How many of Rene's bouncy balls ended up in my purse by the end of scans? I just found three of them in there!
I've been pretending we're on vacation. The ferry ride was peaceful and beautiful as always. I bought a book for Rene and we read it in the van after he and Luis toured around the ferry.
At the hospital, it was good to see the nice people who have worked at nuclear medicine since they played their key role in his diagnosis. Now that Rene is six, it's all a cake walk for me as a mom. They gave him his "juice" of a substance that protects some internal organ or other -- I'm not one of those mom's that hangs on every detail. It's not like I'm going to say no to the scans, so I pretty much just go along with the protocols. I used to know what the juice did, but today I don't care. I was in the waiting room talking with another parent whose 18 month old has nueroblastoma and Rene just drank it without any complaints. Wow! Even last time he balked at it and we had to make all kinds of demands and promises.
Then we walked to the room where they give him his injection. He sat on my lap as usual (I'm so glad he still sits on my lap. It's reassuring for me.) and I can attest, he didn't even flinch when they put the needle in. This without any emla cream or "freezy spray" which he specially requested, but they didn't have.
He sat there while they drew the 3 vials of blood for the blood work. I really appreciate the care they take to reduce the numbers of pokes he gets. They have us carry the blood work requisition to nuclear medicine so that they can draw the blood before they do the injection.
By the time they moved on to the injection that can cause nausea and takes about 10 minutes to inject and flush, he was on a story that was a patchwork of Calvin and Hobbes and other books he's read. He made the whole thing up and kept his mind off of the injection. That simple.
Then we were done and stopped up on the ward to see some of the great team who've done so much for Rene and our family. Our day is wrapping up in the fun Ronald McDonald house, eating family dinner leftovers from yesterday, playing with a volunteer we've enjoyed throughout our time here, Luis and I doing our chores and getting to know some of the "new" parents currently living here long term. Rene has done some Halloween crafts and is playing Don't Wake the Hulk with the volunteer and a sibling of a patient at BCCH.
Rene took oral chemo last week and he'll be taking them next week as well. His side effects were minimal and he didn't even need any anti-nausea medicine today. I think he's feeling physically tired, though because today he wanted to be at home colouring and playing with toys in the living room. Don't get the wrong impression, though, he did this with his customary gusto. He had all his markers out and completed books of "magic" appearing drawings as well as masterminded my printing out of some Halloween themed black line drawings from the internet. I was invited to colour with him and we had a great time colouring at the kitchen table today. He kept deciding we should switch pictures and he would assign parts of the paper to me to complete.
He did his readers from school -- this is homework he loves and takes very seriously -- reading repetitive stories back to me. I love this homework, too. (I'll be less blissed when it comes to math homework, I suspect. I love reading homework.)
Our family is gearing up for Rene's scans, which always start on a Tuesday with a radioactive injection, continue on Wednesday with 1 hours scans, and end on Thursday with a 15 minute follow up scan. Luis and I have had them looming in our minds for weeks now. This is something that only other oncology patients and their families can relate to. It's the mile markers we want to pass, but dread the bad news we may get.
Luis and I are quite sure that Rene's scans will come back negative because he hasn't given us any warning signs that would indicate that his cancer is back. In fact, we (especially Luis) are hoping the doctor will be ready to stop chemotherapy -- but this is a huge step. It's strange, but stopping chemo is about as hard as starting. I've heard it across the board from other parents of oncology patients. It's scary to stop doing the treatment that saved your child's life, even though it's deadly too.
So here we are breathing in and out, eating three meals a day, taking Rene to school and picking him up, going to work and reminding ourselves that it's all going to be fine. This time last year we were pretty scared of what it would be like right about now. Thank God our fears were not realized.
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