Jones Family

Jones Family
November 2009

Saturday, October 20, 2012

Whom Shall I Fear

Chris Tomlin was being interviewed Thursday morning by our local radio station. His message & story behind this song stopped me in my tracks. With so much fear & stress & worry for Brayden's tests on Monday, this brought tears to my eyes with a wonderful & much-needed reminder. Here are the lyrics....It hasn't been released yet (November). But my sweet Momma sent me a link to listen & see the lyrics here. Click CHRIS TOMLIN's WHOM SHALL I FEAR...

Verse 1: You hear me when I call You are my morning song Though darkness fills the night It cannot hide the light Whom shall I fear

Verse 2: You crush the enemy Underneath my feet You are my Sword and Shield Though trouble lingers still Whom shall I fear

Chorus: I know Who goes before me I know Who stands behind The God of angel armies Is always on my side The One who reigns forever He is a Friend of mine The God of angel armies Is always by my side

Verse 3: My strength is in Your name For You alone can save You will deliver me Yours is the victory

Chorus: I know Who goes before me I know Who stands behind The God of angel armies Is always on my side The One who reigns forever He is a Friend of mine The God of angel armies Is always by my side Whom shall I fear Whom shall I fear

Bridge: And nothing formed against me shall stand You hold the whole world in Your hands I’m holding onto Your promises You are faithful You are faithful You are faithful

Chorus: I know Who goes before me I know Who stands behind The God of angel armies Is always on my side The One who reigns forever He is a Friend of mine The God of angel armies Is always by my side

Wednesday, October 17, 2012

Prayers & update

We definitely felt bathed in prayers yesterday evening. It was such a different atmosphere for our little family than the night before. We're so grateful and appreciative for all the prayerful support. I've said it again and again since Brayden's diagnosis....there's no question God has held us many, many times when it seemed too difficult to make it through on our own. I can't imagine Brayden having to face all that he has without the foundation of faith and the same is true for us as parents. We each felt God's peace so strongly last night and instead of being overwhelmed by fear & uncertainty, we were able to be peacefully at rest. Being able to talk about things with my husband without breaking down was a huge step! We're trying to plan for Monday without planning for the worst and that's a challenge. There's still the worry there, no doubt. It's almost harder now because we're not as naive about it all. Before, we didn't know what we didn't know. Now, we know more than we wish we did about the awful effects and stories from other parents about relapse. We're just praying everything's okay. Honestly be completely, brutally honest - it's an awful time for us. We're trying our best to be strong for Brayden but Bryan & I aren't doing so well. We're trying not to crack. The stress, fear, worry is almost overwhelming. Bryan & I are both so anxiety-ridden, it's insane. We're both trying to be positive. I'm scared for Brayden and our hearts keep breaking for him. Since his one request for this week was to see his cousins, we pulled together some fun family things that hopefully he'll be up for. We're trying to do some of his fun things at night & this weekend before Monday. Being a planner, I don't want to not plan but it's hard not to go there prepared yet planning for the worst is really what that would mean. So we're hoping with family fun & some good times for Brayden combined with a normal day tomorrow at school will help encourage him.

Tuesday, October 16, 2012

Please pray....

Please forgive the length of this message....I am not good with brevity! But I hoped having more details will allow each of you to know how to pray & understand Brayden's needs. I think you all know of Brayden's 3 1/2 year battle with a rare form of Leukemia. He's persevered & had so much resilience and fought with such grace & love for God being prayerful & steadfast in faith. We couldn't be prouder of him! Shortly after his last chemo in August, we were sent to a specialist for his kidneys. We've been battling that in prayer as well. Yesterday was ANOTHER trip. We were overjoyed after the 3rd round of tests this time yesterday, the Urology specialist has determined Brayden won't need surgery on his kidneys! He will still have to be monitored closely but we were praising God for his right kidney function to still be there and not to have to put Brayden through any more pain. That news was quickly overshadowed when we went to see his Oncologist. Brayden has struggled since his last treatment with the lasting effects of chemo & radiation for those 40 months with his legs & other effects he works to shield others from. But we've been growing in our concern & worry about his headaches, nosebleeds, & suddenly last week....bruising. For a family who's been toe to toe battling this monster, those are things that send fear through you no matter your strength of faith. His Oncologist shared with us his concern in some "abnormalities" in Brayden's blood work results from yesterday. He was very cautious & tentative with his words in front of Brayden and has always been positive with us. It took everything we had to hold it together in that room & be strong for Brayden. Just hearing that his Oncologist was 'concerned' knocked the wind out of us. We go back to all we pray & ask for prayers. So many (more than we even know) have stood in the gap for us & for our family in prayer the last 40+ months. We know there are so many that have a special place in their hearts for Brayden. We just ask again that you join us in prayer for Brayden. We have to return next Monday to ACH for a battery of tests - the same ones that first confirmed his diagnosis 3 1/2 years ago. Brayden is keenly aware of what this could mean....we just celebrated having his last of these tests in August & didn't think we'd have to have these again so soon. Next Monday at Arkansas Children's Hospital, his Oncologist will perform a chest x-ray, sinus x-ray, bone marrow aspirate, and spinal sedation to check his spinal fluid (brain cells) to see if there are any relapsing Leukemia cells. It's hard to even type the word 'relapse.' I've been too scared to say it, much less type it, since April 2009. It's every parents nightmare for their child who has battled this. The drive home was very difficult. We were trying to hold it together & be strong & be faithful for his healing, as we've always been. I keep telling God, just about the time I think I've learned the lesson of how to put ALL my faith & trust in you, I realize I'm still a baby at this concept. I guess as a parent, I don't know how Abraham ever did it! To lay our child at the feet of Jesus is more than I'm able to do! Our love for them is so great & I know they are never ours - God's only given them to us for a time. But it's breaking this Momma's heart.... I'm not sure what the rest of the week will bring since he had a really rough night. I want him to have normalcy. But we are gathering family & trying to find a couple of special things to do before Monday. I don't want to even type out what all of this will mean but those tests all have to come back good! No trace of Leukemia blasts, all healthy & normal cells, no irregularities in his lungs, chest, brain. I've been up most of the night praying over him & we just ask others believe with us & join us in prayer for Brayden's complete & total healing! He's been through so much already...we JUST heard from Make-A-Wish a few hours ago about his wish coming true....he doesn't know it yet. We really want him to be able to just have fun & not have to worry about his health for once and just be a kid. In His Love, Lisa

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

Monday, September 26, 2011

September...Childhood Cancer Awareness Month

We didn't know Brayden's video was on the Arkansas Children's Hospital website! For their Oncology page, they highlighted Brayden's story for this month and, wow, what an honor. He had some kudos during our trip there for treatment last week and was thinking how cool that he was on there!

His last update looked good. He'd had a hard week the week before with a lot more nausea, headaches, stomach pains, leg pain and just overall feeling horribly to where he wasn't having his meals or able to rest. We were going back to the old days of back to back medicine and not letting the anti-nausea meds wear off. We were really so worried. He'd been doing well for so long and getting thrown back into worry with what was going on was so overwhelming. Were the cells back in his brain? Was something else going on under the surface? It was almost a relief to have another mom in the waiting room ask me the same question while at ACH. Her little one, diagnosed a month before Brayden, was experiecing the same things and she wondered if Brayden was! We both asked Dr. S about it and sure enough, it's more common than we realized. After 2 years of so much chemo, it kind of catches up with their bodies. We hate that he's had some tougher times but so relieved to hear everything looked okay. We were definitely excited to be reminded that within 2 months of his last treatment how much better he's going to feel! We're hoping that some new meds and some change-ups will help Brayden feel better and help endure these harder times. So another month down...truding on!

Be reminded of so many who are fighting and how many families are affected...over 12,000 families each year being given that awful cancer diagnosis for their little ones. One year...our hearts still ache for those who've lost their battle and we stand beside those who continue their fight. Help remember them in prayer...and as Brayden said, keep praying that a cure can finally be found.