Joel - PICU

Joel was rushed to PICU in the early morning hours of Thursday, October 19, 2017. Will was with him that night, as Joel struggled more and more to breathe. I was at home with Seth who had been battling a stomach virus. Once I finally heard the news, Seth and I rushed to pick up Nathaniel from school. I had to tell Nathaniel the bad news. Poor Nathaniel thought that when the office called I was picking him up to go do something fun. Ironically I remember it being a beautiful fall day, with blue skies and nice cool weather.

Mary Kay picked Mimi up from the airport and brought her to the hospital. Will and I both stayed at the hospital that night. I slept in the chair in Joel's room and Will slept in the room at the Ronald McDonald house. We thankfully had a room every night Joel was in PICU. Their services were so helpful and appreciated.

Seth never made it in the ICU room at all. We tried a couple of times but the vent terrified him. I"m sure all of it terrified him. Thankfully the child life specialists kept him and Nathaniel busy.

Friday the 20th

Friday the 20th around lunchtime. Zane is at the right of the picture playing guitar for Joel.

Before Joel was rushed to PICU our oncologist had arranged for us to get this new chemo through Compassionate Care. Although the final bone marrow biopsy ultimately showed the cancer was now in 80% of his body, we still administered the chemo in hopes it would give Joel some relief. He was still getting some relief from his scheduled IV Tylenol.

First-ever purple chemo - started Friday night the 20th.

Saturday the 21st

Sunday Oct. 22nd

Thursday, Oct. 26th
Ginny, Mom and Dad came to visit
Joel opened his eyes and looked at me for a bit

Bubba visiting - he was so sweet. Oct 28th

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Test to see if Joel could breathe on his own - Oct. 31

Tuesday Oct. 31

10/21 - I must have been at the hospital because I don't remember this.

These were done 10/29 when I was at hospital with Joel. It was a challenge to try and take care of other kids at home when one child is very sick.

 

October 31 - 2nd Grade Book Character Parade
Mimi and Granddad there to watch

N at Pumpkin Patch

Our friend Mary Kay took Nathaniel to the pumpkin patch, since we weren't able to go. He's been so sweet during this horrible year.

Joel Relapse - 9th Floor

We were so thankful for the nurses and doctors who cared for us on the 9th floor. While we hated the fact that we had to be at the hospital, Joel always made the most of it, enjoying everything he could. Smiling through the pain.

September 15th

Sept. 16 - Seth on a walk? I was at hospital with Joel, didn't take this picture.

September 18th

Nathaniel's first try at addressing envelopes

Me and Joel - 9/18 - I guess we went up for Will's birthday?

September 19th - Joel and Daddy doing puzzles

I had brought Seth up for a clinic visit this day. We hadn't been successful in getting Joel to sit in the yellow chair. As soon as he saw Seth sitting in it, he wanted a turn. He was still really nauseaus and throwing up, but he gave it his all.

We made some play-doh snakes and balls with Danielle.

September 21 - We were able to get him to the couch. Again still nauseaus - he threw up as soon as we got him to the couch. But then he'd make the best of it and play for a bit. I think he was throwing up 3-4 times a day here.

Friday Sept 22nd - playing with some new wooden toys

September 24th - his relaxing pose - we got a visit from Ginny and I remember he was very chatty.

September 25th - visit from Seth and Daddy after Seth's clinic visit

September 29th

New Birthday pjs

Visit with Mimi - October 1st

October 2nd - Rainbow I saw with Joel

Seth up for a visit

October 3rd - The nurse made Biters a gauze blanket

Night Nurse Kate made Biters a house!

He sat up on the pillows this day and said he was "King Joel" - he had us all laughing this day

October 3

October 4

October 4th

October 4th

Music Therapy - Zane brought frog musical instruments. Joel was laughing and so happy.

October 5th - Joel loved coloring this bat

And musical instruments

October 6th - visit with everyone - Bubba off school

Oct 7 - Nathaniel visiting and pancake breakfast

October 8th

October 9

October 10 - doing "spidey webs"

I got to eat lunch with Nathaniel at school

My last stroller ride with Joel - October 12th

October 13th - I got to rock Joel in chair in waiting room in OR before his last bone marrow biopsy. I didn't know how we would get him down there because he was in so much pain. I ended up putting him on the black rolling PT stool to get him down there.

Monday October 16th - lots of fevers and Joel not feeling great. Gaining a lot of weight.