Delay #1

Yesterday, I packed up SO MANY activities for Matthew and I to do at the hospital. He was super crabby all the way there because he hadn't been able to eat anything all day. His appointment was at 11:30, and he was scheduled for sedation in the Rapid Treatment Unit at 1:30 so that he could get a Lumbar Puncture to administer chemo into his spinal fluid. It's a pretty regular occurrence for us, I'd say 1/2 - 3/4 of his appointments are this way. But usually, we do those appointments first thing in the morning. In addition to that, instead of just 1 chemo in his IV, he would be getting 2. And both were new to us. I've seen some chemo treatments that take 1 minute to push into the IV through a large syringe, and some that take 2 hours through an infusion machine. So, I had absolutely no clue how much time to expect to devote to our visit.

We started as usual, with accessing his Port. He hates it. A lot of kids get used to it, eventually, and can get through Port access with relatively low amounts of drama. Matthew goes from a good-natured, happy kid, to a total stranger. He was mad. He smacked the mask away and refused to put it on, he kicked the nurse, and his crafts that he had been working on, he screamed at the top of his lungs over and over. Even after accessing his Port, he stayed angry for the rest of our visit. He was then mad (again) that I hadn't fed him, and kept trying to take the Doritos out of the bag. He kept yelling at me to feed him, and then bargaining with me that he wouldn't tell anyone, or that he would eat it really fast, and promising not to throw up when they gave him the anesthesia (the white medicine).

Oh boy.

And when I wouldn't give in, he cried and cried. I tried to comfort him with hugs, and he screamed at me and crawled under the bed. He stayed there and continued trying to bargain with me. Finally, I found his latest favorite cartoon on my phone (thank heavens for Netflix!), and he cautiously took it from me. He crawled out so he was sitting on the floor right next to the bed, and took the phone.

Rochelle, the child life specialist came back in with crafts to do, but he wouldn't talk to her, so she told him she was glad he had figured out a good way to deal with his anger, and she left. She told me to call for her if I needed more help. She's so sweet and understanding!

While Matthew was in the midst of his angry time, the doctor came in, and we talked about the second half of Delayed Intensification.

Here's the scoop:

• No more steroids! Yay!
• He will take a chemo pill every day, for 14 days, which they refer to as 6TG. This is similar to the 6MP, which he took in pill form during Consolidation. He had no noticeable side effects from the 6MP, so I'm not worried about the 6TG.
  
• For two weeks, on Tuesday, Wednesday, Thursday, and Friday he will get a dose of a drug referred to as Ara-C, which is similar to the Doxorubicin he got in the first half of this phase. It's less intense, the doctor said, but since he's getting it so many times all at once, it worries me anyway.
• On the first day of the second half of DI, he'll get Cytoxan, which is similar to Doxorubicin.
  
• On the first day of the second half of DI, he'll have lumbar puncture with chemo administered into his spinal fluid.
  

That's a pretty heavy two weeks, with Christmas right smack in the middle of them.

It would have been with Christmas right at the end of these treatments, but after I learned about all of this from the doctor, and she handed out prescriptions and all, she came back and told me it was all a moot point today, because Matthew didn't make counts.

What that means is that his ANC (Absolute Neutrophil Count - the white blood cells that fight infection) was not high enough to withstand this chemo. It's still very low because of the Doxorubicin 2 weeks ago. It's 300, and they need it to be 750. So, they're going to wait another week to start the second half of DI.

So, basically, this trip to the hospital was just to get his CBC. But I still feel like it was productive, because I learned the next steps, and before our appointment, I felt like I was going into it totally blind. Also, I asked her about a rumor I'd been hearing among my cancer mom friends.

Some of the ALL moms have been told that during IM 2 (which is the next phase Matthew will be in) their cuties will have scheduled stays in the hospital for chemo. They do that with most of the other types of childhood cancer. The chemo is so harsh all the time that they keep the kids in the hospital for a few days to a month each round to watch the child as they recover from the chemo. Thankfully, Matthew hasn't had to endure that. Anyway, some ALL moms have been told their child will have to do that during IM 2, and some have been told they will not. We're trying to narrow down how the doctors make that decision, but we haven't been able to figure it out. We're aware of who is on what study, and who is not on a study at all. So far, the other moms whose cuties are on the same study as Matthew have been told they will not have an inpatient stay, but yesterday, the doctor said Matthew will. More confusion among the moms, and I honestly wonder if she had her information correct (she seemed pretty confident, but to be fair, she is still learning) but if she was correct, I'm kind of glad they're planning it for him because it increases his odds.

I didn't get much time to talk to her about it, but I'll ask more questions next time.... I always say that though! In all honesty, that can be very difficult when I'm trying to keep Matthew under control, too. He's usually pretty mad before we do any talking because he's already been through the Port accessing, and then the doctor has done her exam, which to him means more poking and prodding.

But, what it came down to was no chemo this week. You'd think I'd be happy about that, cause the second half of this round is going to totally suck. But I feel oddly hesitant about taking an unscheduled break. Like it somehow decreases his odds to lose momentum like that (the other cancer moms don't think so, though, and said their kids have all had a lot more delays. They were surprised this was his first.) But also, I think it'll add another week to his treatment at the end. So, it's not like it's one week less for him.

So, to switch gears, I realize it's been a long time since I've shared pictures, so I found a couple of super cute ones. Enjoy!

Matthew with his punch balloon, which he got to choose out of a prize box. There are donations like crazy at the hospital. It brings me to tears to see all the generosity. When you first walk in, there are stacks and stacks of boxes filled with donated toys and blankets. In the clinic, it looks like it rained hats. There is a box of new toys to choose and a box of new blankets. Matthew got to choose one of each.

This picture was taken before his Port was accessed. He didn't smile again until he was happily eating Doritos.

Matthew at the entrance to the garden outside of the hospital. Acorns have a special significance to a cancer mom hero of mine, and I took the picture for her. They signify hope because you plant the acorn in the hope of allowing new life to grow. I thought it was appropriate to have at a place of healing - especially a place of healing for children.

Sleeping so peacefully. Isn't he precious?

He's had a rough few weeks, and he needs lots of sleep to recover, but this picture gives me hope for two reasons. See how chubby his little cheek is? He's still at a healthy weight. Also, see how pink his little cheek is? That means he has enough red blood cells right now, and doesn't need a transfusion. Most kids would have needed one by this point in this phase, but so far, his body is making plenty of its own.