End of Radiation

Yesterday, January 2, 2018, was Simon’s last day of radiation.

It felt like we should have had a party but it’s also the beginning of something else.

The radiation team at Huntsman was fantastic!  We love Steve who always knew how to be funny and pick the best music.

Simon was great with radiation- never complained, was very relaxed.

I brought Meg with me to the last treatment.  She had never seen the room and was very concerned about what they were doing with Simon.  She kept saying his name over and over.

Then when we went to the waiting room and I shut the door Meg got super emotional and started sobbing about leaving Simon. I think she thought we really left him forever.  It’s sad but kinda cute.

Simon got a hot wheels car, blanket, and a blue certificate of completion.  Of course the certificate was his favorite part.

Radiation did mean a very busy Christmas break for us.  Every weekday morning except New Years Day and Christmas Day we had an early appointment.  So we never got to sleep-in during the break but we’re glad to have it.

Caleb starts school on January 8th.  We’re excited that he only has 3 semesters left but it’s going to be a ROUGH semester.  Simon has intense treatment with immunotherapy, Caleb will be at school 3 days/week, work 3 days/week and just have Sundays at home.

I’ll still be working as much as I can to pay for our insurance.
My work has been absolutely fabulous to give me a job that doesn’t require as much (even though I am BORED most of the time).  They donated 52 days of PTO to me last year.  I had 23 of my own.  So 75 PTO days and I still ran out.  Such is a cancer parent life….

Now I am writing this January 4th.  🙂
We went to clinic today.  Simon’s platelets are finally recovering on their own, his ANC is not SUPER high but it’s good.
His white blood cells look great.
His liver numbers are finally normal.

I was told today his scans will probably be next week.
Scanxiety is in full effect!  The same week Caleb starts school.

Life is always busy and we’re grateful to all be home right now!
Meg keeps ALL OF US busy.  The girls always has a bruise, has a conversation going, is running, eating, or climbing something.  Such the opposite of Simon at this age.

Thank you to everyone who has helped us.  Anywhere from listening to me, to babysitting, to meals, to encouragement, and to the smiles.  I LOVE the smiles at church.  It’s been a long time since we were in a ward for so long and it’s been wonderful to get to know so many people.

Our Heavenly Father continues to understand, love, and bless us.
I am so thankful that Simon has not had any infections.  We are so blessed!
May 2018 be a MUCH better year.  PLEASE.  🙂

 

 

Radiation 6/12

Today is radiation #6 out of 12.

Halfway through already. 
He looks skinny in this picture but he’s sucking in 🙂 

Every Friday he gets to pick a prize from a treasure chest. They’re really good prizes. What did he pick? A solar  dancing flower.  Funny kid.

Radiation hasn’t been too bad. He gets a little nauseated for a couple hours after. Since he had to get up early he’s pretty tired. He sure fights it though and has had lots of energy.

After the appointment today we are going to City Creek to visit Santa. We’ll be the first ones there (courtesy of Millies Princess Foundation) so it should be safe for Simon. He’s already seen Santa but Meg hasn’t and she is SO obsessed with Santa.

It’s been a rough couple days in the cancer world as we lost a dear friend, Oliver, and my co-workers daughter’s cancer has  doubled in the last couple weeks. I hate this cancer world. It sucks. But we’ll keep fighting, lobbying for better care, and loving those around us.

Merry Christmas!

Radiation Ride Begins

We met with the radiology team at Huntsman Cancer Institute today.
Simon will do 12 rounds of radiation starting next week. Each round is a half hour dose.

This week he’ll have a chest CT to map out where they’ll radiate. He’ll also have about 3 tiny dot tattoos placed on his chest so they can line up the equipment perfectly each time.

Yes these are permanent tattoos.
Yes we’ll probably draw them into something cooler like a Batman🦇 symbol (temporarily, he’s 5). 😉

This is 5 days /week putting him done with radiation on Dec 27th (roundabout, the holiday 🎄 may throw it off).

Then he’ll get about a 2 week break before they start full body scans and tests to make sure he’s still NED (no evidence of disease, similar to remission).

And that’s how we’ll end 2017 and start 2018.
Crazy busy but it’ll be nice to be home and no inpatient stays for another month or so

What makes a stem cell transplant different?

There’s been a lot of confusion on the difference between a stem cell transplant, a bone marrow transplant, and an organ transplant.  I want to explain it a bit from a patient’s perspective rather than a medical answer 🙂

Whether you hear someone talking about a “stem cell transplant” or a “bone marrow transplant,” they are still referring to stem cell transplantation. The only difference is where in the body the transplanted stem cells came from. The transplants themselves are the same.

First, the most commonly heard of is a bone marrow transplant when it comes to cancer.
A bone marrow transplant is donated stem cells from someone’s bone marrow.  So it still looks like a bag of blood (slightly different in color usually) and it is usually more painful for the giver than the receiver.

Bone Marrow Transplants can treat:

  • Blood cancers like leukemia or lymphoma
  • Bone marrow diseases like aplastic anemia
  • Other immune system or genetic diseases like sickle cell disease

Image to know what bone marrow is:

bone marrow

A stem cell transplant can be donated or autoglamus (from yourself).

In Simon’s case it is autoglamus.
Back in about April Simon had stem cells extracted through a large artery in his thigh over about an 18 hour period.  It was awful, he had to be sedated, could not move even to go to the bathroom.
They were able to extract enough for 3 transplants though he would only need 1.

stem cell

For either a stem cell or bone marrow transplant you get VERY HEAVY doses of chemo from day negative 7 (day 0 is when you get the infusion of cells).

The chemo basically has 2 jobs:

  • kill off any remaining cancer cells
  • wipe out your immune system

It sucks.  it sucks BIG time.  You usually still feel pretty good on day 0 when you get the infusion of these cells.  But within a day or 2 your blood counts drop and you are VERY prone to infections, mouth sores, etc.

Then you wait.  You wait to engraft.  Engraftment is when your body accepts the new cells.  This means your ANC  has hit 500.

Then for 100 days post transplant you are basically in quarantine you have NO immune system.  Less than a newborn as all your immunizations have been wiped out.  A newborn at least has some protection from its mothers blood.

You have to wear a very heavy, anti-viral, mask outside the home or when visitors are over.

An organ transplant you start taking immunosuppressants after to help against rejection.

The same with bone marrow transplants (though eventually you can get off them).

But with an organ transplant you STILL HAVE AN IMMUNE SYSTEM.

It’s just suppressed.  So you do have to be careful to not be around people who are sick.  But you still have those immunizations.

 

I’m trying to make this very clear for those who have not been understanding.
Yes Simon is feeling great.  Any of us would be feeling great being home and getting energy back.
Yes we took Simon to a Christmas party for it was for CANCER FAMILIES and no one would dare bring anyone sick there.

This Christmas season we are being overly cautious.  It is RSV, cold, flu, and yucky other stuff season.  Any fever Simon gets- he’s in the hospital.  Any cold he gets could go south VERY quickly.  We are trying to save his life, not make him anti-social.
We are trying to keep our son healthy, not make enemies or to use as an excuse to not go out.

Our priority in life right now is to keep Simon (and Meg as well) healthy, safe, and with us on this earth longer than their parents.

We love everyone and do wish it was different- we don’t LIKE missing out on things.
We are learning to enjoy the small things with our little family.

 

 

50 Days Post SCT

Yesterday was 50 days post Stem Cell Transplant #2 for Simon.

I know I haven’t written much since but we’ve had amazing things happen.
Interesting how you write about the bad stuff but when good things happen- you try to just enjoy them and do nothing else but that.

November 4th is where I left off- I went to work for a bit.  But that night went to visit Simon and gave him a Pez from our dear friend D.  He smiled so big!  Still a tired boy but getting a bit better.

November 5th I took Meg to her 1 year appointment.  She is doing great!  Then I brought her back to play with Simon for a bit.

Simon’s nurse gave him h


er Batman flashlight that day.  He was grinning all day every time he saw it.  She was an angel needed that day 🙂

November 6th Simon started eating a tiny bit and was definitely getting more energy.

November 7th- we had a light show in his room with finger lights.

November 8th- after a long wait at the hospital we were home just after 4pm!

The primary had decorated our whole street in Batman posters, yellow balloons, and even the front yard.  I had to wake up Simon when we got on the street as he was exhausted.

November 9th he got take a bath with his sister.  They were both grinning so much and so excited to be together again at home.

November 10-27 Simon had appointments in clinic Monday, Wednesday, Friday.  His platelets were really struggling to recover but we’re finally at a point where he doesn’t need the transfusions.

One of the nurses laughed when I asked around November 15th if we could take him off the TPN nutrition.  But to prove it to her- we asked the doctors 2 days later and they did!  Thank goodness as we could all finally get some sleep as Simon would be up all night needing to use the bathroom.

We had him sleeping in our room so that he wouldn’t wake Meg up all night.
Cause once Meg is up she wants to party!

He is still sleeping in our room because I think it gives him comfort.  We bought a child sized air mattress and it’s been working well.
But tonight (since dad and I both don’t work tomorrow) we are going to transition back to his room.  Wish us luck!

Last night Simon got to go out for the first time to something real (not just the gas station or car wash where he didn’t get to go out).

We went to the Millie’s Princess Foundation Christmas Party.
Simon was VERY overwhelmed and wouldn’t let go of me.  Until he talked to Santa that is.  But right after he had a meltdown and we didn’t get to stay very long.  But it was fun to see the Flamm’s parents house, finally meet some of the families we have talked online with for months, and see so many kids doing so well.  Simon said when we got home “Next time we go out can we go somewhere quiet?” Guess he doesn’t have much hearing loss! 🙂

We were met with some sad news this morning as a new friend, Sarah, has had some major setbacks and is in surgery today to remove some of her brain tumor.  Please pray for sweet Sarah and her family!  They are such faithful strong people.

Tomorrow we are going to take Simon to a matinee of CoCo.  He’s been loving the previews and we believe he deserves to go do something normal finally.  He’s still wearing his mask out and about or when people visit.  I even had to make his mask a bit bigger cause he keeps GROWING.  I went through his clothes a few weeks ago and almost nothing fits 🙂  I’m glad he’s still growing so healthy and strong.

His eyebrows and eyelashes are coming back in now.  And coming in a nice brown like his dad’s!  His hair is slowly coming in too but looks very blonde still.

He has so much energy now and his sister feeds off it.  They are exhausting us but it’s been so much fun!

We have a consult with radiation on December 4th to see what the plan is for that.

 

On November 26th we had an awesome surprise for Simon- Ray Fisher from The Justice League movie came to meet him at our house!

We had to add 2 inches in the sides and 3 inches in the length to Simon’s costume to make sure it fit.  We told him Josh Rossi was just coming to do more pictures.

After Josh set up suddenly the doorbell rang.  At first Simon hid int he living room and we said he was in his bat cave.  But then he came out and was so silly and quiet.

He and Ray did an awesome pose- I’m sure Josh got a clearer picture.

 

They chatted for a bit and opened some presents together

Then they signed their own posters together.
And Ray caught Meg having her batteries in her mouth so he saved her life.

They played with the toys together and chatted some more.

 

Then we did a few family photos.  It was really such a fun experience!  Ray can join our family anytime, he was so nice!  We really appreciate Warner Brothers making this happen.  Simon may not know what it means now but it’s a great memory for him to talk about someday.

 

 

Diagnosis Day Picture 

I’m sitting in Simon’s hospital room right now, going through old pictures.

This is him the day of diagnosis, the worst day of my life.  He looks so sweet. So comfortable. Unaware of what we’d be going through. I miss his sweet innocence. 

I miss my nativity to the childhood cancer world. 

Join Our Army

I stole this from another cancer mom’s site

I imagine having an army behind me helping me fight the perfect storm. If you are up for it please leave a comment with the special forces group that you would like to join and THANK YOU.

ANGELS: moral, emotional, and spiritual support

FOODIES: nutrition, cooking, recipes, supplements, grocery shopping

CLOWNS: fun, entertainment, decorations, positivity, music, laughter (for Simon mainly but for us too:-)

Meg FANS: play dates, driving to places, picking up and dropping off from babysitting, love, fun, and attention for our #2

PHOTOGRAPHERS: taking pics and capturing this perfect storm, telling the story through pictures

ON CALLERS: 24/7, whatever needed, whenever needed, errands, last minute requests

 

We get asked all the time what you can do for us.

We hate to ask, we hate to come up with things.
But here are things we do need:

  1. babysitters for Meg that will make sure she gets naps, eat appropriately for her dietary needs (due to her genetic disease), and keep her clean and having fun.
  2. Food.  Sometimes we just need someone to help us keep healthy food at the house as we don’t want to stop at 9pm from the hospital to the grocery store when we’d rather have that extra 30 minutes with Meg at home.
    Bananas, apples, food pouches for Meg, veggies
  3. An offer of someone to come have lunch with us at the hospital, bonus points if you bring food 🙂
  4. laundry.  I usually make time for one evening/afternoon to do laundry of our basic needs.  But taking time to do our bedding is hard as that takes more time.
  5. cards.  I love cards as they have more thought put into them.  And Simon would love to see mail for himself!
  6. drinks.  yes the hospital ice is awesome but sometimes you need a sugary drink.  the hospital does not do sugar anymore and I refuse to drink diet drinks.  Mtn Dew or Dr Pepper for Caleb and any kind of fruity drink for me 🙂
  7. someone to talk to.  sometimes we want to be left alone but it’s nice to talk about NORMAL things

 

SCT #2 

If you are new to Simon’s  story read the ABOUT section.

Simon went in for his second stem cell transplant on October 4, 2017.

The first day is considered day – 7 (negative).

He had 4 days of very high dose chemo (3 types). Then basically 3 rest  days.
On day 0 then put his stem cells back in at 1030am.

One thing to note is that side effects from the stem cell transplants are from the CHEMO, not the stem cells themselves.  Stem cells go in like a blood transfusion.  It’s very simple, has low side effects (the main being an allergic reaction to the preservative and the other being a smell for a few days from that preservative.  Dad says it’s creamed corn and I think it smells like warm milk).

Simon developed mucositis at about day +5.  

It got worse to the point that on day +7 he was transferred to the PICU late at night (the night that Grandma Williams happened to be there and both parents were home).  I ran up in the morning.
My mom went home and within an hour or two they found fluid around Simon’s heart.  He went right into emergency surgery to place a drain by his heart.  It was awful to be alone and know they are putting a needle right next to his heart.
but he made it through and they had to intubate him as he couldn’t breathe through the mucusitis and the swelling.
He was intubated until October 25th, day +14.

Luckily he engrafted between day +10 and +11.
So his white blood cell count and ANC started climbing.

Normally this would help his mucositis go away quickly.

Extubated on October 25

But the breathing tube agrivated it and at day +17 he still has the mucositis.
It is getting a bit better but still makes it near impossible for him to talk, swallow, and get comfortable.

October 28th dad called via video and we got to see him smile at Meg and he started crying when he saw mom cause he wanted me so badly.

I came up the next day and he was fairly out of it.

Until that evening Aunt Amber and Aunt Kari came and he suddenly woke up, wanted to get dressed, and waved at the video Amber took.  Miracles!

He was still so tired but was making more eye contact.
This was Sunday night.

Monday was a better day as well.  A bit more time being awake, more eye contact.
Still not able to sit up, stand up.  Very low energy.

Tuesday was Halloween and his energy was all but gone. However his liver numbers started to decrease that day!  His bilirubin went from 5.2 to 4.5!  A huge decrease.  His eyes were still yellow but he was keeping less water weight on.

Wednesday I got him to laugh in the morning by watching old home videos of himself.  His bilirubin went from 4.5 to 4.  He was starting to look almost skinny again.  he was able to stand at the side of the bed to use the “cup.”  And in the evening he wanted to walk to the bathroom and use the potty.  We had to support him a bit but he did it!

Today is Thursday, day +22.  Bilirubin is at 3.7.  We are almost to the non-scary level which is around 3.  They have stopped the bumex which is a medication to get the water weight off him.  His tummy is looking more normal sized, though still a bit stretched out but very soft.

He is having panic attacks in his sleep and screaming.
During the day he has these as well but we’re able to calm him down with some back rubs and tickles.
He’s still not talking but makes his wants known with grunts.  We’ve developed hand signals of thumbs up/down and the “ok” sign.

Our goal is to be home a few days before the 13th (this is our personal goal, not the doctors) as Simon has a special event coming up for The Real Justice League Kids.

Dad is up there from last night and will be through Friday, November 3rd.  Then I go up for a couple days.

 

Pre-Surgery Time

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.

First Chemo

 

Today is Saturday, day 4 in the hospital.

Simon has had 3 rounds of chemo so far with the 4th tonight.

He has only thrown up twice- once was a protest (I’ll throw up if you give that to me.  *does it* see, I told you I would) and the other was right after chemo ended.

Overall he’s been doing great.

Wednesday when we went in he had two bone marrow aspirations (biopsies) and his port placed on his left clavicle.  They did give him versed so he was pretty loopy before (which was funny and sad) so he doesn’t remember much of that morning thank goodness.

He came out of anesthesia really well- not too grumpy, just hurting.

They gave him a fast acting pain med that would make him fall asleep for a few minutes.

The doctor was really impressed after the first chemo round that he didn’t get nauseated and that he hasn’t been super nauseated yet.

It’s still a struggle to get him to eat- if you know Simon really well you know that he’s always loved drinks but it’s been a challenge since he was a baby to get him to eat solid foods.  He’s not picky- just has never had a strong desire for food.

But this morning I’m getting small bites of a chocolate muffin in his mouth.

He is down 3 pounds from 2 weeks ago which isn’t good.

Could be worse but still is a lot of weight for a 4 year old.

Anytime a nurse comes in he asks right away “What are you doing?”  “What is that medicine?”  “What does it do?”  He’s very inquisitive.

I’ll try to add pictures to the blog as I go along- but it’s hard when it’s such a busy time.

It’s the busiest time of the year for work for me.

Meg has her appointments every few weeks.

And then we have Simon up here every few weeks but trying to keep him healthy at home too.

He did tell me this morning when I asked if he wants to go home in a few days “No, I can’t go home cause the doctors haven’t fixed my tummy yet.”