Some Days

Some days you sleep too deeply.
The nights of waking up all night for rashes, medication, bathroom breaks, feeding the baby all catch up.
And then for a few days I sleep too deeply and it hurts to wake up.
They say that if you don't get enough sleep it's similar to being under the influence of alcohol.
I will agree with this as I fell into the wall twice while walking with Simon to/from his bedroom during the night.

A kind friend at work is loaning me a very thick yoga mat to take naps on at work if I need to.
I just may have to do that!

Cycle 6 of Simon's chemo is one that we've had before- we knew what was coming.
5 days after chemo Simon spiked a fever.
Any fever over 100.4 for an hour requires a call to the oncologist and 99% of the time an admittance to the hospital.
So we were admitted this last Thursday night around 10pm.  Luckily we got admitted straight to the unit instead of going through the ER which they usually have you do.
Fevers lasted until Saturday night/Sunday morning at 12am.
You can't go home until you go 24 hours without a fever.
Plus he had mouthsores that were making it very unfun for him to eat/drink anything.

Upon admittance he weighed 18.9 kg (41.66 pounds).
We were there until yesterday (Pioneer Day here in Utah) at 2pm and he weighed 18 kg (39.6 pounds).  So in 3 1/2 days our little man who was just starting to put weight back on lost 3 pounds.
Sigh.

You could tell he was really getting sick of the hospital on Sunday/Monday because he kept asking for his sister, to go home, and needing more new toys.

While there I text back/forth with a cancer mom about her boy Ben who is just two treatments ahead of Simon.  We have to be grateful for small things during this.  But sometimes there are big things- Ben gets the mouthsores so horribly.  To the point where he just can't breathe/function like he should.
Please say a prayer for Ben that his bloodcounts can go up fast to help him recover!

And in speaking about bloodcounts Simon is pretty much at 0 for his ANC.  Which means that he is very susceptible to infection right now.  So we're staying put at home with the occasional drive in the car just to get out.  We're thinking about going to a drive-in movie this weekend so he can still have some fun but be safe.

So it'll be a quiet week for us comparatively.
We still have to do IV antibiotics every 8 hours but his neupogen shots.

We are 3 weeks out now from his first admittance for a Stem Cell Transplant.
Getting very nervous for how things will go.
I know he'll be fine but it's still hard when you usually only hear the bad stories.
But all the nurses assure me that SCT are easier than bone marrow transplants since it is your own stem cells.

Life is not predictable nor does it go the way you plan.
Normal is relative and we certainly live a "new normal" now.

6 Cycles

Simon just finished his 6th cycle of chemo last Friday afternoon.

For Neuroblastoma there is a long treatment plan as it's a very difficult cancer to keep from coming back.

So you start with the 6 cycles of chemo (with a surgery after the 5th if there is a solid tumor).
From there you do two stem cell transplants (our first is in less than a month- eek!).
Then radiation if needed (unfortunately we do).
Then immunotherapy which involves a few things that we don't know too much about yet.  

After his surgery in June/July (which I still need to write about!) we were told 95% chance they would not do cycle 6 since they got all of the tumor and his bone marrow is clean.

Well July 10th I got a call that they wanted him in on the 12th for cycle 6.

With cancer you don't always know the next steps.  You have an idea.
But when you are told one thing and it changes last minute- your heart either gets broken or you can be elated.  Needless to say we were heartbroken over this.
Cycle 6 is the same as Cycle 4 and cycle 4 gave Simon mouthsores HORRIBLY to the point where he was getting IV nutrition.  He lost so much weight.

He hasn't had the mouthsores yet thank goodness but we are being overly cautious just in case.
However he has now developed a sensitivity to his antibiotic.  Developing a rash all over his torso, neck, head, and down below.  He has been miserable the last three nights, itching all night.
But he is off the antibiotic now so hopefully it can start clearing up.  

But we are now also in prep mode for the stem cell transplants.
This involves a lot of testing.
CT Scan, Echo/EKG, MIBG scan, hearing tests, psych evaluation, bone marrow aspirates, etc.
We actually have all those scheduled right now and are waiting on more.
There's a lot of prep that goes into making sure he is ready for the transplant.
It's not easy on his body.

He will go in on day -7.  He has about 4-5 days of chemo to knock out his immune system.
Then a couple days of rest.
Then it's day 1.
This is referred to as an "Autologous" transplant since he's getting his own stem cells back, rather than getting cells of a donor, which greatly reduces the risk of things like graft vs. host disease. Stem cells are given to him intravenously like other meds, and is fairly uneventful considering what's happening. It doesn't require an operation or any other major undertaking like an organ transplant. Once he gets his stem cells, he should start recovering fairly quickly, within a couple weeks, pending any issues. During that two week period however while his body is still trying to recover, he'll in all likelihood contract mucositis and other irritations, which will make him absolutely miserable. Also, because his immune system will be so severely compromised from the high dose chemo, he won't be allowed to leave his room. He can have visitors if circumstances are met, but he will be stuck in his room for the duration of his stay. This will also be very hard on Simon. A month in a little hospital room will seem like years to a three year old. Once he finally gets through all that and recovers, he'll be discharged and be home for a couple weeks before going right back in to do it all over again. Studies have shown that two transplants are significantly greater than just doing one in terms of his prognosis. So when all is said and done, he'll be in the hospital for 4 weeks give or take, home for two weeks, then back in the hospital for another 4 weeks for the second transplant. Not going to be a fun filled summer. He'll get different chemo meds during the second transplant, which have different side effects.

The last explanation I want to mention is why Simon can't go to kindergarten next year. The transplants wipe out Simon's immune system. I mean completely wipe it out, including all his immunizations. He will have less of an immune system than a newborn baby. Even babies have some of their mother's immune system cells, which Simon won't have. He will be highly vulnerable to illness and will have to get all his immunizations over again over a special time period. Because of his immune system being so compromised, he will quite literally be isolated at home for the first 100 days after the second transplant, except for when he goes back to the hospital for his immunotherapy each month. After 100 days, assuming all is well, he'll be able to go to uncrowded places wearing a heavy mask until six months after his transplants. So that rules out school until after March or April but at that point he'll just start getting his immunizations again, so he couldn't attend school until he's current with those. This has been confusing for some who want to still visit- but honestly we want him to get better.  We don't want setbacks.  So please respect during this time that it's not you, it's us.  We're protecting our child.

So Simon is set to go in on August 16th for day -7.
We aren't sure how we're going to figure this out as that starts the busy season for me at work and Caleb starts school the week after.  It's going to be busy but worth it.

We continue to feel humbled and overwhelmed by the love and support we are receiving!  We really have no way of paying everyone back but I hope once this is over that we can do more service for others.
We feel so blessed during this time by others gift of time!