Jones Family

Jones Family
November 2009

Saturday, March 13, 2010

Birthday Month!

Yes, in the Jones house for years we realized celebrating 1 day each year just isn’t enough. This may have began when Mom was still pregnant with Brayden and wanted more of Dad’s attention. But that’s a story for another day!! I think the birthday month celebration may also be because we were told for weeks Brayden would come early. So my initial due date of March 17th was thought to be so far off! Recently I told Brayden about that and he was bummed thinking how cool a St. Patrick’s Day birthday would have been. Ah, how your mom too wishes you had come on time and not waited another 2 weeks!! How little did we know he would barely make his entrance with only 2 days to spare before the next month of April. So I think it’s fitting we celebrate the whole month of March for Brayden’s big celebration. This year, more than any other year, will truly be a celebration!! We’ve got some fun plans in place. Brayden heard of some other kids who decided to not have birthday presents, but ask for donations for AR Children’s Hospital instead. He knows how much time we spent there and how the little things helped our visits to be more comfortable. He knows how blessed we were with so many gifts to him during that time and I’m so proud of him for unselfishly giving up his gifts to help other children who may not have such a big support system and we can bless them together! We’re also planning another Blood Drive, so all those who donated in December, it will be time to give again! We want to do this to honor Brayden’s Journey and celebrate him! Please watch for the date to be posted VERY SOON!

I was recently reading back over my first posts on this blog. Whoa. It takes you right back. It’s amazing to see how far we have come, especially Brayden. Those first few days were so uncertain, so scary. We weren’t sure if the tumor in his chest wall would shrink or if the chemo attacking it would cause it to break up and shred his liver and kidneys and cause life-threatening effects. We weren’t sure if his lung would go back to normal after having a chest tube in place for 4 days. We didn’t know if his white blood cell count would respond and drop enough. We didn’t know if his heart had suffered damage or would be strong enough to endure the coming months and years of chemo. There was more we didn’t know, but what we did know was that we were surrounded with love and support from so many, with prayers being sent up on our behalf. We knew God was with us and we KNOW he carried us during those unimaginable days I still can’t bear to go back and reflect upon. THANK YOU!!!

Well so much has continued to happen in Brayden’s progress. I’m not sure if everyone saw the last update here. The good news is Brayden hasn’t been experiencing any additional numbness in his fingers. The trip to Little Rock quickly had a scary start. You may have heard about the 3 semi trucks involved in a bad accident in Russellville early that Monday morning. We were literally less than 1 exit length behind that wreck. One of the drivers fell asleep at the wheel, hit another truck and had a very sad ending. We were stuck for an hour and a half wondering what could have happened. When we finally drove past it was surreal. The guard rail had been broken off the top and this huge semi had gone off the road and overturned and had caught fire. Apparently there were concerns for hazardous fumes burning so the interstate was shut down for a while. We were so thankful for protection and even though we were late, were glad we were arriving safe and sound. Brayden was happy to be back and see all the familiar faces after the last 2 months with weather preventing his visits. His Oncologist was so happy to see his hair coming back in! He looked closely for bald spots and was happy with how consistent his hair was. I guess that’s another thing we didn’t know was possible that it doesn’t always grow back all over. We knew it could be completely different, but didn’t realize the baldness in some areas could potentially be permanent. The thing I’ve been loving is how baby soft it is! If he thought I kissed his bald head a lot, I definitely can’t stop rubbing and kissing his soft, soft hair! He’s looking so much more healthier with his eyebrows growing back in too. What a big difference. Thankfully Brayden’s counts were high enough to receive his chemo dose and we were back on our way home. It’s amazing to me his counts haven’t dropped so low that he has had to skip chemo. Like I said before, it’s surreal to now wish for chemo. As his local Nurse told me, we’re working for a cure here and that’s the most important thing. I still get nervous about low counts but now will be more nervous if chemo has to be skipped. They did raise his dose after the first month to keep his counts in control. They don’t want to give the cells too much freedom to go crazy and produce too much on its own. He’s continued to respond well.

This past week he finished up his monthly round of steroids. The higher counts meant more freedom again. With the beautiful weekend, we visited parks 4 different times! It was an incredible gift. He was thrilled to get to spend some time with friends and enjoy a picnic too. Hershey joined us as well and we knew she was happy to be out for so many hours from the house. The fresh air and sunshine did all of us a ton of good! None of us wanted to go home. This round of steroids didn’t affect him like last time with the 15-16 hours of sleep. He’s still working on building up his endurance. Especially after the weekend at the parks, he was so sore. We’ve been doing more stretches and walking and trying to build up his endurance. I know it will take some time and he’ll have to be patient. His weekly chemo locally went well also. As we expected, after a week of steroids his counts were higher and his chemo went well. He’ll have the weekly chemo Methotrexate given for the next 2 years, and monthly he’ll continue to have Methotrexate and Vincristine. He has two more weeks before our return trip to Little Rock, where this will mark the end of 1 round of Maintenance Chemo. I calculated up he has 10 more of these rounds to complete over the next 2 years before he’ll be done and celebrate his last chemo.

This next trip to ACH brings many good things! We’re hoping upon the trip home Brayden will begin back at school! To say he’s excited is an understatement!! I think that new level of normalcy will be a blessing but I'm also so very nervous. He goes from excitement and laying out his lunchbox and backpack to being apprehensive too. It's been a long time and I know it will be good for all of us, but it will certainly be a huge transition as well. Thank you all for your continued prayers and we hope to be able to thank each one of you in person some day!! Now back to celebrating the Birthday Month!!!

3 comments:

  1. Happy Birthday all month long, Brayden! Make sure to check Facebook for some photos I posted of the picnic/park outing. How great for you to return to school soon....VERY exciting!!! Dude, you are a blessing in our lives! We love you and look forward to seeing you soon! Love, Amelia, Eric and Andrew

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  2. Happy Birthday Brayden all month long!!!! We are so proud of you!

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  3. Happy 10th Birthday my sweet boy! You are loved beyond words! Hugs,


    Nini Nett

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