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”

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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.

Scans and Plans

Simon had his CT scan on January 11th.
It’s the first time he’s done it without screaming!  He did great.

MIBG scan on January 12th
It’s the 2nd time he’s done it without sedation and he did great.

Bone Marrow ASpiration on January 13th.
He did NOT like being put under.  But he woke up so happy.

All have come back as clear, no evidence of disease!!

 

Let’s continue  with some good news – if all goes as planned, with no setbacks – we have a last day of treatment! June 3rd. It’s going to be a rough road the next few months but we’ll make it, like we always do 💪

Now the rough news: Part of this treatment for the next few months is a shot almost every day. It can be given at home with one specific home health company. We got this company approved on our insurance. HOWEVER the home health company will not take our insurance. We have a coordinator with our insurance who is amazing so she’s still begging them to make it work.

Treatment starts this Friday, the 19th. We will need to go to the hospital for the shots in the meantime while we wait, and pray, for approval.

These shots are to prepare before , help during, and after the antibody.
3 days before, 5 days during, and 6 days after.

The 5 days during – we’ll be inpatient. That starts on Monday. Back to the hospital for 5 days /4 nights we go!

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