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. 

Advertisements

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.”

Diagnosis February 2017

 

November 2016
Baby sister Meg was born with a genetic disorder.  We knew having a girl she was guaranteed to have it.
Simon started complaining about leg pain before she was born.
We thought it was just him adapting to change of a new sibling.

December 2016
Both kids caught a cold.  Simon just couldn’t shake his.
Missed his preschool Christmas performance.

Things came to a head in January 2017 when Simon was drinking TONS, sleeping more, falling asleep in odd places, complaining of leg pain, and would have random fevers.

He received a blessing for the fevers and they went away for a bit.
But came back.

January 11, 2017
I emailed our main pediatrician, asking for an occupational therapy appointment cause he was still just acting odd.

January 13, 2017
We tried a weighted blanket.  it did help for a couple nights

January 15, 2017.
My mother and father in law were his primary teachers.
They came out after class and said he’d been crying that he can’t walk.

January 17, 2017- message to pediatrician

“I’m sure I sound like a needy parent right now 🙂
Simon’s sleeping has gotten a lot worse over the last 3 days and he has complained of constant pain in both his knees.
He does love his weighted blanket but it seems the pain is really keeping him up.

Should I bring him in?”
I got the next available appointment with the pediatrician.

January 18, 2017
Drove up to the U of U hospital and the car broke down only a mile from the office.
Luckily it was right next to where my grandparents are laid to rest.
So I carried Simon through the snow to go see them while we waited for my parents to come save us.
Simon thought it was a great adventure especially when the tow truck came.

January 19, 2017
I took him into our pediatricians office and saw a pediatrician we didn’t know.
He had Simon run, walk, and do some stretches- none caused him pain.
He had the doctor on charge that day check him out.
They both said he was faking it, for attention, and he’d be fine.

January 20, 2017
Simon woke up and ran to the toilet where he threw up blood.

I ran upstairs, told my mother in law to watch Meg and ran Simon to Primary Children’s Hospital.
Caleb had just arrived at school when I called him to ask him to meet us at the ER.
We were there for maybe 6-7 hours.
Blood work looked fine except his inflammation levels were SKY HIGH.
The ER doctor said she didn’t want to scare us but it could be leukemia or something else.
The hematologist said it all looked fine and to just have blood retested on January 23rd.

January 23, 2017– my email to our pediatrician  (who we still haven’t seen yet)
“The ER doctor for Simon from last Friday told us she had submitted an order to do follow up bloodwork today (Monday). We waited at the outpatient lab at Primary’s for two hours trying to find out why there was no order there, why they couldn’t get a hold of any doctor, and in the meantime Simon is running a 101.4 temperature.

The other Dr Brown (sorry I don’t know his first name) basically told us that Simon was faking it for attention and to ignore his complaints. Then we are in the ER 14 hours later with Simon throwing up blood and in more pain.

He has had fevers between 99.8-101.6 multiple times a day for over a week now.

We are really feeling frustrated that we’ve been told to ignore the symptoms, been told he could have leukemia or some virus that no one knows what it is, and felt really ignored when our son is not acting like a healthy 4 year old. He has bags under his eyes and purple circles around them DESPITE that he is getting more sleep now (sleeping better at night and taking naps the last week).

I know this isn’t your fault but we need some help.”

January 27, 2017
We met with rheumatology and they redid the blood tests and checked some things.
They put him on a steroid and oxycodon.  The fevers went away and he was acting fine.
We had x-rays of his hips and legs- looked great.

February 1, 2017
Found a message (not meant for me) from the rheomotologists about possible systemic juvenile idiopathic arthritis.

February 2, 2017
Email from rheomotologists:
“Dr. Bohnsack and I were reviewing Simon’s case yesterday and considering your question of toxic synovitis. Yes, we have considered this as an option, as we initially felt that based on his history and physical exam, he could have a reactive arthritis following the cold you mentioned he had had two weeks prior to the onset of bialteral knee pain. Toxic synovitis refers to arthritis usually affecting a hip after an infection, where as reactive arthritis is a more general term used to describe arthritis of any joint following infection. We don’t typically see elevated D Dimer and Ferritin with reactive arthritis which is why we were leaning more towards the diagnosis of Systemic JIA. We can continue to review this differential diagnosis together in clinic on Friday.”

February 3, 2017
Rheumotologist said he’s doing great, mild systemic juvenile idiopathic arthritis.
But that still didn’t sit well with me.

February 7, 2017
I still didn’t feel right about it.
Simon was missing some classic symptoms and I didn’t want to rely on this steroid forever.
So I messaged our friend Carlie (who’s son was in treatment for cancer) to go see her family pediatrician as I just needed that second opinion.

I had an appointment with her the next day.

 

February 8, 2017
I took Simon to his appointment with the new pediatrician. They did think it was a check-up but after they kept trying to do eye tests and such I informed them this was an appointment for a second opinion.

The doctor came in (Melinda, love her!) and she sat down and just said “tell me the whole story, from the beginning.”
We went over his blood results.
She didn’t even do a physical exam, she just believed me.

Then she said- I’m going to make some phone calls. It might take a while, I’m sorry.

About 40 minutes later she came in, sat down, and said- you are checking into Primary Children’s Hospital in the morning for two days to do a full workup.

It threw me for a loop but I agreed- I HAD to get answers as to why my son was in pain and not acting normal.

*Melinda Liddle called me last week (Feb 2018) just to see how we were doing, if she could do anything for us. I love her so much!

We went home and prepared to be at the hospital by 8am the next day.

February 9, 2017
Caleb and I both went up to the hospital and left Meg at home.

The first thing they did was an IV.  Simon hated that but he got to play video games so things were good.
ECHO notes: Incidental finding of a homogenous mass in the liver measuring 6.1
x 5.97 cm.
CT Scan notes: Right suprarenal mass consistent with neuroblastoma. Please see
CT abdomen and pelvis report.
CT for abdomen and pelvis notes: FINDINGS
* Medical devices: None
* Lower chest: Normal.
* Hepatobiliary system: There is a large right suprarenal mass
which immediately abuts and distorts the contour of the right
lobe of the liver, elevating and displacing the IVC anteriorly.
the liver is otherwise normal without focal abnormality. Is no
biliary dilation
* Pancreas: Normal.
* Spleen: Normal.
* Adrenal glands: There is a large right suprarenal mass. It
measures approximately 6.5 x 5.2 x 4.8 cm. Focal dystrophic
calcifications are present within. The margins are somewhat
blurred with the liver. The mass circumferentially surrounds the
right renal artery and right renal vein and left renal vein.
There is right periaortic mass with lymph nodes that extend down
to the mid right iliac artery. Lymph nodes are present anterior
to the aorta at the level the renal arteries of lymph nodes
present at the left periaortic location surrounding the left
renal artery. A round mass is present adjacent to the head of
the pancreas.
* Kidneys: Flattening of superior aspect of the right kidney due
to the suprarenal mass. The kidneys are otherwise normal in
their appearance. There is diffuse narrowing of the right renal
artery by the circumferential mass.
* GI tract: Normal.
* Peritoneal cavity: Normal.
* Mesentery: Small nonspecific lymph nodes.
* Pelvic contents: Normal.
* Bones: Subtle sclerosis at the anterior body of L4. Osseous
structures are otherwise intact.
IMPRESSION: Large right suprarenal mass with adjacent contiguous
spread and adenopathy extending into the right periaortic
location circumferentially around the right renal artery and as
well extending to the head of the pancreas.
The appearance is most suggestive of neuroblastoma
Mild diffuse narrowing of the right renal artery caused by
involvement of the mass with adjacent adenopathy

They didn’t tell us anything on the 9th except that something odd was on the ECHO but that sometimes they see weird things.

I went home to nurse Meg and had planned on coming up the next morning after she woke.

February 10, 2017
I woke up.
Got a dessert from Zupa’s out of the fridge that I knew was bad for breakfast but I wanted it.
Got a call from Caleb- we had horrible reception at my in-laws so I said I’ll go upstairs and use the landline.

He called me back on the landline and put me on speaker as the  rheumatology  team wanted to talk to both of us.

They stated the CT scan showed “multiple tumors throughout his body.”

I burst into tears.  I don’t recall much else of what they said.
I kept repeating “I need to get up there, I need to get up there.”
I told Caleb I would be up there soon.

I ran downstairs.  All I knew with cancer is you get admitted to the hospital for a while so I packed a bag of clothes for him.
I woke up Meg and took her to my parents.
The doctors had said to not drive myself.
So my dad drove me to the hospital.
I was one of the last to arrive.  I hate that I was the last to arrive.
People started explaining to me what was going on- it was so loud in the room.
I finally yelled “BE QUIET!”

and it went silent.
Shaun, my brother-in-law, had taken notes from the doctors.
So he read me those and explained it was not multiple tumors- the dumb rheumatologist saw enlarged lymph nodes and thought they were tumors.
It was one large tumor.
So we went from really horrible news to just horrible news.
Simon had no idea what was going on.
He had been given a truck and trailer with horses and he was so excited.
I grabbed Caleb and we went to the outdoor play area for the kids to just talk.
We didn’t talk.  We just stood there, holding hands.

I don’t remember pumping milk for Meg that day- I assume I did.
A sister-in-law brought Arby’s.  I think I took two bites.

We met with the oncology team and were moved to the 4th floor.
Lots of talking.  I took pictures of what they wrote on the whiteboard.
Visitors other than family- our bishop came up.  So grateful for him.
Then Caleb’s cousin Joe came up as he’s a doctor with a kid the same age.

Oddly enough we were discharged that night to go home and wait for news of surgery to give him his port and start the first chemo.