Jones Family

Jones Family
November 2009

Tuesday, July 28, 2009

Change of Plans

Just wanted to let everyone know...we got to Little Rock yesterday and Brayden's blood results came back that his ANC counts have dropped and he's Neutropenic again. He wasn't healthy enough to be admitted and begin the next round of chemo. So we got to drive back home. It was a very long day and Brayden was bummed a little. After dealing with all the anxiety of getting the Port accessed again, the numbing cream worked great and he did awesome. Thank goodness, because that will be a regular occurrence for a VERY long time for him. Also, the PICC line is still in so mom got to sweat it out again in doing another of the weekly dressing change, but it worked great.

Say a prayer his counts recover at least above the neutropenic line. This is when I get the most nervous. Last Thursday he was pushing 1000 (which is so much safer) and he was only at 220 yesterday. So he's most definitely in isolation. His Dr. said this is very common and would have been surprised if Brayden DID start treatment yesterday, since no one starts this round on time while recovering their counts from the effect of the aggressive chemo med (the ugly one, we call it) Ara-C. He also made us laugh when he said he's never given a kiddo that much Ara-C and had them still have hair. He was amazed and glad to see Brayden and Brayden did a good job of being his goofy self when he came in the room, pretending to be a Dr.

We'll check his counts again locally on Friday and from that point know whether or not we'll travel back to Little Rock Monday. At that point, they'll check counts again before they start, just to be sure, then he'll go through the sedation for a spinal and removing his PICC line, then admitted and administered the High-Dose Methotrexate and observed. We've been told he'll be in for at least 3 days when that happens.

Thanks for the prayers. We'll let everyone know what we find out. In the interim, we're again making lists of things Brayden wants to do when his counts recover. Yes, he can't wait to see the new G-Force movie. He's been giggling at those previews for a while. He laughed at Ice-Age, but it made me realize my baby is growing up and if it hadn't been for his friends there, I'm not sure if he would have enjoyed it as much. Take care...

Sunday, July 26, 2009

Please pray for Stellan

This is one of about 5 blogs I follow and this sweet Mom is in so much fear right now. I've been reading her story for over a year and her son, Stellan, is a miracle to even be here. Their story isn't a short one, but please pray. He's been taken to Children's and now today they are unable to get his heart rhythms back under control. Please pray he'll come out of this danger zone and be responsive to the drugs and his body can begin to come back into normal hear rhythms and not be in distress. Pray for this mom and precious family...

Saturday, July 25, 2009

Outings

***I wanted to say thank-you for the comments! I'm sure it's tough sometimes knowing what to say on here for Brayden, but he looks for comments every day and was so excited to see some new ones this week! Thank you so much!!

We've enjoyed, for the first time in quite a while, the opportunity to get Brayden out of the house! Dad loaded up both kiddos (Hershey & Brayden) Thursday morning to go to the walking trail and new Bark park! Brayden had watched this being made for several months and couldn't wait to check it out. He took off in a run and realized quickly his stamina had changed. But the fresh air and beautiful morning did him well. Later that afternoon, we all took off for HH! Brayden was so happy to get another Happy Hour treat at Sonic. We stopped off at a local Farmer's Market and were thrilled to get some fresh veggies. You forget how good everything was INTENDED to taste fresh! Then we got to drive through the Pea Ridge Military Park. Brayden missed the last field trip of 3rd grade getting to do this and even though I know we weren't as fun or educational for him, it was a nice family outing for us. We realized we need to find things like this to do more often. We were blessed with beautiful weather and amazing views and some history thrown in there too.

Yesterday we found out about what's next for Brayden. We are now entering the next block of treatment called "Interim Maintenance". Brayden has completed 3 blocks of treatment since his diagnosis. He'll be admitted Monday morning at Children's for an LP (Lumbar Puncture, aka 'Spinal') where they'll give him Intrathecal Methotrexate again. It's been a while since his last one (June) and Brayden's excited about getting the 'dizzy medicine' again. Just a reminder that this is part of his High-Risk protocol treatment and the spinal chemo is to treat the leukemia cells that were found in his spinal fluid at diagnosis. It's to prevent kiddos woh go into remission after treatment from relapsing with brain cancer. They treat the brain cells completely differently. Then he'll be admitted for a minimum of 3 days. This is to monitor his levels of High Dose Methotrexate in his system that he will be given IV for the first time and he won't be released to come home until those levels have lowered. This will be repeated 3 more times in this block of treatment, but only if his counts are high enough to return and then staying again a minimum of 3 days. Once complete and his counts recover, he will receive 11 days of radiation. After that, he moves to the next block of treatement called 'Delayed Intensification'. It's another 2 months (count dependent) so it could take longer if we have to skip weeks while waiting for his boy to recover. THEN - we go to MAINTENANCE!!! This is the last treatment block he will be on but it will be for a long 2 1/2 years.

After hearing all about what's next for Monday, I was glad we had already planned to go see Ice Age at the movie theater Friday afternoon. Nini and cousin Caleb came with us as well as Brayden's friend Logan from school and we were THRILLED that Mrs. Lembke, Lauren and Juli could come too! The break from the monotony was so good for him. He did great with understanding the need to again wear a mask, take a blanket to sit on, etc. All the precautions that we've used before, he was cool with doing again, this time in front of his friends. It was so nice to hear him laughing and enjoying himself. After the movie, we got some great pictures (will try to post later) and it was so cute to hear that the girls just wanted to know if they could hug him! Even though I was still a nervous wreck about everything, his happiness out-weighed those concerns. I know we have to find balance and knowing it's going to be rough-going next week, was thankful he go this chance to get out and have fun, even for a couple short hours. So thank you Mrs. Lott, Mrs. Lembke and Logan, Juli, Lauren, Nini and Caleb for coming to hang out with Brayden and help get his mind off all things Leukemia for a bit. He loved seeing all of you!!

This will be a rough trip for us. Because Brayden will be admitted for at least 3 days, Bryan is going to stay back so he doesn't have to miss work. This will be the first time I've made the trip by myself with just Brayden and the first time we'll be there alone. I know we'll be fine and other parents have to do this all the time. The security that Bryan brings with him though will be missed and that means no breaks. We're praying for a safe journey, a quick visit, but more than that, Brayden is pretty nervous about having his PICC line pulled. That's the line that's been in his arm since April 29th. It's served him well and done a great job of continuing to work for this long and not getting clogged, not getting infected (thank goodness) and allowing him to have less pokes with the endless blood draws, and IV pushes for all his meds and courses of chemo. I keep trying to remind him we need the PICC out so once his counts increase, he can swim before the summer is out!We're going to try the numbing cream on his port on Monday so hopefully it will make it getting accessed a little easier than last time. We're praying his counts can keep climbing as high as they can before Monday so he starts out higher and stronger for this next round of treatment. We're praying his methotrexate levels lower quickly and he stays well hydrated post-treatment. He has to have preventative meds with methotrexate because it lowers the levels of folic acid in his body. Again, many side effects. He'll have Vincristine with this treatment again and have 6-MP, his oral chemo med, DAILY now for this block of treatment. With all this comes lower counts and risks, so as always, we're praying he stays free of secondary infections and we can keep germs to a minimum and that his body stays strong to recover those counts quickly!

I'll try to post an udpate from Little Rock as soon as I'm able. We are so thankful for all of you continuing to support Brayden and thankful especially for your prayers.

Tuesday, July 21, 2009

The Latest

Brayden is still hanging in there. His energy level fluctuates from day to day. We've definitely seen his appetite diminish and he's having more trouble sleeping. With his platelets low last week (okay, almost to nothing) his poor legs are all bruised up again. We learned this is common when platelets are low. We're trying to ensure what he does eat is healthy. I was stunned to have to cut his hair. Even though it's still thinning out, it's definitely grown since we cut the faux-hawk. Isn't that crazy? We didn't even think he would have hair at this point to cut. Somehow I managed to do well on the trim with scissors and his faux-hawk is still in tact!

He's having fun with turning our dining room into his play room. We had moved all the decorations off the table because of our game day marathon the last two weekends. Well, he's taken all his blankets (which I keep re-washing) and made a little tent for himself under the table by draping them over the top and down the sides. It's so cute and he's having a ton of fun under there. I drew the line at him eating and sleeping under there. On a rainy day, I wish I could stay under there and play!!

We went back to clinic locally to get chemo on Monday and an update on his counts. He's still hovering above the Neutropenic line which means he still doesn't have a SAFE number of white cells to fight off normal germs that you and I come in contact with every day. This is the reason for isolation and our extra cautiousness on visitors and limiting our time out individually. When Bryan comes in from work, he's having to leave his shoes in the garage and go straight to the shower and washing clothes so Brayden doesn't come in contact with germs he might have brought in with him from work.

The other things we look for in his blood work each time is his platelets and hemoglobin to ensure he's not in the danger zone of needing a transfusion like last week. We were glad these numbers had come up more from last Thursday's update since the transfusion took place a week ago now.

We'll find out by Friday if his counts are high enough to proceed to the next block of treatment. Another unknown in terms of impact to him and his reaction. It will be after this 2-month block of treatment that he will have radiation. We don't know whether to wish for higher counts so he can go to the movies again and get out/have visitors more, or wish for lower counts so he can have another break from treatment.
I'm working on thank-you cards. We've been so appreciative of the support that has been extended to Brayden. I tried to say thank-you on here to everyone but we want to ensure that there isn't anyone that thinks us any less grateful because of the lack of a personalized note. Thank you to Uncle Sammy & Denise & the United Methodist Church in Richardson, TX, for the incredible prayer blanket. Thank you to Amelia for more Hangman pads - YEAH!! Thanks to Miss Wendy & Logan for the AWESOME turtle book and we can't wait to go online and adopt the turtle. Thanks to Miss Juli for never failing to send Brayden an email each week to help keep his mind on other things.

Please pray for Brayden. School supply lists are out, back to school commercials are on, his friends that are calling him are talking about school, and he has to wait. He can't go NEAR a store yet due to isolation. He wants to do his own school supply shopping, as he always has, so he'll have to wait. I've got some silly things in mind to help get him through, but I know it will still be hard on him during this time and not getting to participate in the Back to School events. As of now, he still will have to wait until January to return to school. We're still planning on working with him at home so he doesn't get behind in starting the 4th grade and I'm thankful he won't have to be behind and so thankful for a wonderful school that he's been a part of since Kindergarten.

Wednesday, July 15, 2009

Jinxed

I figured it out. i jinxed us. After living out of a suitcase for the last 12 weeks, we finally decided about 9 days ago to unpack. Going week to week back and forth to Little Rock, most weeks for 2 days at a time staying there, we got to where we'd leave the basics, wash the dirty stuff, and re-pack leaving the majority of the suitcase in tact. After not having some basic things that you need while in the hospital the first 10 days, we learned quickly to always be prepared! Anyway, I guess finally deciding since we got a 4-week break from Little Rock we could un-pack and put the suitcases away jinxed us. So that was it!

All kidding aside, we had a very long 10-hr day at Children's yesterday. Brayden was so nervous and upset...I've never seen him like that. First the drive down was so stressful. He got a nosebleed and I was really worried. Bryan and I both looked at the speedometer. How fast could we get there? Once there, we were all surprised to hear they would be accessing his port for the first time. Brayden's always been the type if you can prep him for it ahead of time, he's fine. He thought he had 2 more weeks to prepare. This last-minute news really jolted all of us but especially him. He was so scared. We didn't know about it ahead of time so there wasn't time for the Emla or numbing cream to take effect. They did a freeze spray on it that I think hurt more b/c it was so cold trying to numb it. Once it was over, he was fine. We were glad it worked and understood they needed to go ahead and do it to ensure it was working and stayed working. But it was a really traumatic day for the poor guy.

They started the prep meds for the transfusion and began with the first unit. It becomes a waiting game while praying for no adverse reactions and watching his stats be monitored very frequently. I started asking about his counts and we realized they had drawn blood to do the type & cross for his blood transfusion but not for CBC's. I guess since they had been done the day before, they weren't ordered. I asked later to be sure and we saw someone coming in to draw blood for counts. I was almost scared to see them but very curious to get a true ANC read since the local clinic doesn't measure all the differentials the same way to get a true count. So the nurses come in to administer chemo. The PEG Asparaginase is 3 shots given in the muscle in his legs. Even with the numbing cream put on his legs, he was more than a little nervous. He's had it before, but he didn't remember the first time when he was in the hospital right after diagnosis. Then the other times it was done while he was sedated while doing the spinals. So this was new for him. So the nurses are literally about to give the shots and 2 other nurses run in to stop them. His platelets had dropped from 45 the day before to 12 - AAAHHH!! We were trying to figure out what that meant. I guess with them being that low, the concern was if he started to bleed, would it clot and stop on it's own? Scary. They stopped chemo and went to order platelets to be transfused. This was definitely a first for us. We were so thankful they had them there that matched what he needed and to get those going without incident or reaction. Again, another realization to thank all those who donate. You don't realize how thankful you are until you're staring at your sick child with those bags hanging next to them so grateful they are going to help him get stronger to keep fighting through this horrific treatment.

The chemo then was another scary time. Just very traumatic for him. I felt awful. I'm hoping he's past the fear b/c he's going to have those many more times. Anyway, he has to be monitored an hour after receiving that chemo for anaphylactic symptoms (scary) and while waiting, they began the other unit of blood. Soon after, he started perking back up. He didn't even remember the nose bleed in the car. He's been having more trouble with short-term memory loss, so we're being careful not to stress him about forgetting things. We know this is a side-effect and are praying it stays minimal.

We were glad to see his cheeks start pinking up and thankful we were there to even see the counts that his platelets had dropped so much in one day before heading back home. He's still neutropenic. But we go to the local clinic to get CBC's again tomorrow and we're hoping they're at least coming back in the right direction and not still falling. He rested well last night and was better today than yesterday but definitely not back to 100%. I was thankful he ate better and drank more. It's so impossible to get him to do those things while in clinic.

We were so glad to be back home and thankful Brayden didn't spike a temp and have to be admitted. After running on 4 hours of sleep, we couldn't be happier to see our own beds. We're glad the 24 hours are past to see if there was any reaction to all the transfusions and chemo meds. Yesterday was certainly harder than the other visits. It was our first glimpse of seeing low counts EVERYWHERE for him. We've known and been prepared this would happen but it gives you a new low to become adjusted to emotionally when you get there. Just when you think you've taken it all in and prepared yourself, you get swiped down again and remember to keep picking yourself back up, try to keep having faith, and pray he stays strong enough to rebound quickly. We're so glad there's only 1 week left in this 2-month course of treatment. We know the next 2-month round is high-dose methotrexate and aren't sure what all to expect from new drugs. He's had it previously but it was different when given via the Lumbar Puncture aka Spinal for the brain treatment of the cancer cells that were found in his spinal fluid at diagnosis. We'll know a week from tomorrow if we go back to Little Rock the 27th or the 3rd depending on his counts. I don't know to hope for low counts which means a break or high counts so we can move yet again to the unknown.

Wanted to say a quick thank-you to sweet Mary for the 'awesome' t-shirt you sent Brayden! Yes, he's certainly a baseball fan and mom couldn't wash it fast enough for him to wear. He had it on today and would have sooner if we weren't in Little Rock! He loved the card and loved knowing that you follow the blog. By the way, yes, his injury time-out toe cut took a week to heal and with almost no white blood cells, but we're thankful at least it healed. We've been having fun playing with the web cam. If you have one and want to chat with him, please email us at "JonesFam4877@att.net". Take care!!

PS - yes, it is safe to assume I will no longer be UNPACKING our suitcase again!! :-)

Monday, July 13, 2009

Little Rock Bound

Well, we found out that his counts have dropped again. I didn't think it was possible. Last Thursday we were watching his hemoglobin closely. We thought we had more time before needing to have a transfusion. He was at 8.5. Below 8 and he'll need a transfusion. His energy did drop significantly yesterday evening and we noticed something had changed. This morning he was definitely more tired and had less energy and complained his head hurt. This is another sign to watch for when his blood levels get too low. I was pretty stunned to get his CBC results back and see he had dropped all the way to 7.3. Thankfully, we'll leave out for Little Rock VERY early in the morning and they will transfuse him there. With his counts this low, I just am worried to have him admitted for 2 days to do this locally. In Little Rock, they can transfuse in 8 hours. We've been warned it's possible he'll spike a temp. Linda - I love the automated idea! We'll have to patent that! So we're certainly hoping that doesn't happen otherwise he'll have to be admitted.

His platelets have always been high up until this point. However, in 4 days they dropped from 127 down to 46. Below 20 and he'll need more. We've never had to have this done, although have been warned it's part of the process.

To say we're worried is an under-statement. While we enjoyed 1 week off from Little Rock, I'll feel so much better having him there. As it stands, the local clinic didn't have both chemo meds today so he'll have the Asparaginase while in clinic tomorrow too.

Brayden is doing good. He's gotten a couple more headaches since leaving clinic. He's not arguing with laying still and resting. He's eating pretty decent and is drinking lots of water. I guess it goes to show when you're having aggressive treatment, this is what it's designed to do and no amount of nutrition or doing everything right can effect his counts. Thankfully he's stayed high up until this point. We're still praying that his counts rebound quickly and secondary infections or fevers stay out of list of things we have to worry about or that he has to endure.

Thanks for praying for Brayden. We'll keep everyone posted as soon as we know more. I've promised to leave Farmopoly set up on the dining room table for us to pick back up on this weekend. His sweet Uncle John got this for him a few years back. It's a super cute farm-spin version on Monopoly. Bryan and I couldn't help but laugh at how bad he was skunking us at it yesterday. He was so lucky! He had a ton of cash, many properties and inevitably I landed on his $200 rent EVERY TIME! We certainly are thankful that we got to have some fun with him this weekend. Here's hoping we're back soon and can pick it back up!

Friday, July 10, 2009

Neutropenic

Well, I guess he's normal. We went in for the last dose of the yucky Ara-C and found out his counts had REALLY dropped. The nurses at the local clinic are super sweet and meant well, but scared us all. I was sick with worry, anxiety, fear last night. We're already trying to do so much to protect him. Facing the realization that he's now officially neutropenic threw us into another world of fear again. Are we doing enough at home to protect him? I know Our sweet Oncology Nurse was so reassuring in our call this morning and did a lot to help me feel better. Yes, we knew this would happen. Yes, he's in strict isolation. Yes, somehow he's still running around! I've been amazed today begging him to take a 3-day break and relax. Not happening. I swear his energy level is super-human. Even when Bry got home from work (and going to the grocery store for me!) he was more than amazed. We thought, okay, he practically has no white blood cells. He'll be dragging. He'll finally slow down. Maybe we'll get caught up on sleep! Nope. He's still going strong. Thankfully, he still hasn't been nauseated at all. YEAH! That's definitely an answer to prayer. I'm still checking him for fever more times a day than is normal. But he's doing a lot to keep going in drinking lots of water and eating healthy.

What's next? He'll have chemo locally the next two Monday's only: Vincristine & Asaparaginase (we call it asparagus) and then Vincristine again. We're re-checking his CBC's each Monday and Tuesday to stay close to how he's doing. My biggest concern is the last round of Ara-C took a full week to see the effects on his counts. So I'm praying they don't go lower than they are with this round that we just finished yesterday. Thankfully, the next two weeks' chemo doesn't make his counts go lower.

We're watching his counts carefully because his levels are starting to dip into the range of needing another blood transfusion. We're praying we can hold off on this until we're back in Little Rock. If we have to transfuse locally, it requires an overnite stay at the hospital. With low counts, the last place I want him to have to be is a local hospital! Thankfully his platelettes are still good and not in the range where he'll require more, although we know that's a possibility in the future as treatment continues.

He was jumping up and down and cheering like he'd made a touchdown a few hours ago. We'd all been playing in the office (ok, mom was paying bills) and I saw out of the corner of my eye his steri-strip in the floor! It finally came off on it's own from his Port placement surgery! I've gotta say, you can feel it through his skin and he's all about how cool the scar is and everything. Poor Bry almost couldn't touch it while Brayden is excitedly encouraging him, "touch it, dad! Isn't it cool?!" I thought Bryan was going to lose his dinner. It's still hard to imagine all the invasive things he has to go through, but he's so strong and so resilient and we couldn't be prouder of how he's doing. I can't imagine what we did to help him. I am so grateful and thankful for all the prayers, because we want to give credit where it's due and we know God's hand has definitely been on Brayden. To see him up and about and not laying around all day still amazes me. Bryan and I are having trouble keeping up with him!

We're planning a big Game Day tomorrow...dragging out all those fun board games you never have time to play. Yes, Monopoly. And those Cranium games are AWESOME! We've gotten a few over the years and those people are brilliant! We got some fun foods to have and are trying to make isolation more fun for him. We're also planning another list of things he wants to do when his counts go back up. On the top of his list are HH and seeing the new Ice Age movie. HH? Yeah, that's Brayden's code word for his favorite thing: Happy Hour at Sonic. Those people are marketing geniuses. You can't pass up half price gallons of soda or slushies! So it's a fun way to get him a treat. But when his counts are lower, I can't bring myself to let that come in, even with clorox-wiping down the cups!

A big thanks to my sweet circle of friends for all the towels, book for Brayden, more Clorox supplies I never thought I'd use up the first time, paper towels. Thanks to the Tyner & Holloway families! We've never even met, but I'm so thankful to you for the mail lottery you sent to Brayden! He was so excited to get a stack of fun cards from all of you! Thank you so much for caring enough for our sweet boy to send these! Thanks to Miss Cindy for the YUMMY brittle!! MMMMmmmmm.....Thanks to Grandma Sue & Papa Bob for never missing a week with an encouraging card for Brayden. He LOVES the stamps!

Please pray that his counts quickly rebound and come back up. We're praying he doesn't need the transfusion for several weeks until we are back in Little Rock. We're praying no fevers or secondary infections show up and he stays healthy enough to make it without incident to the next round of treatment. Thank you all again for everything.

Tuesday, July 7, 2009

Hi from Brayden!

2 days to go on the Ara-C - the yucky chemo med! This one is pretty ugly, but we're so thankful this round hasn't been as hard for him as last time. As a matter of fact, last time we were concerned about dehydration and getting extra fluids. This time, I've double-checked his meds to make sure he didn't start taking steroids again! The last 2 days he's suddenly eating double what he was!! We're so thankful he's eating healthfully. His favorite snack right now is kiwi fruit, cheese cubes, and almonds - yumm!! We're hoping his body is working overtime to keep fighting and staying strong. He's doing great with drinking lots of water and I'm just over-joyed he hasn't been sick. His energy level has been back up yesterday and today.

We've been laughing our heads off tonight playing with the new web cam our friends from my sweet Circle gave us! Thank you so much!! What's funny is my little comedian acts all serious and wants to record a quick video for the bloggie. I start recording and he used these chances to be as silly and crazy as he could be! Don't ask how many takes it took before he decided to not do jokes. I'll have to post one of those soon. His laugh is so infectious!.

We had fun cleaning out the game closet and playing boggle - remember that game?!? HE LOVED IT! He had some fun times playing football with dad tonight - indoors, of course. We've almost used up our hangman pages while at clinic. Still trying to find creative ways to keep him occupied but it's definitely challenging with a 9-yr-old little boy who wants to be outside ALL DAY!!

I made it through changing his PICC line dressing. Brayden was so encouraging of what a good job I did. I have to say it was by far the most stressful thing I've ever had to endure. You have to change the dressing in a sterile environment and not cross-contaminate anything, clean under the stitches that are holding the PICC line in his arm with alcohol sticks. But we did it! This is the downside of NOT going to Little Rock where the experts take care of this for him. We're looking forward to hopefully his counts holding or at least not getting too low and maybe a fun game day on Saturday. He's still pale, so here's hoping no transfusions are needed for a while. So two more days to go on the Ara-C and then we'll know if he gets both drugs on Monday when we stay local for treatment. So here's a quick hi from Brayden. We hope you guys like hearing from him directly and I'm sure we'll get lots more practice with the new web cam!
video

Sunday, July 5, 2009

Please Pray for Kate

My heart is heavy. Reading this story has literally put me right back to where we were April 21st and the days beyond. What's awful is when you are faced with a situation like we have been thrown into the last several weeks, you begin to have your eyes opened to others that are hurting and suffering all around you. I meet other family members now that I find myself looking around while at ACH instead of just trying to function. Now that I see things again, I see things differently with each visit. So many other moms, and family members, with kiddos in the Burn Unit, or PICU, or NICU from another mom who hasn't gotten to take her new baby home yet. While I know there are so many out there who are hurting and suffering, we were brought this story by another trusted blogger mom and my heart just pours out to them. Their story hits so close to home and I see ourselves in them. I knew I had to share their story with you. Please pray for Kate. We all know that's all you can do in these times...pray. We were so thankful for all of those who were with us during those early days and those emails and notes of reassuring prayers were so comforting. On the nights I couldn't sleep, I remember looking back and forth from watching monitors to reading notes of encouragement and prayer. We know how much that means to this family because we've been there. This is all so fresh for them and it rips at the wounds that are still fresh and trying to heal in our own family and circumstance. Thank you for taking a minute to hear Kate's story and lift her and her family up in prayer.
http://www.youtube.com/v/ese3zYZ-NA4&hl=en&fs=1

Happy Force of July!

For those of you who didn't know, a lovely cable channel had a special Star Wars Marathon weekend. How do I know, you ask? 3 guesses...since we have the biggest Star Wars fan in the house. This was their promotional tag line, so I can't take credit for it. Other than clearing up any unknown Star Wars trivia I didn't yet know the answers to this weekend, we actually were able to have some fun times! Brayden had a great question on Friday, which lead to the Quote of the Weekend.
"So how old are we?" "We?" I asked. "Our country." "Oh, great question! I think that would be a fun math problem to try out!" So when we got home, he grabbed the calculator - which I didn't think was that funny as it defeats the purpose of trying to keep him engaged in learning. After he finished laughing, he grabbed a pencil and paper and went to work. "233 years old! WOW! We're old! We're older than...Elvis!" Whoa, there. You have some family close to you that's in the Elvis age-range that little statement might offend.
It was definitely a cool question to ask. We've tried each year to reinforce the real meaning of the holidays and celebrating the privilege of freedom is a big thing to be thankful for.
We were SO thankful to make it a full week without losing any meals, if you know what I mean. The new meds they put him on for the anti-acid is definitely helping. He hasn't complained once this week like he had on-going the week prior. I'm hoping that helped. Plus, with the distractions of help of additional anti-nausea meds, we've made it through so far, so good. The biggest distraction of all was planning what he wanted to do for the 4th weekend. We rented some movies Thursday and had a HUGE campout in the living room floor on Friday night. You should have SEEN the look on his face when dad pulled the full-size mattress of our guest bed and brought it into the living room! I thought sleeping on it would be fun for him. The storms woke him up at 4:30 and not going back to sleep the rest of the day after only 5 hrs of sleep had mom and dad BEGGING him to take a nap. But this mattress became his trampoline, light saber training ground, football endzone, you name it. Bryan and I were trying to figure out a way to bottle this energy that came out of nowhere! We were telling Brayden that and he explained to us that would mean we would need an IV to hook up to his PICC line to do that! Of course...if only it were that simple.
Part of his big plan was to get to go to the fireworks stand. So we talked about the plan and that wearing his mask was a MUST! We'd go late for hopes of a smaller crowd, and he'd have to not touch, and clean-up when we got home. He was so excited. Not even 1 minute after walking in, he grabbed my arm and whispered he didn't think he could do this. He was getting stares from everywhere. There were some boys his age around that were just gawking and he was about to break into tears. I put my arm around him and we trudged on as I reassured him they were just curious about the mask and encouraged him not to let them ruin his fun. He made it through and we hustled back to the truck while dad paid for everything. We talked about it quite a bit, over and over. This was tough, because it wasn't like a non-crowded movie theater or being dark where no one could see him. This was a bit more obvious and it was the first time he was hit with those feelings. My heart just broke for him. I know being in clinic is so much easier because the kids there are like him. It was a glimpse of how re-entry into normal life again might be more difficult than what I had originally thought. I'm definitely praying for him.
So we trudged on with our 4th plans. We had a fun get-together with Nini & Papaw at our house. We enjoyed a show put on by dad and Brayden had fun getting to do a few things. We had to laugh again at the mosquitos - if they bit him, what did they get in them from biting Brayden with chemo meds in his blood?!?! I was worried the smoke might be too much, but we tried to relax and have fun and let him enjoy the fun time like he would any other year.
Sunday everything definitely caught up to him. He's been pretty sore after all the running around he was doing. He told us he used up all his gas from all the running around he'd been doing and why didn't he save some? Too funny...
We've been a little worried today. He's looked so pale. But he's eaten SO healthy today and done so great with all the water he's drank. We'll find out an update on his CBC's tomorrow as well as continue the last 4 days of this dose of the ARA-C. We're praying the next several weeks as the effects of this round continues to settle in, that his counts stay strong and he doesn't have to be hospitalized for fever or secondary infections. Pray for me...I get to change his PICC line dressing on my own tomorrow for the first time. I've watched the nurses in clinic do it, but the good part about being home and not going back to Little Rock for 3-4 wks had an adverse effect with mom getting the responsibility of this stressful step. I'm sure it will be just like flushing it when we first got home and taking care of it...once I've done it, it will become like second nature.

Thursday, July 2, 2009

Injury Time-Out

We never really know or can expect from day to day how Brayden will do. Wednesday when we did chemo locally was interesting. He luckily kept his prep-meds down. They help prevent Brayden from getting a fever or getting sick from the chemo. He did good until we walked in...and he instantly started feeling nauseated. I think the environment is rough and maybe the anticipation of it had upset him. Bring on the distraction! Brayden was quick to call Nini (who thankfully lives just up the road) and the distraction was on her way! Mom's bag of tricks (or Mary Poppins bag) only goes so deep. But he definitely brought on the big guns with Nini. Before she got there, we had to take a quick run to the restroom. Just walking in put him over the edge. I don't know how he didn't get sick. I was never so happy to see a backdoor we quickly exited. The fresh air and breeze was a welcome distraction. He pulled it together (I don't know how) while looking at the clouds, breathing in the fresh air, and wishing we could just have chemo outside! The nurse was great to have some nausea med #3 ready to go for him. We're still too nervous to give nausea med #2 after that reaction. Thankfully, he got through chemo after the nausea med had taken effect and Nini was there to be her goofy self.
We've been planning our 4th of July weekend for a while as a distraction. We've used up almost all of our Hangman pages. But then there's Nini! We were both so thankful she came back home with us. My workday was VERY busy and I didn't want to work another weekend, so she was great to help us out. This was the first time I had asked, and I guess she knows if I have to ask, I must really need her. She jumped in and folded clothes, did dishes, scurbbed counters in a way she knows I would approve of! But more than anything, it was just great to be able to spend some time with her. We're so thankful for our family and wish they all were just up the road! The rest of the day Brayden did great! No nausea and he was pretty peppy later in the afternoon and evening.
Today, we called in the troops again, so thankfully Nini had the day off and could again join us for chemo. He did great! No nausea or extra meds needed, but I think we got out of there just in time. For some reason, they cook in there and the whole place smells like food! Yesterday they had food from a local Italian place brought in and we literally RAN out the door to avoid the smell! I'm not sure if kids have more of a smell sensitivity with chemo than adults, and since they normally don't do chemo for kids, maybe it's not a big concern? Anyway, it's at least better than the 4 hr drive to Little Rock! I wish we could have the best of both worlds with ACH being closer, but this is the way it is. We were SO happy to hear today that the local clinic CAN get the chemo meds for him, so we've got a 3 week (maybe 4 week depending on counts) break from the drive! YEAH! I'm hoping that will help us all rest up a little and recover from the lack of sleep! Not to mention how happy our car will be for the break!!
This afternoon, while I was working, Brayden was playing with Nini. I come out of the office to see Nini and Brayden enjoying an injury time-out. Brayden's leg is propped up while Nini's eye is covered with a cold cloth. Nini has a weird look on her face. "WHAT HAPPENED!?!?!" Nini and Brayden were quick to explain they were enjoying a fun little game of indoor soccer (with the mini nerf soccer ball) when Brayden kicked the ball right into Nini's eye!!! Then, he was running back for a kick and caught his toe on his basket of toys and fun stuff in the floor and got a cut. I can't believe they both were injured! After checking them both out, I HAD to grab the camera for the evidence. This was too much and instantly I had a title for the blog. Later, Brayden was recounting the story to Aunt Heather who was giving him a hard time for giving Nini a black eye. And we have Brayden's Quote of the Day: "No, I didn't give her a black eye! It was more purple or pink!"