell Implants that were to take place at the University of Arizona in Tucson.

Plan B has now been canceled and we're going back to a modified Plan A.  Lara, Noah and Sarah will still be flying in on Saturday so that they can keep the appointment with the doctor at the University of California San Francisco Hospital.  Andy will fly in to be with Lara and Noah to keep the appointment on Wednesday.  Lara sees no point in canceling the appointment here in San Francisco because she would like to meet with this doctor to have a second opinion and to set up a relationship with her.  You can never have too many specialists involved to help with the decision making process. 

So, what all of this means now is that Noah, Lara and Andy will fly back to Arizona after their appointment so that Noah can go back down to Tucson to resume his protocol.  He will undergo his second "Mini" Stem Cell Transplant at the end of the week.  Sarah will stay here with us in California until Noah is well enough for her to rejoin the family.

All I can do is ask for you to keep those prayers coming because they must be working.  I can't tell you the toll all of these conflicting tests have taken on both Lara and Andy.  Lara told me today that she now knows what it must be like to be bipolar.  The ups and downs have really been painful but their strength just seems to keep going on with incredible fortitude.  The lows are really excrutiating.  We just have to keep positive and keep going forward with this good news.  Noah is the one now who will be put to the test because the next two transplants will not be pleasant for him.  He still seems to accept all of his medical procedures with complete trust that they will make him better.  I think that we all have to follow his lead.

Now the Fitting family is simply making plans to all be together and enjoy the next few days.  It will be so good to have the Nelsons with us.  I'm so happy that Lara is able to be home with all of us for a few days.  Of course, she will really be "freezing" because she has so acclimated to the Arizona weather.  I'm really looking forward to all of us being together because we won't be together for the holidays but rather we'll just be happy being all together for a few days this coming week.  Uncle Brian will be home as well and of course Auntie and her family live nearby so it will be a very full house and nothing warms my heart more than for all of us being together especially when Noah is feeling well.

Keep the prayers coming because there is still a long road ahead but for now I just want to enjoy the time I am about to spend with my family.

With love and happiness,  Grandma

Not Very Good News

I first want to apologize to all of you for taking so long to let you know the result of Noah's MRI that was done today.  It  wasn't until late this afternoon that Lara and Andy heard from Dr. Graham.  It seems as if there is evidence of something showing up on the test.  There even appears to be some new spots that didn't show up on the MIBG scan.  Obviously, we are all in a little bit of shock because it wasn't the news that we were expecting.  We all knew that this was a possiblity because of the results of the last MIBG scan that had shown something but we were all encouraged that nothing showed on the subsequent MRI.  The doctors were hoping that the clean MRI was correct but now something is also showing on the MRI that was done today.

Another MIBG scan is scheduled for next Thursday at Phoenix Children's.  This should give a better idea of what is going on because it is still considered the best diagnostic test done for Neuroblastoma.  Decisions as what to do next will have to wait until after the results of the MIBG scan.  There are various options available in different parts of the country.  Fortunately, Lara has done so much research and has been in contact with Neuroblastoma experts. She may turn to them now for an opinion as to what the next step should be since it appears that Noah is no longer responding to chemotherapy.

After hearing the results, Lara and Andy took Noah and Sarah swimming to the big water slide that Noah loves so much in Tucson.  Noah is just a kid who wants to do fun kid things and he is well enough now to go swimming again.  Yesterday, Noah convinced Lara that he needed to buy his Halloween costume.  Anyone who knows Noah knows how much he loves Halloween and dressing up.  He always starts planning months in advance for what that perfect costume will be.  He's not even sure yet what that might be.  He might have to get another costume just in case this isn't it.  So that's what's going on.  Lara and Andy are just keeping Noah busy and happy with all the fun stuff that he loves to do.

Thanks to all of you for so faithfully following Noah's progress by way of these journals.  I keep asking for prayers and I know that you are all complying with my requests.  Tonight I am asking for prayers once again for Noah but also keep Lara and Andy in your prayers.  They may have some very big decisions to make in the not too distant future.

With much love,   Grandma