Day 11, Induction II

Hope continues to fill our days. Ethan’s new found energy continues to make the day fly by. It’s now Day 11 of Induction II. His blood counts are bottoming out, zeroing out the white blood cells and the platelets. He shows a bit of bruising and tiny red dots under the skin, petechiae, both signs of low platelet count. It should be a couple days before he needs a red blood or platelet transfusion. His nausea is gone, and we currently don’t see any other physical side-effects from this round of chemo. He’s required to wear a mask over his mouth and nose when we leave the floor, as he doesn’t have any bacterial infection fighting white blood cells.

His appetite is slowly coming back. This evening I introduced the idea of starting to eat healthy foods, for him and the family, as that would make us all healthier. He said, “Mom, I’ll eat whatever you want me to eat.” Later, he asked for some asparagus. So, I quickly ordered 7 sides of various veggies, including asparagus, from Bertucci’s. He managed to eat about 4 asparagus spears and a dinner roll.

Tonight he demonstrated a level of understanding that I wouldn’t expect from a five year old. On Thursday, he overheard me telling visitors that once he gets to go home, he has to spend approximately one year at home, without attending school, going to stores, other public places, etc. I had been debating about when to tell him this, and although I was whispering this to our visitors, he still managed to pick it up. We talked a bit about that again tonight, and he inquired about the specifics of it, and seems okay with it. He understands it. He’s actually okay having “Kindergarten” at home. He was a little concerned that he wouldn’t be in the same class as his friends when he returned to school, but was greatly comforted when I said he would be in their class upon returning to 1st grade. I just couldn’t believe that my little boy, who has been dreaming of going to Kindergarten since he was 2 years old, and going on the bus, was accepting this change in plans. Now, I’m sure come the first day of school, or some other day when he sees the bus pass, he will shed tears…but for now, he’s accepting of his new plan.

He wanted to know who could come in our house, and who couldn’t. I explained that no one but our family would be able to come in our house for about one year, but he could meet a friend outside, in our yard, to play for a little while. He seemed to understand that too, and was okay with that. Again, for now it’s okay. It’s out of the hospital, and at this point I’m sure he doesn’t care what the terms are, as long as he’s out of here.

I spent the last couple days at home having great times with Emma and Eliot. This morning the three of us played tennis in the hot sun. I hope to make this a weekly event, as Emma and I really enjoy it. Even Eliot had a blast, being a little ball boy, fetching them here and there, and trying his best to make contact with the ball. After the ball hit his face once, he shed a few tears, crying out “I don’t like tennis anymore!” After a hug, he was at it again.

Emma was too sweaty after an hour of tennis, so we decided to head to the hair-stylist. She got 6 inches cut off and now sports a great new “doo”, shorter than it’s ever been for her. She loves it, it looks real cute, and it will be perfect for the summer months.

Yancy’s at home for the Saturday evening with his dad who’s in town for a quick visit, and I’m learning that the weekend is way too quiet here at the hospital. Our floor has somehow emptied out, which is a good thing, meaning kids are better, and not here sick. I’ll head back home tomorrow, Sunday until Monday evening. Em’s last day of school is Monday, and a half day. Eliot and I will pick her up from school and maybe do ice cream and beach…something fun…

Ethan has many pre-transplant appointments next week: dentist, echo cardiogram, Glomerular Filtration Rate Test (a.k.a. GFR or kidney function test), and a pulmonary function test (a.k.a PFT or lung function test). He had an eye exam and an EKG on Friday. We’ll stay busy, hopefully talk to a transplant doctor or two, and maybe get a transplant date. I plan to also write soon about transplant details, what it entails for Eliot, and Ethan.