Jones Family

Jones Family
November 2009

Wednesday, January 19, 2011

Steroid Week = Stare-a-DROID week

Brayden's made jokes for a while about his steroid pills. There's definitely a scientific reason for everything he takes and we're so thankful for the research that's improved the success rate for treatment for Leukemia. Our family can all agree about one thing - WE DON'T LIKE the steroids! There have been MANY funny stories the past 21 months involving the side effects of steroids: our first July 4th platter of deviled eggs neatly in the fridge the night before and the morning after - GONE! I digress...Can you guess what week last week was? Yes, steroid week. It definitely impacts the cellular activity, so we know there are reasons. We just try to not think about the effects of steroids too greatly. We know there have been MUCH more intense dosages and we've endured those. His monthly dose is much more tolerable - just 1 week. It never fails by that last dose at the end of the week, we're all celebrating. But what we've come to realize is the effects of those can last well into the second week. BOOO!!! I don't know if you've heard of users of steroids who abuse its uses, but those side effects remain true even if you're taking it to help combat Leukemia. So we jokingly call them this because it causes Brayden to turn into a droid for a little bit! Poor guy - I can't imagine what all is going on in his body. I know he does his best to stay true to himself. All the chemicals have such an effect and this is so true of the emotional effect stare-a-droids have. The food symptoms are the least of our worries! We do our best with knowing glances between me & Bryan mentally remembering what week it is in his treatment plan, take a deep breath, and move on. Then, before you know it, our sweet Brayden is back again.

The worst thing about this time of the month in his treatment cycle is how sore it can make him. Some days he's sore to the touch. We do back massages and anything we can to help him. But on these days, it just kills me and makes me physically ill to hear him wince and remind me today's when he's hurting all over. I'm so glad those days aren't lingering and move away quickly.

Monday's chemo at the local clinic went well. Of course, with steroid week, his counts were artificially higher than normal. We throw this week out when measuring his counts since we know it's impacted from the steroids. There were some dips to his hemoglobin and platelet measures, but nothing to be alarmed about. It's hard to look at the numbers and not catch your breath for a second and wonder if it's the start of a decline or just a short-term dip. All in all, he's still doing so remarkably well. That's what keeps us going and propelling us forward.

For now, my little weather man will keep a close watch on the snow forecast. It was just too scary cold last time to let him play in it, but we'll have to get out there and enjoy the white stuff if we get as much as they're saying. He's crossing his fingers he'll get some snow...and, of course, a snow day. Some things never change...

Wednesday, January 12, 2011

No Snow Days for Chemo

What is up with it being colder here in Arkansas than in Northern Wisconsin? HUH? This was to be our Little Rock week, but the huge storm that moved in had other plans. Poor Little Rock got dumped with snow Sunday and definitely changed our travel plans for our 5am departure Monday morning. Thankfully, our great nurse at ACH and our great nurse at the local Oncology clinic worked together to ensure Brayden could stay on track with getting his monthly chemo administered here instead. It made things a little crazy with not being sure when we were to leave and worried we needed to make it home before our snow was to hit. Thankfully, it all worked out.

We were really thankful the monthly chemo med was available at the local clinic. Brayden's counts came back really well and all signs were good. He received his chemo dosages and we were so glad this wouldn't mess up our Little Rock schedule either.

I think no matter how much school you miss, at 10, any snow day is still a cause for celebration. The day after chemo can sometimes hit him hard. Thankfully with his school closed he was able to sleep in and get some rest.

This is his steroid week, so it's back to 24 pills per day. He's still a rockstar with knocking them all back. We were a little nervous his chemo dosage might be increased. His counts have been good - but a little too good. In an effort to ensure they keep his new cells in control and keep the leukemia at bay, they are aggressive with increasing his chemo when his system gets too comfortable with the dosage, or, in Brayden's case, he grows and it needs to be adjusted. Thankfully this time, things are staying the same and we'll continue to see how he progresses. We were surprised at how high his counts were 3 weeks ago and then quickly glad when in the following days he started fighting a cold or some sort of upper respiratory thing. We were nervous about his cough moving into his chest and his nurses did a great job of ensuring his lungs were okay. Christmas night was a little scary. I sat up with him expecting any moment he'd spike a temp and we'd have to rush to the ER. Thankfully, his higher counts maybe helped him fight it off and he made it through without a trip to the hospital. The next week we definitely saw the impact to his counts as they had dropped to their lowest point in weeks. Thank goodness!!

It's tough not to be nervous when they're too high and too concerned when they're too low. I'm not sure if there will come a time when our breath doesn't catch right as his blood results are being handed to us.

The New Year brought similar thinking to our small family. It's amazing how 2012 being the year Brayden finishes treatment seemed to loom so far in the distance when he was diagnosed early 2009. Now, as 2011 was ushered in, it was surreal to hear Bryan and Brayden both say separately how it helped 2012 seem not so far away anymore. It's never far from our thinking. And here I thought I was the only one who seemed to keep considering what 2011 meant to us in terms of Brayden kicking chemo for good.

The past few months have been difficult in hearing of so many at ACH losing their battle with pediatric cancer. I can't wrap my brain around that. Brayden and I were half listening to the news the other night when he heard about a memorial service for a local teenage girl who lost her battle with leukemia. The look on his face was so painful. We've tried to protect him from the realities of cancer. It's one of the things we were so grateful for in the beginning...childhood innocence and ignorance about cancer is a blessing. Kids like Brayden don't have a preconceived idea in their minds of what the fight is like. We're praying for those newly diagnosed in their fight and those who have relapsed who have touched our lives since his diagnosis and pray Brayden continues to be shielded and protected from that possibility.

All in all, we have so much to be thankful for. Brayden continues to march on through his treatment so strong. Our family marveled at how healthy he looks in comparing our Christmas card this year to just one year ago. Thank you all for the impact you've had on our lives. Thank you for continuing to pray. We're reminded of you each day when we walk to Brayden's room and see his prayer map on the wall. You mean so much to us!!!

In the meantime, it's back to studying for school and trying to stay warm as my fingers are going numb as I type!! BRRRR!!! We're ready for spring....and counting down even more the 20 months until Brayden's LAST CHEMO CELEBRATION!!!!!!!!!!