Jones Family

Jones Family
November 2009

Thursday, December 3, 2009

Is it really December?

I can't believe it's been a week since Thanksgiving. I just didn't have the heart to update since we were at Children's Thanksgiving Day or since. Brayden's Oncologist was wonderful to come by and talk to us, spending so much of his holiday time doing all he could to make Brayden laugh with his stories of his cats, football (even though he doesn't like football but knows Brayden does) and the list goes on. Meanwhile, we were reinforced of how bad this past round should have been for Brayden. He was so surprised Brayden hadn't been sick since these chemo meds had been in his body before and wreaked so much havoc, this round should have been all the more intense. Sometimes I wonder if the chemo is really working when he doesn't have the intense responses that are expected, like with his hair taking so long to fall out and his minimal sickness with this round and so on. On the one hand I am so grateful he hasn't had to endure more than he already has, but it's honestly left some looming questions hanging over me. We were SO thankful to hear his eyes made it past the impact from this round. He could have had bleeding conjuntivitis from this. Ugh. We were warned how bad that could have been and I'm so glad the drops worked and that was one more thing he as able to avoid. We were assured the timing of Radiation wouldn't change. Since then, there have been some changes sent to me, but they aren't locked in stone yet. We haven't heard from the Radiation people yet so we're not getting our hopes up just yet.

Thanksgiving the ride home wasn't so great. Brayden rode with Daddy this time and the silence with me in the car alone with my thoughts was deafening. I kept reaching for the phone to call someone and kept reminding myself everyone else had plans and was busy celebrating with their families. I think that's what made the weekend so hard was that there wasn't anywhere for me to run for those 3 1/2 hrs or anything to do to keep my thoughts somewhere else. It was just me, the road, and all the possibilities and re-living the past 7 months in my head and heart. I kept focusing on that we were lucky we got to walk out that day with Brayden and come home. I never want to rejoice in someone else's sorrow. I do want to remind myself how much more Brayden could be enduring with not even getting to be at home. I guess that comfort keeps me going.

We celebrated our Thanksgiving Monday night. Sweet Bryan picked up a turkey breast for me and groceries when we got home since we'd been gone and hadn't shopped for a week. The frozen turkey breast had to wait a few days to thaw in the refrigerator, but it honestly seemed to work out better that way. We truly acknowledged all the things we have to be thankful for this year and it certainly had a profound effect on all of us. The weekend flew by in a blink with so much to do in catching up on cleaning, laundry and more cleaning after being gone. His Oncologist was so sweet to check Brayden's counts for us before we left ACH on Thanksgiving. I almost wished we hadn't...he was Neutropenic. So we've spent the week being extra careful of germs since anything could cause his system to react with a fever (then hospitalization).

Tuesday Brayden had a round of 2 chemo meds, Vincristine and Asparaginase which is the two shots in his legs. It was so rough watching him endure that burning acid feeling in his muscles and his legs have still been sore. But we kept trying to focus on this being his last time to get this one. One more down! The staff at Highland's does such a great job. It just breaks me in two to see him in pain like that though. After getting the results of his bloodwork, I'm on high alert watching him for reactions. His hemoglobin and platelets were lower and near transfusion level. We go again Friday for another update on his bloodwork and we're just praying they've come up on their own so he doesn't have to endure a transfusion with all its many risks. After this much chemo, their bodies just can't make more cells on its own without help from the transfusions. He's been more nauseated this week. Wednesday was a really bad day and he really had me worried. Even with the nausea meds, he still wasn't himself. Thankfully Thursday he was improved, but has still been in pain, nauseated, and not 100%.

I'm thankful for 1 week nearly down without a Little Rock trip. Those drives are so hard on all of us. Next week we should be able to have a break as well, but still getting chemo locally and checking his blood counts frequently to ensure the last round of Ara-C doesn't have him in the danger zones for transfusions.

We're very close to our goal for the Red Cross Blood Drive. Most likely, we'll be in Little Rock, but there are a few pieces to confirm. Thank you to all of you who have signed up. If you aren't in our local area, you can certainly go to your local Red Cross and donate on behalf of Brayden. We all are so thankful for your generosity and your time to give of something that can help so many. Thank you all for your prayers as he draws closer to the Maintenance phase of chemo and can put the aggressive rounds behind him.

1 comment:

  1. I love this update because it is so real. You describe the reality of the situation in a way that makes us think we understand. The whole experience is one loooonnngggg rollerocoaster.

    I am thinking and praying for you three.