September 27 - Seth's DLI

Seth's counts had been dropping. We were so concerned with Joel that we tried not to focus on it. But at some point he had another biopsy and Dr. Krance decided to give him some donor lymphocytes. All of this happened on September 27, the day before their birthday.

I was at home that day. I brought Mom up to the hospital with us. My Dad stayed at the house to get Nathaniel off of the bus, because as usual it was an all-day event for us. Thankfully Seth and I checked in at clinic, and then went to Joel's room to hang out and eat lunch because the cells wouldn't be ready until later that afternoon. As with any kind of donor cells, there was monitoring afterwards for quite some time. Seth fell asleep in the car on the way home. That night we had planned to make strawberry cupcakes. I remember driving home in the 5:00 traffic (a little earlier really) and then having to stop at Food Town to get cupcake papers to put on the cupcakes, so it was hygenic and we could share with our friends at the hospital. When we get home we tried on the birthday shirts that Aunt Hill had sent for Seth and Joel and made the cupcakes to take up to the hospital the next day.

At first nothing happened with the DLI. Finally in December we saw an increase in Seth's counts.

Mimi's Birthday

Everyone except me and Joel went to the new flight museum on Mimi's birthday. Seth is really enjoying getting out of the house and getting to do new things. We go first thing and he wears his mask.

Joel and I made a little video for Mimi. His sweet voice saying "Happy Birthday Mimi" was precious.

Mommy's Birthday

I enjoyed spending my birthday with my Joel-Bear. I took some pictures with my sweet boy right when we got up in the morning. This was one of the days in his relapse when he really felt pretty well. He ate some pizza crust from Papa John's cheese pizza. It was probably one of the last times he ate anything. The big highlight was that I got to hold him. He had felt so bad that it was too uncomfortable for him to sit in our laps. Or really even be moved.

Getting to hold him on my lap was the greatest gift -
he hadn't felt like sitting on my lap in quite a while.

My friend Rheagan sent me come cookies up to the hosital for my birthday. Joel was thrilled with the little ballooon in the box.

September 13th - these are the day before my birthday - we moved back up to the 9th floor. We actually just rode in the bed and they pushed us to the 9th floor on the patient elevators. I told Joel that it was like we were in a parade.

He liked this purple truck with the flames!

 

Feeling well enough to nap on me for a little bit - I love it.

Meanwhile on Sept. 13th, Will and Mimi took Seth to the zoo for the first time in almost a year . . . before his cancer diagnosis.

Will took this one of the two of us on my birthday . . .

Joel Relapse - BMT floor

The weather was so hot. The Thursday before Nathaniel was due to start school (August 17), we decided to take Joel back to BMT clinic to be admitted because we couldn't control his pain. Even with liquid morphine at night, he woke up screaming and in pain. I had taken him to clinic a few days earlier and his heart rate was high. We had disucssed with Dr. Krance that even though we didn't know what was causing the pain, if we couldn't keep it under control, we would have to bring Joel in to the hospital.

The night before Dr. Krance had called to check on us. He asked me if it was like when Seth was diagnosed with cancer. As I laid in bed that night, I knew it wasn't like Seth, but Joel was definitely in pain. I came down to check on Will and Joel and Joel hadn't been able to get comfortable. Will and I cried together as we knew relapse was very possible. We cried as Will said that you didn't have much of a chance of getting better if you relapsed. But Joel's pain was so bad; one of us would hold him on the couch, the other one of us would take care of Seth and Nathaniel. We couldn't keep going like that.

August 16

August 17
I tried to keep them busy after Joel left, but my heart was breaking.

At least they played together well. To add to our frustrations, our house was infested with fleas and we were having to vacuum the house every other day to try and kill them.

August 18

August 20
I brought S and N up to visit both Saturday and Sunday morning.

August 20

August 23

8/23 Mimi picture

8/24 Mimi picture

August 25

August 30

 

Sept 1

Sept 2

Nathaniel picked out Strongarm the transformer for Joel. I was so confused about how Joel was describing Strongarm. I finally realized Joel was saying that Strongarm was a "Police Pick-up Truck" Not "Police Truck" or "Police Car." You had to say it exactly the way Joel said it. Later on when we met with Jared Rubenstein and the others on the Pallative Care team, he instroduced them to Strongarm. Someone called Strongarm a "he" or "him" and Joel got upset. He told them Strongarm was a girl. Sure enough, they said later they had looked it up on their computers when they got back to their office and Strongarm was indeed a girl and Joel was correct.

9/3 - taken by Mimi. Everyone must have come up for a visit?

Sept 3

September 4th

September 5

September 6th

September 6th

Sept 7

September 9th

September 12th

September 12th