Day 469

day 469

The newly increased dosage of steroids are in FULL effect, and Benji’s only taken five doses. I walked into the boys’ room this morning to wake them up after a gorgeous bridge walk, and Benji SHOT out of bed and said “GOODMORNINGMAMAILOVEYOU!!!!!” and sprang down his loft bed stairs to give me a tight squeeze and get dressed. We took Banyan to the bus stop and I walked Benji up to Mrs. Smith’s classroom, and pulled her aside.  I told her about his increase and let her know he might be a bit…bursty today. I also asked for permission to sneak into recess again and administer his hour 48 dose of Leucovorin to follow Tuesday’s Intrathecal Methotrexate. Permission granted.

I had a very productive workday and enjoyed feelings of extreme gratitude for the massive amounts of generosity and kindness that have been extended to our family. I started having fantasies of a big, festive party at the end of Benji’s treatment. A thank you party. The list of invitees will be pages and pages long.

It’s always a treat to catch my kids in their natural environment. Benji was having a great time at recess and Mrs. Smith said he hadn’t been unusually hyper or loud at all today. I’d packed him a heavy lunch so all was well there. He was a little flushed but nothing alarming. He took his Leucovorin without issue and ran back to the playground to join his friends.

After school, Banyan went to a friend’s house and Benji and I went to his guitar and batting lessons. I used the half-hour windows to catch up on paperwork. One of the items due tomorrow is Benji’s third grade registration, which includes a health questionnaire. I had to check the “cancer” box. It still feels so strange.

Banyan came home after dinner at his friend’s house and went straight back to check on Benji, who was lying down with a castor oil pack. He really has the biggest heart in the universe. I am so grateful for him tonight. I’m also grateful that Benji’s steroid pulse seems to be making his highs higher, without many lows at all.

In just over two hours I’ll wake Benji up to administer his hour 60 dose of Leucovorin. After this dose, I won’t have to wake him up in the middle of the night until July. Add that to tonight’s gratitude list.

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