Jones Family

Jones Family
November 2009

Thursday, August 9, 2012

Golf for ACH

What a day!! I'm so grateful to work for companies that have always been such generous sponsors for Will Golf 4 Kids. Even before Brayden's diagnosis, it was our favorite event of the year. After his diagnosis, the reality of all that ACH does hit closer to home than I ever imagined. Suddenly the participation in the Will Golf 4 Kids golf event & Color of Hope Gala showed me first-hand all the good that comes from the generous donations of our community.

Our last visit to ACH was so impressive to see the new South Wing AND the highly anticipated Oncology Clinic! It's sad to think how much ACH had outgrown the old Oncology Clinic....and how sad it is that means more kiddos with cancer diagnosis needing their help. But the amazing volunteers and generous suppliers & donors last year contributed for the Oncology Clinic and living, breathing, seeing those donations at Brayden's last chemo treatment & procedures was inspiring. I wish everyone could see & witness this without the diagnosis that goes with it. We're so thankful for more space for the families to sit. Many times our monthly trips to ACH are more than 6 hours long (not including drive time). It breaks our hearts when sometimes walking into the old clinic there weren't any chairs. That's not good to make the correlation why it's so full. The fresh breath that the new waiting room along brought was so neat! Brayden couldn't try out the chairs before wanting to go outside & see the garden. It's beautiful and a fresh start & such a blessing for the families. We're SO grateful for this awesome facility and all the good it is doing for all the kiddos battling cancer, their families & the incredible staff! Thank you to all who helped make this possible!!

So to the golf!!!!! Today was the 19th annual Will Golf 4 Kids event. WOW! We were so thankful to get to golf as a family. Brayden just kept saying that if he gets to play next year, he'll be almost a year without chemo! We got there very early & were so blessed with a break in this awful heat & some cooler, beautiful weather to start the morning. It was so wonderful to see so many familiar faces from last year's event when Brayden was the Champion Child. There are MANY ACH workers that spend an enormous amount of time & work to make this event happen. The local volunteers & organizers never cease to amaze me to put together such an amazing event. We had such a great time getting to golf & Brayden did amazing! His stamina was still a little low & he's pretty sore tonight, but it's a good kind of sore and a good pain to have. He'll push every time to play golf because he just loves it so much & it's such a great opportunity he doesn't want to pass up!

Here are a few pictures from today! We're excited tomorrow to attend the Color of Hope gala, only this year, as participants and cheer on the new Champion Family. Brayden said this year he won't be so nervous so he'll be able to eat this time! Bless his heart! We were all so nervous last year to get up in front of that big group that none of us really ate anything! This is such a wonderful event & we can't wait to attend and again celebrate how far Brayden has come & how much we love ACH & all they've done for our family. PS - some of the wonderful volunteers there today took a pic of Brayden & uploaded it to their facebook account. Brayden's pics got more likes than any other post! How neat is that!?!?!? Check it out by clicking here! Happy 100th Birthday, ACH!

Tuesday, August 7, 2012

1 Week to Go!

It doesn't seem possible Brayden is SO CLOSE to being done with chemo after nearly 40 months!!! We weren't counting down so much in the early days to end of treatment. But since 2012 rolled around, it's seemed so much more tangible! He's been planning his last night of chemo for a while. He wants to stay up all night & have all his favorite foods & do crazy experiments with his pills. We've since had to be sure it's safe to do said experiments! But it's so hard to fathom we're really at the finish line. Brayden has been counting down all his 'lasts' in treatment & Dad started a countdown calendar a while back and we're just in disbelief it's here. Friday, August 17th will be his last nightly dose of chemo. No more counting pills, setting the alarm, stopping eating at a certain time & being sure we give him his chemo at the right time, not touching the pills & waking up with worry of "Did we forget to give him his chemo?" That's almost 1200 nights of that behind us. Isn't that crazy to wrap your head around? Or is it just me?

It's going to be so hard to say goodbye to Highland's, the local Oncology clinic. The staff has become our family & has taken such good care of Brayden. After the first year of treatment, we saw them more than the staff at ACH! Each Monday we were there with him excited to see the nurses and that diminishing the reality he was there to have his chemo treatments & the impact it always brought Monday nights & Tuesday's. ACH trips were every 4th week....Highland's every week. We're not going to know what to do with ourselves those Monday afternoons. We're going to miss all those sweet, smiling faces knowing Brayden's name & he couldn't wait to visit with & update them on the latest activities in the Jones family. All those hugs & teasing with his favorite's bittersweet now to be at the end. We'll obviously have to find reasons to go up & say hi & keep in touch to the amazing Nurses & staff that have done so much to keep Brayden safe & healthy (no port infections!) and paving the way to his battle against Leukemia with all the chemo treatments & blood checks & holding our breath on counts each Monday. We are SO going to miss all of them!!

Brayden's had a rough 10 days battling some serious congestion & Mom & Dad praying it didn't turn into pneumonia. We sure are hoping he can kick this last bit & his counts rebound strong so his immune system can return to normal. There's so much more to pray for in the coming days & weeks that I'll share soon. For now....only 6 more days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Saturday, August 4, 2012

We're Baaaaaack!

I'm heartsick I've gotten so behind in posting Brayden's journey updates. We've had some tougher times and it began to be so difficult to be honest with our fears and concerns for Brayden. That's melting away a bit as we're counting down!! 2 weeks from yesterday marks his last chemo! It's so surreal for all of us! In the beginning, it was too hard & painful to think about August 2012 when he would be done that we had to stay focused on the present back in April 2009. Now, somehow, we're here. God's had His hand of protection all the way over Brayden, as he again and again has overcome so much adversity with such a daunting diagnosis.

As we've gotten closer, we've started making more plans & talking more about the last chemo! We're planning an End of Treatment Celebration for him coming up to reflect on all that he has endured & appreciating all of you for all the prayers, love & support! It's incredible to imagine being able to celebrate such a remarkable journey & yet, it's almost here!

We've had some major milestones lately. 2 weeks ago today, Brayden had his LAST vincristine (his monthly chemo), his last spinal sedation (intrathecal chemo to treat the cells in his brain) AND his last bone marrow!! Brayden did SO well! Even with the additional procedure of the bone marrow, the sedation went better than the last few for him! He came out of the sedation well & needed less medicine! We had been holding our breath for this last bone marrow for a while. This would tell us if the Maintenance Phase of chemo had been successful. We were full of disbelief in this anti-climactic moment when we were told his bone marrow was CLEAR! I was wanting to laugh & cry all at the same time & yet kept waiting for balloons to drop from the ceiling! We just looked at each other & did some high-fives & kept repeating the news to each other all the way to the car...trying to make it more real for each of us. This is really it! What we've been hoping & praying for!!!!!!!

So we're in the final days. Brayden's scaring me lately with a nasty cough & hoping it dries up quickly. But we're down to 13 days! Brayden doesn't want to do anything but stay up all night & celebrate his last night of chemo! He's been making a lot of plans for that big night.

As a family, we're extremely nervous about the unknowns that come after chemo. Brayden's neuropathy in his legs will begin to change as his nerve endings damaged by the chemo will begin to regrow & can be very painful. Then his blood work will continue at Children's every 4 weeks. That weekly bloodwork won't be any longer. I can't imagine holding my breath for 4 weeks in between tests! We've heard from other families this can be extremely challenging. Every bruise, every cough, every headache will bring up fears for every family that's been through what Brayden's diagnosis has brought. We'll continue to be challenged with not being led by fear & putting our trust in the One who can continue to carry us through so much uncertainty.

BUT FOR NOW----celebrating the fun & bringing you up to date!

Brayden's Last Spinal, Last Bone Marrow - LAST ACH CHEMO!! July 23, 2012

Brayden's 12th Birthday - March 2012

Brayden's 3-year Celebration since diagnosis with Golf! - April 22, 2012

Brayden Making His Wish! May 7, 2012

American Cancer Society Relay for Life - 3 more Birthday's! June 15, 2012