Friday, September 1, 2017

Day 9 Post Transplant

This is my first full day back at work in a while.
Simon and I needed a day apart- as I told him last night when I left we are TOO much alike.
And he told me that is cause he loves me :)  Heartbreaker.

August 29 I received a call from Caleb that Simon was on oxygen overnight as his blood/oxygen levels would drop when he was relaxed.  I got to the hospital and found out he also had fluid in his lungs and throughout his body.  Luckily we got the fluid taken care of fast.

Fevers were all over the place but are gone now.

Mouthsores got really bad but even before engraftment they are tons better!

He's starting to drink a bit.
Has a little more energy.

I love that he's feeling better but dread the next stem cell transplant.
I have only heard horrible things

Thursday, August 17, 2017

Stem Cell Transplant, day -7

Yesterday was day -7 (negative) for his stem cell transplant.
6 days of 2 chemos (1 for the first 4 days, 1 for the last 3 days).

I spent the day with him up at the hospital.
I came home last night and got Meg ready for bed- I looked at Simon's bed and thought "he's not going to sleep in this bed for a month."
That was a hard hit.
Then waking up this morning he usually comes out of his room when I'm getting ready for work and just hugs me and says "hi mama."
He wasn't there this morning.

Now I've had lots of mornings throughout the cancer treatments that he's not there.
But knowing that it'll be about a month- it breaks my heart.

Knowing I will only see my husband a couple hours every 2 days and maybe a full day here and there as people volunteer to stay with Simon- it's depressing.

Finding out new side effects that the chemo gives him- maddening.

Why are we using chemicals developed during WW II for weapons to help our children survive cancer?
Why is so little research being done (other than the lack of funds to do so)?

This morning my heart aches for my son and all other children/families going through this.
None of it is fair.

Tuesday, July 25, 2017

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.

Wednesday, July 19, 2017

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!

Wednesday, June 14, 2017

It has been very hard for me to put things down in writing on what is going on.
Usually I have no problem with writing out my thoughts but it's hard to put into written words what your child and family are going through.
As my work has slowed down for the summer I am going to try and write more.

Simon finished his 5th round of chemo the day before Memorial Day.
And we moved the next day into my parents.

We took him home still accessed so we could do IV fluids at night to stave off the dehydration he had from the last time he had this same chemo- very nauseous times.

He had a blood/platelet transfusion a week later as his counts had dropped quite low.
Then he had another transfusion June 9th.
After that transfusion we have a new kiddo.

He has been trying to show us he can run (which he never has before so we're still working on him having the muscle tone and ability to run fast.  Right now it's just a cute fast walk of lots of arms and legs moving).
His energy is so high, he's sleeping great, and as always we're trying to fatten him up.

But we don't have to do anymore shots of neupogen (to increase his white blood cell count) or labs until July- yes!

And we have a surgery date.  June 28th.
Caleb and I both are anxious (as in anxiety-ridden), scared, and trying to keep ourselves busy and not think about it too much.

It is interesting that he'll have almost an identical scar to his dad's where we always just knew he wouldn't- being the healthy child without a genetic disorder and all that.
Kinda ironic and not so cool.

But we hope to make the best of the next couple weeks- swimming, getting some good pictures of my baby without a scar, playing, going to our family ranch and getting dirty.

Life is always taking some new/unique twists and turns for us.
I wish I could say I was bored- cause boring is safe.

Thursday, May 18, 2017

Things are great

I need to start writing more but my heart just can't handle it written down- it's like it almost makes it too real.




Simon was in the hospital last week for neutropenic fever and mouth/throat sores.
you can see in the above pictures as he went in (May 6th for the first two photos), May 9, May 10- he started feeling a lot better!

We were released on Thursday on the promise that we would make sure he is taking in enough fluids at home without IV fluids.

It was rough Thursday night-Saturday.
Thursday night was my brother's wedding dinner so Simon was with my in-laws who don't push him as hard as us (they're grandparents- they get to be nice :)).
Then Friday was the wedding/reception so we still weren't with him a lot.
But Saturday I was with him all day and we got a lot more fluids/food in him and he started acting better.
Saturday night was a cousin's birthday party and Simon hasn't been able to play with them in months.  But finally his counts/energy were high enough!

Then Sunday was mother's day.  We had a late night the night before so we did skip church.
I wanted to go but would have also been sad to not see Simon up on the stand singing to the moms with the other kids.

But we had a relaxing afternoon.
Went to my parents for an early dinner where Simon (and Meg) got to play with a cousin again.

And that night back to the in-laws for mother's day dessert.

Simon had so much fun with all the cousins over the weekend!
His energy has been SO high that it's fun to see him in no pain at all, eating everything (seriously, almost a full bag of starburst!), and playing.

He's sleeping better (only gets up once or twice wanting me to go cuddle with him), eating better, happier, and it's just amazing to see!

I feel awful he's going back for a scan next Tuesday and chemo #5 on Wednesday.
This one should cause a lot of nausea so we're going to really try and combat that early with extra fluids and extra anti-nausea so he doesn't lose as much weight as last time (he still hasn't gained it all back so we don't want more gone!).

My brother got him this shirt- Simon hated that it said chemo but thought it was cool how people reacted to the shirt

Simon has been selected as the "prince" for Millie's Princess Foundation.  This is an amazing foundation that is doing a fun run and more to help two families every year with the financial burden that childhood cancer can bring.  We are so excited that he gets to be the prince with Princess Mazy!

I am working to get a logo done to make t-shirts for the Fun Run and also for supporters/fundraisers.

My family had a yard sale three weeks ago and then our ward did one last weekend for Simon and a couple other families.  They went so well!
We stopped by the ward yard sale so they could see how well he was doing.




This last picture is from chemo #4, April 25th- but I just love this picture of him!


Thursday, March 9, 2017

Lost

I did myself thinking throughout the day about what I can write.
The realities of cancer?
Comic relief? Hair falling out, funny new food desires, new phrases....

But it all disappears when I have time to write.
I don't know how to start.
I don't want to start writing about this.