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.

 

 

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