Support Registry Update

June 24, 2024

In support of
Mason Early Family
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Hello- we had another quiet day- thank goodness!

Mason slept well last night, outside of a few trips to the bathroom. He woke up this morning with a low fever, nausea at a level 4/10, and in a generally good mood. He asked for his Frosted Flakes and whole milk again for breakfast. I also tried to coax him into a chicken biscuit, bacon or sausage, but he stuck to his cereal and milk, which was completely fine.

They did weigh him last night and this morning, and his weight has remained stable. They added a bit more calories to his IV nutrition so we can try to rebuild some weight and strength.

Mason talked with John and I this morning and we decided to start setting some daily goals for him to work toward, as long as he has some days where he is feeling okay here. Our goal today was to eat three full meals, including one meal in the family lounge, which is now right next door to our room. We were ahead of the game when we set the goals, as he had already started in on his Frosted Flakes.

He spent quite a bit of time scrolling through his phone this morning, which warmed my heart because it was a completely NORMAL activity for this kid.

The doctors stopped by and confirmed that Mason's blood count is starting to show signs of recovery, which is what will help him feel a bit better following the chemo treatments. While the counts are ticking upward, the leukemia blasts stayed steady, which is also good news- the doctor's actual words were "All good news this morning."

Although the nausea is still present, Mason never rated it higher than a 4 today, which is the first time in quite a while that it hasn't caused him to want to sleep through the whole day. I did talk to the doctors about the fact that he is now saying that things are not exactly tasting the same, which is a disappointment to him at times. One of the doctors said that is due to the chemo, and Mason may want to try spicier foods. He has had a bag of spicy Doritos that big sister Hayley brought up to him and he has been waiting for the nausea to decrease so he could dive into them- today was the day.

The family lounge catered in Chick-fil-a meals today, so Mason had chicken nuggets with his chips for lunch. We saved the cookie for later- he still hasn't eaten it- I'm thinking I might hide it somewhere so I can have it myself... Throughout the afternoon, he asked several times for the Italian ice pops that they stock in the freezer in the family lounge- such an amazing resource for the families living on this floor!

He complained about being bored a few times- unfortunately, they still have not been able to locate a controller for the PlayStation that is in our new room, so we don't have a way to log into all the streaming services that we were using in our old room. I have asked every nurse, doctor, child life specialist, tech and even psychiatrist that has entered the room, and no one can locate one. We plan to bring one from home tomorrow to see if it will connect- there are only so many times we can watch the same movies on the FX channel in one week (although fun story- we got to watch the Jumanji movie where Mason's Papa Jack was an extra in a scene last night- so that was fun!).

They did roll in an Xbox so he can at least log in and try to play some video games, but he didn't have the strength today to get into it. Assuming he feels a little bit better tomorrow- Fortnite here he comes!

I will say- we have a collection of games, books and puzzles that he could work on, but his vision continues to be impacted by the red spot in his right eye, which happens to be his stronger eye. It's hard for him to see the print in books, so although I offered to read out loud to him, he's not quite ready to dive into that entertainment avenue just yet. I am hoping that his new glasses will be ready when I get back to Peachtree City this week, so I can bring them up and he can get back to reading and solving word puzzles.

Mason asked for spicy wings for dinner with macaroni and cheese. He got through 4 wings and 2 celery sticks. We've saved the mac and cheese for a late night snack in case he gets hungry again later. But with that- he hit his goal of 3 meals for the day- we're taking that as a win!

We didn't make it over to the lounge today- they have kept him connected to the heart and oxygen monitors as a precaution after our trip to the ICU, and those are not mobile. The nurse let me know that is usually a 24-hour requirement, so we might be able to come off those monitors soon.

Looking forward- Mason will have a repeat chest CT scan tomorrow. They continue to do everything they can to find the cause for his fevers- in case it is something other than the leukemia causing them. They did multiple CT scans last week to determine if the cause could be a fungal infection, but apparently with his blood counts so low, the results could have been a false negative. Now that the counts are moving up, they will repeat the test.

Wednesday is a big day. John and I will have our first consult with the transplant team in the afternoon. Mason will have his second bone marrow aspiration and lumbar puncture, which will determine what the next course of chemo will look like (although this might get pushed to Thursday).

Please keep the prayers and encouragement coming our way. We have had several okay days in a row, which I have zero complaints about. I'm looking forward to hearing what goals Mason comes up with for himself tomorrow. (As his mom, my highest recommendation is going to be an actual shower, but I'm hesitant to bring it up, since the after-effects of my bath mandate last week were disastrous. I might leave that fight to his dad on Wednesday.) We continue to take on the fight one day at a time and having such an amazing support system makes it that much easier!

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Comments

Kelly Miles

I was so happy to read your update! Continued prayers for Mason and all of you. Please give him a hug from me.
  • over 1 year ago