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.

Waiting

As we watch and wait for Simon’s eyes to go back to normal we struggle.

Although his energy is higher, he’s sleeping great, eating better, and looks healthy…. We are in survival mode.

He had his first haircut this past week in over a year and a half

As both kids sleep well we’re getting more sleep.

So why are we so tired?

We’re in survival mode.

The wait is hard.

Knowing your child is getting NO medicine to prevent this beast from coming back.

Knowing if you continue treatment his eyes could stay that way, you know what’s ahead in those final two treatments….

We’re not done with this fight.

Even when treatment options are exhausted we will still wonder if. If it came back.

People keep saying we must be relieved that he’s almost done. There’s no relief except to know that medicinal measures are done. No more torture like that.

But the what – ifs make us tired.

Every pain he has makes us jump.

We wonder when survival mode will end.

We just don’t know if it ever will.

March, Round 3 Immunotherapy

Round 3 of immunotherapy was such a breeze in comparison to the others.

We didn’t have the IL-2 included which made for a less cranky kid. 🙂

He got to go to the playroom every day (and was quite upset when other kids were playing the Wii U :)). We got to wander the hospital a bit which meant demands for fun snacks, toys from the gift shop, and hanging out in the Ronald McDonald House.

It was a nice change to see him happier and more talkative.

Unfortunately what that meant was he was a bit more hyper.
He would be up until 2 or 3 am just talking, playing, watching movies.
I ended up just telling him to entertain himself so I could sleep. 🙂

This round was Caleb’s spring break at the U.
Unfortunate timing as we didn’t get to do anything fun but it was nice for me to have him come stay a night and give me a break.

 

The next week, amongst Simon’s withdrawal from Morphine which is very loose bowels, Meg got a stomach bug.  after day 5 of her throwing up and loose bowels I took her into the ER.  I knew she would need fluids so it was faster to do the ER than a pediatrician visit.  Poor girl hated it.


But she feels a lot better know and is eating anything she can find!

Which does include mud, tree bark, etc.  Oh Meg, 17 months old. 🙂

The Friday before Easter Caleb and I escaped to the Anniversary Inn for a night.
It was relaxing, fun, and a silly room. The breakfast is so good!

We did an Easter Egg hunt with the Williams side on Saturday then the Fullmer side on Sunday.

We didn’t give the kids any candy in their baskets. They just don’t eat it! So they both got a swimming suit, some outdoor toys, and a couple small toys. Nothing extravagant but simple.

Simon was able to go to our family ranch yesterday. He still has a hard time going outside and gets overwhelmed but he said he said the baby cows from the back porch (we have around 80 on the property right now- so fun!).

So the rest of this first week of April will be spent trying to have some fun but Caleb and I both are back in the full swing of work and school.

Next Monday we have an appointment with the bone marrow team to go over how he’s doing and what our next steps will be.

Change and then Some

With this issue Simon was having with some of the medicine we really had to pray and think hard about what to do.

Do we try to eliminate something from his treatment plan because of side effects?
Or do we keep going on it for that small chance it could prevent relapse?

In researching more about the drug and the clinical trials that were done we discovered:
1. the original trial was a very small number of participants. So small in fact that the small percentage of the kids doing better on it was not enough to have really approved it for administration.

2. the drug was added to the neuroblastoma protocol in the 1990’s. During that time the only other treatments were chemotherapy and radiation. They have since added stem cell transplants and antibody therapy.

3. with the additional therapies added no research has been done on how well this drug works in addition to these. Yet 20 years later it’s still included

4. I spoke with what is considered the #1 neuroblastoma doctor in the country, if not the world, on the phone. He said when considering to take any treatment away they really research what is in the best interest of the child’s health…. EXCEPT with this drug because they don’t see a marked difference. So if someone doesn’t want to do it they say ok and carry on.

So today we met with a specific member of the bone marrow team that I requested. I trust him and he really listens to us.
He listened to my thoughts and agreed with my concerns.
But he hadn’t heard that people were questioning the data.
He went out for a minute to speak with one of the main oncologists.
Came back out and said that the team did agree– Simon’s side effects weren’t worth it for a drug that hasn’t been tested in so long. So he is off it!

That means that his original last day of treatment (besides end of treatment tests/scans) of July 7th is now May 26th! Which is kinda scary to be done sooner… But we know Simon has done great, will continue to do great, and has many things left to do in this life!

We are so grateful for the promptings, prayers, and fasting to come to this decision.
We’ve really felt blessed to have opportunities in this country to seek other opinions, find people who want the best for you, and to have a long Heavenly Father looking out for us.

 

We are back inpatient on the 19th for round 3/5 for antibody/immunotherapy.

 

 

Month 2 of Immunotherapy

February was our 2nd month of immunotherapy.

We started the IL-2 infusion at home and the next week did it again with the CH 14.18.
It was awful.
He had so much morphine in him to keep the pain away.
He didn’t want to do anything or eat anything.

And like almost all of our inpatient stays- it snowed,

He lost a lot of weight but developed a new love for Kinder Eggs which there are TONS at Smith’s and Walmart right now. The toys are actually pretty good. Downside? He won’t eat the chocolate. He says it tastes amazing but he’s never tried it. Silly guy.

Upon coming home we knew a bit what to expect this time.
-tons of loose bowels
-nausea
-a while to get eating again
-panic attacks in his sleep.

And just when we got that all under control he started the Accutane again.
Mood swings galore. Anger, sadness, lethargy, sleepy, etc.
He would get about a 2 hour spell in the afternoon with energy and then crash emotionally and physically.

It is so hard to remember sometimes that he’s just 5 years old.
He doesn’t know why his emotions are suddenly out of control.
So we do a lot more cuddling, hugging, and talking things out.
And we find the movies that calm him down. Mostly the Spy Kids movies.

He will even tell you now that he is a spy kid but no one can know 🙂

The accutane is hard on the liver and kidneys.
So we have him on another medication to keep that under control.
it also REALLY dries out your skin/lips

However we noticed on March 4th that his eyes were super dilated, not reacting to light.
He was complaining of severe stomach/back pain.
His legs hurt and he wouldn’t walk.
He became more lethargic and wasn’t even getting upset anymore.

I contacted the on-call bone marrow team and they said it was expected but to get his labs done the next day.

So I took Si and Meg in for their labs (thank you to my mom for helping as Meg has a tendency to be social with everyone and also run away).
Meg’s labs looked great.
Simon had elevated liver counts (bilirubin was still okay).

Clinic called- don’t worry, continue on the way you are.

Which makes me feel like we did at diagnosis again- not being listened to and mommy gut is saying otherwise.

There is a hospital in New York City that is known to be one of the top Neuroblastoma hospitals in the world and I had the doctor’s direct office number.

I left 2 messages for them to call me back.

to be continued…..

(dressing change last night.  He HATES it)

February 10, 2017

February 10, 2017
I took more time than I should have to get ready.
I had a leftover dessert from Zupa’s from two nights before that I was excited to eat.
So I posted a picture of it on social media.

As I’m about to take a bite I get a call from Caleb.
We had horrible reception in the basement so I called back on the landline upstairs.

I have no idea how many doctors were in the room with Caleb and Simon.
I don’t recall many of their words before except they saw something at the bottom of the echo.
And they saw something on the CT scan that told them right away what was going on.

Multiple/Many tumors throughout his body.
I couldn’t breathe.
I started just saying “I have to get up there, I have to get up there” over and over.
Caleb was more quiet.
The doctors told me to not drive myself, to get someone else to drive.
I found out later he broke down afterwards.
My mother in law was home with me and ran downstairs to hug me.

I called my parents and shakily told them.
I couldn’t feel my fingers. I couldn’t feel any part of my body. Everything went numb.

I hurriedly packed a bag for Simon- all I knew from childhood cancer diagnosis’ was they start treatment immediately. I wanted him to have some comfort items, more clothes.

Then I did drive to my parents with Meg.
I don’t remember driving there.
I got to my parents and we had a quick family prayer.

We decided we’d leave Meg with my sisters and my dad drove to get my mother in law since she wasn’t sure she could drive either.

The drive to the hospital my dad was trying to keep us distracted.
It didn’t work super well as I still felt numb to everything.

By the time we got to the hospital so many family members were already there. I still regret not just going straight there and that so many more arrived before me.

I couldn’t get to Caleb or Simon right away, the room was so full of people.

Shaun (brother in law) took notes of what the doctors said.
I couldn’t hear him over the talking in the room.

I am not a quiet person and usually get shamed for it- but this time when I yelled for everyone to be quiet it went silent and no one said anything to me for yelling.

Shaun went over the notes, Caleb elaborated a bit.
I googled some words.
I hugged Caleb.
I went to Simon and he was fine- he’d gotten tons of new toys already and had so much attention. He was happy as can be.

I finally grabbed Caleb and we went for a walk.
We went to the Children’s garden as I knew no one would be out there since it was winter.
We could barely talk. Shock. So numb.

We went back to the room and slowly people started going home.
I think at some point I went to pump as Meg was only 3 months old. I don’t remember.

Some doctors came and told us we were moving to Oncology. I didn’t even know if the elevator went up or down at the time, I had no idea where they took us.

Once settled in a new room 2 doctors came in and spoke to us, kinda going over what they thought, what our next steps would be. Neuroblastoma was not confirmed yet though the only other option could be Wilm’s.

Then we were told we were going home. We were shocked of course, thinking they’d start treatment right away. But they felt it was slow growing enough to take some time to really figure out what it was. We were elated to go home but still so numb, not knowing how we should feel.

Caleb’s sister brought us Arby’s as we hadn’t eaten all day.
I have not been able to eat Arby’s since. It makes my stomach turn.

Our bishop came up in the afternoon to be with us. Poor man at the time had two families in the ward whose kids had cancer.

I really don’t remember what was going on once we were home.
I know we had Simon on some pain medicine.
I know he slept well for the first time in a while.
I know I hugged my kids and husband tighter that night.
I know we had some strong, sincere prayers.
We knew everything would be alright., We had the comfort from our Heavenly Father to know he knows exactly what we would go through.

Today being the first anniversary of Simon’s diagnosis I tried to not think about it. I tried to put off writing this down until later in the day. We’ve had a good day today. I took Simon out for a bit and he LOVED it. But he gets tired fast so we weren’t gone long. We did some silly things, we didn’t remind him of the day. I had my emotional breakdown yesterday, thinking of how hard this last year has been.

Thank you to everyone who has put up with us this year 🙂
We have the most amazing family, friends, ward members, new friends, and cancer family. Bless you all for standing by us, supporting us, feeding us, and just listening and praying.
We love you and are forever indebted to everyone!

February 9, 2017

February 9, 2017
Both Caleb and I went to the hospital with Simon in the morning. We got checked in and settled into a room.

The doctors who were following our case were the rheumotologists we had already been working with as the assumption was childhood arthritis.

We started out with blood work.
Putting an IV in his hand was horrendous. He hated it.

Then we did an MRI of his hips
Echocardiogram of his heart
Checked for a urine infection
blood infection
vessel infection
aneurism
lymphoma
size of his liver
leukemia (which they had already tested a
couple weeks before)
and a CT scan of his whole body

We decided that night that I would go home with Meg since I was still nursing and Caleb would stay the night at the hospital with Simon.

The doctors came in and said they did see something weird on the echo but it was not the heart- the heart was fine. But they said “we always see some odd things off to the side of the echo so I’m sure it’s nothing”

Diagnosis 2017

Since yesterday I have been posting on my personal page about small moments in the days leading up to Simon’s diagnosis.

It’s hard to write it out but also good.
A lot of families struggle with the day of diagnosis and I wondered why.
I think I get it a lot better now. It’s remembering the events leading up to it.
I hated the diagnosis, still do. Hate that day.
BUT I am grateful that we got an answer.

February 7, 2017

A year ago we were told Simon had Juvenile Arthritis even though he was missing some classic symptoms.

I still didn’t feel right about it 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

Immunotherapy, Ch 14.18 Round 1, Inpatient

January 22nd. We got to the hospital on time and arrived at the same time as our buddy Ben who is just ahead of Simon in treatment. They got to be next door neighbors for the 5 days! Did they care? Not one bit. But I was able to get to know his mom a bit better.

 

They started the medicine around 2pm. So the morphine drip was set up 2 hours before, then Tylenol and Benadryl the hour before. The Benadryl is to help if there is a reaction, the tylenol to stop fevers as they are common in this, and the morphine as it is painful. It takes about 4 hours for the medicine to really take hold and cause the pain. and on the 4th hour- Simon was crying in pain. They called his NP in and apparently she did the math wrong for his pump so he wasn’t getting as much morphine as he should have.

 

about an hour later we got it under control and he slept until about 9pm. then he was up until about 2am. Then at 5am when he decided he wanted to play video games. So I turned on the video game and climbed back into bed. luckily Benadryl came in and he was back to sleep at 6 but then up at 8. This medicine tends to hold all the water weight in. So when it’s turned off they give him medicine to get the water off. Meaning- all night long he was up to go to the bathroom. Sigh. January 23rd- I’m tired but handling it ok. Simon is doing great. No signs of pain, low fevers. We watched all the Chipmunk movies. That night was as bad as the first- his schedule is all off and he wanted video games at 5am again. January 24th- he just wants to watch shows, do nothing else. Music Therapy came and he just stared at them until the end when he found a cool squeaky instrument and had fun with that. January 25th was the last day of the ch 14.18 and he did great. We just had to wean him off the morphine from about 10pm that night until the next day. January 26th we came home! He had some constipation that morning. And by that evening he had loose bowels. Very loose to the point where he couldn’t control it. That night his breathing was very fast but not too labored so we didn’t worry as much. January 27th- realize we are out of pain meds so I called my mother in law to come watch the kids and I ran up to Primarys to get more. It’s about a 40 minute drive and they wouldn’t do a closer pharmacy. By the time I got home Simon was about out of clean underwear (despite cleaning it all the night before). Mother in law went home, my parents and family that we live with were at our family ranch two hours away. around 4pm Simon is throwing up constantly and Meg is trying to hug him to comfort him (isn’t she the sweetest thing ever??).

 

Caleb called on his lunch break and I just asked right away- can you come home? He came home right away.

 

The NP at Primarys told us to get a stool sample to the closest hospital to test for CDIFF, Norovirus, etc. It was after hours so we did this through the ER at Alta View Hospital. Odd for me to know more than the front desk about CBC’s, tests, etc. But the test came back negative for everything they tested.

 

He was still pretty sick the next day but slowly got better.

 

January 28th, Sunday, I sent Caleb to church with Meg and enjoyed some cuddles with Simon. We had a very relaxed day. January 29th we had a clinic appointment for Simon and then a clinic appointment for Meg in Genetics. SO GLAD that my mom came cause both kids were emotional and tired. Meg bit Simon on the head, they both were crying so much. Simon in the stroller and Meg running around. So it was a long day of emotional ups and downs.

 

The clinic prescribed Simon a mood stabilizer to help with his emotional changes. It was a very small dose that we started that night.

 

Simon is sleeping in our room right now on an air mattress on floor. He loves it cause he’s near us and says it’s comfier than his bed (which happens to have the newest, nicest mattress in our home. Huh).

 

 

Around 11pm, just as we are drifting off in our bed, we head a liquid sound from Simon. We jump up and listen more- gurgling from his mouth. He was throwing up in his sleep and wasn’t waking up. he was choking. I sat him up and tried to wake him up- he was stirring a bit but not waking up. I carried him into the bathroom to get him in the tub to clean him and hope he wakes up. His eyes stayed closed the whole bath and he never fully woke up.

 

He slept okay the rest of the night but Caleb and I did not. I spoke with the bone marrow team the next day, January 30th. They said to not give him the med again, they have never heard of a kiddo NOT waking up while on it. The sounds from him were so quiet. If he wasn’t in our room he might have continued to choke and then…. I hate it. What if? WHAT IF?!

 

We started another new med last night. His Accutane. Which is pills and we were worried cause he’s never taken a pill before, we usually crush them. But this one is a liquid capsule. And what does Simon do? Swallows them with no problem. 🙂 I was so proud of him. Funny boy keeps us on our feet!  Our Next inpatient is February 19. We will do an at home infusion of another med the week before. This part of treatment is a bit better cause there are no chemo effects. But it’s harder because there are so many medicines, pills, and appointments. It’s very busy and just happens to be when Caleb went back to school and my busy season at work. To say we are busy is an understatement. We are exhausted and we’re only one month into the year.

 

Then the prescription I went to get last night was $798!! I missed part of President Trump’s speech but apparently he mentioned trying to get affordable prescriptions for people. I sure hope so cause that was a big hit.

 

This is a challenging time for us. We are 10 days away from the anniversary of Simon’s diagnosis. We’re emotional, we’re tired, we’re busy, but we are also grateful.

We have witnessed many miracles.

We have received many blessings.

Our Heavenly Father is very aware of us in all situations.

He knows better than anyone what we are going through.