Jones Family

Jones Family
November 2009

Monday, March 29, 2010

Our 10-year-old

So weird...still can't get used to this! I feel so old! I've really been reminiscing with Brayden over the days when he was a baby. Such a sweet, happy baby! Always smiling and happy, rubbing his feet together like a cricket when he would eat. He rarely cried and the only way I knew he was awake from his nap is when I'd hear him playing! I'd love opening that door to seeing his big grin greeting me above the bumper pad in his bed. Oh, where do the days go? He's been eating up the memories. Yes, we have scrapbooks, but he's actually been allowing me to be a bit mushy and I'm loving it!!

We had a big time eating a fun dinner in the hotel room, playing games and watching some tv to finish out Brayden's big day. NO ONE slept well. We were so miserable in a different hotel. It was too emotional to be back in the one we had lived in during Radiation, but this one was just not good for anyone to get rest. Nevertheless, we pressed on this morning. Sedation mornings are never fun. I think the not getting to eat part is even worse when he KNOWS he can't eat. A normal day, he might not even be awake yet! But a sedation day is torture. It was great getting to see his sweet Sedation Nurse. She was too sweet in bringing him a birthday gift. She's too partial to Brayden and he's figured this out. So when we heard who the Dr. would be for his Sedation procedure, Brayden was excited. This is a fabulous Dr. who had worked on Brayden so much while in the PICU. We saw him finally a few months back and finally realized through some of his words how bad things had been in those first days. Anyway, Brayden loves him (we do too) and Brayden was excited to hear. Suddenly, I look over and his Sedation Nurse has phoned him in alerting him the procedure is ready to go and the green light for him to come over...when she hands BRAYDEN THE PHONE!!! My mouth dropped. Brayden says, in a very 10-yr-old voice trying to be 20, "Yes, this is Brayden Jones. I'm ready for my Sedation procedure please." I hear Dr. X howling with laughter on the other end of the phone. Oh no. Now not only does Brayden get leeway with tricking the machines, applying his own connectors, playing with the breathing mask, he's now PHONING IN HIS OWN PROCEDURE?!?! We love how much they love our sweet boy.

Brayden's counts were great today as we said good-bye to Round 1 of 11 for Maintenance cycles. We were glad there were no interruptions to chemo for this typically tough first 90 days. But we remember Brayden is anything but typical. His sedation procedure went well and we realized again from another nurse how thankful we are to have the Oncologist we have...when understanding how other procedures are handled with other Oncologists. He definitely is getting superb treatment and we are SO thankful. Dr. S is thinking his extreme leg pain is a result of the Neuropathy worsening or the medicine not able to control it as much. When you think about it, it has been a year that this dosage has worked. We could have had to drop the Vincristine chemo med that causes the Neuropathy, but without it, a cure is so much more difficult to achieve. So we're increasing his medicine dosage to help the Neuropathy and after a very rough day, he's resting also with a pain pill. For Brayden, that's incredibly rare. We're definitely hoping and praying this helps give him some relief.

Brayden's Radiation follow-up was surreal. He admitted it was strange to be back. I was surprised he didn't want to go to the back treatment rooms to say hi to the team that worked with him. But I totally understood. After his check-up and some laughs, he was happy to be out of there and on our way again.

My favorite part of this new 10-year-old methodology is 'Must I?' I swear, if he calls me Mother, I'm gonna cry. But after nearly every request I made of him today, it was promptly followed with, "Must I" I blame it on Little House on the Prairie. I can't keep a straight face when he says it, but it sure makes him sound older than 9 when he says it.

Tonight after the arduous drive home, we finished the final prep work for his official return to school! Tomorrow is the big day. It feels like the 1st day of Kindergarten with all the butterflies and anxiety. For me...not him! Backpack is packed and set out, clothes are prepped and ready, lists are made, but I'm not sure I'm ready for this. I know it's going to be a GREAT thing. I've got my camera ready and am SO happy for him to have this opportunity to return to school. It's been so long and I'm really happy for him to have a little time to remember what it's like to be in 4th grade. I'm glad he'll have the whole 4th quarter to be there with his friends. I do hope he doesn't try to hide his struggles. He has a tendency to not let others see the ways he is held back, especially with the Neuropathy and his endurance. I know his need to fit in and be his old self will be strong so my hope is he is happy to meet them where he is today and doesn't over-compensate. But he comes from a long line of over-compensators! Poor thing! Anyway, we better close with rest for all and the big day coming tomorrow. I'll work to post an update and some new pictures of all that hair coming in soon!!!

Sunday, March 28, 2010

Happy 10th Birthday!

What a year...what 10 years! It's remarkable to me to think I have a son that's ten today. Brayden - I meant every word that I said in your card. You are such an amazing boy and your Momma still - and always will - think that you are the BEST of all the sons! We've had an amazing birthday week. Although limited to outdoor activities, we've still made time for practicing golf swings in the front yard, watching a birthday DVD at home of "The Blind Side" (so good) and having a mini celebration at home this morning. Brayden didn't waste any daylight on his big day! He watched the clock anxiously until the exact moment of his birth. He gave a big cheer in the car when he was 'officially' in the double-digits. Wow. Using these new digits, he began new calculations for the upcoming milestones in his life. 16...driving. Whoa...I just want to slow the clock just a bit and breathe in these moments.

This morning he had his celebratory birthday breakfast. After enjoying his new movie and special dinner last night, he enjoyed another movie while mom got ready. After sending him off to his room, he was able to come back out EXACTLY 10 minutes later. (thank goodness the tape held or he may not have given me one minute more!) We had some decorations and balloons ready for him with wrapped gifts and a special Golf Theme. He had a 3-D golf ball cake and after dad directed him in from his room blindfolded, his expression was awesome. He had a great time opening his gifts. Dad found a great deal on a golf bag and some clubs at a pawn shop about a month back while coming back from a road trip. Brayden has been BEGGING for them at least twice a week. It's been hard for Bryan to not slip up reminding Brayden he was cleaning them up to sell. So the sheer joy on Brayden's face to see that was for him was awesome! Dad got him his first golf glove and some practice balls of his own, and now he's ready for the day they can officially go on their first 18 together! (Mom is dreaming of uninterrupted scrapbooking time on those father-son golf outings!)

We had to wrap up the festivities and head out on the road. We're now in Little Rock and about to get some dinner. It's been wonderful just to take it all in today. After hearing Brayden beg almost 1 year ago to see the Capital building outside his room at Children's, we were so happy to fulfill that wish for him today. The flowers were SO beautiful planted all around the building! It was such a full-circle moment for me. I remember those nights looking out of his room at the lit-up Capital building and he was just begging to go see it. I promised him we WOULD go see it but he had to work hard on taking care of himself so he could get better. I remember the feeling of wishing we could just sneak out and go do that without hesitation. That feeling of being trapped and not knowing what the future would hold and screaming inside that it would happen...that he could really get to go someday. Not knowing when or how long away it would be...but still wishing and pleading for that day. It was a beautiful moment to take it all in and get some of those memories on film today.

We have more lists of wishes after he starts on steroids tomorrow night and his counts tick up. It will be a VERY full work week for Mom & Dad, hopefully a return to school for Brayden, and then an awesome Easter long weekend with getting to see family. We're going to make the most of each afternoon/evening this week for more things he wants to do for his birthday.

I'll post some pics soon of an incredible gift he received from sweet Ken & team at Crossmark on Friday. We went after work and Brayden's reaction was priceless! He was gifted with a shadow box set with an autographed football from Dallas Cowboys player Marcus Spears! I was so proud of him and how thankful he was and how amazed he was at such a gift. It meant so much to him. Thank you to Ken & the team for making this happen for him!!! He also was able to have lunch with sweet Korey, our Red Cross contact, as we worked on finalizing details for his second Blood Drive. More details to follow soon!! Thank you to sweet Korey for such a lovely lunch and some yummy sushi! Brayden was SO happy to finally get to go back and enjoy one of his favorites! Thanks also to Nini Annette for helping out so much on Brayden's Spring Break. Even though we were limited on what we could do, thank you for playing and helping and doing what you do best!

I better run. We've got a big day tomorrow. Please say a prayer that Brayden's spinal fluid will remain clear of any Leukemia blasts as he undergoes his sedation for chemo. He'll have 2 other chemo meds administered through his port. We want to ask questions about all the leg pain he's been having and are praying it isn't anything that will interfere with his progress or be permanent. He also has his 3-month Radiation follow-up visit, so we pray that is uneventful for him. It will be quite emotional returning. Looking back at pictures recently, I realized it was during that time there was no denying he was another pediatric cancer patient and that moment just took my breath away. We pray tomorrow is uneventful overall and we have safe travels home to continue the Birthday Week festivities.

I don't want to take a moment for granted today. It's a truly special day. When our lives were frozen in time last year, a birthday celebration seemed so far away and so uncertain. It's truly a celebration today and one that we hope and pray we never take for granted. We are SO proud of you, Brayden! Keep smiling, keep wishing and keep that sweet spirit!!

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!!!

Tuesday, March 16, 2010

Group Hug

I’m a little sad today, so I’m going to try and focus on the positives. Yesterday Brayden had his weekly chemo at the local Oncology clinic. That’s when they check his blood counts first and if they’re high enough, he receives his IV chemo for the week, Methotrexate. This is the one they increased the dosage of after his first month. The goal is to keep his counts above Neutropenic stage but not allow them to go too high where it risks his cell growth getting out of control in order to keep the Leukemia cells from coming back. The good news is Brayden’s counts were barely just high enough to receive his chemo. But they are just a handful of cells enough before he’s Neutropenic again. So we’re back to implementing all the procedures to keep him protected from having a secondary fever. Along with that, had to make a tough decision and cancel his birthday plans. It was a hard decision, but we know we need to first keep him safe. We’re brainstorming some alternate plans and see what we can figure out. But we’re all a little disappointed. Brayden is putting on a brave face.

He’s had a very rough couple of days. His legs are giving him a lot more trouble and he’s having a lot of pain in them. We’re hoping his Neuropathy isn’t getting worse and it’s so hard to see him in pain. Certainly we hope tomorrow is a better day for him after he had some nausea today as well.

We’re keeping our fingers crossed his counts recover enough to still receive chemo next week. I know he’s looking forward to Spring Break next week but especially the week after when he’ll be back on steroids again and can get out a bit more to enjoy his birthday week and Easter week. We’re so excited about some family time Easter weekend that will give us all a boost.

Thank you all for your continued prayers for Brayden. I know it can be a discouraging time right now with having to take isolation precautions for him to keep him safe. The pain in his legs can really wear him down and just cuts Bryan and me to the core to see him in pain. Bryan said it’s almost like his body started catching up since January with what it’s been enduring the last 10 months. He’s now starting to really show the effects when you see him walk and how his mobility is a bit limited. We just pray his heart and spirit stay protected from the emotional impacts of this journey and that his happiness and joy continue to bubble over. We all enjoyed a group hug earlier and are hoping for better days again soon.

Saturday, March 13, 2010

Birthday Month!

Yes, in the Jones house for years we realized celebrating 1 day each year just isn’t enough. This may have began when Mom was still pregnant with Brayden and wanted more of Dad’s attention. But that’s a story for another day!! I think the birthday month celebration may also be because we were told for weeks Brayden would come early. So my initial due date of March 17th was thought to be so far off! Recently I told Brayden about that and he was bummed thinking how cool a St. Patrick’s Day birthday would have been. Ah, how your mom too wishes you had come on time and not waited another 2 weeks!! How little did we know he would barely make his entrance with only 2 days to spare before the next month of April. So I think it’s fitting we celebrate the whole month of March for Brayden’s big celebration. This year, more than any other year, will truly be a celebration!! We’ve got some fun plans in place. Brayden heard of some other kids who decided to not have birthday presents, but ask for donations for AR Children’s Hospital instead. He knows how much time we spent there and how the little things helped our visits to be more comfortable. He knows how blessed we were with so many gifts to him during that time and I’m so proud of him for unselfishly giving up his gifts to help other children who may not have such a big support system and we can bless them together! We’re also planning another Blood Drive, so all those who donated in December, it will be time to give again! We want to do this to honor Brayden’s Journey and celebrate him! Please watch for the date to be posted VERY SOON!

I was recently reading back over my first posts on this blog. Whoa. It takes you right back. It’s amazing to see how far we have come, especially Brayden. Those first few days were so uncertain, so scary. We weren’t sure if the tumor in his chest wall would shrink or if the chemo attacking it would cause it to break up and shred his liver and kidneys and cause life-threatening effects. We weren’t sure if his lung would go back to normal after having a chest tube in place for 4 days. We didn’t know if his white blood cell count would respond and drop enough. We didn’t know if his heart had suffered damage or would be strong enough to endure the coming months and years of chemo. There was more we didn’t know, but what we did know was that we were surrounded with love and support from so many, with prayers being sent up on our behalf. We knew God was with us and we KNOW he carried us during those unimaginable days I still can’t bear to go back and reflect upon. THANK YOU!!!

Well so much has continued to happen in Brayden’s progress. I’m not sure if everyone saw the last update here. The good news is Brayden hasn’t been experiencing any additional numbness in his fingers. The trip to Little Rock quickly had a scary start. You may have heard about the 3 semi trucks involved in a bad accident in Russellville early that Monday morning. We were literally less than 1 exit length behind that wreck. One of the drivers fell asleep at the wheel, hit another truck and had a very sad ending. We were stuck for an hour and a half wondering what could have happened. When we finally drove past it was surreal. The guard rail had been broken off the top and this huge semi had gone off the road and overturned and had caught fire. Apparently there were concerns for hazardous fumes burning so the interstate was shut down for a while. We were so thankful for protection and even though we were late, were glad we were arriving safe and sound. Brayden was happy to be back and see all the familiar faces after the last 2 months with weather preventing his visits. His Oncologist was so happy to see his hair coming back in! He looked closely for bald spots and was happy with how consistent his hair was. I guess that’s another thing we didn’t know was possible that it doesn’t always grow back all over. We knew it could be completely different, but didn’t realize the baldness in some areas could potentially be permanent. The thing I’ve been loving is how baby soft it is! If he thought I kissed his bald head a lot, I definitely can’t stop rubbing and kissing his soft, soft hair! He’s looking so much more healthier with his eyebrows growing back in too. What a big difference. Thankfully Brayden’s counts were high enough to receive his chemo dose and we were back on our way home. It’s amazing to me his counts haven’t dropped so low that he has had to skip chemo. Like I said before, it’s surreal to now wish for chemo. As his local Nurse told me, we’re working for a cure here and that’s the most important thing. I still get nervous about low counts but now will be more nervous if chemo has to be skipped. They did raise his dose after the first month to keep his counts in control. They don’t want to give the cells too much freedom to go crazy and produce too much on its own. He’s continued to respond well.

This past week he finished up his monthly round of steroids. The higher counts meant more freedom again. With the beautiful weekend, we visited parks 4 different times! It was an incredible gift. He was thrilled to get to spend some time with friends and enjoy a picnic too. Hershey joined us as well and we knew she was happy to be out for so many hours from the house. The fresh air and sunshine did all of us a ton of good! None of us wanted to go home. This round of steroids didn’t affect him like last time with the 15-16 hours of sleep. He’s still working on building up his endurance. Especially after the weekend at the parks, he was so sore. We’ve been doing more stretches and walking and trying to build up his endurance. I know it will take some time and he’ll have to be patient. His weekly chemo locally went well also. As we expected, after a week of steroids his counts were higher and his chemo went well. He’ll have the weekly chemo Methotrexate given for the next 2 years, and monthly he’ll continue to have Methotrexate and Vincristine. He has two more weeks before our return trip to Little Rock, where this will mark the end of 1 round of Maintenance Chemo. I calculated up he has 10 more of these rounds to complete over the next 2 years before he’ll be done and celebrate his last chemo.

This next trip to ACH brings many good things! We’re hoping upon the trip home Brayden will begin back at school! To say he’s excited is an understatement!! I think that new level of normalcy will be a blessing but I'm also so very nervous. He goes from excitement and laying out his lunchbox and backpack to being apprehensive too. It's been a long time and I know it will be good for all of us, but it will certainly be a huge transition as well. Thank you all for your continued prayers and we hope to be able to thank each one of you in person some day!! Now back to celebrating the Birthday Month!!!