Jones Family

Jones Family
November 2009

Wednesday, March 30, 2011

Birthday Celebration Continued

Brayden's birthday festivities continued with his trip to the local oncology clinic for chemo after school. His sweet Nurses surprised him with a procedure room all decorated up with balloons, a cake and candles & a gift! Even while having his weekly chemo, the birthday festivities were a great distraction. He loved the cake and chowed down to celebrate. The gift they so sweetly got for him was a new DS game he's been talking about for days! He even replayed the commercial with the game on it several times for me. It's all he talked about! So when he opened it, he was SO happy and SO surprised! Thank you to each one of you for all you did to make Brayden's birthday special.

Brayden's counts have been a little higher than we'd like. Even after increasing his chemo, I've been wondering why they haven't dropped more. They did come down some but not in the safe range yet. I'm wondering when we go back to Little Rock if that means they'll have to increase his chemo again? Anyway, other than his counts being a little too high (and not wanting the cell growth to get so crazy that the Leukemia comes back) his other stats looked good. He had developed a nasty cough and some drainage out of the blue so we were worried about that.

After chemo, he wanted to go see what to spend his family birthday money he'd received on and then to his favorite restaurant. It's been FOREVER since we've been there and he really had a great time. I was a little worried though when he barely touched his food and wondered if he wasn't feeling well. After dinner, he matter of factly got up from the table and stated, "Well, I finally feel like I'm 11 now." There you go!

We went home so he could open our presents and I took some more pictures and relished the fact I'm the mom of an 11-year-old. Wow. He felt the effects of chemo as the night progressed. We let him soak his feet in this cool foot bath he likes and that (I hope) helps sometimes with his neuropathy pain. The next morning, though, he was pretty yucky. I finally got him to have some yogurt so he could get his morning meds down. Between chemo and the nasty cough and drainage that came out of nowhere, I was glad the preventative antibiotics started and hoped after a few doses, he'd be feeling better and this could kick whatever was going on. Sure enough, by this morning he was back to himself. Dad and I had a few glances exchanged last night while watching over Brayden. Brayden said he felt like he did when he was first diagnosed, so I was worried something was going on. You hold your breath wondering if he'll spike a fever and then the ER rush is on to get him iv meds quickly. Or, if you're over-reacting? It's tough to know what to do other than try to be in tune with how he is and just let him rest as much as he can.

And so it goes. We hope the rest of this week is better for Brayden and more celebrations to plan for his 2-year since diagnosis in a few weeks!

Monday, March 28, 2011

Happy 11th Birthday, Brayden!

Wow...11! I was reading over last year's posts and we were cheerful in what we shared but the emotion of it was very different. This time last year Brayden's counts dropped & we had to cancel his birthday party we had planned with his friends. It was so gut-wrenching to make that decision. He handled it like a trooper and yes, we had a bunch of fun things at home planned to keep his spirits high. One year ago he had just finished his first round of Maintenance chemo and spent his actual birthday in Little Rock. It was the first time he finally got to see the Capital building up close. All the spring flowers and trees blooming brightened our day. The day after he spent in his Radiation follow-up appointment, reliving all the emotion, and having a spinal sedation with chemo.

This year...we're SO happy he's been doing well enough to share his birthday celebration with his friends and family. We were sad not everyone could join us, but being back to the same place he celebrated 2 years ago and then weeks later was diagnosed was also emotional. We stayed positive & I tried to stay in the moment. What an awesome celebration! Brayden has come SO far and has been so truly resilient. He has been counting down the days to get to have his Star Wars party we planned to have last year and finally get to use all the fun decorations! He carefully put together all the goody bags and helped me prep all the other decorations. He was insistent we get to the location early so he could help me set up! I told him he didn't have to and that was a 'mom thing.' He REALLY wanted to help so we were sure to get there in time so he could have his fun arranging all the Star Wars stuff and getting everything ready for his friends to arrive. He had helped pick out his cake a few weeks ago and it was so cool!! The cupcakes had little mini light sabers on them!! His excitement of the day was overflowing. The boys had fun playing Lazer Tag and wearing themselves OUT!

He decided last year he had so many things people had blessed him with after his diagnosis that he'd share his birthday with having friends at his party bring toys for the kids at ACH. Since he didn't get to do this last year with his party cancelled, he decided to do it this year. Last week I think he realized what he had committed to and said, "but I'll still have gifts from family, right?" Yes, I'm glad he asked otherwise we'd start to wonder if his wings had sprouted too early! Thank you to everyone who came & shared in this special celebration with us. We can't wait to share the gifts with the ACH kiddos in the Oncology wing on your behalf! We know it will bring a lot of smiles.

We continued the celebration with Brayden's favorite dinner mom cooked Saturday night and Sunday with his favorite breakfast and then homemade sushi yesterday for lunch! Whew! We all need to hit the walking trail this week!!! He was roaring to go this morning bounding out of bed on his actual birth date at 6am! This is his first day back after Spring Break. This time last year was his first day back after a full year off. Wow...I'm bummed he'll have chemo today again, like any other Monday. But his awesome Nurses are what make the chemo seem not so bad. It's so great seeing them and from what I hear, they have a few things planned. Tonight we're hoping his counts are good enough for him to get to go to his favorite restaurant we haven't been to in ages. Then he'll finally get to open presents from Mom & Dad.

Brayden, we're so proud of you! You have SUCH a good heart and you are such a fighter. Even with all the adversity you face, you take it and persevere and rarely complain. Your positivity and outlook constantly teach me each day. We're so blessed to have you as our son. I hope you never forget that we're with you all the way, buddy. Still, not a day goes by that I wish I could carry this burden for you & take the pain and hardship on for you. My heart will never be okay with having to watch you endure all that you have in these nearly 2 years. I continue to learn that I am not in control and am reminded that you are only mine for a time and that you are a child of God and I have to trust you to Him. Know that you are NEVER alone with Him in your heart. Thank you for all your laughter & goofiness! I promise to keep being silly too if you keep laughing WITH me and not AT me! Happy Birthday, sweet boy! To the best of ALL the sons!

Friday, March 25, 2011

Good News!

We received an update call from the Make-A-Wish foundation a few weeks ago. It was such a neat call as they checked in to see how Brayden was doing in his treatment schedule. His Oncologist still wants Brayden to be done with treatment before he does his wish. So since his diagnosis began just a few weeks after Brayden turned 9, I don't know if I've adequately expressed here just how frequently his Make-A-Wish comes up. At first I just couldn't imagine that he would get to have this chance to have his wish granted. How neat! But you always associate that with a different scenario--at least I do. My mind immediately goes to those sweet kiddos who are terminal and the emotion just hits you. When his Social Worker saw our reaction early on to hearing that he would be granted a Wish, she reassured us that now the Foundation grants wishes to ALL kiddos who have a cancer diagnosis and endure chemotherapy. Once we understood, then it seemed daunting to answer the question of what he would want since end of treatment was still 3 1/2 yrs away and so much could change with Brayden's likes and dislikes. How little did I know at the time how motivating his Wish would be for him. When times are tough, we always talk about his Wish. Without us prompting, no kidding, it comes up at least once a week. AND EVERY WEEK IT CHANGES!! We smile and have to laugh now because you can get whiplash from him changing his mind. But it is very awesome that he has that ability to change his mind and have this to look forward to. I'm very curious to see by the time he's 12 1/2 what he will end up deciding!! She said she'll check back again on us and hopes Brayden continues to do well!

So we had another exciting call. In January, the Foundation at ACH had contacted us about doing a story for Brayden. They have a quarterly publication sort of like a magazine that goes out to their supporters. My company has been a long-time supporter of ACH and it's always neat to see the things we receive in literature promoting the hospital and success stories. She asked a lot of questions and then we didn't hear anything back. We figured they found another child to feature or changed their minds. Fast forward to last week - I received a call at work from the Foundation. There is an annual fundraiser with many sponsors initially started by Walmart that is held each August with all the proceeds supporting Arkansas Children's Hospital. With my company's sponsorship, it was a privilege to attend last year. It was so emotional reading the material and seeing all that ACH does and feeling such a personal connection and gratitude for all that was being done. The dinner was lovely, decorations so extravagant. There were celebrities and everyone was dressed up and silent auctions and live auctions. But at the end of it all - I was so grateful to everything around me in knowing so personally how it had helped Brayden and how we had been touched by this hospital and how without them...I don't know what we would have done or where we would have gone that night in the ER - when we were 3 days away from losing him.

So - the Foundation each year chooses a Champion Family for their Color of Hope Gala. She told us they fell in love with Brayden's story and loved our connection to the community and said we had been chosen for the 2011 Champion Family! WOW! We are so honored and so amazed at this opportunity to give back. We truly feel that we owe such a debt of gratitude for all that has been done in Brayden's care. We've wanted to give back in small ways to ACH - but never imagined having the forum to give back in such a public way!

They are going to use Brayden's story to promote the event and are also going to have a film crew join us at one of Brayden's upcoming visits to ACH. WHAT!?!? We are truly blown away and certainly intimidated by this opportunity. We hope that through Brayden's story, just as we've prayed, it can help others. We hope it will allow others to see the benefits the hospital can bring and help continue monetary support. So we're pushing aside our fears and intimidation in hopes of helping others! I can't wait to share more here with you...

Monday, March 21, 2011

Birthday Month!

Wow - March seems like it just started and I'm sad to see it quickly moving past. Brayden - wow. He's growing! After missing 2 months prior due to all the crazy snow & winter weather, we finally had our Little Rock appt a couple weeks ago. It was so great to see everyone and have that comforting feeling of being sort of home in some way. We loved getting to see his sweet Nurse, his Oncologist, and his sedation Nurse and all the other wonderful familiar faces. It was time for Brayden to have another spinal sedation where he is sedated for a procedure where spinal fluid is drawn from him to be tested to ensure there aren't any leukemia cells growing in his brain. Injected back into his spinal fluid is chemo meds (intrathecal chemo) to continue to treating those cells. We're glad this only happens once every 12 weeks. He doesn't like not getting to have breakfast or anything to drink those mornings and leaving the house before 5am for that drive, we are always hoping he can just sleep as much as possible until the procedure is done. This procedure also kicks off another cycle of chemo and continues his countdown! We're now down to 16 months remaining of treatment!

We were shocked at the ACH visit to hear Brayden has grown 2" taller in the last 3 months! Of course, we knew with his stronger counts the last couple of months combined with his growth that leads to an increase in his chemo dosage. Dr. S. heard the question and I knew the answer before it was out of my mouth. But I was surprised to hear the increase would be by more than 25%. Brayden did so well during the sedation. We always leave the room during the procedure and usually are back before he's waking up from the sedation medicine. We were surprised he was already awake! He still has to continue laying down for 35+ minutes post-procedure so it doesn't give him a terrible headache. We've heard how nasty those can be. This time, it was more difficult to keep Brayden still and down! He was wide awake and not groggy at all and ready to sit up. Thankfully he made it until the time (as he stared at the clock while we tried to keep his mind off of it!) and was ready for some food! The trip back went well and we did our normal run of getting all the monthly meds filled. It was steroid week where, with his new chemo dosage, is up to 147 pills for that week. He trudged through and thanks to the help of pickles being his craving of choice, literally had to be excreting pickle juice through his skin! He doesn't believe me but it HAS to be true!

Unfortunately, he did have a harder time bouncing back after this chemo round. I'm not sure if it was the spinal sedation with chemo or the monthly chemo round but he was yucky for the first time in a while. It was harder to take, since he's been doing so good for so long, to see him that way. The meds definitely helped those side effects and he rested well, which was I hope helpful to his body to get a rest and keep fighting. It's been an emotional couple of weeks for me that started with him being sick this time. He's been counting the days until his 11th birthday since March 1st, just in case we forgot it was his birthday month! Knowing the calendar then brings a special 2-year celebration since his diagnosis just 3 weeks later is hitting me this year. I've read all the old emails in those first hours and days from 2009 from his bedside at Arkansas Children's Hospital. Wow...I'm speechless. It's truly amazing how our brains work and how reading an email can put you right back in that place emotionally, physically, smelling those smells. During this time we've also found out some amazing news that I can't wait to share about a way we can give back that's really good news. The only thing is answering some questions and sharing has peeled back those layers to the raw emotion of what we endured those first hours, days and weeks. 2 weeks ago while on his way to work, Bryan can't help but always glance over at the hospital and be reminded of that night with Brayden in the ER when he was life-flighted on Angel One to ACH. This day, he called me. It sent such a riveting emotional reaction because this day, Angel One was again on the helipad. 2 years later and in many ways, it seems like yesterday.

We do what we can only do and continue to focus on the positive. Brayden continues to persevere and do so remarkably well. That is one of the incredible benefits of our LR trips to be reassured and reminded he's okay. There's so much that continues to battle on just underneath the surface and we don't want to ignore it but we also work to try to keep things normal for all of us, whatever that new normal is for us. We're worried with the increased chemo his counts will drop. While we know that they need to come down to stay in control of his cell growth so the Leukemia doesn't enter back in, we just are hoping they don't drop too low and he can continue doing the fun things he loves.

He's enjoying spring break this week. While planning some fun activities last week, I mentioned his local Oncology clinic visit today. His reaction just broke my heart. "Monday?!?! But it's spring break!" He just didn't remember it continues and never stops - every week. No rest. No breaks. Even for spring break. I tried to reassure him and say the right words thinking in the back of my mind that I wish he could have a break. I hope my feeble attempt helped him. Maybe with a break from school and schoolwork, he can have plenty of rest this week and combined with planning for his big birthday he'll be focusing on things that are fun and exciting to overshadow everything else. I know that's what we are trying to do too...

Thank you all for your prayers and continued support. I can't wait to share the other exciting news and more about his upcoming celebrations. Our hearts continue to be heavy for others still fighting their battle with relapse - a word we hope & pray we never utter in regards to Brayden. Meanwhile another celebrates with good news of remission. So again we focus on the big birthday month and so much to be thankful for and hopefully the next post we'll be a little more upbeat.

We continue to pray for the protection of Brayden's liver function as it filters out the harmful toxins from the chemo. We pray for the protection of his heart. We pray for his already immune-compromised system to remain strong and keep him protected from outside infections. We pray for his healthy cells to remain healthy and the chemo to continue doing its job in complete healing from Leukemia. We pray for protection for Brayden's spirit as he continues this battle to remain positive and optimistic and to be rejuvenated with even more spirit to fight. We pray for the other families fighting that God would lift them and carry them during those tough times and that they would feel Him holding them and feel His love so close. We pray for the many other children fighting that there would be a cure....and no child has to endure what too many continue to face each day.