Induction I ends, Induction II begins…

Today is the beginning of Ethan’s second phase of treatment, called Induction II. Today is the end of one month in the hospital.

The last 5 days have been action packed, fun filled, and very busy. I’ll try to do a brief synopsis, and then move on to current medical status/treatment.

Thursday night, Grandma Mary stayed at the hospital with Ethan, while Yancy, Johanna, Em and Eliot were home together for the first time in many weeks. Emma had her Celebration of Learning at school on Friday morning, so Yancy and I were able to attend that.

Walking into the school for the first time in a long while was unexpectedly difficult. Whenever I walk in to the school I always have Ethan with me, and now, I was empty handed. No one to look after, not dropping off for preschool, not picking him up from preschool…I signed in, unable to look anyone in the face, and made a quick pit-stop at the empty Nurse’s office. I composed myself, and then we went on to Em’s classroom. Talking to people was easier than I anticipated. After all, we received so much good news last week, we were filled with positive energy. During the children reading, my eyes wandered around the room, realizing how wonderful it is that our children have a comfortable, caring, safe, environment to come to every day. And then, peering out to the playground, I saw Ethan’s preschool friends…thinking to myself, that’s where he belongs, and we have to get him well and back here…where he belongs.

Emma did a great a job reading her image-making book in front of the parents. I feel bad I haven’t been more involved in school with her (volunteering, chaperoning, etc.), but the time will come. She’ll get by.

Friday night, the four of us went in to the hospital, and met Grandma Mary and Aunt Katie. They had been with Ethan for the afternoon. Yancy stayed for the night, and we went home. Saturday I received a call from Ethan’s doctor, and she mentioned that because Ethan was doing well (his good blood counts were increasing), he might be able to come home for a couple nights prior to starting his second round of treatment. The plan was for him to come home Monday morning and stay through Wednesday morning.

On Sunday, we were pleasantly surprised when the doctors said we could take him home for the day. So, on Sunday, Ethan enjoyed 4 hours at home. Prior to leaving the hospital, Yancy and I packed up (quite a feat), thinking we’d be discharged Monday. (When you’re discharged, you no longer have a room at the hospital.) Good thing we packed up and took most of our stuff, because when we were at home, the nurse called us and said they needed to move us out of our room and into a double room. So, they moved the rest of our stuff out, while we were at home.

He enjoyed being home, yet understood we had to go back. Upon arriving home, he gave himself a little tour of the house, checking every room, noting every change that had been made since he was last home. He enjoyed his spot on the couch, casually analyzed and used the new water bubbler, had noodle soup, and enjoyed the comforts of home, the ones he has missed.

We arrived back Sunday night to our new room, a double room. It was comfortable though. Monday morning we packed up to go home, I got my “discharge training”, took a tour of the Jimmy Fund Clinic (where we would have to go Wednesday to be readmitted into the hospital, and he would actually have started his chemo there, after having a few procedures there too…), filled the prescriptions we needed….and then, his docs wanted to “chat”. So, I went to “chat” with them, and they essentially gave me the option of going home as planned, or starting chemo a day earlier. Ethan’s counts improved so fast, and was doing so well, they were ready to start again. Of course I wanted him to go home for a couple nights, and I had already told him, and Emma, about that…but, even more, I want him to beat this thing as fast as he can. He’s doing so well, I didn’t want to break that momentum. We’re on board with the docs’ plans…

We got to go home for that day, Monday, again. Another great time…quiet, relaxing time inside, pouring buckets outside. We hydroplaned to and from the hospital.

Tuesday morning he was scheduled for another bone marrow aspirate, lumbar puncture, and replacement of his NG tube. Again we opted to do those procedures in the Treatment Room on our floor, under conscious sedation. Everything went very smoothly. The bone marrow aspirate appeared to be much easier this week…one of his doctors did it. She did it so smoothly, without the man-handling. And how great it is to have an NG tube that doesn’t leak! YEAH!…it’s the little things that make us happy. So, at 10:30 a.m., those procedures were done, at 12:00 pm he had an x-ray done in his room to confirm correct placement of the NG tube in his tummy, at 1:00 pm he had an ecocardiogram (to be done prior to starting chemo to confirm a healthy heart)…and would you believe that at 2:00 pm, the docs said we could go home again for the day! So, off we went. I knew there was a reason I kept my car at the hospital this week! We got home and quietly enjoyed the beautiful weather outside. Ethan sat on the new steps that Papa Hank rebuilt and caught bugs. He sat on the couch, played at the computer, walked around the house, went upstairs, walked down to the basement to find certain toys, laid in his bed. Towards the end of the visit he got exhausted. How could he not be exhausted. What a day he had! To think he was sedated that morning and had those procedures done. I was exhausted too. At 7:15 pm, we headed back to make our 8:00 pm curfew . Ethan slept for the 45 minutes we were in the car. I carried him into the hospital, and we got back to our double room, where I was ready to plop. I thought he would go right to sleep, but he came up with this new energy and talked about how he wanted to stay up until 10:00 pm. (He got a Pirate watch from his procedure in the morning, as his prize, and is fixated on telling time now. Over the last month he has learned to tell time, at least to the nearest hour, as we often watch the clock for one thing or another.) I got ready for bed, and got in bed, thinking this great day has now come to a nice end…sweet dreams.

But, at 9:30 pm, his nurse came in, and mentioned they had a single room available if we wanted it. Earlier that day, I had kindly asked the Nurse Manager, that we be considered for a single room if one came available. She said that yes, she had some flexibility now as some patients had left, and she’d see what she could do over the next day or two. Typically, kids with AML get their own room, because of their length of stay. And, in Ethan’s case, especially since he is going to transplant next month.

So, at 10:00 pm last night, we were changing rooms. But how nice it was to be settled in a room we had to ourselves. It’s a very comfortable room, and so far, Ethan’s favorite room, mine too. We could be switched to a different single room at some point, but for now, we enjoy this room.

Today, Wednesday, Ethan started his second phase of treatment. His chemo begins today, Day 1 of Induction II. We haven’t heard back yet on results from the procedures yesterday. For those interested, I will post another entry with the details of Induction II. Essentially, the difference from Induction I, is that instead of receiving high-doses of one of the drugs, he receives a lower dose of that drug (Ara-c a.k.a Cytarabine). And instead of 6 days of chemo, it’s 8 days this time.

Grandma Mary and Eliot were in today visiting. It was a good visit. Eliot looks ginormous to me. Partly because he is just huge, and also because I’m used to looking at Ethan, skin and bones. But Eliot seriously looks like a four year old.

Ethan naps now, a much needed nap. And I feel good, finally catching up on “the blog”. I feel like there’s more to tell, but I’ll catch you all up slowly over this week, a quieter week…