Rene took the biggest bubble bath in history.
He made a "robot" on the truck window with a leftover dressing.
I just looked it up and was thrilled to see that each ear is covered for $1500 every six months for children under my health insurance coverage. Yay! Yay! Yay!
On Wednesday Rene will get to have his catheter "lines" removed from his chest. He has liked his lines for the most part because they allowed him to do the treatment with a minimal amount of "pokes." He even enjoyed how they would slap against his chest as he ran with his shirt off at home at night, BUT they make bathing a pain (and slightly stressful). Maintaining the dressing on an active child is hard and they completely rule out swimming (not that Rene is all that great at swimming; it's his Achilles heel of the sports world).
This weekend he started counting the sleeps until he gets his lines out (and he doesn't have to ask us to figure it out every day -- he remembers).
He knows that his friend's lines came out easily at the clinic procedure room, so he's not nervous about the procedure. He wants to go to Boston Pizza after wards, just like his friend did.
Today he told me, "those pokes are easy peezy." I think he's ready to deal with pokes so he can be free to splash and play at the beach!
Note: I appologize for any errers you might find in this entry . Its already way past my bed-time, but I staied up becauze my ants want to know how it went; Aunties, this is for you:
Rene was a champ for his last series of scans. He had quite a schedule to keep, too.
We got over to Vancouver on Monday evening and checked into a hotel. Thanks to Rene getting a flu-like thing (that luckily didn't give him a fever) we couldn't stay at the Ronald McDonald House. Thank goodness for the BC Family Residence Program that paid for our room -- but boy did we spend a lot eating out!!!! I'm asking for a kitchenette if we have to stay in a hotel again!
He started on Tuesday morning at 8:00 in the clinic for a bone marrow biopsy in "the room where I get all dizzy." The biopsy happened at around 9:30 and we saw his doctor before. It was a good visit. She's good at managing the schedule and letting us know what's coming up, making adjustments if we have other needs. She was tickled to see Rene looking so good and strong.
He had actually lost weight the weekend before thanks to a three day flu and diarrhea thing. Gooood work Rene. He's cutting a molar and keeps sticking his fingers in his mouth. Dr. Strahlendorf looked at him and asked, "Can't your tongue feel your tooth?" He just looked at her, stunned. Her logic was completely solid and there was no way even he, the master negotiator, could get around it.
Then Rene went into the procedure room. We used to make it appear that I had never left the room. This started when he was first getting diagnosed and his super, wonderful head nurse had orchestrated it so that he couldn't figure out I left during the procedure. This time he was walking down the hospital corridor to the clinic and said, "Mom, I don't like doing this."
"Why not?" I asked expecting something big.
"bee-guz when I'm asleep you always leave and go eat lunch."
I laughed. Yup. That's what I do so I can be ready to be all helpful when he wakes up dizzy. I didn't say anything but that was my plan for that day as well.
All over the clinic we were running into people we knew and saying hi. About half of them were waiting for their turn in the procedure room. We were lucky we were first. Rene's took a long time.
At one point Rene's day care manager called me on my cell phone. I went into the kitchenette in order to be able to converse without bothering people. From there I realized a little child was shouting "Ow, ow, ow. It hurts, it hurts!" I had never heard him call out during a bone marrow biopsy, but it had to be Rene. It sounded like his voice. I was trying to tune out the sound of my child calling out so that I could continue the conversation, which suddenly seemed to be very long and drawn out.
Anyways, after the biopsy Rene woke up all dizzy and was shaking his head, like he always does. At one time he pointed to two water bottles on the table and asked Luis to touch the little one. Luis did. "No, the other one," Rene said. Luis touched the larger one. "No, more this way," Rene gestured in the direction where there were no water bottles. I don't know if he had noticed the "third" water bottle looked funny or if he had realized that we only had one with a green lid and was wondering where it had come from. Probably the former.
As he sat up, he felt his bandages on his back. It's the first time he's looked for them right away after a biopsy. "Luis, check these out." he asked, hiking up his shirt and turning so Luis could look. Rene can't see his own back, of course.
He didn't eat much even though he was hungry. I think he wasn't quite over his sore stomach from being sick or maybe it was the sedation.
Anyways, he was not ready at the time he had two heart tests scheduled so the nurse called and got permission for us to go when he was ready. We went to that. Rene picked "Little Einsteins" to watch because he's seen one with children learning science on You Tube. This was the baby one he didn't know about. "I'm wondering when it's going to start," he said. He went ahead and watched it. It was soothing and interesting enough for one time.
Then there was the injection of the radioactive MIBG "dye" into his arm. He totally wowed us all. Letting them insert the needle in his arm and do the 10 minute slow injection and rinse with saline. He chatted the whole time -- he knows how to do it now. We were all so impressed.
We went back to clinic to see another family, whose son was getting his line removed. Yay! He's all done with treatment!
We got to join them on their celebration meal, then we got to see a friend from Victoria who has just moved to Vancouver. She came and sat at our hotel with us, which was good because we were tire.
The next day Rene had to be without eating AGAIN. Even though he was without sedation for his 3 hour scans, he still had to have an empty tummy. This time he was too tired to be a hero. He had a huge crying fit because he had to wear an adult-sized hospital gown instead of the ones he wore up on the ward. The people at the nuclear medicine unit are very patient and helpful, so it was soon over, with Rene all strapped onto the machine bed and watching "the Letter Factory" which he loves. I enjoy watching his face light up as he's learning from the movie.
I stood by his side for hours, holding onto his head. He fell asleep at the beginning, which was good because he can't move at all. When he's asleep he holds much more still.
He wanted me to stay for the CT scan, which is like 100 X-rays. I had to wear a big lead coat, but it doesn't cover your head! I'm ready to be relieved of that job. I don't want to be there every 3 months. I think soon he'll be ready to let me go out. He doesn't need all the hand and head holding like he did before. He's getting more confident.
After the scan we went to the aquarium with our friend. (Thank you Red Cross for giving us the tickets to go!!!) It was the first visit in which Rene didn't throw a tantrum the size of Texas. Yay!
The third day we went back for the quick, final scan that they use to compare to the long one from the day before. Then we had a hearing test.
Hearing aides here we come. I hear they cost almost $2000 each. Luckily, we met another family at the Ronald McDonald House from Victoria whose children wear them. They can let us know about funding, if we need it, and any other tips.
Finally, we hung around in the clinic until we could meet briefly with Dr. Strahlendorf. Rene's bone marrow came back completely negative! That means that the 5% mature neuroblastoma cells that were there last time are gone! Bye bye.
The scan results weren't in yet, but we found out yesterday that they were negative, too. Perfect, because those are the critical ones.
Phew! What a long three days, but very good, too because we got to reconnect with other families and be together. With good news, all is great.
It took me a long time to write this blog because I've actually been grieving some bad news for other children. While at clinic we learned that a little boy, just a bit younger than Rene, who had relapsed with neuroblastoma right after treatment had already passed on. I feel so sad for his parents and sorry for his passing. I was just about done crying about that (it's hard because I have to hold it in until Rene is asleep) when I learned that another child -- he's 14, I think -- had just been told that the doctors don't have any more options for him. He has a type of leukemia and they found 40% cancer in his marrow AFTER his transplant. More tears!
I swear I won't stay at RMH any more. I have enough friends with cancer now.
We love them all so much.
In more mundane news we are going camping this weekend. I finally realized that the summer would fly by if I didn't make reservations. We couldn't go last summer, but this summer we sure can!!!!
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