1516 Days

I feel the need to start updating more on Simon and how life is going.

Today is 1516 days since diagnosis day.

1378 days of No Evidence of Disease.

1273 since his first stem cell (bone marrow) transplant.

So we’re just over 4 years out from diagnosis. Almost 3 years of being done with treatment.

We had to start Simon on therapy and medication for anxiety/PTSD/medical trauma just over a year ago.

With the recent horrible news of his friend dying and another friend relapsing he has been struggling.
A lot.
To the point where we’re increasing therapy and increasing his medication so he can cope.
Any change to plans or how the day is going sets him off.

I’ve been trying to find a job, and thought I found a good one yesterday, and he had a full meltdown today that he doesn’t see me enough as it is.

He’s sleeping better. Eating better. But still says “I had cancer, it’s hard for me to do things”
“If I don’t tell people I had cancer, they won’t know I’m a real warrior/the real batman”

The emotional aspect is so hard with after treatment.
Now with scans in a few weeks we also need to see a urologist to check on some concerning things.
He has only grown a half inch in 18 months.
He was predicted to be 6’3″ and now might make it to 5’5″ thanks to the radiation and treatment.

And yes, I keep hearing “at least he’s alive.”
AND I AM GRATEFUL. It’s just hard to live with the after effects of what we had to do to his body to keep him alive.
He’s been tortured more than most adults ever will be in their lives.
And it’s just hard.
It’s hard to watch him struggle, it’s hard to see changes, it’s hard to watch the post-treatment effects.

He’s still so sweet and wants cuddles all of the time.
He’s doing so well in school and loves his friends (even says he has a girlfriend?).

I need to pray harder to handle things better.
I need to be more patient with him.
He’s a genuine angel who didn’t deserve this.

Being a Parent

I grew up in a very idillic environment.

I have five siblings and we build lego houses for our micromachines, used binders taped together for barbie houses, clipped cards onto our bike spokes, and played in irrigation water during the summer.

My mom was blessed to be home with us while my dad worked from home. We took great local vacations, went camping a lot, and had amazing snow and water fights.

The only things we had to deal with were older family members dying, my brothers having asthma, and me being very accident prone.

I had no idea how hard parenthood could be as my parents made it look easy.

But then they never had to deal with what I’ve come to realize exists.

I’ve known more kids dying of cancer and accidents since Simon was diagnosed than in the 34 years prior.

My heart is just aching for the losses. The pain. The stress that comes with the financial burden of trying to save your children.

As we say goodbye to an dear friend today I explain to my children, who are 3 & 7, why this happens.

Sweet Simon says – it will be OK. She’ll go to heaven, see her Heavenly Father, then the resurrection will happen and we’ll see her again. And we have the Holy Ghost here to comfort us.

The sweet strong testimony from the mouth of a child.

1st Grade and 1 year out of treatment

Right after Simon went to Camp Hobe- we moved to the valley that Camp Hobe is in!

Moving into our first home has been dreamy.
We lived with family all throughout treatment and it was a blessing to have so much help and love surrounding us.

We also had 1 year post treatment scans the week after we moved.
He is still no evidence of disease, marking him at 2 years cancer free!

He does have some lingering effects- still muscle weakness in his legs. HIGH anxiety. And some PTSD over certain things.

But he is thriving. He loves 1st grade and the new neighbor has SO many boys his age.
He is above his grade reading level and is right on for math (though he doesn’t have the patience for it).

At the 1 year scans we were told that although we were promised we’d go to every 6 months for testing/scans we are going to stay at every 3 months going forward. There have been a lot of CNS (central nervous system) relapses noted and they want to stay on top of anything if something were to come back.

This is also our first appointment with the bone marrow team since finishing treatment- they like to follow up every year.

So the next post should be after the next scans!

Camp Hobe 2019

Simon was able to attend Camp Hobe in Utah a week ago.

This camp is specifically for cancer kiddos and their siblings.

I was afraid Simon would be emotional about me leaving but he just waved goodbye.

He LOVED the zip line, the giant rope swing, swimming (which they keep the pool at 90 degrees for these kids), the games, etc.

He went for two days but not overnight.
He’s super excited for going overnight next year!

Tons of pictures!
The hats he is wearing were made for the kids to wear to protect them from the sun or for warmth.  Neither of which he needed but the kid loves hats!

Diagnosis Day – 2 years later

Two years ago today.

Our hearts were broken yet strengthened.
Our souls were crushed yet soothed.

We were grateful for answers.
Grateful for a plan for our son.

Hurt. Crumbling. I felt like I lost all feeling in my limbs.
I didn’t eat all day.
A sister in law brought us Arby’s
I still don’t like going there anymore.

I assume I pumped milk for Meg – but I don’t remember.

I have regrets about that day. Not getting to the hospital sooner. Not being there to be told.
I was told on the phone that Simon had cancer. They weren’t sure what kind but it was bad.

I arrived at the hospital after many people.
I was told not to drive as I couldn’t feel my arms.

Simon had no clue. He just knew he had a new truck with a trailer and horses. Tons of new hot wheels. Could order any food he wanted.

He just wanted that needle out of his hand and to go home.

We were scared to go home.
We had only heard stories of mostly leukemia where you start treatment immediately.
But they sent us home that day to return in about two weeks to start treatment.

We didn’t announce to anyone except family and very close friends and our work places.
We weren’t ready for the barrage of questions and concerns.

So we went home and cuddled closer.
Holding each other as one was stronger when the other was weaker.

We are not celebrating today but just commemorating the day our lives changed forever.

We are so grateful of the miracle Simon is.
Our Heavenly Father has blessed us, held us, and loves us so much.

#warriorsimon #diagnosisday #childhoodcancerawareness #alwayshugginggeorgie

Make a Wish

I’m working from home today.
I’ll leave in 5 minutes to pick up Simon from school.
Meg is still napping (2 hours now?  Weird…).

And I got a call.

We knew our wish had been granted but we didn’t know when we would go on Simon’s Make a Wish trip.

But we have dates now! And flight times!
I can’t wait to go tell Simon on the walk home from school. 🙂

Currently (will catch up later)

I haven’t been writing as much about our warrior since we finished treatment.
I have been trying to focus on our “new life” and how to cope.

Currently Simon is in kindergarten and loves it.
He is freaky amazing at math (like his 9 year old niece taught him his 2x’s tables last week and he learned it like it was nothing).
He’s working on learning to read and really wants to learn.

However he is struggling physically.
All the months of being in bed, especially the 2nd stem cell transplant, left him very weak on his right side. Particularly his right leg.
He can’t run. He thinks he can but his 2 year old sister is much fast than him (and me as well but she’s just Meg).

We’ve had some amazing things happen since June- Simon went in the ocean his first time (but only for a second as he didn’t like it), played in the sand, went camping and got his first stitches from an accident (tripped over a rock and hit a rock), got a new bike and LOVES it though it’s hard for him to ride.

He started physical therapy and has improved in the strength of his ankles they were very loose and bent the wrong way. We’re still working on that right leg and he’s very determined to get stronger.

My heart just aches though sometimes. There was a fun run at school last week and I knew I needed to be there. So I took the day off, put Meg in the double stroller, and followed from a distance.
Then I heard him. Crying, yelling- wait for me!
My heart broke.
I ran up to him, put him in the stroller, and told him we’d catch up. We took a short cut and made it to the finish line. He ran through the finish line and was so excited.
But then he was anxious and down for the rest of the day.
I don’t blame him. They should have had someone running with him, pulling up the back. Good thing I was there as he needed his mom for comfort.

He gets tired easily but keeps trying to do everything.
He’s really into Legos lately and building his own things.

His great-grandma died a few months ago and he built her grave out of legos… a bit morbid but he did a good job! 🙂

We have scans and tests coming up next week and the following two weeks.
I just pray they all come back clean.

Round 5 of Immunotherapy and End of Treatment

We went into round 5 knowing it’s one of the “easier” ones to do since they don’t add the IL-2 infusion.

Simon did great- in fact it was the first time he didn’t need oxygen overnight for immunotherapy!

We made sure to take extra pictures with people, do all the crafts and playroom things we could do.

One day Irish said Simon could pick any prize he wanted.
Amongst all the Hot Wheels (which he loves) was a nail polish kit.
He chose it! Then he proceeded to paint my nails and Irish’s and we said it was in honor of our friend Courtney who was in TN on a trial. 🙂

I swear we’ve played every game they have in the unit for X Box 360 that is appropriate for Simon. Yet every day he would ask to go see if there were games he hadn’t played. We never found a new one but he loved just getting out.

Every day he asked for a slushy. They don’t allow the slushy machine in the unit because you would have to clean it SO often to get rid of anything that could contaminate it. But he had some great nurses who would go down to the surgical unit and get him one 🙂 And always the wish for an orange one but they all taste good.

On his last day he had his line removed in surgery. Normally they can pull them out but he’d had his for a year and they were worried about his body having grown around it. Surgery went great!
We got to keep the “clamps” from the line since the rest had chemo through it.

Then at 3pm that day all of our family (and some friends) came to the unit and Simon rang the end of treatment bell! He was so excited and so full of energy despite having been under anesthesia that day.

We had chocolate Dunford Donuts for a treat of course. The boy loves them!
Then we went home, unloaded a bit, and went to Black Bear Diner for a celebratory dinner.
And we had the best waitress who happens to be a family friend/neighbor.

So many posters, gifts, big smiles that day.
It took us longer to get there than we thought but WE MADE IT!

Time Between Course 4 and 5

Withdrawal from the meds for round 4 was a bit better. It didn’t seem to last as long and he got his appetite and energy back fast.

So we made good use of the energy!

We went to our first rodeo and Simon loved it! This was courtesy of the Mascot Miracle Foundation.

The next week we went to the Hogle Zoo after hours courtesy of the Mascot Miracle Foundation again. That was amazing! The dinner was provided by the local Chick-fil-A’s which was fun because we have friends that own and manage a couple of the locations. So we got to catch up with them.
Then the animals were much more alert due to it being cooler (75 degrees!). One of the lioness’s even saw Meg and ran over to her and wanted to “play.”

We’ve done some bike rides, played t-ball, soccer, gone to our family ranch, played on playgrounds, walked to the kindergarten doors a few times so he knows where it is, and just trying to fill our time with fun.

We made chocolate chip cookies, an ultimate fort, and Simon has learned to love board games. When he won LIFE and became a millionaire he told me “don’t worry mama, you can visit me in my lobby.”

We

are currently on day 3 of 5 for immunotherapy/anitbody (ch 14.18) for round 5.
That means we are two days away from our last day inpatient (prayerfully/hopefully) ever again!

Simon had his central line (double lumen/hickman) placed on June 28th, 2017 when he had his resection (tumor removal) surgery. He is having it removed June 15th, 2018. Almost one year of having a central line (he had a single port before).

Because of the time the line has been in his body they are worried about the line coming out smoothly. Normally this is done in their room but their concern is that he has never had problems- so it could have fibrous material attached to it. So just in case they are going to remove it in the OR. We had scheduled his “ringing the bell” at 3pm but may have to move that depending on when the surgery is.

But Simon is SO excited to get his line out.
When he says his prayers at night he usually says a quick one.
But the other night he said he was thankful to get his line out so he can go swimming, take baths, and go to the beach in a few weeks 🙂 Silly boy.

Currently we are sitting in his room playing classic Sonic the Hedgehog Games. I will try to film him cause he gets so into the games with chatting during it and sound effects.

I

 

t’s been a fun week taking pictures with nurses, saying goodbye to some people, and being able to go out and about with no restrictions. It’s also been relatively “quiet” in the unit meaning not many rooms are full. I love looking at the board and seeing it less than half full!

Meg came up yesterday and we took her to get her labs done- they still look fantastic. Her medicine is doing exactly what it needs to and you would never know she has anything wrong with her.

Life

feels pretty…. good right now. It’s weird to say that. We will never have our normal back again but we really appreciate all the amazing blessings, miracles, and friends and family that we never could have before.

Final IL-2 Infusion, start of Round 4

Early last week I had finally had enough of waiting- waiting for Simon’s eyes to go back to normal, waiting and doing nothing treatment-wise.

So I nagged the team and we decided to start round 4.

I hooked up Simon’s pump this past Monday (May 7th) and we started the IL-2.

The IL-2 basically helps the antibody (ch14.18) be stronger to help the body attack the neuroblastoma cells. Because it increases his white blood cells he gets more achy. A tired, flu-like, achiness.

We’re on day 3 and he seems to be doing okay. Definitely a bit more tired but not enough to slow him down during the day.

He has discovered a LOVE for board games over the last week. It’s been fun playing Life, Dinosaur World (a game my grandparents gave me when I was about 8 that you create a new dinosaur species), and others with him. In Life he won and was a millionaire. He told me “Don’t worry Mama, you can visit me in my lobby.”

We have been trying to do some more fun things before we are inpatient again.

We went to the zoo a couple weeks ago (somehow in Utah, in April, it was 86 degrees!).

This weekend we are going away for a few days to a local resort. It’s supposed to be colder, around 50 degrees, but we plan on just hanging out, not doing every day stuff, playing board games, and maybe do a bit of summer clothes shopping. Simon has grown SO tall that a lot of his shirts fit around his skinny body but show his tummy.
Same with Meg except she isn’t skinny- 95th percentile for her weight. My chunker 🙂

So things are going in the right direction for now.
We are finishing the immunotherapy because we would rather say we did all the treatment that to finish early and relapse happening then blame ourselves.

But relapse WILL NOT happen.
Simon has too much to do.
He’s too stubborn, too sassy- to allow it.