Jones Family

Jones Family
November 2009

Saturday, September 26, 2009

Beautiful Days

Brayden has had some up and down days this week. But all in all, is still doing so well. After being really cautious this week, we went to get his counts and blood work done on Friday. We were stunned to learn 3 hours later that they are higher than they were 2 weeks ago! Aren't they supposed to be going in the opposite direction? Part of me wants to jump up and down and I am thankful. It's just tough to not be skeptical at the same time. Is there a reason they are high? Isn't it crazy how this makes you over-analyze everything? You can't even take the good at face value. I don't like that feeling. So I tried to push it aside and be grateful that he's stronger to fight off all the germs flying around and hopefully we can get out and enjoy another beautiful day.

I loved hearing him comment on how the sky was so blue yesterday and there wasn't a cloud in the sky. Certainly when you're inside more, you appreciate those beautiful days so much more. Dad took Brayden out to the yard to hit golf balls (the plastic ones?) so they could practice their swings. Nice. He loved that. He also loved getting to go with Dad to the airport and watch the planes, just like the good ol' days. Nini came over yesterday to hang out with him so Mom & Dad could have a much-needed date night out. It was so much fun to feel calmer and more relaxed on getting out of the house. It was a special treat to spend time with my hubby and our friends. When we got home, it was definitely apparent Brayden had enjoyed his time without us too.

We've got some little things planned for this BEAUTIFUL day! We're hoping to take Hershey to the Dog Park and maybe see what's on at the little local movie theater. We just want to do what we can but still remembering to be precautious so we can keep Brayden as healthy as possible.

We leave out bright and early again Monday morning for the last round of High-Dose Methotrexate and our last 4-day stay at Children's - yeah! Brayden's excited and we're hoping to make this one a fun one, yet be so thankful we won't have that long of a stay (we hope & pray) for a while. Then on the visits going forward, Dad can start going with us again!

School is still going well. We haven't gotten the webcams working yet, but we're trying. In the interim, Brayden enjoyed calling in a few days this week to read with the class. We've had to figure out some things like the yearbook picture and are sad to miss a lot of events with the class. But we're so thankful for his wonderful teacher this year who is patient and supportive and we'll keep pressing on to try to get Brayden caught up and hopefully be ready to re-join the class in January.

After this final round of High-Dose Methotrexate, what's next for Brayden's treatments? Well, I thought he had radiation next, but his nurse set me straight! If his counts are high enough, he'll go back Monday the 12th to start the next block of treatment, Delayed Intensification. On Day 50 of this block, he'll have the 8 days of Radiation. I don't want to do the math or look at the calendar. That puts him between Thanksgiving and early December. I started thinking we should probably try to do family pictures before then. He still has some of his beautiful long eyelashes and I want to take a moment to appreciate how far we've all come, how we've held together, and how faithful and optimistic we are about the future.

Hug your family and appreciate the simple, uneventful things that happen all around you. Please don't forget September is Childhood Cancer Awareness Month. There are some awesome opportunities to do things for other children who are battling cancer. A sweet friend of mine pointed out one. Finally, don't forget to hug and love on and appreciate your pets. Our dear friends lost their 5th member of their family today; their adorable Collie. Our hearts just break for them at this loss. Pets mean so much to families and I know for our family, Hershey fills a void for Brayden that Bryan and I couldn't fill. They have such a sweet connection. We definitely are appreciating her even more today and our hearts go out to our friends.

Sunday, September 20, 2009

Football Fever!

Brayden is bouncing back nicely and we're breathing another sigh of relief as we've made it to Day 3 1/2 post-treatment (after the rescue drug last dose) without any mouth sores! Yeah! We've done a LOT of football watching. The Hog game yesterday was SO GOOD! It was nice to enjoy a quarterback who can PASS THE BALL!! We've missed Matt Jones a lot in the last several years, to say the least. In the days of D-Mac and Felix, we were bummed while daydreaming of what could have been with a quarterback that could pass them the ball! I'm just sayin'...

Mom nearly lost my voice cheering last night while the boys were ready to go in their Hog uniforms. They refused to let me take a picture. I wasn't happy with that. They were so cute...father & son cheering on our team. It's just like old times again. We had yummy football food and wondered when the next time will be that we can again walk to that awesome stadium and attend a game in person. It's only happened a couple other times before! So don't get me isn't a regular occurrence at the Jones house or anything! Plus we heard how ticket prices have gone up AGAIN! Anyway, we enjoyed one of the best college games in a long time. If you're going to lose to someone, I guess it's okay for it to be Georgia. Ever since seeing Facing the Giants, we just love their coach.

Today? More football, as the beloved Cowboys are on tonight. Mom is being blaspehmous by getting caught up on emails and blogs after a week without internet access instead of being glued to the tv! So the boys are again cheering everyone on. Brayden has been in full football mode all weekend and has been doing well. We're super nervous with counts that have dipped a bit lower while germs abound everywhere. We've been warned to be a little more cautious for a while. So it looks like we'll be enjoying home. It's been nice to try to rest and recover from a busy week. Coming home always leaves me exhausted. Getting up every 2 hours through the night doesn't leave room for deep sleeps while at ACH. Plus having to get up between 5-6 each morning to shower and get ready for the day left me in a serious sleep deficit by the time we got home.

What's next? Brayden will again get his counts checked this Friday locally. If they are high enough, we'll return again to LR the following Monday for the FINAL ROUND of the High-Dose Methotrexate, while was a 2-month treatment round called Interim Maintenance. Last we heard, Radiation would be next, followed by another 2-month round called Delayed Intensification. He'll have the ugly med 1 last time. I'm not looking forward to it at all after checking the calendar and realizing that could hit during the Thanksgiving time frame. Poor guy. I'll definitely be requesting prayers for his body to be protected during that time after how rough it has been on him in the past. But the good news is once that 2-month phase is over, it's on to MAINTENANCE! Maintenance treatment is given in 12-week cycles for 3 years (from the start of Interim Maintenance). It's definitely more than what we first thought it would be. But we're still hoping and praying that with each treatment, Brayden continues to stay strong and there continues to be no trace of blasts showing up in his blood or spinal fluid. This treatment MUST keep the Leukemia away permanently and that's our constant hope and prayer.

Monday brings schoolwork catch-up again. We were hoping to work ahead more than we have been able to. He was just not feeling well Thursday and I was so thankful he never had to 'emesis.' Lots of special tricks that day to keep it away, but it worked. He's awesome. Anyway, we're off on another week and I can't believe another Little Rock trip is on the horizon, but thankful we can start to see a small glimmer of light at the end of the tunnel.

Thank you to each and every one of you for all of your support. I've gotten so lost in the thank-you's and pray I haven't left anyone out. We have a couple of events coming that we'll be posting about more later. We're close to securing the Red Cross Blood Drive in Brayden's name for a date in December at an AWESOME centralized location. You'll be able to make an appt online in advance so there will be no waiting and we're hopeful Brayden and I will be there to thank everyone! Also, a sweet friend is setting up a spirit night at our local Chick-Fil-A to help with gas expenses to and from Little Rock on all our trips, food, etc. Those trips are so expensive and even though we don't talk about it here, there are so many unforseen expenses that come up when caring for a child with cancer. We're so thankful for her help in this and will pass along more information as it becomes available. I better get back to the boys and get a score update!

Wednesday, September 16, 2009

Day 3 Update

Brayden had a great night last night. His blood work levels at the 24-hr point were good. It showed the Methotrexate levels weren't too high to where they had to raise his hydration, but weren't too low to be concerned that it hadn't been in there long enough to do it's job in fighting the Leukemia. He slept til about 9:30...and have I ever mentioned how Brayden giggles and laughs in his sleep? I got up at 5 to grab a shower and get cleaned up after helping him get settled back. I was sitting in the quiet watching the rain and then heard him. It's precious and makes me smile now just thinking about it again! He will just spontaneously giggle and smile! I wish I knew what he was dreaming about. For now I'm saying prayers of thanks that our prayers that his joyful spirit will be protected from the harm this disease can bring are being answered.

After getting cleaned up, Brayden was excited to get to go to the school here on-site while mom got the room freshened and bed changed. They are so great with the kiddos. We also heard the therapy dog was at the Playroom today, so we'll make a stop and say hello. He's been saying all week how much he misses Hershey. All the folks here are so great. Several volunteers bring in their dogs as a special treat for the kiddos and it's precious to watch their little faces light up! The dogs have such a gentle nature with all the special kiddos here and it's so miraculous to watch them interact with the children and loving on them. The teachers are so encouraging yet patient. They were quick to remind me last time they don't coddle as they scooted mom on out of the classroom! It's really amazing all that they have to offer. We are always blessed with visits from Brother John while here admitted or in clinic. He's the Chaplain for the Unit and I've remarked before how much he must see, as he remembers so many of the names of all the children and never misses a chance to visit with us and see how we're doing. Unlike other units, this one with all the workers and staff develop strong bonds with all the kiddos. It isn't like other floors where they may come and go. Kiddos here can be here for years with consistent visits back and forth. As we continue to learn the staff more and more, Brayden loves the recognition and teasing he gets from them in the halls. Arkansas Children's Hospital really is becoming our home away from home.

I was a little nervous because today is the same day 2 rounds of chemo ago (when he had the spinal) that he was most nauseated. Thankfully, we're not seeing those symptoms this time yet. His sweet Nurse posted all the times in which his blood draws will be coming today and when the rescue drug will be administered if his levels are still too high. Due to post-hydration rules, the earliest he COULD go (if his levels were low enough) would be 10:00 tonight, so it looks like another night here, which we expected.

For now, we continue to be thankful for no mouth sores and are so grateful to see the light at the end of the tunnel for the last round of High-Dose Methotrexate! I'll run for now and probably won't post again until we return home. It's a big day of school work again, lots of drinking to get all the toxins flushed out, and possibly some peeks of sunshine for the first time this week!

Tuesday, September 15, 2009

Behave in the Cave

Brayden had a great night. He slept until 11:30 today! It was a dark, rainy day, perfect for sleeping in. He wasn't feeling too great until 2 today when he finally decided cereal sounded good. Thankfully he's still been drinking well to help flush the chemo. We were excited to get good news about his x-rays: everything was normal! We are thankful to cross that worry off the list. We had to laugh when the Dr. and Nurse were leaving told Brayden to 'behave in the cave!' Definitely one of our new terms! Where we're staying this time is the rooms they used to use that were sealed off for stem cell transplants. Thankfully dad isn't here because we're convinced he'd have to duck to clear the ceilings! It's extra dark (off course without all the lights on) and the staff here lovingly refers to it as the cave or dungeon! I say based on getting through the weekend with only 10 hours of sleep, mom doesn't care what it's called...if it happens to help us rest, sign me up! It was SO nice to have a softer couch than a hard chair like last time.

Brayden had more cereal for dinner tonight, lots more green tea water, and some almonds. He's decided he wants a popcorn and movie night tonight, so I stopped off for a quick update to thank everyone for the prayers about the x-ray and hopefully he'll clear in a good amount of time in the next 24 hours. We're still chipping away at school work. Hopefully we can keep knocking it down more and more! We miss everyone and can't wait to be home. As the last few minutes of the yellow chemo bag finish up, we were high-fiving because he has only 1 more round of this chemo to go! Then radiation and moving on to the next block of treatment. It's nice when we can keep seeing how far Brayden has come.

Monday, September 14, 2009

Quick update from ACH

We made it here today with only a little rain to drive through. Brayden did great with his sedation for his spinal (LP for Chemo intrathecal) and for the first time, he asked me to stay with him during the procedure. I was so reluctant but did it for him. It was terribly hard to watch him so vulnerable. But he had SUCH an awesome team. The same one that was with him in ICU and so many times over the last 4 1/2 months. He did great and I breathed a prayer as they extracted spinal fluid to test. They test it each time to ensure there has been no relapse of leukemia cells. That's so scary to think about but we know it lingers there every time as a possibility and we keep praying that it never is something we or Brayden have to face. He came out of sedation great and we had a good time getting to visit with the team that has come to know him and his history so well and has seen first-hand how far he's come. Everything is still looking positive for him at this stage.

We did get a private room but we're in the dungeon...with no CareHub access for me to do more frequent blog updates on how he's doing. And, no shower in the room - aahh! I've got a plan, but it will be tricky. We're still grateful for more quiet than the semi-private room offered last time. Brayden was happy to get settled into his room. He did have a little nausea later, but I'm glad he's been able to eat just a bit. Chemo is scheduled to start at 9, so that's when our 48-hour clock begins, now that he's been hydrated for 6 hours to prep his kidneys and system for the onslaught of the chemo.

We did have to go for an x-ray this evening. We're praying Brayden's results are positive. He's been having some back and rib pain and we're hoping and praying it's nothing. His Dr. has come to realize if Brayden complains, it must hurt. There are a couple of things it could be, but we'll hold for now until we see the results tomorrow. Just agree with us in prayer that it's nothing.

Gotta run - Brayden's requested another popcorn movie night in his room. Thanks again for the support! We were amazed to meet another Brayden who ALSO has T-Cell! The odds have to be slim. I'll have to request that be a high school statistics problem at Brayden's school! Only 260 kiddos a year are diagnosed with this type of Leukemia across the US. And there's one close to our home! The Brayden's got to meet today face to face and we can't wait to get to know them more. The other Brayden is about 10 months ahead of our treatment and is turning 8 soon, so the similarities are amazing! We're thankful for some support and maybe the boys to feel better knowing they aren't alone in their unique journies.

Happy Grandparent's Day!

I feel awful to realize that we missed Grandparents' Day yesterday, in that we were clueless it was such a special day! Brayden is very lucky to have Grandparents' surrounding him - great-Grandparents too! We love all of you and are so thankful for the love and support. I can't imagine how difficult it must be to watch your grandson endure so much. But you are all so strong and not once have we heard from you any complaints while you shower Brayden with love and affection, encouragement, prayers! Bryan and I are thankful for each one of you and are so blessed that our son is able to grow while always knowing your love is there for him to fall back on!

We are headed out for Little Rock for a bit. Brayden will have a spinal sedation to inject chemo into his spinal fluid and proceed with his 3rd round of High-Dose Methotrexate. We're praying there are no complications with the sedation and that his spinal fluid remains clear. We're praying he's able to drink enough and stay hydrated to flush everything out quickly. We've been so blessed not to have mouth sores yet (other than a few on his lip the first round) and we're praying that trend continues! Dad will be home and this will be another week with just mom & Brayden so we're praying for safe travels and enough activities to keep him busy, high spirits, and plenty of rest for us both!!!!! Mom is waaaaaaay behind in that department!

The speaking engagement went beautifully while watching others work so hard to raise money for Children's Miracle Network. We were blessed to meet some of the most wonderful people! Some who have followed Brayden's Journey here since the first days. WOW! We are overwhelmed at the kindness and generosity of others and reminded how many good people there truly are! We were so excited to have a night out together! This is (I think) only our 2nd or 3rd night out in nearly 5 months so it was nice to smile and have fun and laugh and yet be so moved at the concern of others, their encouragement and kind words to us. Thank you to Tracy & the Crossmark team for your incredible kindness and for allowing us the privilege to share Brayden's Journey with others and help them to be encouraged that each and every penny for CMN is going to SUCH a good cause. It was so great to meet Ken & his sweet wife, Carrie! Brayden LOVED his gift from you! I took pics and hope to send to you soon. You are such a beautiful family. We are so thankful for your prayers and concern and love you showed our family. Thank you!

Well, gotta get going. I'll continue to update this week from Little Rock on how Brayden progresses. Thank you again for all of your prayers while we press on!

Thursday, September 10, 2009

Are you ready for some football?

In our house, fall is in full swing! With a house full of football fans (yes, even Hershey had donned a Cowboy's bandanna, poor girl) we've been very busy! Last weekend with the big College football kickoff (which mom prefers) we had a great time cheering for the SEC teams. Our beloved Hogs played a great game, which we were unwilling to be TRUE fans and pay the $36.95 pay-per-view fee to see! Why bother when you can watch a game on tv and listen to the Hogs on the radio? Then tonight, I have become freshly reminded that the official NFL season has kicked off. Brayden is oblivious. To him, a devoted Cowboys fan, the season began in pre-season. No, training camp! He's been VERY excited and I'm thrilled each year that I grew up a sports fan or what in the world would I be doing now? Oh yeah...probably catching up on housework or scrapbooking or taking a bath. Who has the time?

We've had a full week. Brayden enjoyed a great Labor Day weekend with indoor swimming, eating outside, spending time with friends. One event he had been begging to do - return to the driving range. If you're familiar with his story, the last time he went to the driving range with dad was the day we ended up hearing the awful news something was wrong a few short hours later and began this crazy journey. I thought of this but didn't realize the impact it would have on dad to return. It was hard for him, and I've realized I need to remember he's a strong man, but not made of stone. He's admitted how difficult it is for him each day driving to work past the hospital where he saw his baby boy and wife lift off in a helicopter Life-Flight mission to Arkansas Children's Hospital 4 1/2 months ago. It reminds me how detached I am sometimes about the emotions of it all, while both trying to shield it from Brayden and dealing with it on a daily basis. Bryan is awesome and I'm so thankful for him. He enjoyed playing at the driving range with Brayden, no matter what it meant to him. We both realized a few hours later and into the next day we didn't stop to consider Brayden's endurance in all of this! Poor guy was so eager to hit golf balls, he had some pretty sore muscles the next day from all that hitting and swinging for the first time in a while! He still says it was worth it to get to play.

We all needed that extra rest day this week with Labor Day Monday. It definitely helped me get rested up, give Brayden just a fun play day and dad, well, dad worked and has a lovely garage all cleaned out and helped mom around the house!

This week we hit the grindstone again and Brayden has been doing so much better with schoolwork. We're nearly caught up and hopefully this momentum will continue for him. It's been a tough start, but he's been excited to get to call in to his school and read with his friends again. He's also realized he doesn't want to get behind. We'll keep working hard. My company has blessed us with a new computer for Brayden's classroom! Complete with a webcam for us and for them, we'll be able to try some different techniques with keeping Brayden involved and hopefully allowing mom to have a teaching break from some of the tougher subjects. We are excited to get it all set up and try it next week. WOW! How awesome is the company that I am privileged to work for? What a wonderful gift to help Brayden? And us?!?! Thank you so much to Jeff & everyone at Malt-O-Meal for making this happen. While you're out this week, give our bagged cereal a try and keep buying more! They are a fabulous, truly family-oriented company I'm so eager to support and boast about!

Tomorrow we'll learn Brayden's counts and if we return to Little Rock yet again next Monday for another 4-day round. Bryan and I have been asked to attend a local charity event Saturday night to raise money for CMN (Children's Miracle Network). We're honored to attend and nervous about speaking. We're praying our Journey will help others realize how prevalent childhood cancers really are and that their donations will continue to help fund a state of the art hospital in our area that is actively working to help children each day live better lives. It will be hard as I've teetered back and forth from rigid and professional and the way I would approach this in my career, vs. realizing I need to speak from the heart as a mom and really tell Brayden's story. We are truly so thankful for Arkansas Children's Hospital, to have been blessed with a wonderful Oncologist within the first few hours of arriving in ICU there, who has worked to keep Brayden his priority and fight the aggressive Leukemia that was taking over, and to be blessed with a staff that is so professional, yet reassuring and treating us like family each time we're there. We don't have to worry about traveling hundreds and thousands of miles from home and separating our family while we get treatment for Brayden. For that, we are so thankful.

We've had some scares this afternoon. For the first time in a while, Brayden's been in some pain. He actually asked to take a nap today. I couldn't remember if I ever mentioned this before, but he's yet to have 1 nap at home since being diagnosed! I find that a miracle. I thought he'd be in bed all the time and weak and frail and he's been so strong. But I know today and yesterday have been tougher days for him. I'm praying he remains strong. But he's asked me if the tumor will come back or why he's hurting. I'm praying it's nothing and he's just tired and sore from activity. Please keep him in your prayers that with each visit to LR, the Leukemia will slip farther and farther away and no bad cells will EVER return. Hearing Brayden ask those tough questions just breaks my heart and catches my breath as I search for ways to reassure him yet pray for reassurance for myself! That's the scary part in all of this. And hearing those questions from him make it so much more real as his mom.

To some fun things...while at ACH last week, I mentioned how Brayden got to build some things with the crew from Home Depot. He had a blast and I was thankful he was able to have a wonderful distraction from his 4-day stay and round of chemo. Here are his pictures!

Friday, September 4, 2009

We're home!!!

We had quite the waiting game yesterday. After hearing his counts through the night were just 4 hundredths of a point too high to be released, we had to wait until noon for the next check. Then, our sweet nurse kept checking every 20 min for lab results. Almost 3 hours later (gotta be a record for us for the longest lab results EVER) we were SO happy to learn his levels had dropped waaaay down so Brayden could finally go home. I should say that during this waiting game, while mom was working, Brayden was happily working as the playroom with Nini. He was "Building something together" with the crew from Home Depot! He had safety goggles, an apron and a hammer and was having SUCH a good time building a race car mini track and a bean bag toss game. Nini needed some tylenol after all the hammering, but it was an AWESOME way to pass the time for him. He continued setting a record for the most ounces consumed in a 24-hour period. WOW! He had to be floating! But still wasn't eating. His nurse kept asking him repeatedly and we did all we could to coax him to eat. An hour before we left, I finally convinced him to eat some grapes and cheese cubes and he just picked at it.

Finally they were ready to de-access his port. His adorable Nurse let Brayden help push all the buttons. She was so patient with his inquisitive prodding on how everything works. Always an opportunity to learn, right? He was practically running out of the hospital. 4 days just felt like a longer stay this time. We were definitely thrilled to finally be on our way home. 20 minutes into the drive, Brayden was eating finally. After not eating for about 18 hours, he downed his cheese cubes and grapes as well as more water! YEAH! I felt better. He was so happy to see Hershey running out to greet him when we got home. After a home-cooked meal and eating it up, he told me he 'melted into bed.' He was SO glad to be back in his own surroundings.

He hasn't had any more nausea, thank goodness. We're still doing everything preventatively for mouth sores by swishing and swallowing a special mouthwash to protect his mouth and GI tract. I still hope and pray he doesn't have to endure that awful pain.

In the meantime, we're planning as much as we can to take advantage of the holiday weekend and his counts just being barely high enough to continue doing things. We've been warned by the middle of next week, they'll drop again. We won't know until Friday the 11th what they are and if we'll be back in Little Rock again on the 14th for Round 3 of High-Dose Methotrexate. I'll certainly keep everyone updated.

For now, we're working and trying to get schoolwork done so we can enjoy a carefree weekend. And, we are so glad to have all the family back together again! Thanks again to Nini for being there to help Brayden so mom could work, for bringing me 'sweet nectar' each morning (Starbucks Skinny Cinnamon Dolce Latte - it makes everything a little easier when you've had one!). I'll post pictures from his week soon but wanted everyone to know...we're home safe and sound and Brayden is feeling good. Thank you so much for all the prayers & support! We love you all!!!

Wednesday, September 2, 2009

September Already?

I had been in disbelief at how we arrived to the month of September. I feel like we missed summer completely. Was it even hot? And now this weekend says goodbye to summer. I'm hoping we'll be able to do something fun this weekend for Labor Day. We'll have to be creative and think of something.

After our roommate got to go home yesterday evening, we were surprised to not get another until noon today. I was thankful for a peaceful night's rest with only a couple of interruptions for "commercial breaks" for Brayden. We both slept so much better last night. Brayden unfortunately had an emesis episode this morning. He amazes me how he can give me plenty of warning. Not to dwell on the topic, but it's not one of those things that I know is coming that far in advance when it happens to me. Anyway, poor guy had his nurse laughing. He was apologetic but relieved at how much better he felt and that he'd rescued his pill. Since he really did perk up after and cleaned up again, he kept his meds and water down. I was hesitant, but he decided he wanted to go upstairs to the School. Thankfully, he did great! And they were able to get through a lot more work with him than Nini or I have been able to the last couple of days!

Nini's brilliance with pushing fluids continues! She had bought Brayden some of those Crystal Light green tea flavored water packets? It was about a month ago and Brayden LOVED it! He downed a ton of it and I told her right away we had to get more. Thankfully, I had some in my emergency bag in the car that we had to use. I'm glad it was there. Before noon today, he hadn't been drinking hardly anything. It's really important that he does so he's able to flush the toxins from the chemo out of his body much quicker. After trying and trying, I remembered the packets and 64 oz later in just 6 hours - we've gotta be flushing SOMETHING!! He loves the stuff! And if it helps him drink more water, then our work here is done. They just drew labs so we'll see if we get to go home tonight. It will be a late night but it will be worth it to wake up in our own beds tomorrow morning.

I had to share two quick stories: Brayden is certainly the little charmer with his Nurses. Surprised? A relief nurse came in a few hours ago in between shifts and told us she would be helping us for a bit. She said she was told his room was so much fun, she wouldn't want to leave! So sweet! Then when it was time for her to leave, she told us what a nice young man he was. We heard from someone else how they had observed how joyful Brayden was. WOW! I had just prayed about that a couple days ago! His joy is definitely sustained and I'm so glad the diagnosis hasn't taken that from him. Another thing to be thankful for...Brayden is an incredible young man and even though we're biased, we're seeing it through the eyes of others. I'm honored to be his mother and pray we can do all we can as a family and group of friends to support him and be there for him through all of this.

We miss Daddy. We know it's hard for him not being here with us. We miss him and feel bad he doesn't rest as well without us home with him. But it's a short time and he'll be plenty tired of us soon enough when we're back home. Thanks, Dad, for DVR'ing the Cowboy's game. Who cares that it's pre-season? It's the COWBOYS!! Thanks, Dad, for taking care of Hershey-Dog for us (have we ever told you her nickname is HD?).

In my lament of September arriving, I wanted to share something with you. We were so clueless before Childhood Cancer forever changed our lives. Our hearts will never be the same. I guess that isn't all bad that we are changed. After all, our eyes have been opened to all the many more types of childhood cancers and the daunting numbers of those diagnosed. I know we all hear about adult cancers. Another dad of a kiddo being treated here said recently he thinks maybe talking about this topic is too much for some people and instead of educating ourselves, we all run from it and don't want to talk about it. I'm amazed at how much is being done yet how much is still unknown. Another kiddo we've come to know was here today and it reminded me of his story. Just 4 short years ago, they didn't treat boys with A.L.L. the same way they treat them today. Unfortunately, this caused this young boy (now Brayden's age) to relapse with another type of cancer. So sad. After almost breathing a sigh of relief just pushing the 5-year Remission mark, it hits again...with a vengeance. It's just more than any child should have to endure. Seeing yet another little girl this week (with my mom here) nearly sent her into a tailspin. This sweet little girl we met 2 months ago. She was diagnosed just 5 days before Brayden. She has the more common type of ALL and isn't on the High-Risk protocol. Yet she looks so frail and fragile and her mom told me of their recent 4-week stay in the hospital, of feeding tubes since she couldn't maintain her weight, of difficulty walking and having to halt chemo treatments until her body was able to resume fighting the horrible Leukemia to prevent it from returning and taking over. It's too much. Please read how widespread Childhood Cancers really are...September is Childhood Cancer Awareness Month.

•Each school day, 46 children are diagnosed with cancer.
•One in 330 children will develop cancer by age 20.
•Each year in the U.S. over 12,600 children are diagnosed with cancer.
•Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
•Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
•80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
•There are currently more than 270,000 childhood cancer survivors in the U.S.
•Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.


Tuesday, September 1, 2009

Little Rock - Day 2

I can see the last few drops of Methotrexate going into his we're a few minutes away from the 24 hr waiting period to begin. Bray hasn't wanted to eat today. Again, an effect of the chemo. Thankfully even with nausea, he hasn't thrown up. Ahem, I mean, emesis. Ms. C knows that was for her! Brayden and I have worked to use the 'clinical' term for vomit for a while now. It makes me laugh to hear him say it. Although, when he has to say it, it's not a funny moment, somehow the word makes it a little easier. He's enjoyed grapes for breakfast & lunch and (ugh!) a bag of fritos and half a PB&J for lunch. We always talk about eating what's most important first (in case he gets queasy) but in this instance, I guess we're thankful he can eat what little he's able.

Nini has been BRILLIANT today with thinking up a creative way to get Brayden to get more water down - ICE CUBES!! The ice and water machine on the unit floor has that yummy sonic crushed ice? All of us love it and will crunch on it. I never thought of giving it to him as a treat. Nini has been making trips back and forth with spoons. I'm hoping this helps him get more water in-take so he can flush those toxens out faster and minimize the impact.

Brayden also enjoyed showing Nini the ropes in the playroom today. They played Wii together. Ok, more like Brayden enjoyed taking advantage of Nini not knowing how to play Wii. At least, that's what I hear. Beyond that, we're still trying to get through schoolwork. It takes a lot longer than it used to. It's very tough to stay caught up. Overall, Brayden's not quite himself today, but still so much better than he could be doing. It's definitely been tough with a roommate: the noises, the food smells that sometimes generate the nausea, the distractions during schoolwork and many more. Our roommate just went home but they're cleaning the room and we may have another roommate coming in. I hope it will be an easy couple more days for him regardless of the roommate status.

I better run. Brayden's found some games online he can play from his room that are keeping him entertained. Another day done with work so we're going to try to do an in-room movie night complete with popcorn (a treat from home!).