Wednesday, May 27, 2009
The other good news is his counts have increased again so hopefully we're going into chemo ahead of the game just a little. He's liked getting to visit Camp Wanna Play twice today and a venture outside and feels more free than the last visit. Mom and dad aren't pumped to get to sleep in chairs again so we all can't wait to go home tomorrow.
We enjoyed a great celebration weekend of REMISSION!! We FINALLY got to see just a couple of family members on restricted visits and that made us all happy to have some adult interaction! It definitely helped Brayden since he misses everyone so much! We still have to be cautious with visitors but being able to see a few of the family for the first time in what, 3 weeks, was great!
The funniest thing this weekend was Saturday morning. Dad and I were up early cleaning the house. Brayden strolls out of bed 3 hrs later and QUOTE OF THE DAY:
"It smells like a swimming pool in here!" Okay, I guess I went overboard on the bleach!!
From Brayden - He wanted to say hi to everybody and thank you for praying for him. He's pumped to ALMOST be done with 3rd grade schoolwork and probably excited to not have mom harping on him. He's been quick to inform me on more than one occasion I'm not doing it the way Mrs. M does it!! Gee, thanks! I know he's missing being at school for the assembly and the last day of the year. We're going to miss calling in each morning and reading together, hearing the jokes, and getting to visit with everyone! Thanks so much for signing the yearbook. You guys are so awesome and we can't wait to see you later in the year in 4th grade!!
Friday, May 22, 2009
So Brayden will still have to be treated with the High-Risk Aggressive Treatment, but NOT with the experimental drug that would have required weekly 3-4 day hospital visits as well as a long-term catheter and 48 pages of side effects. This would have been so toxic and taxing on his system during a treatment that will be difficult enough on his little body.
Next week we go back Tuesday for the full body CT scan and then treatment begins Wednesday. From there, we'll know more about the timing of this next block of treatment. We know the drugs and treatment protocol, we just don't know specific timing and duration of the first block yet. Please keep Brayden in your prayers. This is when the hill gets steeper in this phase of his journey. We've been warned his energy levels (that have been amazing!) will diminish. The poundages the steroid clones helped him pack on will come in handy as his appetite diminishes. He will lose his hair in this phase as the drugs they introduced to his body in Phase 1 Induction are elevated drastically now that they've proven his body could handle it and the Leukemia cells diminished...almost disappearing! Radiation will be forthcoming for his brain and leukemia cells found in his spinal fluid and we know that will be so hard for him. His spinal fluid has been clear since Day 15, but because it was found at all in that Stage 2 Intermediate phase at Day 1, then they have to treat it in this manner, as is the protocol. The cells have a tendency to hide and reappear after treatment in the brain in leukemia patients and this treatment protocol is standard and proven to help reduce his risk of relapse of those cells in his brain. They treat his body separately for those cells than they do in the brain. Additionally, we're praying again that his good cells stay strong, his body stays strong, no secondary infections, and he can get through this phase still being his sweet self and strong to fight.
The last 48 hours have been amazing. This little reprieve for us before the next phase begins is such a blessing. With the steroids almost out of his system, my old sweet boy is showering me with affection and reassurance and I'm soaking it all in to sustain me through the next rough phase that I don't know how will change him. Our prayer is that it won't. This is such a gift to a mom that I'm treasuring. His calm spirit is back, his humor is in full force! We've laughed more today than we have in the past 4 weeks. And we continue to be thankful for those blessings we have...focusing on the blessings and remembering to surrender, soaking in each second together.
From Brayden: "Everybody, thanks for praying for me. My favorite part of today was getting to know that I was in recovery. We had a big ol' barbecue tonight because we were celebrating my remission. It was really great; we enjoyed having my favorites of turkey dogs, turkey burgers, Cheetos and some potato salad. I'm really liking school here at the house and I know my friends from school are missing me, but I'll see 'em soon. I'm loving that I'm not having to take 24 pills now. The trip to Little Rock was fun; I really enjoyed it. Um, I'll see you guys soon."
Thursday, May 21, 2009
Brayden's bone marrow showed less than 1% blast under the first glance, which means Remission. This is what we were so hoping and praying to hear! Brayden had a long, rough day of not getting to eat, so we were up bright and early at 5:30 for breakfast. I'm not even going to repeat what those clones put away for breakfast. Let's say we are SO HAPPY the last steroid dose was Tuesday night and should be clear of his system in a few more days. WOOHOO!! They cause crazy mood swings and irritability. Although, I don't think I've ever bothered to elaborate on that. We know it's an effect of the medicine, but having the old Brayden back the last 24 hrs is a gift in itself!
He's been in a lot of pain the last few days, that's why I hadn't posted an update. It's been emotionally draining for me and for Bryan. Seeing your baby in pain is more than we could take at times and his pain medicine wasn't cutting it. Finally we found out this is a side effect of the treatment called Peripheral Neuropathy. Basically it's hurting his extremeties and causing a lot of pain as a side effect of the chemo. It was so bad at one point, 2 pain pills didn't touch it and none of us got any sleep that night. It was starting to affect his walking. We're praying the new medicine will help counter those effects and it seems to be already helping him with the pain of feeling the nerve endings in his legs.
Regarding his spinal, (lumbar puncture), it came back clear again. It was actually kind of surreal because they took him back to the PICU for the procedures because of how busy they were yesterday in just having a room. Walking back there where we had been just 4 short weeks ago brought it all flooding back again. He's had to endure so much in such a short time. So, he had another round of chemo. His blood was still clear of the leukemia blasts and we were happy to hear he's producing healthy little red blood cells and his own platelettes which is a good sign! WOW! We know this is a short-term thing, but very exciting as it helped raise him out of the Neutronpenic stage. He's still in isolation, but we're not as nervous as we were. We have to keep him healthy for Phase 2 treatment which starts next week.
We did learn Brayden is definitely high-risk due to the response time of the chemo to lower the blasts in his bone marrow. We were amazed to learn there is only 1 other patient his Dr. is currently treating for the same diagnosis and only 10 kiddos in AR have this...only 3,000 worldwide anually are diagnosed. So it's rare, we just didn't grasp how rare. Since he's high risk, his occurrence for relapse is high, so his Dr. said we've really got one shot to get this with the treatment plan. As of now, we still haven't heard from the Dr. on the MRD (minimal residual disease) count to know how aggressive his treatment protocol will be. This test will measure and count millions of his cells and indicate if Brayden has to have the higher toxic experimental drug added to the chemo treatment protocol. This is the one I mentioned has side effects 40 pages long. Still praying on this one...
The other piece of good news is pretty amazing. They did another Chest X-Ray. His Dr. came in with two copies for Brayden (see pictures below). He said, "Here's one, 4 weeks ago, not compatible with life. Here's one that's normal." Wow...we were speechless hearing "not compatible with life." That was heavy...and miraculous. And it reminds us how big the miracle is that his lungs suffered no damage and his internal organs were fine after being pushed and moved around to make room for the massive death star (tumor). Seeing those before shots reminded me that night in the ER when I saw the same pic and the technician's face and knew something bad was wrong. Why couldn't we see his ribs? Well, the 6 in tumor is in the front and the right side of the pic is his left side that's filled with fluid and a picture of a boy 4 days away from another journey and filled with cancer cells. How amazing the change! We learned he will have a full body CT Scan next Tuesday to double-check that it's totally gone and get a read on his other organs before we start the aggressive chemo. We'll have to watch for impacts of it and other side effects so this will be another before picture we hope doesn't decline.
Before on 4/21/09
Brayden's named "Death Star" aka the Mediastinal Mass Tumor
After on 5/20/09
Back to Remission...we've learned this is a word that he'll never fully have like other types of cancers. Leukemia really never goes away and it's something he'll carry with him for the rest of his life. We just pray it stays dormant. So even though this is good news, it's not the end of the journey yet. We're glad he's gained some weight to help sustain him through the next phase where we've been told he'll sleep more, have less energy, and be less likely to eat. We think this phase of treatment will be 6 months, so we've still got a long road ahead. Treatment will continue for another 2-3 yrs but we're thankful again for the early miracles and progress.
The highlight of the day was certainly getting to stay in a hotel! Isolation isn't easy on the warm days on a 9-yr old boy! He was also pumped to get to eat outside food! Then...American Idol! Brayden was a fan of both finalists but told me he hoped Kris would win.
We're still praying for Sam. I need to get permission to post more details for his family, but just keep holding him up in prayer. He did come through surgery and they're still learning more about the road ahead for him. We're hoping we can help support them somehow, even though all this is still very raw for us as well.
Today was a beautiful day. We've got a breather for a few days with no steroids (bye, bye clones!) and no 24 pills to take. Still some maintenance things, but we can handle that! We'll know more about his surgery to place his port and eventually remove his PICC line. For today, we just enjoyed the day and (minus the mask and Germ-X and concern from mom) it almost felt like a pre-Memorial Day vacation mini getaway today with being in a hotel. We haven't forgotten how far the journey is in front of us. We are so thankful for the miracles we've seen so far. We're so thankful for ALL of the prayers and support each of you have given. This is another big hurdle he's gotten across and even though there are more, it's a big one he's passed. We want to give all the praise and thanks to the One we know all the credit is due.
Brayden's Quote of the Day: "I'm so glad I'm out of the hospital. I feel like the luckiest boy in the world."
Saturday, May 16, 2009
- PICU (Pediatric Intensive Care Unit) - Square Heart
- Bone Marrow aspirate/biopsies - Beige
- Emergency (Angel 1 Transport) - Magenta
- Blood Transfusion - Red
- Chest Tube insertion - Aqua
- PICC Line - Orange
Here are what the other beads represent:
- Course of Chemotherapy - White
- Clinic visit - Blue
- Port Access/Blood draws - Silver/Black
- CT scans - Light green
- Sleep over at Hospital - Yellow
- Morphine - Purple
- Dressing changes (for PICC line) - Silver
There are a few he hasn't gotten yet:
- Bone Marrow Transplant
- Hair Loss
- Isolation (we've forgotten to ask for this one)
- Radiation treatment
- COMPLETION OF TREATMENT!!
Here's Brayden this morning stringing his Beads of Courage for the first time. He got to pick out 1 special bead after finally visiting the gift shop after clinic this last week. It was to celebrate him conquering his NEMESIS: TAPE! Brayden (along with a little help from Oxycodone) had no problem with the tape this week and was eagerly ripping it off for the nurse! This was the nurse we should have rewarded with flowers after last week's 1 hr work of gingerly working with the 3 1/2 square inches of tape over his PICC line, millimeter by millimeter. I winked at her Wednesday and said, "We drugged him up for you this week!" Don't judge me yet. Brayden hasn't taken many things they've given him for pain and nausea. He had so much anxiety over going back this week because of all the trauma with the tape. So his nurse was sweet last week to suggest it and didn't agree though when I asked her if the parents could be medicated with a dose as well? This really helped ease Brayden's emotions and anxiety this week and allow it to be a less traumatic week in clinic for him, so I'm thankful it worked. For his reward, he picked out this special cross bead in honor of all those prayers for him!
Thursday, May 14, 2009
QUOTE OF THE DAY: After looking at the results in the mirror, "Yeah, baby! There's a new king in town now!" HUH?!?! Who has he heard saying that while looking in the mirror? It's not me or Hershey...process of elimination....
PS, Heather. Sweet Colton's prayers and words just melted me. There's nothing like the heart of a child.
Today we had a yummy hot Malt-O-Meal breakfast with blueberries and milk. YUMM! I hear they have some AWESOME products other than just hot cereal and incredible values on ready to eat cereal. Our fav is the Blueberry Muffin Tops! Gotta check those out even with a Walmart coupon online! I'm just sayin'....A girl's got to have her shout-outs, after all, right?
I'm up late cooking turkey burgers on the foreman grill. (Hint: so the white patty doesn't scare the boys, I've been cooking them for a while now with Worcestershire sauce to darken them up a little and gives them a great flavor!) This buying in bulk thing has its disadvantages...we've gotta watch dates and with us traveling, I forget to account for those days! I've learned my lesson after cooking 3 meals tonight; all while feeling horrible. I've been fighting some nasty headaches since yesterday that won't quit. Anyway, before running to bed, I know I'm getting a lot of questions on how yesterday went. I wanted to give a quick update.
First, please pray for Sam. He's an 8-yr-old boy whose mom and dad also work in the vendor community here locally and we have some mutual friends. We heard this morning they went in for headaches to his Dr. and after an MRI, they had to also go to Arkansas Children's Hospital last night and had surgery this morning for a tumor in his brain. That's all the info I have at this point. Last we heard he was still in surgery. Please pray for this family who is going through their own nightmare and hearing this today hits so close to home for us. It's awful going through it but watching others is even more horrible in some aspects because you can't imagine their hurting and pain and remember how awful this disease is whatever the kind, cancer is ugly and I hate that it hurts our sweet boys. I'll post more, with their permission, but please remember Sam and his family in your prayers as well.
The days are really flying by in some ways and dragging in others. We can't believe we're on day 23 of this journey. We're really missing friends and family like crazy! Thanks for the cards and visits through the door (Hannah & Aaron!) and phone calls. Faith, your post card and letter was awesome! Brayden really liked it! Brayden's still doing so well in spirit and his attitude is great. Bryan and I are excited for him to be off the steroids. It really has a lot of emotional side effects that have us missing the old him sometimes. But we know it's helping him and we're praying it does the job it's supposed to regardless of the side effects that are so minor compared to what he could be going through. He's still loving his morning call-in and class discussions via phone. We have an American Flag outside our house and it's hilarious each morning from the office with the blinds open, he's saluting and pledging right along with them while looking at the flag through the window. Tomrorow he gets to do his biography on Abraham Lincoln. I'm so proud of him working on it even while in clinic to get it done. He's working really hard to stay caught up.
We kind of were deflated after yesterday's visit back to ACH hem/onc clinic for his weekly chemo treatment. 2 weeks ago when we were told he was in RER (rapid early response) we knew it was amazing and rare and such good news. The Dr. did too. He met with us yesterday to tell us there was a mistake in the counts that were done on that bone marrow test and they were inaccurate. Brayden's not in RER and his bone marrow counts were still high. Our hearts just sank. What we know now is that after yesterday's results, the Dr. came back to tell us his blood showed no leukemia blasts! That's good news; in one week they decreased from 14% to 0%. His spinal fluid test was accurate and was still clear from two weeks ago and that's still good news. We learned that the more he endures the chemo treatments, the more likelihood for side effects. We've started to see a few and just praying through those. It was a very long day yesterday for us and a late night getting home. But even while in clinic, we saw reasons to again be thankful. There was some sad situations around us and seeing our sweet boy as he is now is hard to imagine him struggling like some of those sweet children. We got to at least sing Happy Birthday to Ally via speaker phone and get the play-by-play of the present-opening from Aunt Stephanie. It was bittersweet. I just treasured the pic mom sent me of Ally diving into her lipgloss. I was thankful for shopping early a few months back for her. Her sweet 'hello' and 'miss you' to Brayden nearly broke me. I had almost forgotten her reaction when Steph told her Bray-Bray was sick. "Did he swallow a puzzle piece?" Her response was so precious.
What's next? The big day. We can't say enough how much we're praying for a miracle for May 20th. This will determine Brayden's next steps and has been the day all along we hoped to hear "Early Remission". One route is we move into Phase 2 (Post-Induction) as planned. Another route, if the bone marrow isn't low enough on his blast counts, then he'll have to endure some more aggressive treatments. After his Dr. re-evaluated his results yesterday before we arrived, he began preparing us for another possibility. Brayden might have to stay in Phase 1 longer. This would mean adding another drug to his regimen that's been in clinical trials for his T-cell type of leukemia and the relapse rate shows low. His Dr.'s main concern is if we don't treat it aggressively enough now, it's more likely to relapse and with T-cell, the likelihood of successful treatment on relapse diminishes greatly. The new medicine would increase his toxicity and has 40 pages worth of side effects and concerns and documentation. His Dr. told Bryan not to let me read it and our prayer is next week, we can give it right back to him without having to sign. That would mean Brayden can move into Phase 2 as planned. If he doesn't, we won't know what that looks like until next Thursday. They're going to do some special counts with 1 of 2 people in the US that do this at UAMS and we won't know those results until Thursday. What this Dr. will do is evaluate Brayden's MRD value where they count all his cells and determine his minimal residual disease. We want this number to be super low; less than one tenth of one percent. If it's high, then he's at high risk for relapse, thus the other course of more aggressive treatment. If his early bone marrow results show high from his Dr. at the time of the procedure, he'll be admitted when we go in on Wednesday. We're already planning to spend the night and praying Brayden can leave with us to go to the hotel. Regardless of the results, it will be a long day for Brayden with another spinal, bone marrow biopsy, and they'll do a chest x-ray to check on the size of the death star. If it's shrunk enough, they'll schedule surgery for him to have his picc-line removed and have a port placed.
It's so tough not being able to plan what to expect. One of the questions we asked his Dr. was about Brayden's energy levels and it just seems he's doing so well to us! He commended how strong our sweet boy is but cautioned us that will change in Phase 2. So it reminded us to be thankful for the energy and all the good we have now. We asked about visitors and he told us he has to stay in Isolation. The Dr. I think has learned my personality quickly and deterred me from doing research after my reaction this weekend. (Who told him!?!?! Just kidding). He reassured me to stay focused on each block of treatment at a time and not to look past that. He told us he'll be all the research we need and all the information we need, he will provide to us. It's hard to hear on the one hand because, again, of my controlling nature. But on the other hand it was almost a relief. We just have to again stay focused on the here and now and be thankful for what today brings. If we keep looking to tomorrow, we couldn't make it through.
We're thankful for the healed paper cut! It's the small miracles, right! Wednesday morning he wakes up and I was never so happy to see a scab! One less thing on my list, right? Thankful he can have SOME food before our long trip to Little Rock which would NOT have been fun with the Steroid Clones beating his stomach up from the inside! Those boogers are mean when they aren't fed!
I don't know how soon I'll be able to update everyone next week, especially since we won't know the full plan until Thursday. We so appreciate the continued prayers. We all can feel them and are so thankful for God's help in reminding us He's hear for us to help shoulder the burden for us and that we aren't meant to carry it all the time. The headaches are evidence I'm still learning that lesson!!!!!
Please feel free to let us know if you have any questions we aren't answering. I'm trying to learn brevity (Mike) but it's something I'm just not naturally good at. I hope we're providing helpful information to keep all those that love and support us informed of how our Sweet Boy is doing. If there are other things you want to know or want to ask him, please feel free! Love to you all....
Monday, May 11, 2009
We've had some questions on how long his hair has gotten. I'm still losing more hair than he is! I forgot to note from our last ACH visit that his Dr. said if Brayden didn't lose his hair in the first phase of chemo treatment (called Induction) he'd definitely lose it in Phase 2. Bummer...but I think the extra time he's had with it has been a blessing in giving him more time to get used to the idea. He finally said today he's ready to try the trimmers. I just want him to go crazy with it! MOHAWK! MOHAWK!! MOHAWK!!! Say it with me...MOHAWK! Unfortunately I can't convince him just yet. On American Idol, I was showing him how cool the one guy from Daughtry looked with one and he was quick to remind me the guy from No Doubt was wearing a "ballerina dress." Okay...he got me there. Am I going to regret convincing him of the mohawk look when he's 15? Probably...remind me of this when we get there.
Mother's Day was hands-down the best one ever. I've always tried to focus on the joy of the day, but this year, it was so crystal clear and nothing to focus on because the tangible appreciation for the day and what we have to celebrate was everywhere. I was woken up to a lovely breakfast in bed (That NEVER happens) with coffee, toast, and strawberries! It lasted 2 minutes before Brayden's blood sugar bottomed out and we had to get it kicking with the real breakfast. Wanna hear what he ate? Let's say the steroids are working; he's prepping his body for Phase 2 of treatment. And did I reassure you he's gained the weight back he lost in the hospital? We're so celebrating he's eating and he's healthy. It still amazes me to compare his eating habits from 3 weeks ago to now. NIGHT AND DAY!! Two weeks ago, breakfast could be yogurt, wheat germ, MAYBE a granola bar or nutri-grain bar. On another day, small bowl of oatmeal and a few blueberries with a BABY glass of milk. On a fun morning, a cheese omelet and turkey bacon (his fav). So the typical Jones breakfast now? Banana (to tide him over until I can finish cooking), 3 eggs, 4 slices turkey bacon, whole wheat english muffin, my piece of toast I didn't get to fast enough, 2 glasses of milk (we've all but packed away the baby cups), AND, some yogurt and granola. This is the part where I thank Clorox again so I can divert my grocery funds away from the cleaning supplies and detergents and be thankful to use them to feed our growing boy!!!!! Through the family calls yesterday, he was proud to repeat the morning menu for his grandparents. We're going to stop there with the menu and not bore you with the other meals (and snacks) to get through. I'm definitely working to be as creative and healthy as possible. Thankfully, he's back loving his fruits and having his salads at dinner and gulping down the V8, so his old tastes are back again and it's helping him get revved up and ready for Phase 2, where his appetite may diminish. So you won't hear me complaining about what he's eating now...
DISCLAIMER: Don't judge Brayden as being too pale next to my natural (ahem) tan skintone. Somehow, my tan is holding on from before! And he always looks that pale in our pictures together.
So along with a lovely day of breakfast in bed, there were cards that were such a treat to receive and UNO! Bray and I love a good game. Dad? Not so much....So I'm opening our new pack of UNO cards and shuffling the deck and dealing when we get our QUOTE OF THE DAY! Mom: "Who goes first?" Brayden: "I'll let you go first, mom...since it's Mother's Day." Which is a SHOCKER since it is ALWAYS the other way around. We don't keep score, but I beat him 2 games to 1 - ha!
We've honestly been celebrating the past 48 hours the best days EVER! He woke up with a renewed energy yesterday. He's been up and playing and seems to be retaining more and was EAGER for schoolwork again and knocked it out! He's done so great. He was asking to help with dinner, clean the counters, fold laundry. My little man was back! All the hugs and smiles certainly make things easier for me as a momma. We're so thankful for these good days and that he's still feeling good. Momma's trying to not panic as much. From my itchy throat and a sneeze scaring me into thinking I was getting sick to Brayden's miniscule paper cut that we thought was nothing (even after cleaning it) that was a little pink yesterday morning. I know it's harder for him to heal right now, but that paper cut definitely was weighing me down. Things are looking better and we're preparing for our next trip to Little Rockin 2 days. Then please pray for us for next week's visit. It's the biggie and we're probably going to plan to stay overnight since he'll be having so many more procedures done and we don't know how late it will be before they get him all set to go home. I'll try to post as soon as I can the results that we'll have on his bone marrow blasts and spinal. That is the day we're hoping to hear early Remission...May 20th. Pray for us because Brayden will not be able to eat after midnight the night before and if you were paying attention in the earlier part of the post, this could get ugly on the 3 hr drive down....Love to you all!
Saturday, May 9, 2009
I told my sisters this computer will soon be my nemesis. I can't do anymore research and, what's scary, is I barely did any last night. I can't hear of other kiddos and other stories of those who have Brayden's same diagnosis because I can't handle the thought that he might face the same struggles or obstacles or length of time for treatment, recovery, relapse. All those ugly words. So I'm being selfish and not doing anymore. I've armed myself with what I need to know, how to take care of Brayden now, and will have to stay focused on where we're at. I thought I could reach out to other families and mom's and look to those kiddos to offer support to Brayden but those thoughts scare me and I want to protect him from that right now. I know I can't forever, but I just can't see putting him through that. So sorry for being selfish today. I had to get some things out and maybe be real and show everyone, yes, we did well for a while, but it's really weighing on us right now. The magnitude of the battle ahead is setting in and it's so painful. Please pray for us, when you can, for comfort, peace, and remembrance to let God help us shoulder the burden of this. It's so easier said than done, again, I think especially for us mommas.
In this tough couple of days, I've found myself being thankful. Thankful for the strangest things I never could have imagined to be thankful for before. It's aggravating that I am thankful for those things in one aspect...and calming in another. Maybe that's what will help us keep going. It's what helped us in the early days. I wanted to share a few of them with you and I plan to re-read and remember we do have so much to be thankful for during these times.
Thankful for...catching this disease when they did. Thankful for an ER visit; a Dr. that didn't over-medicate and give him steroids 4 weeks before which could have been catastrophic to the chemo effectiveness. Thankful if Brayden was carrying these cells, they were caught early in his life; later is so much more difficult to cure. Thankful he's our only child. It's hard even to read that when we were so ready for another little one. But I know now it's helping me put my sole focus on him and his health, care and well-being. It's helping to keep our family unified in this fight. We don't have to worry about germs from a little one, or that little one feeling left out, or trying to protect them from the hurt of seeing their big brother go through this, or dividing our family in trying to take care of everyone. I'm thankful he didn't have to have any invasive surgery. He wasn't strong enough to make it early through that and I'm thankful there was no reason to and that his early healing kept him from that. I'm thankful for the Dr.'s and Nurses and staff at the ER, the Angel 1 crew, the PICU staff and Hem/Onc teams at Arkansas Children's Hospital. I'm thankful for the moments when those God Hugs come...they keep me going. I'm thankful we're home and only have to travel 250 miles to get to ACH. We could be spread further apart or be in another facility much further away from home. I'm thankful Hershey's with us and can stay. Thankful for the effectiveness of the treatment so far. Thankful for no fluid around his heart; healthy liver and kidneys; thankful for Stage 2 cells in his brain and spinal fluid and not Stage 3. Thankful for Rapid Early Response in his bone marrow to the treatment. Thankful for Brayden's positive spirit and his mature handling of this journey he's now been placed to walk. Thankful for all the family and friends and support we've received both in visits to ACH, letters, emails, phone calls, care packages, and most of all, prayers. Thankful for his school, their support, and the prayers and love of the entire ACA family. Thankful for our jobs and being able to keep our healthcare coverage, getting a paycheck, and being blessed with a home and cars, things that so many don't have. Thankful for my little family that provides Brayden with a mom and dad that love each other, have faith in God, and almost 13 years together to prepare us for this journey we will now walk together. Thankful for the most amazing son who loves big, cares so much for others, laughs and loves to have fun, enjoy life and finds joy in the smallest of moments...thankful for his hugs that give me that boost I need and thankful for his endurance to keep doing the things he doesn't like but that he knows will help him. I'm thankful for his prayers and his faith in God; for his acceptance of Jesus almost 2 years ago. I'm thankful for Brayden.
Friday, May 8, 2009
Thanks, Mrs. Campbell. The prayer map is such a great idea (and, yes, a great geography lesson). Brayden sees it everyday and was loving seeing all the tabs he got to put all over the US (and New Zealand!) showing him how many people are praying for him. It was pretty emotional for mom writing out the tabs and going thru all the emails and picking up all the locations from those who have sent them in...so neat! What a physical representation for him to see each day of how many prayers are being sent up for him! And let me assure you, he placed each and every one of them!!!
Brayden wants everyone to know: "I'm doing really good. Thanks for asking. I'll see you guys soon once I get to feelin' better."
To Kyle - my favorite Star Wars character is Plo Koon. Just kidding! It's really Anakin - before the dark side.
To Lauren L. - About my DS games, now I have: Legos Star Wars, I have Super Mario Bros, Lego Batman, I have Phineas & Ferb, Trackmania, Super Collapse, Ultimate Band, Shaun White Snowboarding, Collapse Pharaoh, 7 Wonders, Sonic Rush, and Club House Games. WHEW!
To ACA 3rd graders - Hi! Thanks for praying for me. Hopefully you guys are enjoying school.
We've gotten some fun packages lately. Thank you for all the emails, cards, notes of encouragement. Thank you to Miss Dorothy for the cool Star Wars Legos. Have I said yet how stunned I am we have had no duplicates? Brayden opened them right away and is putting them together as we speak (um, type!). He loved the sticker book and was working on it earlier! That was so sweet and thoughtful of you to send to him. Thank you for the sweet card. To Kristin & Family - thank you for the awesome games for the car/travel! To Sara R. and Family - thank you for the gift card. It is so appreciated. To Robert & Marcia - you are part of our family and always have been. Your card brought me to tears and your gift was overwhelming. To Nini & Papa David - thanks for hooking Brayden up with some snacks (his words) and for the adorable scrapbook of Hershey. To Uncle Buddy & Aunt Vicki & Family - thank you for the card and the gift. So amazing...we feel so blessed. To the Malt-O-Meal ladies - your goodie box was amazing and we're loving it all! Brayden's put the games and DVD's to good use already and the snacks and yummy baked goods mom & dad are excited about too! The gas cards are such a blessing. I so hope I haven't left anyone out. I'm so worried I will. i try to keep things organized and remember/make notes of those we haven't thanked yet and I'm terrified I'll forget or overlook something. We appreciate everyone so much.
I think I forgot to mention the 500-mile round trip Little Rock will be each week for us. So everything is such a help and a blessing. We've both been working this week and trying to fit everything in and get in a routine. It's not been as easy as I'd hoped. We're seeing glimpses of normalcy creep in, like when we finally got to watch American Idol live again this week. It was our family routine before and we had gotten behind with the time at ACH so we were happy to get caught up and see who's left. Brayden says, "Go KRIS!" Okay, so we have been rooting for him since Day 1 being an Arkansas boy. He seems like such a genuine guy and so full of natural talent! Let's face it, though. This season is so much more talented than the previous ones, so it's been a fun one. I've gotta tell you the Quote of the Day. While hearing of the appearance of Kris in Conway (and knowing it's on our way to Little Rock) Brayden said, "Oh, we are SO going!" Yes, it now seems not so far away, but imagine mom's face when hearing him say this and thinking of the crowds of GERMS...I mean, people. No, we'll have to pass this time and watch on tv and keep rooting for him.
Thank you again for the prayers. If you didn't see your locale marked, please leave a comment and mom will happily get a tab ready for Brayden's next geography lesson!
Wednesday, May 6, 2009
"Last night I had a dream. I got up today and went back to school. It was pretty embarassing because I didn't have hair. But no one laughed at me. They know I had cancer."
School is so important to him and he misses his friends, teachers, and everyone so much! But I think he knows how much you all love him and support him and care about him and don't care about the 'stuff'. Thank you for all your love and support. There's still a long road ahead.
So we're back from Little Rock and our visit today to the Hem/Oncology Clinic at Arkansas Children's Hospital. PS - Thanks, Gracie! Champ went right along with Brayden today!! I can't remember if I've mentioned it before, but Brayden's nemesis? The long picc line and frustrating tubes? No. The bone marrow aspirate with the crazy long needle and insane medicine? No. The horrible chest tube that literally touches the tissue inside his body and has left an ugly bruise? No. The spinal taps? No. Chemo treatments? No. Not being able to breathe and racing heart rate? No. Not once has Brayden complained. Until...the nemesis showed it's ugly face. What do you ask is this crazy thing that has this power over Brayden? TAPE! It's the first time he's hurt or complained or had some tears. That hair on his arm is NOT cool when there's layers of hospital-strength tape! He cracked me up when we walked in today and said (Quote of the Day, in case you're keeping track) "Tape again - my nemesis is back."
Things went really well today. We were so surprised that 5 1/2 hrs were spent in clinic when we (seriously) thought a quick hour and we'd be out. HUH!?! We'll spend all the time we need if we have good visits like this every time. His Dr. said he looked really good! No mouth sores. His chest tube scar is closed up and healing nicely. His left lung (that had all that trouble the first night in PICU) was totally normal again and no issues. He's gained his weight back that he lost while in ACH! (They warned me he would; I didn't believe them. He's so skinny and had lost so much weight I could see his ribs not only from the front but from the back. I'm so thankful his body is healthy and he's having good nutrition. All the steroids aren't hurting either!!). They did his bloodwork and after the chemo regimen was completed 3 1/2 hrs later, they told us his counts were good. He's still Neutropenic but not in the scary, danger zone. This is why no visitors and so much restriction on his mask and why Bryan and I have to be careful of not passing any germs along to him. (PS - I'll have to share some time how I'm going to start begging for anxiety medication the next time I have to go Grocery shopping. It's amazing how differently I see things now).
Anyway, I'm rambling! It was honestly a nice drive. Everything was so beautiful and green on the way home and Bryan was saying it's honestly a beautiful drive. The sun had come out and he was able to enjoy the scenery (while Brayden and I enjoyed the trip with nature's sunglasses on: our eyelids closed). It looks like good news all the way around! We're thankful for everyone's prayers. Thankful for Brayden's good progress and response. Thankful for a safe journey and being back home!
We're starting a list for Brayden. A list of things he would LOVE to be able to do now but can't. And it's amazing how the little things mean so much. I can't wait to share it with you and we'll keep adding to it.
Love to everyone....
Tuesday, May 5, 2009
We've gotten some questions about what this thing is that I keep referring to as his picc-line. Since he wasn't stable when he came to the hospital, this was a quick placement in order for his Dr. to easily draw blood and give him meds intravenously (thank you, spell check)through his arm. In a few more weeks, he'll have this removed and have a port put in his chest. Here's what his picc-line looks like. It doesn't hurt him at all. It's really great to have it that way he doesn't have to feel a needle every time they have to give him medicine or draw blood to check his counts to see how he's doing. The down side is mom has to clean and flush it and give him medicine in it each day in both openings or lumens. We have to be sure it's clean and sterile and not miss a step and be sure we clamp them both closed. The line inside of his arm goes all the way to the top of his heart (but doesn't touch it) so we have to watch it closely to be sure it doesn't get an infection since this could make him very sick.
Here's his medicine. We use alcohol wipes and alcohol hand sanitizer a lot. This helps a lot to kill any bacteria or germs that are around. We have to be very careful when giving him his medicine that our hands are clean and his are too. He takes 24 pills each day; 12 in the morning and drinks 8oz of liquid. He does the exact same at night. He has to take this after he eats so it doesn't upset his stomach. It's actually great that he can take pills now. Before when it was a liquid he really hated one of the medicines. He said it was like acid burning his throat! OUCH! This way, he just does a lot of drinking and swallowing, so we like keeping the straws for him since it helps to gulp the water quicker and get the pills down. After Brayden takes the medicine, you can hear his tummy slosh with all that water!! He's doing great and drinking (on his own) more than 64oz of water a day! WOW!
The medicine makes Brayden's body strong to fight hard against the leukemia cells. But it also makes him VERY hungry! He's really hungry as soon as he wakes up for breakfast and will eat 3 big meals and usually 3 snacks too! We're hoping he's gained some weight back from all that he lost while in the hospital. Since Brayden's body is working so hard, it sometimes makes him very tired too. Sometimes he needs a nap or several rests during the day. He still can't go outside and play but is hoping the rain is gone when he can!!
Monday, May 4, 2009
We're working on the map and were wondering - not everyone likes to leave comments. Since I can't figure out how to add a guestbook, we thought we'd try this. But you don't have to sign up to be a follower either. Just sign this to leave a comment, click on the 'Comment As' and you can choose Anonymous. But we'd love for you to leave your name for him to see in your comment box. We'll try this and see how it goes. I know some are saying we're not posting updates enough and then I wonder if we're posting too much/too frequently. Is this still helpful for everyone? We'd love to hear from you!!
Sunday, May 3, 2009
I'm blessed with such a sweet husband. The to-do list was pretty long after being gone for a while. So I literally burst into the biggest smile of gratitude when hearing the vacuum cleaner (again after momma had vacuumed) to see he was cleaning the base boards, mini blinds, and windows. Ah, there's no better gift to give a clean-freak wife. Now matter how clean everything is, I still worry it's not good enough. And trust me, there's still a lot to cover. But we'll get there. Seeing Bryan's pain in Brayden's diagnosis was so tough. I had to remember I'm a wife too and comfort him. Then I was so chatatonic those first 36+ hours and he just led me along and helped to guide me around and take care of me. What a man I have!
I completely forgot to give credit to my Clorox hook-up! I guess ask and you shall receive! I mentioned in an earlier post last week that we needed a Clorox hook-up to get the house ready. Wow - was I in for a surprise. Waiting at my office were bags and boxes full of product! I think I could wall-paper our house in Clorox wipes! Love those! So thank you Kathie, Michael, Ken, members of the Clorox Team, whoever made it happen. We were so thankful not to have to buy more stuff at the store and were way overwhelmed at how much we had to work with! Thank you so much!!! Thank you also to Anita and your sweet girls and others from the school for the gift box for Brayden. He LOVED the giant-sized Star Wars coloring pages and has quickly picked out his first page to work on!
We've had a great weekend with Brayden. His spirits are high and when talking to him on the phone, so many have commented how great he sounds! Today has been the best day by far. We have our moments, but we're making it through. More and more reality is setting in on limitations. We were so thankful to hear from Juli in Brayden's class! You made his day by calling! I know he really can't wait until he can visit with everyone in person. And along with Brayden's determined spirit, his hair is apparently even more determined than he is. He still refuses to do something silly with it and go crazy and do a mohawk or SOMETHING since I'll really allow him to do whatever he wants. We're really surprised to be on Day 12 and no hair loss. Maybe it will be his miracle and he will be the slim percent that doesn't lose? So, mom is BEGGING now for him to let me trim it to no avail. We'll see how it goes. We're caught up on Charlotte's Web and can't wait to call in to the school tomorrow for the group discussion. We're also reading Flat Stanley and getting caught up on what few episodes he HASN'T seen of Phineas and Ferb and Suite Life of Zach and Cody. Bryan and I are officially well informed of all characters and plot lines!
Wednesday is round 3 of chemo in Little Rock. I previously got the dates wrong. May 20th is the magical day when he'll have another bone marrow aspirate and spinal. We're praying this is the day we hear "REMISSION!" Then we can move to Phase 2 of the 4 phases of treatment. For now, we'll be back in Little Rock for the next several Wednesday's for more chemo. He's doing so great on his meds here and I'm not having nightmares about his picc-line anymore since we have to flush it daily. Love to you all!
Saturday, May 2, 2009
Playing Light Sabers with her iphone (there's an App for that) with Aunt Steph at ACH
So we were all pumped to have our 2nd child, Hershey, back home. Bryan called me after picking her up from my sister's the day after we got back alerting me, "She is NOT happy with me." We helped rescue Hershey almost 2 years ago to the day. She's our adorable Chocolate Lab and learned quickly after joining our house, she is the princess. After leaving her suddenly without explanation and returning 11 days later, she was less than pleased with us. We had her an appt to get groomed before coming home so she'd be all clean for Brayden. I guess once they pulled up in the driveway, Hershey was done pouting. Seeing her run through the door, it was like slow-mo, seeing her ears flap, Brayden running toward her! I just kept hearing that old song play in my head, "Reunited, and it feels so good!" Okay, so maybe it was a different theme, but seeing Hershey and Brayden finally back together again was awesome. The family was all back home. We got lots of hugs and love and definitely a little attitude from Hershey, but I think we've made it up to her in the last couple of days now.
Things are definitely starting to hit home that we're in Isolation. We found out days 10-20 are the most critical for this stage of treatment in terms of hazards with developing secondary infection. We're on Day 11. To say we're being cautious is an under-statement. But Brayden keeps amazing us with his energy. He's gotten to visit a lot on the phone and everyone that hears him can't believe he's really fighting this. He sounds just like himself; so cheery, smiley, and goofy as ever.
Going to his school Friday afternoon was more difficult than I thought. First, the staff and Administration is amazing. It's an answer to prayer that he'll be able to stay enrolled and won't have to miss much in terms of delaying his education. We're all so thankful that even though we'll be doing a lot of work from home, hopefully Brayden can start back in January 2010 (that sounds like forever) in the 4th grade and see all his classmates again. His teacher is AWESOME! All of his teachers at ACA have been. We're so blessed with her and her heart for Brayden. Being there, though, and seeing the desks and all the activity was so hard knowing he's missing it! Reality kind of set in a little more for me towards the end of the visit. But we know it's just another thing and what's most important is his health and recovery.
All three of us have definitely felt God with us more than ever in the last rough 2 weeks. I've referred to His little 'God Hugs' I feel like He sends our way. Friday was a nice little rainy spring day. It was quiet in the morning and I heard something. The momma bird we had watched before Little Rock was so busy making her nest under the awning on our front porch. I had almost forgotten about it until I heard little tiny baby chirps! I ran to get Brayden and even though we couldn't see them, hearing them was so neat! The momma bird and Hershey still aren't friends, but they're trying to find ways to co-exist. Then, Bryan spotted a HUGE turtle under his truck, probably trying to escape the floods in our yard! When we had a break in the rain, Brayden masked up and we took a quick field trip to the driveway to check it out! It really looked like his turtle so we had to run in and, from a distance, make sure his turtle hadn't escaped! Those were definitely our God hugs for the day and were such beautiful reminders of his awesome creation.
We've gotten some special deliveries lately and wanted to send more thanks! Thanks to Gracie, Trish, Ken, and Logan for the hi through the door! Thanks for taking care of our mail while we were gone and Brayden LOVES his Build-A-Bear! Gracie, he's already decided his bear is his Little Rock chemo buddy! You did such a great job picking it out! Thanks to Uncle John, Aunt Johanna, Johnathan, Kristin, Jordan and Joel for the care package! He loved it all and couldn't get through everything quick enough. I have his lion right by his bed, too. Thanks to Uncle Danny for the awesome bat and hat from the U of A Razorback Baseball Team! WOW! We've loved our visits to the games over the years and can't wait until we can go back again. Thanks to all for the cards and continued prayers, love and support.
I take a million pictures and those first few days, didn't even think of it. But I have many to share. I thought I'd share a few with everyone and will try to share more as we continue on our journey together.
Brayden being tough during chemo 4/29 with sweet Jennifer.
Brayden's Gifts from all his classmates at ACA while still in ICU.
Thank you to Granny's Quilts for his sweet and soft Scooby-Do Blanket. These are Grandmothers with grandkids who are also fighting cancer who make these from our neighboring metropolis of Pea Ridge! We felt a little piece of home when given this at the hospital. Thank you!!
Brayden & Hershey: Reunited
Gracie's gift to Brayden: Champ Jones. How cool that the proceeds help with cancer research!!