Noah Nelson

A Rough Day

Today was suppose to be the turning point for things getting better but that didn't happen.  Noah was at clinic for about ten hours today.  They gave him all kinds of different medicines, a transfusion and platelets.  Something caused his fever to spike and for him to start shaking. They think that it might have been the anti-pneumonia medication but they're not sure of the cause. He's still getting sick to his stomach several times a day and that just contributes to his overall not feeling well.  His counts still aren't in normal range and thus the necessity for platelets and transfusions.  He still is receiving the blood thinners but they say that they will stop them tomorrow.  Let's hope that they do.  This could be contributing to the nausea and for the necessity of receiving platelets almost everyday.  The nutritionist would like to see Noah start to eat so that they could stop the total parenteral nutrition (TPN).  I think everyone would like to see that happen but most especially Noah. It sounds as if he's pretty well fed up with not feeling well at this point and tired of being a good sport about everything.  Who could blame him?  It must be so discouraging for him not to feel better yet.  He's been feeling rotten for a very long time now.

Lara asked me to let you know that December is Neuroblastoma month.  The Lunch for Life Program will be donating all funds collected to Neuroblastoma research.  This is obviously a very important program that is near and dear to all of our hearts.  As you know there is still no cure for Neuroblastoma and research is the most important thing for all Neuroblastoma families.  The website for this organization is www.lunchforlife.org  if you're interested in learning more about the program. The other thing that I've been asked to remind you about is the Coyote Hockey Game that is coming up in January.  This too will be a fund raiser for Neuroblastoma research.  You can get more information about this event by clicking onto the title "Purchase Your Tickets Today" that is located to the right of this journal.  It would be so wonderful to have some type of breakthrough for this horrible disease that is so underfunded in comparison to other forms of cancer research.

Keep Noah in your prayers.  Tomorrow just has to be better than today.

Much love,   Grandma

A Very Slow Recovery

I felt very guilty when Lara asked me this evening if I had checked the website lately and I said that I hadn't.  I felt even more guilty when I checked and saw that the last entry had forty-one messages.  I knew that I hadn't updated since I was home for the Thanksgiving weekend but I didn't realize that I hadn't updated since last Monday.  I do send my apologies.

The last week in Tucson has been very similar each day.  Noah goes to clinic at the hospital every morning with either Lara or Andy.  He has been receiving platelets just about everyday.  This means that they spend the better part of the day at the hospital.  He will be receiving both a blood transfusion and platelets tomorrow.  The veno-occlusive disease (VOD) has really slowed his recovery.  It has affected his liver, pancreas and gall bladder.  The treatment for VOD requires that he be given blood thinners and that creates the necessity of receiving platelets on an almost daily basis.  Fortunately, Noah had a mild case of VOD and his elevated hepatic counts have been on the decline continusously but they are coming down very slowly.  The doctors have decided to treat this complication very conservatively and to monitor Noah very closely.  Noah is still experiencing the ever present nausea.  It seems to get better sometimes but never really goes away.

Wednesday will be day thirty since chemo ended and the doctors seem to think that should be a turning point.  They have told Lara and Andy that Noah will have to be in Tucson for at least another ten days.  The family would be back in Scottsdale by now if the VOD hadn't materialized but this complication has necessitated the stay in Tucson to be extended.  This has delayed the trip to Sloan Kettering in New York by a week as well.  Lara had hoped to go the first week in December but it will have to be delayed until the second week.

Noah has made his big purchase with all the cash that he earned while in the hospital.  He is now the proud owner of a game cube.  I wonder if Uncle Kevin (the video game champion of all time) may have had any influence on that decision?  Lara is pleased, however, because Kevin can keep Noah entertained by playing with him when Noah is feeling well enough to play.  Noah is making a very slow recovery but it is steady and is usually going forward in a positive direction.  Hopefully, Wednesday will truly be the turning point as the doctors predict.

Sarah is happy to be with her family again but wants everyone to stay home and stop going to the hospital everyday.  I saw Baby Sean today but I think we will have to stop calling him baby now that he's celebrated his first birthday.  He seems to be missing Sarah.  I think he would have been very happy to have her with him always.  I know that I miss her.  I have to confess that I loved having Sarah so nearby.  I really looked forward to having her spend the weekends with me at my house. 

I want to thank everyone for their prayers because they are being answered.  Please continue to include Noah in your prayers because he is still very sick.  He is better than he was last week and that was better than the previous week. Noah really needs to start feeling better soon because he needs to get back to being a fun loving little five year old who doesn't have to spend the bulk of his day at the hospital. He needs to master that game cube so that he can beat Uncle Kevin. We really thought that he would be feeling better by now but are grateful that the VOD never progressed any further.

Again my apologies for not updating before now but the week got away from me.

With much love,  Grandma

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Home at Last

Sorry I haven't updated the journal for a couple of days but there have been so many ups and downs that I didn't even know what to write.  Apparently whatever it is that has caused all of the havoc has gone from Noah's lungs, to his liver and then to his pancreas and gall bladder.  Fortunately, even though Noah's counts are still high, they did stablalize or come down a bit and he no longer needs morphine.  So,the doctors decided to let Noah go home to the house in Tucson since there wasn't anything that needed to be done that couldn't be done as an outpatient.  I think Lara thought she was breaking out.  Four weeks in one room must have been suffocating.

Kevin and Sarah flew in on Saturday night so they were the ones who went and picked up Lara and Noah from the hospital this afternoon.  Andy had to go out of town on business but will be home soon so that all of the Nelsons will be living together under one roof again.

My complete gratitude to all of you who so faithfully follow Noah's progress from these journals.  I must say that this has been the scariest and most worrisome thing that I have ever experienced.  I can't imagine what it must have been like for Lara and Andy to be there day in and day out to watch their child go through the pain and suffering that Noah has experienced.  The best thing now is that most of the terrible side effects from such intense chemotherapy is almost behind him.  He's not feeling great but better than a week ago and next week better than now.  What all of us have been dreading for months is almost over.

Thank you for all the prayers and outpouring of love and concern.  I probably won't be updating everyday now that Noah is going home.  It's time to give the Nelsons a little privacy and time to themselves.  If anything changes I will of course let you know.

Much love, Grandma

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Marginally Better

Noah is hopefully on the road to recovery.  He wants to go home and so he's being totally cooperative with everything that he has to do.  He was having regular breathing treatments even all through the night but Dr. Graham has cut back on them.  His counts are coming down.  Most importantly his liver counts are down slightly.  At least they are going in the right direction.  They are continually doing viral and bacterial tests but so far they have all been negative.  Dr. Graham seems to think that Noah might be ready to go to the house in Tucson on Monday if things keep going as they are.

Recovery is going slowly but at least it has begun.  It appears as if all of the scary stuff is behind him now.  Every morning Lara asks Noah if he's feeling "yucky" and for the first time his response was "no".  That has to be a good sign.  One of the things that everyone finds amusing is that Noah's new favorite television show is "The Price is Right".  The thing that's so funny about this is that it was my kids' favorite television show. They always had to watch it during the summer when they were home during the day.  It must be genetic.  I don't get it but I've learned not to question these things.  I'm sure all the cousins will get a chuckle out of it as well.

That's about it for now.  Lara has now begun to think about the next step and has started scheduling going to New York.  Pray that Noah gets well enough quickly to keep going on with his protocol.  There's still a great deal that he has to face but no more chemotherapy ever again. Hooray!

Much love,   Grandma 

Good News & Bad News

The bad news is that Noah has developed a touch of pneumonia in his right lung.  They think that it has developed because of all of the fluid that Noah has been retaining and that he has been lying on his right side when he watches television.  He has been put on a new antibiotic and has had his diuretics doubled to try and reduce more of the fluid in his body.  The doctor also had his room reconfigured so that the television is on his left side.  Noah has had tests done for both viral and bacteria infection.  He's going to have breathing treatments again which he hasn't had to have for months but they do help to break up the congestion.

The good news is far better.  Noah has really perked up today.  He's talking more and he even tried a bite of bread and a few sips of root beer.  This is huge.  Our entreprenurial five year old turned down a cash offer yesterday to try and eat something.  His platelets had stabalized as of this morning but were being retested this evening.   He was walking the halls today and has done everything that has been asked of him with far less opposition than what took place over the past few days.  His liver counts have stabalized and that's probably the most important thing of all.  It is now thought that some of this has to be contributed to the fact that his white blood cell count is at thirty thousand and a normal count would be closer to five thousand.  There is a lot going on in that little body.  All of the stem cells that were transplanted are engrafting like crazy and this is what will help to heal Noah but it also seems to cause a great deal of havoc in the process.  The nausea is still there but it must be diminishing slowly because of his willingness to at least try and eat something.  Recovery seems to be going very slowly but at least it appears to be starting.

I hope and pray that all of the scary news is behind us now and that each day will only show improvement.  I know how scary having a child in the hospital with pneumonia can be but it seems so inconsequential after everything else Noah has been through.  Pneumonia can still be a scary thing and I ask for prayers that it clears up quickly and that Noah will be on a constant upswing from now on out.

I want to thank all of you for checking the website so faithfully these past months and for your love, support and prayers.  I hope that I only have good news to report from this time forward.

Much love,  Grandma

A Sigh of Relief for Now

I talked to Lara very early this morning and she told me that Noah's liver counts were up a bit higher from yesterday (2.5 from 2.0 on average) and she wasn't sure what Dr. Graham would make of it.  It seemed that Noah had now developed both a cough and fever.  There seemed to be a more growing concern over these new symptoms than with the liver counts.  Dr. Graham ordered another chest   X-Ray and we waited for hours for the result but it showed no signs of pneumonia. So that is really a huge relief.  Dr. Graham also feels that Noah may have a very mild case of VOD but that some of these symptoms could also be caused from the TPN (Total Parenteral Nutrition).

Noah doesn't have pneumonia but there is still fluid in his lungs and walking really helps reduce that fluid. They made Noah walk a little while ago and Lara couldn't believe how winded Noah was after only two laps down the hall. He did sit out in the hall for about two hours and that has to help as well.  Noah has oxygen going most of the time especially when he's sleeping.  They would like to take him off the TPN as well to see if things improve but he needs to start eating before that can be done.  They are slowly but surely reducing or eliminating as many medications as possible.  So, Noah is still very sick and I can't stress how sick he still is. Things just seem a bit less critical today than they have been and so the endless waiting seems to be having some closure.  Tomorrow will be day fourteen from when chemotherapy ended and maybe it will be the turning point for recovery and all of this really scary stuff will be behind us.

Lara just told me that they've been in the hospital for twenty-two days and she is ready to go home even if it is just to the house in Tucson.  I asked how much longer their stay will be and she said that it could end as soon as this Friday or two weeks from then.  Noah is still getting platelets daily and she's sure that Dr. Graham won't discharge him until he's no longer platelet dependent and until his liver counts start going back down to a more normal level.

My everlasting gratitude for all of the prayers that have been said over the last few days.  Keep it up because it appears as if they are being answered.

Much love,  Grandma

P.S.  Lara's laptop has broken and so she has no computer access while in the hospital.  This is really a bummer because this is a lifeline for her.  Her computer needs to be sent back to the manufacturer to be repaired so she will have limited access to email and such.

At A Loss For Words

Many of you have left notes saying that you didn't know what to say after reading the last journals and that's how I've been feeling for days as well.  I just don't know what to say.  Lara sounds so tired and down when I talk to her and I don't even know what to say to her.  Noah's liver counts were higher again this morning than they were yesterday.  Dr. Graham is saying that they are still not high enough to be considered veno-occlusive disease (VOD).  Then at other times he will talk about how they will treat the VOD so it is very confusing.  Noah has gained four pounds as well and that's without having eaten anything in weeks so all of this combined is very worrisome.  The mucositis seems to be getting somewhat better and they are starting to wean him from the morphine.  The nausea is still in full force but hopefully that will end soon.  Today is day twelve since the conclusion of chemotherapy and the nausea should end by day fourteen.  Noah's white counts are coming up by leaps and bounds.  Let's just hope that they help him heal quickly.  I'll let you know if anything else happens but for now we're still in a waiting mode.

Sarah had a good birthday because Auntie had a very nice birthday brunch for her and Sean yesterday. Many thanks to the entire Nevin family who were so generous and inclusive of Sarah.  Thanks for making Sarah's birthday so special.

Lara and Andy have decided that they want Sarah back in Tucson with them.  Kevin and Sarah will be flying back to Arizona this coming Saturday. 

Love,  Grandma

Patience and Waiting

I just spoke to Lara and Noah's liver counts on average are just about the same as they were yesterday.  It's just a matter of waiting now to see what does or doesn't improve.  His white blood cell count is still coming up a bit so let's hope that's a good sign.  I really don't know anything more than that because I spoke to Lara very briefly.  She said that Andy thinks that Noah seems better to him than he did yesterday but Lara sees no difference.  She had only been there for a couple of hours so she'll wait to see if she really sees any signs of improvement. Lara had to get off the phone because Noah had agreed to get out of bed to take a walk.  She did say that Noah's mouth sores did look very much better to her but he still needs morphine for his throat.  All we can do now is wait and pray that the VOD doesn't develop.  I'll let you know if anything else happens today but for now I think that waiting is going to be the name of the game.  One of the nurses said to Lara today that the waiting can be the worst part for the parents. 

Much love,  Grandma

A Scary Day

Noah is now suffering from complications that result from high dose chemotherapy.  Gastric and hepatic diseases are frequent complications that occur after stem cell transplant.  The first is the mucositis which presents itself as sores throughout the gastrointestinal tract and seems to be now showing up in his stomach.  Noah has been on both intravenous morphine and total parenteral nutrition (TPN) for days for the mucositis.  The mucositis began as mouth sores, then esophagitis (soreness when swallowing) and now onto stomach ulcers.  The other complication from transplant that the doctors are concerned about is veno-occlusive disease (VOD) of the liver.  This is characterized by elevated enzyme counts and an elevated concentration of billirubin.  The normal enzyme count is between eight and forty-five.  Noah's is at one hundred, forty-five.  An enlarged and inflamed liver along with fluid retention are other symptoms of this disease.  Noah was given an ultrasound of his liver this afternoon and it appeared to be normal. They will be monitoring him very closely because of both his elevated counts and his severe fluid retention. VOD a is very dangerous complication and one that we hope does not develop.  Noah' s chest X-ray yesterday showed that Noah has fluid in his lungs as well.  He hasn't developed pnemonia but there is some fluid which requires Noah to still have oxygen to help him breathe.  Nausea has once again hit because it is at its worse at seven to fourteen days from when chemo ends and he's right at that point.  Sloughing has also begun which I won't even explain but is another very unpleasant side effect.

It appears that we are once again on that emotional roller coaster that we'd all rather get off.  Please pray that VOD doesn't develop.  This is a very dangerous complication and one we'd rather not think about much less worry about anymore.

Much love,  Grandma

A Mixed Bag

I'm sorry that I didn't write a journal yesterday but I wasn't quite sure what to write.  Noah is really very sick and yet his doctors are almost giddy with delight about his recovery.  Yesterday, his fever would go up and they would increase his morphine so that he could tolerate swallowing Tylenol to get his fever under control.  He keeps getting very bloated and so they give him diuretics to deplete the fluids that he's retaining.  He had a terrible night because he couldn't breathe and had to be given oxygen.  The reason the doctors are so happy is because Noah is producing his own blood cells with the help of medication called Nupregin.  His white count went from zero to four in one day. This is what's causing such havoc on his body because things are happening so fast.  Noah truly will be on the road to recovery once his white count comes up to a normal level.  This is why the doctors are so delighted.  Noah is going up for a chest x-ray soon just to make sure that his lungs are okay but they suspect that they are.  Both his kidney and liver function tests are coming out normal so there's no problem with any of his vital organs.

Pray that Noah's misery ends soon.  He's been through enough.  The best at how I can sum all of this up is that the short term for our poor little Noah is really horrific but it will be over soon if the doctors are right.  I'll let you know if I find out anything more that is significant.  Otherwise, just know that things are pretty intense for the moment but will hopefully be turning around before too long.

Love,  Grandma