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.
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
* 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
* 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.