The first month of treatment she was on steroids and weekly chemo treatments in SLC. The steroids were a BEAR and wiped Meg out. She was tired (and STARVING) all the time and her bones and whole body just ached. After she had chemo on Fridays she would be down for the count for the rest of the weekend. She'd start to perk up about Tuesday or Wednesday just in time for her to have chemo again on Friday. This was a heartbreaking month. It was devastating to see our usually busy, won't slow down kind of child so run down.
During this first
month Meg also began losing her hair. I'd help her wash it in the tub
and would have fingers full by the time we were done. One Monday night
after it had thinned significantly and was looking pretty bad, she
decided that she just wanted to shave it all off. My sister in law Heidi
called a family friend Kaitee Banta, (her grandpa was Jay Banta who was
Kendon's dad's best friend all growing up. Kendon played baseball for
him, hunted with him, and Connor's middle name is Jay after him.) and
has alopecia. She has not had hair since she was about two. She is now 15.
She came over and talked to Meg about being bald and that different is
cool and that bald is beautiful. She was such a blessing to us during
this difficult thing to do. She gave us all such peace and hope that
"it's just hair" and it will be okay. Kendon shaved Meg's head while we
all say Taylor Swift's Shake it Off. It was heartbreaking and powerful
all at the same time. But Kaitee was right, bald is beautiful and Meg really rocks it!
the end of the first phase they ran another bone marrow biopsy to see
how much residual disease she still had in her body. Her numbers should
have been below 0.01%. The first phone call we received they said that
her percent was at 8% but they couldn't imagine that was correct. We
prayed that it wasn't. So, we had to go back to SLC on a week we were
supposed to have off and redo the biopsy. 4 LONG days later the results
came back and she was at 0.7%. Still not good enough. So, bumped again,
now to VERY high risk. I didn't even ask what this means for her