Wow! First off, I am so sorry for not updating sooner. Secondly, things are going fairly well here. Jonah ended up going to the clinic on Wednesday the 12th instead of the 11th (scheduling problems, etc.). But his ANC was really good, around 2600 (I think??? Can't remember that far back!). He started steroids and also had IV Vincristine. He usually does pretty well after the Vincristine. The only real side effect that we have seen from that consistently is diarrhea. But overall, his clinic visit went well and he did great.
The weekend of the 15th and 16th, we had Laura and Markus' wedding, which was absolutely wonderful. I got to meet a lot of Chuck's dad's side of the family that I had never met before, just heard about. Laura was a beautiful bride and Jordyn and Jonah were the cutest ring bearer and flower girl EVER! We had a good time but we were extremely busy while we were there. I put some new photos up on here so click on the 'Photos' section and you can see them. I will also update our blogspot soon with more of Laura's wedding pictures. In the meantime, I added some photos from the wedding to my Facebook and you can see it by going to this link. http://www.facebook.com/album.php?aid=44209&l=10305&id=500483937
We got back last Monday the 17th and had a busy week. I worked, and Jonah ended up running a low grade fever on Tuesday night so off to the clinic we went again on Wednesday. He has some sort of virus. Luckily his ANC was very good at 2000. His fever was around 100, so not too high, but enough to be a little scary. He had been coughing a lot and he also had a runny nose. I also noticed that he had sores on his hands and fingers and I wasn't sure where they had come from. Dr. Hock actually came in to the exam room after Deb checked him out so he could see them - he doesn't see patients in the clinic as he is very busy with patients who are admitted to the fourth floor and newly diagnosed families, so you can imagine the look on my face (and what was going through my mind) when he walked in. He thinks that they are a side effect of the virus that he has/had and that they weren't anything to be seriously worried about. They gave Jonah a Z-pack and that has seemed to help immensely.
While we were there, the clinic was busy with other sick children and we got to see Jonah's friend Justin and his mom. It's always great seeing them as both of our families have become good friends since we met about a year and a half ago. Unfortunately Justin's ANC was 0 so Jonah wasn't allowed to play with him. Mellissa, his mother, and I always talk about when the boys are off treatment, we are going to have a huge play date!
This past weekend we put up our Christmas decorations since Jonah is a 'big fan of Christmas' as he says. He is still enjoying school and he has started indoor soccer at the new ZYSA facility here. Last Friday Jonah had a feast day (a Thanksgiving program but I don't think they can call it that nowadays) at his school and I was able to go and also read his favorite book to him (his class does a parents read-in where a parent can go and read the child's favorite story to the child and you do an activity together). Charlee is also doing well, although I think she has caught the same nasty cold that the rest of us have. She's 3 1/2 months old already and I can't believe it. Time has FLOWN by!
Jonah doesn't have to go back to the clinic this week since his ANC was good last week, so he goes back next Tuesday but it's not for anything medical. Gary Brackett from the Indianapolis Colts football team is going to be there hanging out with the kids and we were invited to come and hang out. Jonah is soooooooo excited! He loves Gary as we have met him a few times in the past couple of years.
Jonah will return back to the clinic on December 10th for a spinal tap, Vincristine, and steroids again. They are going to try this new medicine called propofol on him as a sedation medicine. They normally give him Versed, but the last spinal tap, Deb (his nurse practitioner who does the spinal taps) mentioned that he was a little more awake that time. So we are going to try this and see how it goes. All of the staff at the clinic like it a lot and say that there are minimal to no side effects afterwards. So we'll see how it goes. Cross your fingers!
This week Chuck's family is coming to our house for Thanksgiving. I have never hosted Thanksgiving before as I've always gone to my Aunt Terri's house for Thanksgiving dinner and we have always gone to Chuck's grandmother's for lunch. But we are both extremely happy that Grandma Polly (along with Chuck's mom, two sisters, and our niece) is making the trip out to Indy to relax and have fun. We already have a fun week planned, playing games, shopping, cooking, and baking cookies.
One last note but a good one at that, as I was typing earlier about the spinal taps, I was thinking that if my count is correct, I believe Jonah only has THREE more of these left after the one on December 10th. I can't believe it. He has less than a year on treatment. As I've heard a lot of mothers say, I am assuming that it will be a bittersweet moment - very happy in that this terrible journey will be over, but sad and worried in the same regard because now he has nothing protecting his body.
I am sure as time lingers closer as Jonah nears being off treatment, my feelings will be like a rollercoaster all over again, but I think I can honestly say that I am more excited than not for this part of our lives to be past us. This has been the darkest, saddest, hardest part of my life by far and I won't be sad in the least that this chapter of our lives will be over.
Thanks for checking in. I hope everyone has a wonderful Thanksgiving this year. Remember what this holiday is all about - being thankful for your family and for the people you care about. Be sure to take an extra minute to tell them that! Happy Thanksgiving from our family to yours!
Love,
Chuck, Jade, Jonah, Charlee, and Yankee
|
