Stripes and Smiles

We had to do an impromptu dressing change for Sally the other morning as we were rushing to get everybody out the door.

Playing with Daddy’s hat.

Hi all – Sally was back at MSK today for some physical therapy and quick push of chemo. First off, her marrow tests are not back yet, although initial results looked good. We should have those back next week. She also is still testing positive for RSV, and are told she may for another 1-2 weeks. A ‘normal’ kid would be through it in about 10 days, but with Sally’s weakened immune system they say it takes 3-4 weeks to work through it.

We had debated yesterday about bringing her in as she was very sleepy, taking three naps which for her is very unusual. Since we had an appointment scheduled for this morning, and she was giving us some smiles, we decided to just wait.

Slept a ton yesterday.

Mommy with the feeding machine on her back, and Sally on her front. Wonder Woman.

When Sally was there last week, her blood counts were the strongest we’ve ever seen them. After having her CBCs (Complete Blood Check) done this morning, we learned that Sally’s platelets had dropped all the way down to 66 (from 573) and her ANC (her virus fighting cells) had dropped to 0.4 (from 3.7), currently making her neutropenic. This explains why she has been so tired and needy the last two days. It surprised Nicole and I, as they only gave her a third of the dose of the chemo that they gave her the previous cycle that landed her in the hospital for a week. Over the next few days, we’ll have to keep an eye on Sally for fevers and take her in if she does develop one. We’re not sure if she’s bottomed out yet. She is also going to start an antibiotic as her ear is red, and she’s had an ear infection this week the last two cycles so want to be proactive.

Sally started on her seven days of steroids today. This brings hyperactivity in Sally, which affects her sleep. It also brings with it an increased appetite, which that combination usually makes for a more chaotic than average week with her.

Nicole setting up the feeding machine.

One thing we learned yesterday from speaking with other parents is that Sally’s fontanelle (soft spot on her head) will take longer to close up due to the lack of Vitamin D from not being outside and the chemo. We’re going to likely start giving her some Vitamin D to help this along. Sally also has a bit of blonde fuzz on her head, we were told that it will come and go throughout the two years. It’s fun to be able to rub her head and feel hair again, but also sad to know that it won’t last, almost like a cruel tease.

Blonde fuzz

Nicole pointed out when reading my last update that I only mentioned the child with Infant Leukemia who had passed and the one who had relapsed within a day of each other. That didn’t include two other children within our small group that relapsed recently. It’s a scary reality that we live in, these are just babies.

We ask you to please keep a little boy named Mac in your prayers. He’s been battling Neuroblastoma and is also a patient at MSK with us. During all those weeks when Sally was first diagnosed that we spent in-patient, we used to see them all of the time on the floor, they were one of our fellow regulars and recently have seen them on the out-patient side. Mac is fighting hard but is going through a rough period and is currently admitted at MSK. They’re a great family, you can follow his story on his Facebook page by clicking here.

Please keep Sally and Mac in your thoughts and prayers.

Matt