Sorry that the previous posts are all out of order in the case of days. I am so new to this blogging thing and haven’t been able to figure out how to reorder them.
Friday Owen woke up and said he wasn’t feeling good… he ended up being sick. Since he wasn’t feeling good, we wanted him to take the medicine that helps with the nausea and sickness, but that just adds to the quantity that he has to take. Friday’s are one of the days that he has to take 3 medicines to begin with, so adding another on top of that isn’t easy. With him, it is all about quantity…
The home nurse came today to take a blood sample, and he did so good for her. Very cooperative. She said that they were able to get him approved for a Physical Therapist to start next week to help him with his walking. This was such good news!
His Oncologist called this afternoon and said that they have the results of the genetics testing. She said that the results showed movement of the TEL gene on chromosome 12 to the AML-1 gene on chromosome 21, which is most often found in children his age. She said that this scenario typically responds well to the chemo. That is really good news, but it doesn’t mean too much until they get the results at the end of this first month on how HIS body is responding to the chemo. Once they know that, they take that information along with this genetics information and they use that to come up with the plan for the future treatment.
Saturday, he woke up and was SOOOO hungry. He ended up eating a bagel, piece of cinnamon bread, pudding and mac & cheese for breakfast! This is more than he would normally eat in a whole day!! Since the Saturday before he went in the hospital, he has been wearing pajamas, and today he actually wanted to get dressed! He was really wanting to get out of the house today, so Daddy took him in the car to go through the car wash. He loved it. I think just getting out of the house was good for him. He wanted to play with Logan today too, but he still can’t do much and tires easily. He and I did do a craft that was making an ornament for the Christmas tree and he and Daddy hung it.
He seemed to feel pretty good for the most part today… the only side effects were the jaw pain and stomach hurting. His stomach seems hard, but he is having normal bowel movements, so I am not sure if it is just because he is eating the majority of the day or what. We are going to ask the Doctor in clinic on Wednesday.
Today (Sunday) he did an awesome job taking his medicine!! He only had 2 to take this morning, but he did them really quick and got them out of the way. It was so nice to not have to spend half of the morning trying to coax him to take it. We have a sticker chart for his medicine, so when he takes it, he gets to put stickers on it. We started it last Monday, so we gave him a prize for filling up the week. I gave him the CandyLand game and we all played. How fun!! He was feeling pretty good today… still not walking, but we are looking forward to PT coming tomorrow. Another of the yucky side effects from the steroid is his heart will beat fast at different times. He doesn’t like that either and was complaining about that today. We keep telling him “It’s hard work to get better.”
by evanshou