Jones Family

Jones Family
November 2009

Monday, March 29, 2010

Our 10-year-old

So weird...still can't get used to this! I feel so old! I've really been reminiscing with Brayden over the days when he was a baby. Such a sweet, happy baby! Always smiling and happy, rubbing his feet together like a cricket when he would eat. He rarely cried and the only way I knew he was awake from his nap is when I'd hear him playing! I'd love opening that door to seeing his big grin greeting me above the bumper pad in his bed. Oh, where do the days go? He's been eating up the memories. Yes, we have scrapbooks, but he's actually been allowing me to be a bit mushy and I'm loving it!!

We had a big time eating a fun dinner in the hotel room, playing games and watching some tv to finish out Brayden's big day. NO ONE slept well. We were so miserable in a different hotel. It was too emotional to be back in the one we had lived in during Radiation, but this one was just not good for anyone to get rest. Nevertheless, we pressed on this morning. Sedation mornings are never fun. I think the not getting to eat part is even worse when he KNOWS he can't eat. A normal day, he might not even be awake yet! But a sedation day is torture. It was great getting to see his sweet Sedation Nurse. She was too sweet in bringing him a birthday gift. She's too partial to Brayden and he's figured this out. So when we heard who the Dr. would be for his Sedation procedure, Brayden was excited. This is a fabulous Dr. who had worked on Brayden so much while in the PICU. We saw him finally a few months back and finally realized through some of his words how bad things had been in those first days. Anyway, Brayden loves him (we do too) and Brayden was excited to hear. Suddenly, I look over and his Sedation Nurse has phoned him in alerting him the procedure is ready to go and the green light for him to come over...when she hands BRAYDEN THE PHONE!!! My mouth dropped. Brayden says, in a very 10-yr-old voice trying to be 20, "Yes, this is Brayden Jones. I'm ready for my Sedation procedure please." I hear Dr. X howling with laughter on the other end of the phone. Oh no. Now not only does Brayden get leeway with tricking the machines, applying his own connectors, playing with the breathing mask, he's now PHONING IN HIS OWN PROCEDURE?!?! We love how much they love our sweet boy.

Brayden's counts were great today as we said good-bye to Round 1 of 11 for Maintenance cycles. We were glad there were no interruptions to chemo for this typically tough first 90 days. But we remember Brayden is anything but typical. His sedation procedure went well and we realized again from another nurse how thankful we are to have the Oncologist we have...when understanding how other procedures are handled with other Oncologists. He definitely is getting superb treatment and we are SO thankful. Dr. S is thinking his extreme leg pain is a result of the Neuropathy worsening or the medicine not able to control it as much. When you think about it, it has been a year that this dosage has worked. We could have had to drop the Vincristine chemo med that causes the Neuropathy, but without it, a cure is so much more difficult to achieve. So we're increasing his medicine dosage to help the Neuropathy and after a very rough day, he's resting also with a pain pill. For Brayden, that's incredibly rare. We're definitely hoping and praying this helps give him some relief.

Brayden's Radiation follow-up was surreal. He admitted it was strange to be back. I was surprised he didn't want to go to the back treatment rooms to say hi to the team that worked with him. But I totally understood. After his check-up and some laughs, he was happy to be out of there and on our way again.

My favorite part of this new 10-year-old methodology is 'Must I?' I swear, if he calls me Mother, I'm gonna cry. But after nearly every request I made of him today, it was promptly followed with, "Must I" I blame it on Little House on the Prairie. I can't keep a straight face when he says it, but it sure makes him sound older than 9 when he says it.

Tonight after the arduous drive home, we finished the final prep work for his official return to school! Tomorrow is the big day. It feels like the 1st day of Kindergarten with all the butterflies and anxiety. For me...not him! Backpack is packed and set out, clothes are prepped and ready, lists are made, but I'm not sure I'm ready for this. I know it's going to be a GREAT thing. I've got my camera ready and am SO happy for him to have this opportunity to return to school. It's been so long and I'm really happy for him to have a little time to remember what it's like to be in 4th grade. I'm glad he'll have the whole 4th quarter to be there with his friends. I do hope he doesn't try to hide his struggles. He has a tendency to not let others see the ways he is held back, especially with the Neuropathy and his endurance. I know his need to fit in and be his old self will be strong so my hope is he is happy to meet them where he is today and doesn't over-compensate. But he comes from a long line of over-compensators! Poor thing! Anyway, we better close with rest for all and the big day coming tomorrow. I'll work to post an update and some new pictures of all that hair coming in soon!!!

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