Jones Family

Jones Family
November 2009

Tuesday, March 23, 2010

1st Day of Spring?!?!

Last year I told Brayden when we saw snow on his birthday, to soak it up because it may be the last time he’ll see SNOW in almost April in Arkansas again! WOW! After Saturday’s snow, maybe I’m wrong? I think this may be one of the few times where we went for a walk in 70 degree temps the day before and were worried about a sunburn to a dumping of snow the very next day! It certainly was pretty, though. Hershey had fun eating up the snow and running and playing in it again. We always love the snow, but this time, I think we were all ready for spring. Seeing the daffodils start blooming last week and some green finally coming on the trees had us coming down with spring fever! So the blast of snow was a complete shock. SO now can we please move into spring? PLEASE?!?! We’re so ready for the drive-in movies, picnics, the park, dinner outside. SO CLOSE!!!

After a week of isolation, Brayden was busy keeping up with school work. He’s been a little bit more active. His legs are still SO sore for him a lot of the time. It’s on our list to ask his Oncologist about to see if the Neuropathy is getting worse or what to do to help him. But it has been good to see him finally getting more active again. We’re making some plans for fun birthday activities for him as soon as he’s able. Also, we’re working on a surprise for him since the 1-year mark since his diagnosis is approaching. We know there is no better way to celebrate all that he’s endured and come through than to give back. We have another Blood Drive scheduled for May 12th. For everyone that gave blood last December, we THANK YOU! You can give blood again!!! We want to honor Brayden’s journey and help give back to so many other children who walk this journey too, who have to endure daily blood transfusions, in so many cases. Please be thinking about giving back and keep your calendar open. Brayden will be in school that day, fingers crossed, but we’ll be planning to bring him by after school as long as his counts hold up. My plan is to be there in person to thank each one of you for your generosity. It means so much to our family.

Sunday marked 11 months since his diagnosis. Some will say how fast it has flown by and others say it must have dragged on for us. I think both are true in some ways. It’s unbelievable to fathom how much our lives have changed. I pray it continues to be for the good. We certainly never imagined medicine schedules and being more protective as a mom than I already was, yet this is our new reality. I wonder what a day will look like without having to think again if we did all we could do to protect him, did we give all the meds, and having those constant reminders in the back of my head going on each day. Seeing him with more hair and a bit more energy is so encouraging. But the questions from him still hit me in ways I can never predict. He’s still trying to wrap his brain around 2 years of this schedule. It’s the worst kind of feeling for a mother – to not be able to protect him from that. I just pray that we can continue to encourage him in the right way that he can turn these ashes into beauty for his life with God in his life.

Yesterday Brayden received his dose of chemo, marking the end of the 1st 12-week Maintenance cycle of chemo. He has almost 11 more to go over the next 2+ years. I was in awe that his counts were high enough to receive chemo yesterday. After last week’s numbers, we really thought he might be too low to receive it this week. I marvel at him. He’s made it through the first 90 days and not had to skip a dosage. YEAH! We were cautioned how difficult this could be and how likely colds and fevers, thus hospitalizations can be. What a celebration to realize he has come through yet another hurdle with minimal impacts! We were warned chemo could be skipped, knowing that every time a dosage isn’t given there is a risk for the aggressive leukemia cells to re-gain their hold. Thank goodness for his protection from that and that the chemo has been able to continue its work without interruption.

We’ve got some big days ahead. Brayden’s birthday then a return trip to Arkansas Children’s Hospital. This will mark the 2nd of the 12-week rounds of the Maintenance Cycle, so he’ll have to have a sedation and spinal (lumbar puncture) to continue to the chemo to treat the cells found in his brain. He’ll have 2 chemo meds given via his port. Then he’ll kick off a week of steroids again. We’re excited about Easter weekend and getting to see some of our family. Then just weeks away is the big 1-year mark since his diagnosis. I hope we can properly celebrate his journey. I want him to really see how hard he has fought and how proud we are of his endurance and tenacity. I know one day he will realize how miraculous this journey has been for him. In some ways I want to protect him from that for now. I love that he knows nothing other than fighting and taking each day and that there will be another side to this and that positivity keeps him moving forward. The innocence of children is beautiful and I love that his youth protects him from that deeper level of knowledge that the older ones of us know too well from all that we have seen and heard in our years. So I want to still celebrate that innocence in knowing nothing more than he will fight and win. We want to share this with each of you, in a unique way. Please feel free to send well-wishes or congratulations on a special post I’ll work to do for him. So many of you follow us without us even knowing until we have a question or comment. He would love to hear from each of you and I want to keep this for his scrapbook. His prayer map is still up and serves as an awesome reminder when we walk by it each day. We don’t take any of that for granted and appreciate all the prayers that have been sent up over the last year on his behalf. Thank you to all of you and the extensions of you in your families, friends, Church families, that have and continue to intercede for Brayden. We appreciate each one of you!!!

1 comment:

  1. I just love reading your updates and hearing your positive spirit shine through. Brayden has come such a long way, and I can't believe it's been almost a year.