Noah Nelson

Back to Scottsdale

The family packed up and went back to Scottsdale this afternoon for a couple of days.  They will have to go back to Tucson on Thursday so that Noah can have his MRI on Friday.  Sarah kept asking to go home so they decided that it would be nice to be home for a couple of days.  This way Sarah can attend pre-school on both Tuesday and Thursday.  She was able to meet her teachers but wasn't able to attend actual class so tomorrow will be her official first day of school.

As it turns out Noah ended up having an infusion of platelets on Sunday but all of his counts are on the rise and Dr. Graham gave his okay for them to go home for a few days.  It will be nice to have the break from the hospital and be at home.  I'm sure that it will be nice for Andy to be able to work in his comfortable office with all of its working office equipment rather than having to work without even a reliable telephone in Tuscon.

Noah is continuing to do well but once again I'm asking for prayers that the MRI being done on Friday will show no evidence of Neuroblastoma.  Noah will then have to go back to Phoenix to have the MIBG scan done again. Dr. Graham doesn't expect the scans to be any different.  He's planning for the second "mini" stem cell transplant to be scheduled for the fourteenth of September.  So, hopefully, all that Noah has ahead of him for the next couple of weeks are tests and scans. 

I hope the family enjoys their few days at home.  I saw on the news today that Phoenix is suppose to be 111 degrees tomorrow.  I hope those temperatures don't last too long.  It's been so nice to be in the cooler weather of Tucson. They have been able to go up to Mount Lemon on the week-ends and really enjoy some much cooler weather so I hope the heat isn't too disagreeable.  Of course Lara was "freezing" in Tucson when I was staying with them and she kept wanting to turn the air conditioning down so I'm sure that they will all be just fine.

That's about it for now.  I only briefly spoke to Lara so I'll let you know more later.

Much love,  Grandma

Thanks so much for the great response after the last journal.  It really is fun to see who it is that 's reading the journals and I really encourage all of you to leave us a message. 

A Happy Family

Lara just called to tell me that Noah had just been to the hospital and that all of his blood counts have stabalized and appear to be on the rebound.  This is really great news because it has only been ten days since he received his stem cells and that is the minimum that it would take for his counts to stabalize.  He won't need any more transfusions or platelet infusions as a result.  This means that Noah should be able to be in public again pretty soon as well.

They seem to have settled into their new house in Tucson.  It sounds as if this house is going to work out perfectly for them.  It's big enough for everyone to have a little space to themselves but not too big for Lara to maintain.  The really good thing, too, is that the owners of the house will let them keep a dog there.  Yesterday, Lara's two good friends, Amy and Christine Kingsley drove down and brought Maggie down to stay with them.  Obviously, that made Noah very happy.  Both Noah and Maggie were really happy to see each other. Uncle Brian was able to get the cable connections up and running for both television and computers.  The only drawback is that they can't seem to receive a very good cell phone connection there.  They will have to get a land line up and running for Andy to work from home.

Andy returned from his business trip last night and so as Noah would like to say the whole "Happy Family" is there and are starting to settle in.  Kiley (Baby sitter since Noah was born) is in Tucson this week-end and she will be by to see Noah.  Noah and Sarah truly love Kiley and that will make Noah happy as well. Uncle Brian leaves tomorrow but I think that he will be able to leave knowing that everything is pretty well done to have the Nelsons settled in Tucson.  Brian is being transferred to Germany and this is the last that he will see Noah for quite some time.  I'm really glad that he had this opportunity to spend such quality time with Noah before he has to leave.

The best news of course is that Noah is recovering from his "mini" stemcell transplant.  Lara said this morning that she won't have to worry so much about him now and that is always a good thing.

Thank you for all of those prayers.  Keep them coming because they seem to be being answered.  We still need to pray that all of the scans and tests that are coming up will be free of Neuroblastoma.

With much love and gratitude,   Grandma

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All is Well

I'm sorry that I haven't updated you for a few days but I've been busy here at home and at the office after being away for two weeks.  Noah is really doing well to the point that I think Dr. Graham is very pleased.  We were beginning to question if Noah really received the chemicals that his protocol required but Dr. Graham did assure us that they were given to him.  Noah's counts have dropped to all time lows and he has so far received two platelet infusions and one blood transfusion.  Lara commented today that she thinks that this is the best that Noah has felt in at least six months.

It was really difficult to say good-by to Noah and his family but I wasn't feeling too guilty because I knew that Uncle Brian would be arriving the next day.  Lara has said that Brian has been an incredible help because both kids absolutely adore him and he manages to keep them both entertained and happy.  I asked Lara yesterday how Noah was doing and she said that Noah was fine but that Brian was exhasuted.  It's really been helpful for Lara because Brian has been going to the clinic with Noah and stays with him when he gets his platelet infusion or transfusion.  Brian also took the kids to an outdoor restaurant last night so that both Noah could get out and Lara and Andy could sneak out on a "date".

It's really good that Brian is there because Andy had to leave today to go on a business trip for a few days.  The Nelsons will be moving to their more permanent house in Tucson on Friday and Brian will be able to help Lara with the "move" as well.  A few of you have asked for the Tucson address and it will be as follows:  6186 North Placita Pajaro, Tucson, AZ  85718.

So that's about it for now.  We knew that this "mini" stem cell transplant would have the least side effects of the three but we are all surprised at how well Noah is doing.  You have to remember that the chemicals used were five times the intensity of his regular rounds of chemotherapy.  I guess that it must have been a good thing that he had so many stem cells harvested so that they could be implanted to help him recover so well and so quickly.  The last that I heard Noah was up to forty-four pounds so that he really is starting to look more like himself as well. 

Please keep Noah in your prayers because we are still praying that all of the tests and scans done after this procedure will be Neuroblastoma free.  He still has a long road ahead of him but there are a lot of procedures behind him now.  Let's pray that he will feel as well as he does now when everything is behind him.

With lots of love,   Grandma

P.S.  A thanks to Amy for the great dinner she sent down last week.  It was yummy.

Not Much Going On

There's really not much going on here.  Noah's counts are dropping rapidly now.  His white blood cells are almost nonexistent and his hemoglobin is getting really low.  Noah is doing fine and seems to have bursts of energy but is sleeping more now than he usually does.  Sleep is a good healing mechanism and there's nothing wrong with his doing that.  His platelets are still holding up pretty well and that surprises Dr. Graham.  Tomorrow will tell more about what is going on and if he'll need a transfusion or not.  The surprisingly good thing is that he still has an appetite.  He's up to forty-two pounds again and so he is looking really good.

Today was just a regular day and that's probably how things will go for the next week to ten days.  A visit to the clinic to see Dr. Graham for his blood count testing and for meds or whatever needs to be done that day.  The house that we are staying in now is just temporary and the Nelsons will be moving on Thursday to the house that they plan on staying in for the duration of their stay in Tucson.  Apparently there was a mix up with the mail being delivered here.  The mailman rang the doorbell to see if there was someone living here by the name of Nelson because mail was being sent back.  The post office had been told that no one was living here.  A package did get delivered here today.  So our apologies to anyone that had something returned to them.  I will let you know what the new address is going to be as soon as I get it from Lara.

So that's about it.  I go home tomorrow night and I doubt that I will get a journal done then.  I will try to get information after I get home to keep everyone updated but obviously it's easier to know what's going on when I'm here.  It's really a wait and see situation now until Noah's counts all come back so that they can determine what will happen next.

Don't forget to say a little prayer for Noah so that his next round of tests and scans will all be free of Neuroblastoma. Pray that he can proceed with his protocol and that it will all be successful.

Much love,  Grandma

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Another Good Day

The test results from a urine analysis that was done ten days ago to determine if there were any Neuroblastoma cells in Noah's body came back negative today.  Obviously this is really good news but the mystery of why the MIBG scan came back with something is still just that.  Lara asked Dr. Graham today what this all means and he said that he just keeps scratching his head.  The one possibility for the postive showing on the MIBG scan is that there is still a leision on Noah's leg that the isotope attached itself to and therefore there was no evidence of a tumor when the subsequent MRI test was done.  Hopefully we will know more when future scans are done after Noah recovers from this stem cell implant.

Noah went for his daily blood count tests today and they are dropping but haven't bottomed out yet.  Dr. Graham seems to think that he will need platelets by the weekend.  Sarah and I returned to Tucson this afternoon after she and her friend Payton went to meet their pre-school teachers.  It was really fun for Sarah. I especially enjoyed when Sarah picked up a toy iron in the play kitchen and asked what it was.  Trust me she hasn't spent enough time with me or she would know what it was.  I told her teachers that Sarah would be at school when she was in Scottsdale but I couldn't tell them when that might be.  It is so wonderful of Casa to be so understanding and allow Sarah to come to school only when she can.  We were talking to Noah this evening and he said that he too would like to go back in few months when he is feeling well enough to attend school.  Noah should be starting kindergarten this week but his birthday is in June so he won't be that much older than many in his class next year.  So, attending pre-school again for another year when he's feeling up to it should work out just fine.

I'm also happy to report that Noah no longer smells badly.  I guess that Sarah and I are lucky that we missed out on that special treat.  The smell according to Andy and Lara was really nasty. I had said last night that the odor was caused from the chemotherapy but Lara said that it's from a chemical that is added to the stem cells themselves and not from the chemotherapy.   Noah is still eating which is pretty unusual with his counts dropping but his mom is still willing to fix whatever it is he feels like eating.  The other good thing is that his itchy rash is disappearing so it must have been from the antibiotic as they suspected.

I would have to say that our little boy is doing much better than any of us expected.  It's just so great to be able to see him everyday and to see him look and behave like himself.  I know that he's going to lose his energy very soon but hopefully he will pick it up just as he has every other time.

That's it for now and I'll let you know how things go tomorrow.

Much love,  Grandma

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Stem Cell Infusion

Today Noah received his stem cells and all went well.  Lara said it was pretty anticlimactic.  There's been such buildup to this procedure that everyone was prepared for it being really trauamatic but Noah seemed to be able to handle the procedure pretty well.  The stem cells were infused through his tubies so no needles or anesthetic.  I think after everything that Noah has been through that everyone is always expecting the worst.  It just wasn't that bad this time.  Lara said that the one really horrible side effect is that Noah smells really badly but that should go away in about twenty-four hours.  This is caused from the chemo that is left in his body starts to come through his pores.  His body didn't reject the cells and if there was going to be a problem that would usually take place during infusion.  The one bad thing that Noah experienced during infusion is that  he could taste the chemicals when he was being infused and that was starting to make him sick to his stomach.

The other thing that they decided is that Noah's skin rash is probably being caused from the antibiotic that he's been taking.  It is a penicillin derivitive and they changed him to another antibiotic so that the rash should clear up once that medicine is out of his system. It is such a common problem to develop an allergic reaction to penicillin. Fortunately, there are other antibiotics to choose from but now they will always have to keep him away from penicillin drugs.

Sarah and I came up to Scottsdale this morning and Sarah seems really tired so we had a very quiet day with her taking a long nap and going to bed early tonight.  She goes to meet her teacher tomorrow at pre-school.  We will drive back down to Tucson tomorrow so that she can be with her family again.  She will attend pre-school whenever she's in Scottsdale.  It's just not too clear how much she will be here over the course of the next few months.

So that's about it for now.  Noah goes back to the doctor's tomorrow to have all of his counts checked but he should be in pretty good shape over the weekend.  The stem cells should help him to recover pretty quickly.  He is doing better than we expected him to be doing.  We are very grateful for that.  Let's just hope that things keep going like this for a long time.  It's hard to believe that so much has happened in such a short period of time.  Six rounds of chemo, three surgeries and now one mini stem cell rescue is behind him.  There's a long, long way to go but a lot is behind him now as well.

As always keep praying because we need those prayers to keep coming and we do appreciate them.

Much love,  Grandma

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What a Busy Day

Noah developed an itchy red rash over most of his torso after he went to bed last night.  Apparently he didn't sleep very well at all because of the rash and consequently neither did Lara.  They came into my room at about 6:30 this morning for a second opinion.  We were most concerned that it might be Shingles again like he had after round four of chemo.  Neither of us thought that it was but Lara called Dr. Graham's office.  They said for Lara to give him Benadryl to help with the itchiness and for Lara to bring him in at nine.  We were right and it is just an itchy rash and why he has it is hard to say.  He could be having a reaction to most any of the medicines.  They prescribed another antihystemine that is really helping and that doesn't make him sleep all the time.

Sarah and I went on a shopping mission while Lara and Noah went to the doctor's.  Our favorite past time.  A nurse inadvertantly grabbed a plastic bag of Noah's dirty laundry and threw it away the last time Noah was in the hospital.  Sarah and I have been shopping for new summer pajamas ever since.  Today was finally a success.  We were able to find both Sonic X and YuGiOh pajamas.  I was so excited when I found them because I knew Noah would love them and he did.  It's so easy to make Noah happy with the simplest things.  It really is one of the things that I love most about him.

So much for Noah's day off.  The visiting nurse was here for most of the afternoon showing Lara how to administer all of the medications that Noah needs to be getting.  The medication is really pretty much the same that he's been getting all along but because he has received so much chemo, the counter balancing medications have to be increased as well.  Noah has to be hooked up to a pump with one of the meds for three hours.  One of the others is put in through his tubies just like always but has to be timed so that he is only getting one tenth of the dosage timed at one minute intervals.  The nurse warned Lara not to give it any faster because if she does Noah would be able to taste it and it tastes like gasoline.  Can you even imagine?

Noah is feeling pretty good considering everything he has been through but he does take up all of Lara's day all day long.  The good and bad news is that he is wanting to eat a little something about every hour.  This alone takes up so much time and is constantly creating a mess that needs to be cleaned up.  Lara's patience with Noah is extraordinary.  The two of us never seem to stop.  I try to help with everyday stuff like laundry, dishes, running errands and trying to keep Miss Sarah happy.  Of course when Lara has a free minute she is trying to give Sarah as much attention as she can.  Lara's day is seriously eighteen hours long everyday.  When she has nights like last night there is no beginning or end to her day. 

So even though we couldn't be happier about how well Noah is doing, it is no bed of roses for his parents.  There is always something to remember to do.  Noah's teeth have to be cleaned several times a day, his tubies have to be flushed out, his dressing needs to be changed on his venous catheter and the list goes on and on.  Caring for a cancer patient is a lot of hard work.  And this is when he's feeling well.

Tomorrow morning begins the stem cell infusion. Noah will not be allowed in public from now until his counts come back up.  I'm not sure how long that will be but I think I heard something about anywhere from ten days to three weeks.  He will go to the doctor's everyday to be monitored from here on out.  Andy returned back to Tucson tonight after a very long day working in Scottsdale.  He will join Noah and Lara for the procedure tomorrow morning.  Sarah and I will head back to Scottsdale so that she can meet her pre-school teachers on Thursday.  I will bring Sarah back after the meeting and will stay in Tucson until I have to fly home from Phoenix on Saturday evening.

That's the plan for now but you never know when things are going to change.  Never a dull moment in the Nelson household but I can't think of any place that I'd rather be right now.  It's really going to be hard to leave.  Grandma has to figure out how she can retire so that she can spend as much time with her darlings as she wants.  I'm afraid retirement is still quite a few years away but how I wish I could have more time with these little guys.  I love every minute that I'm here.

As always, keep Noah in your prayers.  Tomorrow is a really big day.

With lots of love,  Grandma

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Another Change of Plans

Sarah and I are now in Tucson and Andy went back to Scottsdale.  Last night Lara called and said that Noah is really missing Sarah and would I mind driving down and staying a couple of days.  You don't have to ask me twice if I'd like to spend time with Noah.  Sarah and I left this morning.  It took a little longer than it should have because of my keen sense of direction but we eventually made it.  At least we were here in time to greet Noah after he was discharged from the hospital.

Right now, Noah is doing amazingly and surprisingly well.  His energy is up and he's eating very well.  I had to make a run to the grocery store this evening to get a couple of special requests.  Cheetos and salsa?  I've learned not to question these requests anymore.  He had a hearty dinner before this as well.  His dietary requirements from now on are quite strict.  It has nothing to do with nutrition but rather with any possible contamination.  Anything raw is pretty much out in the vegetable  and fruit area.  It's like being in Mexico but even stricter.  Anything that he hasn't finished eating immediately has to be thrown away.  Meat has to be thawed in the refrigerator and completely cooked through. The list just goes on and on.

Tomorrow is a day off for him except for a visiting nurse will be coming by to instruct Lara on how to administer all of the various medications that will be required.  On Wednesday afternoon, he will begin having his stem cells infused.  I think that this is suppose to take about three hours or so.  Once again, Nurse Lara will be stepping up to the plate to see that all of the medical requirements are met.  Another very important aspect of his care will be both personal and environmental hygiene.  If we thought we should buy stock in Lysol  and Purell before, it's nothing compared to what it's going to be now.

So really that's all I know for now.  Nothing about future plans will  be known until he recovers from this stem cell rescue and all of the scans are done once again.  They are hoping that will give them a better perspective on how to proceed.

Keep praying because that's what is needed.  Thanks again for being so faithful to the website and I will let you know if there are yet any other changes.  But for now our sweet boy seems to be doing okay and let's hope that everything keeps going as such.

Much love,  Grandma

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Tucson Update

Noah is now half way through his intense chemotherapy and seems to be enduring it remarkably well.  The chemicals used this time shouldn't make him too sick but will take his blood counts down to almost nothing.  He's still able to eat and so that's always a good thing.  Yesterday afternoon was probably the worst so far in that he had a terrible headache.  Fortunately they were able to give him Tylenol and Benadryl and he finally went to sleep.  Today he was sitting up in bed and kept busy watching videos and playing video games.

The atmosphere in Tucson is much different than in Phoenix because it isn't a Children's Hospital and the children aren't allowed to play together or to socialize.  There isn't much of a playroom and no one seems to frequent it.  Another little Neuroblastoma patient last Fall requested that the Home version of the TV show Extreme Make Over redo the pediatric ward at the U of A Hospital.  The good news is that Disney came in and did a lot of sprucing up of the place.  Noah's room is decorated with a Buzz Lightyear theme.   Anyone who knew Noah when he was younger must remember how obsessed Noah was with Buzz for a very long time.  He has long since outgrown that as being something that he's interested in but it does seem rather appropriate.

The one thing that Noah was happy about is that he has access to a Play Station II which is a dream come true for him.  Lara can't believe the difference in nurse to patient ratio.  The nurse in Tucson is only responsible for two patients.  A far cry from the overworked nurses at Phoenix Children's.  The other nice thing is that the rooms are private rooms and Noah and whichever parent is staying with him aren't awakened in the night by having a roommate who might not be on the same sleeping schedule.  The other nice thing is that there is a cot rather than a chair for the parent to sleep.

We still have no news about any of the conflicting scans because it is the weekend and Lara hasn't heard from Dr. Graham. She hopes that she will hear something from him on Monday. She isn't sure how long the stay will be in Tucson.  It will be somewhere between ten days to three weeks.  So,  I haven't anything too much to report other than so far Noah is fairing pretty well considering the circumstances.  Grampa and Grandma Georgia are going down tomorrow and so maybe they will have something more to report when they get back.  It's hard to have a grasp as to what's going on when we're communicating by phone.

That's the latest and I'll let you know about anything else of interest that I hear about in the near future.

Much love,  Grandma

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No Idea What Will Happen

My apologies to all of you who so faithfully read the website and that I have not been keeping you up to date.  I hadn't seen Noah in almost two months and I had never been around him when he was feeling well.  I was determined to spend some quality time with him before he had to begin his mini stem cell rescue and I did.  It is so hard for me to be so far away.  The only times I was here prior to now was when he was going through chemo and was really sick from its after effects.  We really had a fun time together and he has been my main focus.  I hated to have to leave him today in Tucson but I brought Sarah back to Scottsdale so that Lara and Andy could concentrate on just Noah for the next week.

I am grateful to Brigit for updating the last journal entry because I know how much time it takes to do a journal.  We always try to get all of our medical facts straight as to not misinform all of you.  Neither of us has any kind of medical background so that we rely on Lara for our information.  I can assure you that this week has been such a mixed bag of information that we weren't sure what to write.

Most of what Brigit put in her journal is true but the doctors never used the word "relapse" but that was what was alluded to so that was our greatest fear.   All of this began Monday evening when Noah was having a sleep over with his two good buds Curtis and Colin.   Dr. Graham called Lara to tell her that he was very concerned about the MIBG scans because there had been no evidence of Neuroblastoma on the second scan and there was on the third.  The problem was that the radiologist in Phoenix who had read the third MIBG scan was only comparing it to the first scan and thought that all that was so showing up were residual cells.  That would not have been such a big deal.  The fact that the second scan was clean and the third wasn't meant to the doctors that Noah was becoming resistant to chemo.  If that were the case then going through stem cell rescue wouldn't be effective in of itself.  Dr. Graham then said that maybe they would have to try to do a combination of radiation, chemo and accutane simutaneously.  Lara knew enough about all of these different treatments that Noah's body would never be able to sustain these all at once.

Monday night was crazy.  I still wasn't sure what Lara was trying to tell me but all I knew was that there were four little kids here having a great time with the big sleep over and Lara was at her computer or on the phone.  I also forgot to mention that Andy was in Orlando for his company's annual meeting.  He is having to attend meetings, trying to close deals because he knows Tucson is coming up and Lara calling him to tell him that everything scheduled for Noah is falling apart.  I can't even imagine what he was going through.  He must have thought that he was in the middle of a nightmare and only if it had been.  This was his reality. 

By Tuesday evening, Lara spoke to Dr. Graham and told him that she wanted as many opinions as could be obtained before any drastic decisions were made.  They both agreed that more testing had to be done before they could proceed with anything.  The other thing that came to light on Tuesday that was a mystery was why when three "hot spots" had shown up on the PET scan but not the one that showed up on the third MIGB scan.  The simple answer to that was that Noah's legs hadn't been scanned in the PET scan.  Yes, it is all very crazy and very confusing so that is why Lara is now saying no one knows for sure what will happen.

What everyone agreed to is that more tests were done today.  Both an MRI and a CT scan were done and no evidence of a tumor showed up on the MRI.  The preliminary results of the CT scan were negative as well.  This has pleased the doctors but no one really knows what all this means.  Why something showed up on the MIBG scan and on nothing else is still the great mystery.

Noah was admitted to UofA Hospital today and will begin his mini stem cell rescue tomorrow.  If nothing else this buys time for at least four weeks to form back up plans if they are needed.  Noah will be receiving the same chemicals used in past chemo therapies for four days but at five times the intensity that he received in the past.  Next Thursday, he will receive the stem cells that were harvested from him and then frozen.  He will then be allowed to leave the hospital and will be living in the house that the family rented in Tucson.  He will be monitored everyday for three weeks after that as an out patient.  This is so that he will get the usual transfusions, platelets and various medications that are needed on a day to day basis.

I would have to say that the most hopeful thing that we've heard all week is that the MRI came up clean.  But we still don't know exactly what any or all of this means.  Another round of scans and tests will be ordered after Noah recovers from his mini stem cell rescue.  Hopefully, we will have a better and completely positive outcome at that time.  Needless to say we have all been on an emotional roller coaster all this week.  We thought we knew what we were in for but we hadn't a clue.

As always, I am asking for prayers.  Pray that Noah's little body isn't resistent to the chemo and that the next scans will all be clean.  And say a prayer of thanks that the MRI was clean today.  Remember to pray that Lara and Andy keep up their incredible strength and wisdom to keep Noah going forward.

Much love, Grandma