After not having our beds for 10 days, we were all so happy to finally be back home last night! Wanna hear some more amazing miracles regarding Brayden's diagnosis from yesterday? Are you sitting down? He had another bone marrow aspirate and spinal, which would be infused with another shot of chemo for his brain. When he came back from his procedures, he had done so well again with the anesthesia. Suddenly his Dr. came back because right before Brayden was administered his medicine, he was asking for him. How sweet! He just wanted to share with us the chest x-ray showed the tumor was continuing to shrink. His blood work all looked good. And his kidneys were looking normal again! He responded well to the blood transfusion and all looks good! Bryan and I asked when we'd know the results of the bone marrow and spinal and he said within an hour or so. I asked about remission, because we heard some patients can go into remission by the 8th day. He reminded us this wasn't likely. Brayden had the aggressive "T" form of Leukemia, which has a 'slow' response to chemo. If the blasts show less than 5%, then it's called a "RER - Rapid Early Response" which was not likely. We thanked him for all he's done and he was glad to see Brayden going home. I guess we didn't need to expect to hear from anyone about those results since they're routine and don't usually produce anything worth getting excited about this early. Everyone seemed surprised we asked.
About an hour later, his Dr. came back to see us, which we didn't expect. He said he wanted us to know that Brayden had NO LEUKEMIA CELLS in his sprinal fluid!!!!!! AND - guess what? His blasts in his bone marrow - that rare RER? Brayden had a rapid early response of less than 2% in his mone marrow!!! WHAT!?!?! Can you say God? We were amazed and the Dr. said he literally couldn't possibly be doing any better. This is extremely rare for it to happen with T-cell. YEAH!!!
Going home was so stressful, but Bryan and I made it through. I won't go into all the details, but was thankful Brayden was finally able to drift off. But not before the quote of the day. I've tried to burn it in my memory, but just couldn't. He said a prayer as we were leaving Little Rock and I just burst into tears. It was the most beautiful prayer, just like our daily prayers on the way to school, but it was different. He sounded like Brayden again. Back in the car; back driving together; realizing it was spring. It was green everywhere. When did that happen? He thanked God for his ability to go home. He prayed for the other children who didn't get to go home yet, that he would help heal them. He prayed for the leaders at the Capital Building we were driving by, that God would help them make the right decisions! He prayed for our safe journey home. And I suddenly felt so peaceful again. I called Bryan after he started drifting off. We were talking about all the good-bye's we got on our way out from everyone. It's only for a time; we'll be back next week and for the next 2 yrs, but hopefully not for hospital stays every time.
Turning on our main road brought so many smiles! We just couldn't believe how beautiful everything looked! Even though we talk about it every day, I think our eyes were opened EVEN MORE! When we left, dogwoods were just starting to bloom in our neighborhood and suddenly ALL THE LEAVES were out! Seeing our pretty grass reminded me of how sweet our friend Michael was to take care of that for Bryan and us. And seeing my white Azalea had bloomed out was like a special God-hug to us. Brayden ran in the house and couldn't wait to just play! No cords connected (his picc-line is still in and will be for the duration of chemo). We saw our back windows look so pretty as all of our trees make the view look so amazing. It was spring. Momma went into cleaning mode, but we won't go there. Was it not expected?
Best part of the night, after dinner, after his 10 pills and liquid he has to drink, snuggle time on the couch filled my heart back up. It was like old times. Kisses and just holding my sweet boy and then remembering there is still hurt he has to go through. He wants to see a movie that's coming out and can't. He wants to go bowling. He wants to celebrate and go to a restaurant. He can't. Then he starts talking about his hair. I'm trying to convince him it's the one time he can do ANYTHING to his hair and mom won't care! I think a mohawk would be SO COOL! We saw another boy from a distance that had one and it's still too much for Brayden to take in. He's touching it constantly and it's starting to itch him and the Dr. told him since it was Day 8 (it falls out between day 7-10) it's the hair folicles that are dying. We're hoping he'll go ahead and just have fun with it. But he admitted he's scared people will make fun of him. My heart just breaks for him. So that's our next emotional hurdle for him. Please say a prayer he'll try to find a way to be more accepting of it and it won't be so devastating for him.
Thank you again to all of you for your prayers. We're praying now for no secondary infections now that we're home. We're praying he stays healthy and we don't have to make another ER visit or drive to Little Rock outside of our weekly visits. Driving past the hospital helipad on the way home was so surreal. We're so thankful to be where we're at.
Jones Family
November 2009
Thursday, April 30, 2009
Tuesday, April 28, 2009
Brayden K. Jones Fund
This is Lisa's sister, Stephanie. I am so appreciative of the outpouring of assistance our family has received over the last week as we have learned more about Brayden's situation. I wanted to reach out to everyone following this blog to officially communicate that a fund has been set up at Arvest Bank in Brayden's name. Although Brayden is recovering remarkably, they will still be making weekly trips to Little Rock for Chemo & Radiation. There will also be other incidentals as they continue to fight this battle over the next year.
If you would like to contribute to the fund, you may do so at any Arvest Branch whether in person or by mail. Be sure to indicate the name of the fund on your check if you choose to mail in your contribution. This is a Care Account at Arvest Bank called the Brayden K. Jones Fund.
Thank you so much for your prayers & support.
Stephanie Vaughn
If you would like to contribute to the fund, you may do so at any Arvest Branch whether in person or by mail. Be sure to indicate the name of the fund on your check if you choose to mail in your contribution. This is a Care Account at Arvest Bank called the Brayden K. Jones Fund.
Thank you so much for your prayers & support.
Stephanie Vaughn
1 Week Down
Today was a VERY busy day. Brayden's having his 2nd unit of blood going in right now to complete his transfusion. We had visits from the school teachers liaison on staff to go over some steps to ensure he graduates from 3rd grade and we're not sure yet how 4th grade will work. As of now, it will be Jan 2010 before he can go back. Stats are all still good today. The social workers brought him his beads. Each patient gets "Beads of Courage" through a program here. He really loved that but it was hard on mom hearing them recap all he's been through so far to give him the beads he'se earned from everything over the past 7 days. They completed his ecko check-up on his heart today. He had a tent-like breathing treatment to prevent pneumonia when we go home. There are a lot more preventative meds going on. The home plan, calendars, meds schedules, preventative care, etc happened today and we'll definitely have to be more organized than we ever thought of being to keep up with it all. There's a lot to remember.
Honestly, Bryan and I are totally feeling so much pressure today. Not just from the diagnosis but working back into a rhythm of life. There's still a lot to do at home and honestly, I just want to watch Brayden like a hawk and not worry about anything else. There's a lot of maintenance things we have to help him with we've not really talked about yet. Plus getting the house ready and realizing we've got to figure out work and a schedule in all of this. We've learned with him being in isolation, visitors really aren't optimal. You can't be sick or have been around someone that's sick or has a fever. Bryan and I can't come in without first changing clothes and showering. We have to limit Brayden's outside time and he'll need to wear a mask when he does, just like here, and have to wash the clothes he was in. We have to really be cautious 48 hrs after chemo with handling everything. I can't imagine how tough this is really going to be. His cousin's birthday is in two weeks and it looks like we'll miss.
Thanks to our friends Trish & Ken for getting our mail! It's the basic little things that slip our minds while in here! Thanks to Grandma Sue & Aunt Sandy (the youngest & best-looking great grandmother of any patient here!) for visiting! Brayden loved the books and Star Wars Legos! Dad has already been digging into the basket of goodies and I can't wait to use the adorable stationery. Thanks to Mrs. Wendy for the incredible Star Wars pics with Brayden in them! Thanks for the book - you are a true talent and those pics of school and all his friends were a treat. He poured over it twice. Thank you, Mrs. Melanie for the cool posters! He was so pumped over the Romo poster! Momma's got a lot of work to do at home to find places for all of this.
Prayers needed: somehow I missed that he'll have a bone marrow aspirate tomorrow and another spinal. I think this shows I'm officially out of energy reserves and stressed more than I realize. Very few kids do, but some have been known to go into remission after only the 8th day. How awesome would that be? They'll also do the spinal, check the cells again, and do another chemo shot to work against the leukemia cells that were found in his brain. He'll have another iv round of chemo tomorrow to fight off the rest of his cells in his body that are bad and we're still praying with the transfusion given today that he'll be ready to fight without compromising the good cells and organs. We're praying today's ecko will bring good results tomorrow with his heart. Please pray for me and Bryan. I haven't yet asked for this because I didn't want to be selfish. It's going to be a long drive tomorrow in separate vehicles. There will be a very nervous momma looking in the rearview mirror at my sweet boy in the back seat hopefully not more than I'm looking in front of me. There's a lot to do with picking up rx, and making sure we don't miss a step with him. I'm going to have to keep myself in check and not get overwhelmed or stay up all night obsessing about doing so many things to be sure he's in the most protected environment. And then there's work. So please pray for both of us as we sort all this out for guidance and peace and strength. Thanks to you all and sending love to all of you from Little Rock...
Honestly, Bryan and I are totally feeling so much pressure today. Not just from the diagnosis but working back into a rhythm of life. There's still a lot to do at home and honestly, I just want to watch Brayden like a hawk and not worry about anything else. There's a lot of maintenance things we have to help him with we've not really talked about yet. Plus getting the house ready and realizing we've got to figure out work and a schedule in all of this. We've learned with him being in isolation, visitors really aren't optimal. You can't be sick or have been around someone that's sick or has a fever. Bryan and I can't come in without first changing clothes and showering. We have to limit Brayden's outside time and he'll need to wear a mask when he does, just like here, and have to wash the clothes he was in. We have to really be cautious 48 hrs after chemo with handling everything. I can't imagine how tough this is really going to be. His cousin's birthday is in two weeks and it looks like we'll miss.
Thanks to our friends Trish & Ken for getting our mail! It's the basic little things that slip our minds while in here! Thanks to Grandma Sue & Aunt Sandy (the youngest & best-looking great grandmother of any patient here!) for visiting! Brayden loved the books and Star Wars Legos! Dad has already been digging into the basket of goodies and I can't wait to use the adorable stationery. Thanks to Mrs. Wendy for the incredible Star Wars pics with Brayden in them! Thanks for the book - you are a true talent and those pics of school and all his friends were a treat. He poured over it twice. Thank you, Mrs. Melanie for the cool posters! He was so pumped over the Romo poster! Momma's got a lot of work to do at home to find places for all of this.
Prayers needed: somehow I missed that he'll have a bone marrow aspirate tomorrow and another spinal. I think this shows I'm officially out of energy reserves and stressed more than I realize. Very few kids do, but some have been known to go into remission after only the 8th day. How awesome would that be? They'll also do the spinal, check the cells again, and do another chemo shot to work against the leukemia cells that were found in his brain. He'll have another iv round of chemo tomorrow to fight off the rest of his cells in his body that are bad and we're still praying with the transfusion given today that he'll be ready to fight without compromising the good cells and organs. We're praying today's ecko will bring good results tomorrow with his heart. Please pray for me and Bryan. I haven't yet asked for this because I didn't want to be selfish. It's going to be a long drive tomorrow in separate vehicles. There will be a very nervous momma looking in the rearview mirror at my sweet boy in the back seat hopefully not more than I'm looking in front of me. There's a lot to do with picking up rx, and making sure we don't miss a step with him. I'm going to have to keep myself in check and not get overwhelmed or stay up all night obsessing about doing so many things to be sure he's in the most protected environment. And then there's work. So please pray for both of us as we sort all this out for guidance and peace and strength. Thanks to you all and sending love to all of you from Little Rock...
Monday, April 27, 2009
More Good News and Plan for Coming Home
I have over-used the word Wow but until I get my thesaurus, it's all I know to say. Brayden continues to improve and respond well to his treatments. His body is staying strong and is functioning so well and so much better than a week ago. His lungs are healthy. His counts are good. No fever. After his renal ultrasound today, his liver and kidneys still look good with one minor thing, but not a concern at this point. They took one iv off to continue reducing his fluids since my water-drinker is taking in plenty of fluids. What's cool is we all know it's God and the power of prayer and Brayden certainly knows it too. Today we were talking about how miraculous his progress has been and he said, 'Do you know why?' And we said, 'yeah, do you?' And he said, 'Yeah, it's God. It's all those prayers.' I'm so thankful, as my mother-in-law so wisely reminded me today, that God doesn't expect us to be able to handle it all; he WANTS us to look to Him to help shoulder the burden. But that doesn't mean only if we're the perfect Christian; which doesn't exist. It means He'll meet us right where we are. I remember pacing the floor at 4am in the PICU begging God to accept my prayers. He does; I didn't want my failures to prevent our prayers from reaching Heaven. But that's the awesome God we serve. He meets us right where we are if we just ask. And we definitely cried out for Him. What else do you do?
Quote of the Day: Bray has to keep measurements of his 'output.' So with our recent visitors, I love how he came up with a new term for announcing the need to have everyone leave the room. Last Friday, it was, "Hey, guys? Time for a commercial break!" LOVE IT! He's still using it to alert us to it and it still makes me giggle! One of his Dr.'s heard him do it today and thought it was a riot!
Okay, okay. I've put it off long enough. So now with the coming home part. They walked in mid-morning and announced, "So, you're going home Wednesday?" I think my gaping mouth and bug-eyes scared them into silence. This protective cocoon (no matter how uncomfortable for mom and dad) is so keeping my baby safe. And if, Heaven forbid, anything happens, the best Dr.'s and Nurses are right here. But home? That's too far away! And I need to steam clean my carpets and hook a 10-gallon tank of bleach up to the water hose and let loose on the inside of the house, and can we have our dog in the house still and does he need a new mattress and...So I realized the step I've been dreading I needed to face in my OCD way of making lists, which I love to do. Don't get me wrong, him coming home is a miracle exactly 7 days ago from (literally) right now is something I feared we'd never see. It's a wonderful thing! But I want him to be safe and can I do it? I don't want to make him sick! I almost missed him being so sick before. Will I miss it again? After my mommy-panic/freak out (in private, of course) his awesome Dr. totally brought me back down from my germa-phobe ledge. Hershey can stay and I'm so glad. Grieving the loss of her being our pet was something I worried would give Brayden more than he could deal with...So of course I'll be cleaning and obsessed more than ever. I guess I'll need to phone a friend for my Clorox hook-up. I'm set on Germ-X. We're still talking about all the other million things to do, but she reassured me, we all 3 need to be home. My wise little sister reminded me these are the same feelings I had when he was a newborn. But I made it then! I can do it again. So I'm making my lists and making plans to again take my baby home from the hospital and building confidence that he'll do just as awesome as he did exactly 9 years and 3weeks ago!!!
So, here's our plan and what we are praying for: Ecko was pushed to tomorrow due to so many sick kiddos here that needed it more than he did. He will likely receive a blood transfusion tomorrow or Wednesday. He'll get his 2nd round of chemo on Wednesday, then we'll be discharged a few hours later. They're prepping me with lots of charts and instructions. Today we learned how to flush his pic-line. We have to be sanitary with it and do this daily. SCARY! But I know if I trust God and let the fear go, I can do it. We can do it. We'll return again next Wednesday and the following for chemo treatments. The 2nd Wednesday (May 13th) will be another bone marrow aspirate and spinal. This will be when we hear if he is in remission and can move from the Induction phase of treatment to the next.
What a wonderful surprise, right? Brayden's really excited. I'm freaking over food. There are a lot of side effects to all his meds he'll have to take at home. After losing 8 lbs since Monday night, I'm hoping he'll have what he needs to keep his strength up.
Thank you to Jeff & Dee for the DS games! I'm still amazed he hasn't had 1 duplicate! He has quite the library of games now and, of course, is doing a great job of breaking them in!!
Brayden loved getting around again today and taking a trip thru the hall and another round outside in the garden after the rain stopped. He had a fun surprise with getting to paint and draw with an artist today that came to his room. The on-site school teacher came to see him and talk to us about his education plan and Homebound Education. Later, he got to visit the Playroom and play Wii! AND...get to visit Cooper! He is the sweetest Golden Retriever, 120lbs of love and hugs for the kiddos. Then I started looking around. My eyes filled with tears of gratitude. I know this is a huge battle ahead of us and Brayden has been through a lot, but I suddenly realized how blessed we are. This could be so much worse. He could be in a wheel chair and not have use of his limbs. He could have a tube down his throat. He could be in an isolation bed. And, we could have missed the signs and waited 1 day too long and not have caught this in time. Thank you, Jesus, for nudging Bryan and I to take Brayden to the ER when we did. You have blessed us with miracles beyond what we thought was possible a week ago. Our cup runneth over from all that you have done to save our sweet boy. We continue to lean on You and trust You more letting go of what we thought was us being in control for keeping our sweet boy safe. We know he is Your child, and You've entrusted us for a time with him. We pray we can do our best to love and raise him in the knowledge of You. Amen.
Quote of the Day: Bray has to keep measurements of his 'output.' So with our recent visitors, I love how he came up with a new term for announcing the need to have everyone leave the room. Last Friday, it was, "Hey, guys? Time for a commercial break!" LOVE IT! He's still using it to alert us to it and it still makes me giggle! One of his Dr.'s heard him do it today and thought it was a riot!
Okay, okay. I've put it off long enough. So now with the coming home part. They walked in mid-morning and announced, "So, you're going home Wednesday?" I think my gaping mouth and bug-eyes scared them into silence. This protective cocoon (no matter how uncomfortable for mom and dad) is so keeping my baby safe. And if, Heaven forbid, anything happens, the best Dr.'s and Nurses are right here. But home? That's too far away! And I need to steam clean my carpets and hook a 10-gallon tank of bleach up to the water hose and let loose on the inside of the house, and can we have our dog in the house still and does he need a new mattress and...So I realized the step I've been dreading I needed to face in my OCD way of making lists, which I love to do. Don't get me wrong, him coming home is a miracle exactly 7 days ago from (literally) right now is something I feared we'd never see. It's a wonderful thing! But I want him to be safe and can I do it? I don't want to make him sick! I almost missed him being so sick before. Will I miss it again? After my mommy-panic/freak out (in private, of course) his awesome Dr. totally brought me back down from my germa-phobe ledge. Hershey can stay and I'm so glad. Grieving the loss of her being our pet was something I worried would give Brayden more than he could deal with...So of course I'll be cleaning and obsessed more than ever. I guess I'll need to phone a friend for my Clorox hook-up. I'm set on Germ-X. We're still talking about all the other million things to do, but she reassured me, we all 3 need to be home. My wise little sister reminded me these are the same feelings I had when he was a newborn. But I made it then! I can do it again. So I'm making my lists and making plans to again take my baby home from the hospital and building confidence that he'll do just as awesome as he did exactly 9 years and 3weeks ago!!!
So, here's our plan and what we are praying for: Ecko was pushed to tomorrow due to so many sick kiddos here that needed it more than he did. He will likely receive a blood transfusion tomorrow or Wednesday. He'll get his 2nd round of chemo on Wednesday, then we'll be discharged a few hours later. They're prepping me with lots of charts and instructions. Today we learned how to flush his pic-line. We have to be sanitary with it and do this daily. SCARY! But I know if I trust God and let the fear go, I can do it. We can do it. We'll return again next Wednesday and the following for chemo treatments. The 2nd Wednesday (May 13th) will be another bone marrow aspirate and spinal. This will be when we hear if he is in remission and can move from the Induction phase of treatment to the next.
What a wonderful surprise, right? Brayden's really excited. I'm freaking over food. There are a lot of side effects to all his meds he'll have to take at home. After losing 8 lbs since Monday night, I'm hoping he'll have what he needs to keep his strength up.
Thank you to Jeff & Dee for the DS games! I'm still amazed he hasn't had 1 duplicate! He has quite the library of games now and, of course, is doing a great job of breaking them in!!
Brayden loved getting around again today and taking a trip thru the hall and another round outside in the garden after the rain stopped. He had a fun surprise with getting to paint and draw with an artist today that came to his room. The on-site school teacher came to see him and talk to us about his education plan and Homebound Education. Later, he got to visit the Playroom and play Wii! AND...get to visit Cooper! He is the sweetest Golden Retriever, 120lbs of love and hugs for the kiddos. Then I started looking around. My eyes filled with tears of gratitude. I know this is a huge battle ahead of us and Brayden has been through a lot, but I suddenly realized how blessed we are. This could be so much worse. He could be in a wheel chair and not have use of his limbs. He could have a tube down his throat. He could be in an isolation bed. And, we could have missed the signs and waited 1 day too long and not have caught this in time. Thank you, Jesus, for nudging Bryan and I to take Brayden to the ER when we did. You have blessed us with miracles beyond what we thought was possible a week ago. Our cup runneth over from all that you have done to save our sweet boy. We continue to lean on You and trust You more letting go of what we thought was us being in control for keeping our sweet boy safe. We know he is Your child, and You've entrusted us for a time with him. We pray we can do our best to love and raise him in the knowledge of You. Amen.
Sunday, April 26, 2009
From Brayden...
Brayden wanted to put something on his 'bloggie'. Have I said how much I love that he calls it that? Anyway, here's what Brayden wanted me to type for him:
"Thanks for praying for me. Um, I'm doing really well. Your prayers really helped. Thanks again. Thank you for all the gifts. I'm really enjoying them. The garden is really beautiful. I went out there today. And I got my chest tube out. And it feels GREAT. I just wanna say thank you to Mrs. McCall for her and 3rd grade making the nice cards for me. I really love it. I really miss all you guys that are out there praying for me. I would just wanna say a special thanks to the ACA school for all they did for me too. Thank you for all the cards. I really enjoy them. They are so cute. Thanks again for praying for me. That's all."
Okay, hearing this from him for the first time, I'm literally choking up. This sweet boy knows he's a miracle and it's thanks to prayer. Thank you to everyone on behalf of all of us.
"Thanks for praying for me. Um, I'm doing really well. Your prayers really helped. Thanks again. Thank you for all the gifts. I'm really enjoying them. The garden is really beautiful. I went out there today. And I got my chest tube out. And it feels GREAT. I just wanna say thank you to Mrs. McCall for her and 3rd grade making the nice cards for me. I really love it. I really miss all you guys that are out there praying for me. I would just wanna say a special thanks to the ACA school for all they did for me too. Thank you for all the cards. I really enjoy them. They are so cute. Thanks again for praying for me. That's all."
Okay, hearing this from him for the first time, I'm literally choking up. This sweet boy knows he's a miracle and it's thanks to prayer. Thank you to everyone on behalf of all of us.
The Back Story
So, for those who didn't hear how we got to this point, I wanted to fill in the gaps. How in the world did we end up here? Brayden has always been an incredibly healthy kid. This is the baby that never had an ear infection or needed antibiotics til after he was 2. Well, about 5 weeks ago now, several kiddos at school were sick and there was a nasty cough going around. We noticed his cough got deeper and quickly took him to the Dr. He was diagnosed with Bronchitis and borderline pneumonia, which was surprising since it came on so fast. So, an inhaler, antibiotic and prescription strength decongestant later, he started having less of a cough and seemed to be better. 2 weeks later, he went in for a follow-up visit and they said his lungs sounded clear.
Fast forward to this past weekend. Friday night we went out to dinner with our friends Danny & Kathleen and he was great. I noticed he had a slight cough(maybe 3 times a day I'd hear him) over the weekend, and I remember thinking he must have been running around because his breathing was loud. We went ahead and gave him a puff of the inhaler and used the extra decongestant the Dr. said to in case it came back. I think everyone heard about Monday, April 20th when everything changed. He got up and had a great breakfast, totally normal school day. Mom brought snacks for the SAT's and Brayden was thrilled for a week without homework. With 70 degree temps in the forecast, dad had plans for doing some fun activities after work and school to make the most of the awesome spring days. Monday he played hard at recess, I talked to him on the phone from work after school, he had a great day. Bryan took him to the driving range to hit some golf balls and enjoy the sunshine. Bryan called me on the way home and said he thought maybe Brayden was having an asthma attack. I got upset because why say he has something? Bryan has had it and that's a scary thing for me. He said he was breathing really hard. So he went ahead and headed on home for dinner and we gave him a puff of the inhaler, just in case.
I get home from work to cook dinner and Brayden's kind of laying around. I didn't really notice anything and he was telling me about his day and how a nice man shared a bucket of balls with him at the driving range. I went about fixing dinner and Brayden went to play. Dinner's ready, and Brayden isn't hungry. We know when he isn't having a growth spurt, he may not eat as much, but he always eats something. He said he didn't 'feel like myself' and wanted to lay down. I thought, uh-oh. It's test week and he's coming down with something. So I told him it was okay; he could rest. Bryan and I ate and I went and asked again if he wanted someting. That's when I noticed. He looked pale. So I casually laid down beside him and just listened. He was breathing SO FAST and SO HARD! I tried to keep his focus off of my flash of panic. I put my hand on his heart. Bryan said, we should take him in. I thought, well if we wait til morning and take him to the clinic before school, he might be late. And I kept feeling his heart and his breathing and watching him quietly. I looked over at Bryan and said, "Let's go." Brayden had a slight panic that we were leaving now to do to the Dr. We grabbed a jacket and my purse and a book for him. While in the quiet truck, I started realizing how fast he was changing. His breathing was more rapid and even though he didn't complain, something was obviously going on. We both thought pneumonia. We headed to the ER.
The next few hours would forever change our lives. I remember being frustrated we had to wait to be seen. When you walk in and say, "my son can't breathe" I figured that preceeded other concerns. We go back FINALLY and they want to do a chest x-ray after seeing his pulse-ox so low. I remember looking at the x-rays and I asked the technician, 'what's wrong with his left lung?' I could see one full right lung and the left smaller than the size of a fist. We went back to his room and things went from slow-motion to fast-forward. They were putting him on oxygen, drawing blood, and quickly sending him back for a cat-scan. A cat-scan for pneumonia? What's going on? This time I watched the new technician and when I saw his face, I knew something bad was wrong. I felt like I was going to puke. What was it? He caught me looking at him and quickly changed his face. So we get back his room and they're drawing blood again. Brayden got so sick all of a sudden and was having cold sweats and not feeling well at all. Then I realized, why did they draw blood twice? The nurse told me to do some tests again. Huh? I just wasn't putting the pieces together fast enough. Suddenly, we had the scene we all have nightmares about. The Dr. walked in and asked to see mom and dad. She took us to that room and Bryan and I were petrified. Something was wrong. She said they found some irregularities in his blood and saw a mass on his chest, and honestly, the rest is a blur and a memory I don't want to relive again. I remember I couldn't get her to talk fast enough. What did this mean? What was wrong? Then she said they were sending him to Little Rock to Arkansas Children's Hospital. Fast-forward to trying to figure out how in the world to stand and tell Brayden what was happening.
I was so thankful that Angel One, the flight crew to ACH, allowed me to go along. I don't remember breathing or taking my eyes off Brayden or the monitors the entire flight. I know that time must have been so painful to Bryan to watch them wheel Brayden out and we were both off. Then he had to face the house, emergency packing, and the drive that would be torture by re-living what we had just experienced. We arrived at Arkansas Children's Hospital less than an hr later after taking off a little after 1:30 am. Walking thru those doors here at ACH hit me with a cold dose of reality how sick these kiddos were. How in the world was Brayden here? There was a flurry of activity and we now know those first few hours were really scary. I knew they were for me, but I didn't realize how much they were for Brayden. In just a few short hours, the left side of his chest didn't rise and fall when he breathed. His whole body was working to breathe and his heart rate was above 150 and not falling below. Even while on 5-6 liters of Oxygen, his pulse-ox was still not getting above 93. Intubation level- this was bad. I remember pacing the floor behind his bed after he finally fell asleep around 3 and just crying and praying and begging God to help save my sweet boy. What else do we do in those moments? I'm thankful I knew He was there for me in those moments. I couldn't imagine how I was going to not have a nervous breakdown. The gravity of it all weighed on me so heavily I didn't think I could stand or keep walking. It was too much.
What we were told early is there was a 3-inch mass (aka the Death Star) in his chest wall above his heart. It was pushing his trachea and heart out of the way so it could grow. There was a lot of fluid on his left side and his lung was diminished and not really in use. Within hours, they were warning us about the risks for sedation for him, but it was needed to do a bone marrow test and put in a chest tube. Bone marrow test? I knew it was painful and was just hoping he could let it be done without pain. We signed a lot of documents - anything to help him! Anesthesia was so dangerous, but we were rejoicing that he came through it. Then the waiting game began. Our Dr. evaluated the cells and also sent them to the University and we would have them back in 4 hrs. He told us the tumor would double in size every 24 hrs and he said the awful words Lymphoblastic Leukemia. The only question was which of the two types did Brayden have? They sent him for another catscan to eetermine if the other organs had been infiltrated. They did an ecko to check for fluid on his heart. The good news from Tuesday night is that there was no fluid visibile on his heart. We were given a 45-min debriefing with our Dr. and all our family around us about 9 that night. We knew what version and we had a plan. We needed to start chemo soon. But we found out later Brayden wasn't even stable enough to do the other steps needed to complete his analysis. The Dr. told us his bone marrow was full of the luekemia and we would do a spinal tap the next day to determine if it was also in his brain. He walked us through the treatment plan and all the side effects and possible results we could have and told us we would be here anywhere from a week to a month depending on how he responded to chemo.
I remember not wanting to leave Brayden's side and seeing how pale and sick he really was and how every hour left me looking at him and imagining the fight that was going on. He slept restlessly and cried "this just doesn't make sense!" He just wanted some water or ice but due to all the tests and procedures, they wanted him on an empty stomach.
Wednesday morning, he was worse. Overnight his white blood cell count had doubled and the 3 in tumor was now 6 in. This had just gotten so bad so fast. After doing the emergency pic line to get some medicine going to his heart on Tuesday and enabling them easier access for him, they were going to do the spinal and do another pic line with another sedation. They began his first treatment of chemo a few short hours later. I remember sitting there watching this medicine go into his body knowing what it was going to do and wondering how long we'd be where we're at. Tuesday and Wednesday were beyond measure the 2 worst days of our lives.
We knew we were surrounded and uplifted in prayer. How else were we holding it together, although not that well, and still being strong for Brayden. You can see my original post from Thursday where after1 day of treatment how miraculously his progress had improved. And here we are...
We don't yet know why and may never. We know this is going to be a tough journey for all of us and I wish I could take it all and carry it for Brayden. We've been told this treatment will continue for a while and we're here to fight and hopefully walk the journey in the light of God's love and His grace and His healing.
Fast forward to this past weekend. Friday night we went out to dinner with our friends Danny & Kathleen and he was great. I noticed he had a slight cough(maybe 3 times a day I'd hear him) over the weekend, and I remember thinking he must have been running around because his breathing was loud. We went ahead and gave him a puff of the inhaler and used the extra decongestant the Dr. said to in case it came back. I think everyone heard about Monday, April 20th when everything changed. He got up and had a great breakfast, totally normal school day. Mom brought snacks for the SAT's and Brayden was thrilled for a week without homework. With 70 degree temps in the forecast, dad had plans for doing some fun activities after work and school to make the most of the awesome spring days. Monday he played hard at recess, I talked to him on the phone from work after school, he had a great day. Bryan took him to the driving range to hit some golf balls and enjoy the sunshine. Bryan called me on the way home and said he thought maybe Brayden was having an asthma attack. I got upset because why say he has something? Bryan has had it and that's a scary thing for me. He said he was breathing really hard. So he went ahead and headed on home for dinner and we gave him a puff of the inhaler, just in case.
I get home from work to cook dinner and Brayden's kind of laying around. I didn't really notice anything and he was telling me about his day and how a nice man shared a bucket of balls with him at the driving range. I went about fixing dinner and Brayden went to play. Dinner's ready, and Brayden isn't hungry. We know when he isn't having a growth spurt, he may not eat as much, but he always eats something. He said he didn't 'feel like myself' and wanted to lay down. I thought, uh-oh. It's test week and he's coming down with something. So I told him it was okay; he could rest. Bryan and I ate and I went and asked again if he wanted someting. That's when I noticed. He looked pale. So I casually laid down beside him and just listened. He was breathing SO FAST and SO HARD! I tried to keep his focus off of my flash of panic. I put my hand on his heart. Bryan said, we should take him in. I thought, well if we wait til morning and take him to the clinic before school, he might be late. And I kept feeling his heart and his breathing and watching him quietly. I looked over at Bryan and said, "Let's go." Brayden had a slight panic that we were leaving now to do to the Dr. We grabbed a jacket and my purse and a book for him. While in the quiet truck, I started realizing how fast he was changing. His breathing was more rapid and even though he didn't complain, something was obviously going on. We both thought pneumonia. We headed to the ER.
The next few hours would forever change our lives. I remember being frustrated we had to wait to be seen. When you walk in and say, "my son can't breathe" I figured that preceeded other concerns. We go back FINALLY and they want to do a chest x-ray after seeing his pulse-ox so low. I remember looking at the x-rays and I asked the technician, 'what's wrong with his left lung?' I could see one full right lung and the left smaller than the size of a fist. We went back to his room and things went from slow-motion to fast-forward. They were putting him on oxygen, drawing blood, and quickly sending him back for a cat-scan. A cat-scan for pneumonia? What's going on? This time I watched the new technician and when I saw his face, I knew something bad was wrong. I felt like I was going to puke. What was it? He caught me looking at him and quickly changed his face. So we get back his room and they're drawing blood again. Brayden got so sick all of a sudden and was having cold sweats and not feeling well at all. Then I realized, why did they draw blood twice? The nurse told me to do some tests again. Huh? I just wasn't putting the pieces together fast enough. Suddenly, we had the scene we all have nightmares about. The Dr. walked in and asked to see mom and dad. She took us to that room and Bryan and I were petrified. Something was wrong. She said they found some irregularities in his blood and saw a mass on his chest, and honestly, the rest is a blur and a memory I don't want to relive again. I remember I couldn't get her to talk fast enough. What did this mean? What was wrong? Then she said they were sending him to Little Rock to Arkansas Children's Hospital. Fast-forward to trying to figure out how in the world to stand and tell Brayden what was happening.
I was so thankful that Angel One, the flight crew to ACH, allowed me to go along. I don't remember breathing or taking my eyes off Brayden or the monitors the entire flight. I know that time must have been so painful to Bryan to watch them wheel Brayden out and we were both off. Then he had to face the house, emergency packing, and the drive that would be torture by re-living what we had just experienced. We arrived at Arkansas Children's Hospital less than an hr later after taking off a little after 1:30 am. Walking thru those doors here at ACH hit me with a cold dose of reality how sick these kiddos were. How in the world was Brayden here? There was a flurry of activity and we now know those first few hours were really scary. I knew they were for me, but I didn't realize how much they were for Brayden. In just a few short hours, the left side of his chest didn't rise and fall when he breathed. His whole body was working to breathe and his heart rate was above 150 and not falling below. Even while on 5-6 liters of Oxygen, his pulse-ox was still not getting above 93. Intubation level- this was bad. I remember pacing the floor behind his bed after he finally fell asleep around 3 and just crying and praying and begging God to help save my sweet boy. What else do we do in those moments? I'm thankful I knew He was there for me in those moments. I couldn't imagine how I was going to not have a nervous breakdown. The gravity of it all weighed on me so heavily I didn't think I could stand or keep walking. It was too much.
What we were told early is there was a 3-inch mass (aka the Death Star) in his chest wall above his heart. It was pushing his trachea and heart out of the way so it could grow. There was a lot of fluid on his left side and his lung was diminished and not really in use. Within hours, they were warning us about the risks for sedation for him, but it was needed to do a bone marrow test and put in a chest tube. Bone marrow test? I knew it was painful and was just hoping he could let it be done without pain. We signed a lot of documents - anything to help him! Anesthesia was so dangerous, but we were rejoicing that he came through it. Then the waiting game began. Our Dr. evaluated the cells and also sent them to the University and we would have them back in 4 hrs. He told us the tumor would double in size every 24 hrs and he said the awful words Lymphoblastic Leukemia. The only question was which of the two types did Brayden have? They sent him for another catscan to eetermine if the other organs had been infiltrated. They did an ecko to check for fluid on his heart. The good news from Tuesday night is that there was no fluid visibile on his heart. We were given a 45-min debriefing with our Dr. and all our family around us about 9 that night. We knew what version and we had a plan. We needed to start chemo soon. But we found out later Brayden wasn't even stable enough to do the other steps needed to complete his analysis. The Dr. told us his bone marrow was full of the luekemia and we would do a spinal tap the next day to determine if it was also in his brain. He walked us through the treatment plan and all the side effects and possible results we could have and told us we would be here anywhere from a week to a month depending on how he responded to chemo.
I remember not wanting to leave Brayden's side and seeing how pale and sick he really was and how every hour left me looking at him and imagining the fight that was going on. He slept restlessly and cried "this just doesn't make sense!" He just wanted some water or ice but due to all the tests and procedures, they wanted him on an empty stomach.
Wednesday morning, he was worse. Overnight his white blood cell count had doubled and the 3 in tumor was now 6 in. This had just gotten so bad so fast. After doing the emergency pic line to get some medicine going to his heart on Tuesday and enabling them easier access for him, they were going to do the spinal and do another pic line with another sedation. They began his first treatment of chemo a few short hours later. I remember sitting there watching this medicine go into his body knowing what it was going to do and wondering how long we'd be where we're at. Tuesday and Wednesday were beyond measure the 2 worst days of our lives.
We knew we were surrounded and uplifted in prayer. How else were we holding it together, although not that well, and still being strong for Brayden. You can see my original post from Thursday where after1 day of treatment how miraculously his progress had improved. And here we are...
We don't yet know why and may never. We know this is going to be a tough journey for all of us and I wish I could take it all and carry it for Brayden. We've been told this treatment will continue for a while and we're here to fight and hopefully walk the journey in the light of God's love and His grace and His healing.
Sunshine & Fresh Air
What an awesome Sunday! First, we had a tough night. The chest tube removal got put off a few times. It was so sad to hear they were bombarded with a lot of new kids last night. At midnight they came in and we were terrified at how painful it would be. They said they wanted him to scream as they pulled out the tube so his lungs would expand. They got ready to pull and Brayden literally did not make a sound. Bryan and I were so relieved. The Dr. kept saying how strong and brave he is! We waived bye to the nasty tube and the 2 liters of fluid they had taken out of him since Monday and breathed a prayer of thanks. He had 2 chest x-rays that followed to confirm no air pockets in his lungs from the tube. At 2:00, we finally drifted off. Out of precaution, they kept the monitors on him last night and again, wow. Without the chest tube and oxygen, and only Brayden (and many miracles from God), he was breathing and oxygenating at 100% with a normal heart rate. Yeah!
I forgot to mention yesterday was his first day eating 3 meals!! Today he had another good breakfast. The Dr. came in this morning and told us (after a concern about his fluid intake/out-put) that his white blood cell count was lowering still (in the right direction). Everything still looks good. He's now lost 8 lbs since Monday night, but they're glad he's eating. We were reminded he will need his first blood transfusion this upcoming week sometime. She said his lungs sound a whole lot better. Since he's taking in so much fluid orally (my little water drinker)they're going to lower his iv fluid. He's pumped about that since the hourly 'commercial break' he'd call it would send all the visitors to the hallway. The best news? He can get up and around a LITTLE with a mask.
So, we were eager to sit in the chair. He said it felt so good! Later, after breakfast, we got ready for a trip to the garden just a few steps past his room. He was VERY independent in doing everything himself and pushing me to 'go faster!' and 'speed it up!' We were thrilled to share those amazing moments with Zach & Steph, Danny & Kathleen, my sweet friend Carrie, and Nini later. He loved the garden and the warm sun and was eager to 'walk across that bridge.' We peeked inside the other windows at the playroom where he can go as he continues to improve. He then pulled his on IV stand and took a little seat on the bench and just felt the warm breeze and the sunshine and the beautiful gift of a day we were given. After a few minutes and running through some energy, we came back inside and waited for a show from Steph & Zach. Brayden and I used our little joke of "there's an app for that" when they came in with their I-phones and had Star Wars music, light sabers and action noise coming from them while they fought! Brayden couldn't miss out on that action and was quickly dueling with Aunt Steph while a nervous mom watched the iv's and couldn't belive how far we've come in a few short days.
We were glad to have visits from Danny & Kathleen (thanks for the breakfast socialization time)and Brayden loved seeing us on the web cam! Thanks Steph & Zach for being here and bringing more sweet nectar (Starbucks) for mom & dad to keep up with the day. Thanks Nini for all your support. We had a nice game of Bingo today! I was so stunned to see my sweet friend Carrie here. Your hugs made my day and nearly pushed me past the brink of holding on. I'm so glad you got to see Brayden on his best day! Bray loved you teasing him about how good he looked. I loved seeing my friend, Machelle. I can't believe all the stuff you came with from everyone. Thank you, Bill for all the Mega Blocks goodies! Thank you, Kathy for the awesome magazines, gift card. Thank you Anita for the AMAZING comfy throw. I can't wait to use it. And the dirty clothes bag is something I am clueless on how you knew we needed. The Flat Stanley book and card and your family made me cry. Brayden loves it and it was so incredibly sweet and thoughtful!! Jean & Dave - thank you for your prayers and the card and hats. Bray loved them and we'll make time to watch Rain. Moira, Denise & Machelle - you guys hooked us up between Brayden's goodie bag and ours, we literally want for nothing. You guys thought of it all.
We'll close for now. Our families and friends have left and we're settling in for a nap (I hope!) and maybe we'll venture out for another quick walk later.
Quote of the day: last night, another Angel One flight coming in. His Dr. told him he couldn't do the chest tube because there was another sick boy coming in from Searcy. When he left and we heard the helicopter a few short minutes later outside our window, Brayden said, "Mom, I hopehe gets better like me and they can help him." Even in the middle of the night when they came back to finish, Brayden's first question to him was how that little boy from Searcy was doing. We are so blessed with a boy who has such a caring heart and love for others.
Praying for the ecko to produce good results tomorrow and no fluid on heart and no damage from the Death Star (Thymus tumor - our Star Wars word for it, in case I didn't clear that up before). They will also look at the liver and kidneys at the same time and we're praying they're still not enlarged and are healthy. Praying for the chest x-ray early this morning to show good results. Praying for the DNA test. I don't think I've said before but there is another big test they sent off that we won't know the results of for 3 weeks. It was sent to a specialist in Nebraska and we're praying it's negative. More on that later. Praying for WBC count to continue to lower and a safe blood transfusion later in the week. The heavy duty chemo is on Wednesday again. His daily regimen we are giving thanks that he can now take it in a pill form. The liquid was like acid going down his throat, so this was so much less traumatic this morning and will be going forward since he has to take it twice a day.
Thanks again to everyone!!! We appreciate all the support!
I forgot to mention yesterday was his first day eating 3 meals!! Today he had another good breakfast. The Dr. came in this morning and told us (after a concern about his fluid intake/out-put) that his white blood cell count was lowering still (in the right direction). Everything still looks good. He's now lost 8 lbs since Monday night, but they're glad he's eating. We were reminded he will need his first blood transfusion this upcoming week sometime. She said his lungs sound a whole lot better. Since he's taking in so much fluid orally (my little water drinker)they're going to lower his iv fluid. He's pumped about that since the hourly 'commercial break' he'd call it would send all the visitors to the hallway. The best news? He can get up and around a LITTLE with a mask.
So, we were eager to sit in the chair. He said it felt so good! Later, after breakfast, we got ready for a trip to the garden just a few steps past his room. He was VERY independent in doing everything himself and pushing me to 'go faster!' and 'speed it up!' We were thrilled to share those amazing moments with Zach & Steph, Danny & Kathleen, my sweet friend Carrie, and Nini later. He loved the garden and the warm sun and was eager to 'walk across that bridge.' We peeked inside the other windows at the playroom where he can go as he continues to improve. He then pulled his on IV stand and took a little seat on the bench and just felt the warm breeze and the sunshine and the beautiful gift of a day we were given. After a few minutes and running through some energy, we came back inside and waited for a show from Steph & Zach. Brayden and I used our little joke of "there's an app for that" when they came in with their I-phones and had Star Wars music, light sabers and action noise coming from them while they fought! Brayden couldn't miss out on that action and was quickly dueling with Aunt Steph while a nervous mom watched the iv's and couldn't belive how far we've come in a few short days.
We were glad to have visits from Danny & Kathleen (thanks for the breakfast socialization time)and Brayden loved seeing us on the web cam! Thanks Steph & Zach for being here and bringing more sweet nectar (Starbucks) for mom & dad to keep up with the day. Thanks Nini for all your support. We had a nice game of Bingo today! I was so stunned to see my sweet friend Carrie here. Your hugs made my day and nearly pushed me past the brink of holding on. I'm so glad you got to see Brayden on his best day! Bray loved you teasing him about how good he looked. I loved seeing my friend, Machelle. I can't believe all the stuff you came with from everyone. Thank you, Bill for all the Mega Blocks goodies! Thank you, Kathy for the awesome magazines, gift card. Thank you Anita for the AMAZING comfy throw. I can't wait to use it. And the dirty clothes bag is something I am clueless on how you knew we needed. The Flat Stanley book and card and your family made me cry. Brayden loves it and it was so incredibly sweet and thoughtful!! Jean & Dave - thank you for your prayers and the card and hats. Bray loved them and we'll make time to watch Rain. Moira, Denise & Machelle - you guys hooked us up between Brayden's goodie bag and ours, we literally want for nothing. You guys thought of it all.
We'll close for now. Our families and friends have left and we're settling in for a nap (I hope!) and maybe we'll venture out for another quick walk later.
Quote of the day: last night, another Angel One flight coming in. His Dr. told him he couldn't do the chest tube because there was another sick boy coming in from Searcy. When he left and we heard the helicopter a few short minutes later outside our window, Brayden said, "Mom, I hopehe gets better like me and they can help him." Even in the middle of the night when they came back to finish, Brayden's first question to him was how that little boy from Searcy was doing. We are so blessed with a boy who has such a caring heart and love for others.
Praying for the ecko to produce good results tomorrow and no fluid on heart and no damage from the Death Star (Thymus tumor - our Star Wars word for it, in case I didn't clear that up before). They will also look at the liver and kidneys at the same time and we're praying they're still not enlarged and are healthy. Praying for the chest x-ray early this morning to show good results. Praying for the DNA test. I don't think I've said before but there is another big test they sent off that we won't know the results of for 3 weeks. It was sent to a specialist in Nebraska and we're praying it's negative. More on that later. Praying for WBC count to continue to lower and a safe blood transfusion later in the week. The heavy duty chemo is on Wednesday again. His daily regimen we are giving thanks that he can now take it in a pill form. The liquid was like acid going down his throat, so this was so much less traumatic this morning and will be going forward since he has to take it twice a day.
Thanks again to everyone!!! We appreciate all the support!
Saturday, April 25, 2009
More Thanks & Appreciation
Thank you mom for being here when you'd probably love nothing more than to be in your own bed. Staying with Brayden and giving me and Bryan the chance to have at least 1 meal together is so special. Knowing my sweet boy is safe and I can focus on being a wife is good for us. I so appreciate you rearranging your needs and just being here for whatever we need.
Steph & Zach - so glad you guys were able to come visit Brayden and make him laugh. Thanks for the yummy Starbucks - 'sweet nectar'! Steph, I love just being with you. Thx for sitting with me and listening and just being here makes me so happy. And, sushi & edemame - yum! The best meal I've had all week! You are such a great sister and support to us.
Thank you, Linda, for knowing me so well and helping me help the blog look prettier. Brayden calls it his 'bloggie'. I love that!!! Thank you for taking time out of your day to do that for us.
Danny & Kathleen - we're so glad you guys could come today. Thanks, Danny, for giving my man a change of scenery and a chance to breathe some fresh air. Thank you for deliverying all the baskets and goodies and blessings from everyone. It was like Christmas with you walking in with your hands full!!
Thank you to the team at Dorel. You guys amaze me. I only know a few of you and your generousity was just amazing. Brayden loved the DVD and the cards and blessings are so appreciated. I need a thesarus because I'm running out of words. Bryan and I really have few words because we are literally speechless and overwhelmed by all the love and support from everyone.
To my Jack Link's family - you guys really are family to me and still hold such a special place in my heart. Heather, you know me TOO WELL! The red bag will now be my 'Little Rock ACH' bag. It's so cute and so perfect to carry EVERYTHING we need! We are so blessed by what you've done and again, thank you seems so mediocre. I miss you guys and told Brayden today we HAD to hurry and get better so Mike can measure you on his office door again and see how tall you've gotten! Brayden loved the games and was so excited over the stuff. He said, 'Cool! I didn't have Darth's light saber!' He's had the Star Wars figurines out to play with already.
Jeff & Carolyn Brown - thank you guys for all the perfect play stuff for Brayden. He LOVED the popsicle stick card and it made us all laugh! I'm so amazed the figure you got him was the Star Wars guy he's been wanting. Thank you so much for thinking of him and blessing him with those gifts.
To our Walmart Family - Walmart is where it all happened! Where I met my soul mate 13 years ago! It's where Bryan and I grew up and met a TON of awesome people that we are still close with today. Thank you to the Import, Domestic, Return Center, and Logistics Teams for the incredible baskets and cards and financial blessings. The coins for the vending machines was so needed and the items were literally exactly what we all need! Brayden was excited with the fun stuff for him and went straight for it!
Bryan and I are so appreciative and grateful to each one of you. We pray you receive the blessing back two-fold and that in turn, your lives are blessed. We hope our words are enough to express the thanks and appreciation we have for you.
Steph & Zach - so glad you guys were able to come visit Brayden and make him laugh. Thanks for the yummy Starbucks - 'sweet nectar'! Steph, I love just being with you. Thx for sitting with me and listening and just being here makes me so happy. And, sushi & edemame - yum! The best meal I've had all week! You are such a great sister and support to us.
Thank you, Linda, for knowing me so well and helping me help the blog look prettier. Brayden calls it his 'bloggie'. I love that!!! Thank you for taking time out of your day to do that for us.
Danny & Kathleen - we're so glad you guys could come today. Thanks, Danny, for giving my man a change of scenery and a chance to breathe some fresh air. Thank you for deliverying all the baskets and goodies and blessings from everyone. It was like Christmas with you walking in with your hands full!!
Thank you to the team at Dorel. You guys amaze me. I only know a few of you and your generousity was just amazing. Brayden loved the DVD and the cards and blessings are so appreciated. I need a thesarus because I'm running out of words. Bryan and I really have few words because we are literally speechless and overwhelmed by all the love and support from everyone.
To my Jack Link's family - you guys really are family to me and still hold such a special place in my heart. Heather, you know me TOO WELL! The red bag will now be my 'Little Rock ACH' bag. It's so cute and so perfect to carry EVERYTHING we need! We are so blessed by what you've done and again, thank you seems so mediocre. I miss you guys and told Brayden today we HAD to hurry and get better so Mike can measure you on his office door again and see how tall you've gotten! Brayden loved the games and was so excited over the stuff. He said, 'Cool! I didn't have Darth's light saber!' He's had the Star Wars figurines out to play with already.
Jeff & Carolyn Brown - thank you guys for all the perfect play stuff for Brayden. He LOVED the popsicle stick card and it made us all laugh! I'm so amazed the figure you got him was the Star Wars guy he's been wanting. Thank you so much for thinking of him and blessing him with those gifts.
To our Walmart Family - Walmart is where it all happened! Where I met my soul mate 13 years ago! It's where Bryan and I grew up and met a TON of awesome people that we are still close with today. Thank you to the Import, Domestic, Return Center, and Logistics Teams for the incredible baskets and cards and financial blessings. The coins for the vending machines was so needed and the items were literally exactly what we all need! Brayden was excited with the fun stuff for him and went straight for it!
Bryan and I are so appreciative and grateful to each one of you. We pray you receive the blessing back two-fold and that in turn, your lives are blessed. We hope our words are enough to express the thanks and appreciation we have for you.
Gotta Keep...
I thought I would share this with you. I wrote this a few days ago when the view was very different from what it is today. It was a very difficult time that is still hard to read. It puts me right back into that fragile state of mind I was in that seems like it was weeks ago when it was really just Tuesday. I remember sitting by Brayden's side in the middle of the night just hours after his diagnosis and having so many thoughts swirling I couldn't think straight and was so overwhelmed. I remember thinking though I had to focus on the necessities and let the rest go. So writing this down helped me focus and gain perspective and think about Brayden and what he needed...
Gotta keep clean so Bray can smell my perfume. He loves when I hug him and he says, "mmm, you smell good, mommy."
Gotta keep nails long. No biting or picking them as I notoriously do when I'm nervous or stressed which in this situation I'll need to start up with disposable nails. Brayden loves my nails to gently scratch his back and shoulders and I can see it relax him so find time to keep at least strengthener on them.
Gotta keep loving on him and not worry about my germs more than how much he needs my affection.
Gotta keep healthy so I don't pass him anything but keep the kisses and hugs and rubs and hand-holding.
Gotta keep remembering I'm a wife too right now and be there for Bryan in the little ways as much as I can.
Gotta keep putting on lotion since I'm scrubbing my hands every minute. Keep them soft to rub his sore tummy when he needs me to help him fall asleep.
Gotta keep writing. I'm losing track of days, visitors, phone calls, emails, and don't want to forget.
Gotta keep writing to remember the things Brayden says that brighten my dark concerns and the things othes say that they find my sweet boy so remarkable.
Gotta keep walking and not freak out next time I see a boy walking that catches my eye and think it's Brayden only to remember it couldn't be my son up walking
around.
Gotta keep asking questions and find out more.
Gotta keep focusing on today and not worry about tomorrow and how we'll get thru all of this. One step at a time.
Gotta keep refusing to make lists and be my obsessive self and be okay not to fulfill every outside obligation or courtesy.
Gotta keep breathing. After reading about another PICU mom going through a terrible situation with her son, I couldn't imagine. I now know you gotta keep moving and even if it's as a zombie, move and force myself to eat and stay healthy.
Gotta keep of eye make-up and on with glasses. Tears are wreaking havoc on my contacts and eyes and makeme look like even more of a mess.
Gotta keep praying for my baby's health. Gotta keep hoping he'll improve. Gotta keep beleving his stats will come up. Gotta keep faith in his healing. Gotta keep on...
Gotta keep clean so Bray can smell my perfume. He loves when I hug him and he says, "mmm, you smell good, mommy."
Gotta keep nails long. No biting or picking them as I notoriously do when I'm nervous or stressed which in this situation I'll need to start up with disposable nails. Brayden loves my nails to gently scratch his back and shoulders and I can see it relax him so find time to keep at least strengthener on them.
Gotta keep loving on him and not worry about my germs more than how much he needs my affection.
Gotta keep healthy so I don't pass him anything but keep the kisses and hugs and rubs and hand-holding.
Gotta keep remembering I'm a wife too right now and be there for Bryan in the little ways as much as I can.
Gotta keep putting on lotion since I'm scrubbing my hands every minute. Keep them soft to rub his sore tummy when he needs me to help him fall asleep.
Gotta keep writing. I'm losing track of days, visitors, phone calls, emails, and don't want to forget.
Gotta keep writing to remember the things Brayden says that brighten my dark concerns and the things othes say that they find my sweet boy so remarkable.
Gotta keep walking and not freak out next time I see a boy walking that catches my eye and think it's Brayden only to remember it couldn't be my son up walking
around.
Gotta keep asking questions and find out more.
Gotta keep focusing on today and not worry about tomorrow and how we'll get thru all of this. One step at a time.
Gotta keep refusing to make lists and be my obsessive self and be okay not to fulfill every outside obligation or courtesy.
Gotta keep breathing. After reading about another PICU mom going through a terrible situation with her son, I couldn't imagine. I now know you gotta keep moving and even if it's as a zombie, move and force myself to eat and stay healthy.
Gotta keep of eye make-up and on with glasses. Tears are wreaking havoc on my contacts and eyes and makeme look like even more of a mess.
Gotta keep praying for my baby's health. Gotta keep hoping he'll improve. Gotta keep beleving his stats will come up. Gotta keep faith in his healing. Gotta keep on...
Here is a peek at life at ACH...
Brayden really loves his DS, can you tell?
This is us hanging out in our room.
This is one of Brayden's totally awesome nurses.
Did I mention Brayden really loves his DS?
What a difference a day makes...
Wow - I feel like it's all I can say. We heard again more amazing news today from his Dr.'s. Three Dr.'s came in that are on this weekend while his main Dr. is off and-they are all 3 cute girls. I've got the pictures with him to prove it. To say he is enjoying the attention is an under-statement. He's heard more times than I can count how beautiful his eyes and eye lashes are. Some more "How you doin'" were exchanged when meeting them and there were laughs all around.
So, for the medical details: Brayden had the last ingredient to his first chemo regimen given today. He did great - 2 shots in the upper leg. I'm thankful they use numbing cream. Through the night, he slept great with NO oxygen! He was so free of cords when we moved out of ICU yesterday to his room! No heart monitors, 1 less IV, the arm brace is off, the nose canula, the blood pressure cuff. WOW. He goes, "Look, mom! I'm free!" He got a good 9 hrs of sleep and the nurses are so quiet and use little pen lights to not wake him up. His blood work came back GREAT! White blood cell count dropped again. His liver and kidneys are still doing great and aren't as swollen/enlarged as before. No fever, no high sugar, no low blood levels that would lead to transfusions yet. We know later he will need bone marrow, blood and plasma. But that's later...Another wow - one of the drugs that helps prevent damage that the busted tumor will do (remember the Death Star) isn't needed. WHAT?!?! This is a drug that helps his vital organs and helps the cells and minimizes other difficulties internally with the tumor bits (my medical terminology) has a lot of side effects with it and after checking his blood, he doesn't need it and there's basically no trace of any problems. Can you say answer to prayer? So again, everything looks good! We found out he lost 6lbs since Monday night. But I can't believe there are talks of MAYBE getting to go home late next week if things keep going well.
Please pray for: Another ecko on Monday to check his heart to re-confirm there is indeed no fluid or damage from the Death Star. Good cells will start kicking in and producing to overtake the bad. There's a big test with his DNA we won't get back for 3 1/2 weeks and we're praying it's good news. We'll still proceed with the plan and hopefully nothing will deter us. The goal is in 1 month, if this phase of chemo is successful, called Induction, then it's the absolute best scenario possible. They would label him in remission and move to the next of the 4 phases of treatment. We found out he's never 'cured' but will always be in remission. The treaments would continue for up to 2 years, then the treatments hopefully end(without any interruption with infections or fevers) and his hair will start to grow back. Continue to pray for Brayden's emotional strength.
The social worker came in yesterday to show him the video and help him understand the diagnosis, where he's at and what happens next. I took it really hard. We found out it might be a year before he can go back to school. We found out his hair will start falling out in the next 7 days or so and won't grow back for 2 years. He found these things out as well and finally heard the word 'cancer' and not just Leukemia. I think it was different when he hadn't heard of Leukemia before and didn't have a pre-set ideea of what it meant. But when she said cancer, he said, "That's what I have?" It just broke my heart for him. But I know he's in the best place. Some people have asked about St. Jude's and I was glad to hear that here or there, it's the same set of treatment and plan based on his diagnosis. I just am thankful for his progress and the support we get here. There are social workers for us and for him. There are so many things we don't even know about yet. We're thankful for the staff and his Dr.'s and thankful to God for the miracles happening so soon.
So, we had a lovely family evening remembering our inside jokes and feeling with the less restrictions of being out of ICU a little closer and more connected. We were thankful to get to all sleep together in the same room and get 6+ hrs of sleep. Great dinner last night, wonderful view of the Capital building that looks amazing at night. We're thankful for a room with a window! Much less an awesome view! My heart almost stopped lastnight when we heard the helicopter sounds of Angel 1. With tears in my eyes, we looked out the window and said, "Brayden! That was where you were just 3 short nights ago!" And we said a prayer for another kiddo coming in and for the family that would be enduring the unthinkable of sick child.
Jesus, thank you for your blessings. Please use this situation for your good. Help us to be vessels to show others of your love. Please hold baby Adam and Brittany in your arms. We pray for their families that we've seen suffering in despair. We thank you for your guidance with the Dr.'s and wisdom showing them the path to take. We praise you for the miracles we've seen and for all the good reports. We pray you would continue to help Brayden to be strong, in body, mind and spirit. Help Bryan, help me, to be the parents we need to be during this journey, in continuing to discipline and set boundaries, while loving and nurturing him. Bless all those around us who give of their time, their love, and their concern for our sweet boy. Thank you forloving us and drawing us closer to your side. Amen.
So, for the medical details: Brayden had the last ingredient to his first chemo regimen given today. He did great - 2 shots in the upper leg. I'm thankful they use numbing cream. Through the night, he slept great with NO oxygen! He was so free of cords when we moved out of ICU yesterday to his room! No heart monitors, 1 less IV, the arm brace is off, the nose canula, the blood pressure cuff. WOW. He goes, "Look, mom! I'm free!" He got a good 9 hrs of sleep and the nurses are so quiet and use little pen lights to not wake him up. His blood work came back GREAT! White blood cell count dropped again. His liver and kidneys are still doing great and aren't as swollen/enlarged as before. No fever, no high sugar, no low blood levels that would lead to transfusions yet. We know later he will need bone marrow, blood and plasma. But that's later...Another wow - one of the drugs that helps prevent damage that the busted tumor will do (remember the Death Star) isn't needed. WHAT?!?! This is a drug that helps his vital organs and helps the cells and minimizes other difficulties internally with the tumor bits (my medical terminology) has a lot of side effects with it and after checking his blood, he doesn't need it and there's basically no trace of any problems. Can you say answer to prayer? So again, everything looks good! We found out he lost 6lbs since Monday night. But I can't believe there are talks of MAYBE getting to go home late next week if things keep going well.
Please pray for: Another ecko on Monday to check his heart to re-confirm there is indeed no fluid or damage from the Death Star. Good cells will start kicking in and producing to overtake the bad. There's a big test with his DNA we won't get back for 3 1/2 weeks and we're praying it's good news. We'll still proceed with the plan and hopefully nothing will deter us. The goal is in 1 month, if this phase of chemo is successful, called Induction, then it's the absolute best scenario possible. They would label him in remission and move to the next of the 4 phases of treatment. We found out he's never 'cured' but will always be in remission. The treaments would continue for up to 2 years, then the treatments hopefully end(without any interruption with infections or fevers) and his hair will start to grow back. Continue to pray for Brayden's emotional strength.
The social worker came in yesterday to show him the video and help him understand the diagnosis, where he's at and what happens next. I took it really hard. We found out it might be a year before he can go back to school. We found out his hair will start falling out in the next 7 days or so and won't grow back for 2 years. He found these things out as well and finally heard the word 'cancer' and not just Leukemia. I think it was different when he hadn't heard of Leukemia before and didn't have a pre-set ideea of what it meant. But when she said cancer, he said, "That's what I have?" It just broke my heart for him. But I know he's in the best place. Some people have asked about St. Jude's and I was glad to hear that here or there, it's the same set of treatment and plan based on his diagnosis. I just am thankful for his progress and the support we get here. There are social workers for us and for him. There are so many things we don't even know about yet. We're thankful for the staff and his Dr.'s and thankful to God for the miracles happening so soon.
So, we had a lovely family evening remembering our inside jokes and feeling with the less restrictions of being out of ICU a little closer and more connected. We were thankful to get to all sleep together in the same room and get 6+ hrs of sleep. Great dinner last night, wonderful view of the Capital building that looks amazing at night. We're thankful for a room with a window! Much less an awesome view! My heart almost stopped lastnight when we heard the helicopter sounds of Angel 1. With tears in my eyes, we looked out the window and said, "Brayden! That was where you were just 3 short nights ago!" And we said a prayer for another kiddo coming in and for the family that would be enduring the unthinkable of sick child.
Jesus, thank you for your blessings. Please use this situation for your good. Help us to be vessels to show others of your love. Please hold baby Adam and Brittany in your arms. We pray for their families that we've seen suffering in despair. We thank you for your guidance with the Dr.'s and wisdom showing them the path to take. We praise you for the miracles we've seen and for all the good reports. We pray you would continue to help Brayden to be strong, in body, mind and spirit. Help Bryan, help me, to be the parents we need to be during this journey, in continuing to discipline and set boundaries, while loving and nurturing him. Bless all those around us who give of their time, their love, and their concern for our sweet boy. Thank you forloving us and drawing us closer to your side. Amen.
Friday, April 24, 2009
Thank You's
I'm losing track, but wanted to say thank you from Brayden and especially Bryan and me for all the wonderful cards, gifts, and visitors. I can't keep up with email, but keep sending them. We love reading them and it makes us feel so loved and supported. Brayden loves hearing how many people are sending them to him. I've taken lots of pictures over the last 2-3 days but can't post them here. But I can't wait to send them to you and show you how much everything has meant to him.
Thank you to my sisters and family for being there. Steph, I couldn't have made it out of that room without you being there when we got the horrendous news we were flying to Little Rock to come to ACH. You are a pillar for me and have taken on the role as personal assistant without me knowing I needed one. Thank you for keeping Brayden in good spirits when I was trying to process all that we were being slammed with in preparation for the emergency flight out. Thanks for being my external hard drive when I couldn't keep any more information and all the bad news in my brain. Thank you for putting your life on hold and rushing to be at my side and doing things before I even thought of asking. Thank you for being there when I needed you the most. Heather, thank you for being the shoulder for me. I was trying to be strong, but it was too much. I'm so glad you were able to be here and I know Brayden was, even though he didn't want you to see or know how bad he was hurting. Mom & Papa - thank you for being in the ER even when I thought I didn't want you to. I was scared for you to know what was happening. Thank you for being strong. Thank you for packing up stuff only my mom would know what I would need later. Papa David, thank you so much for riding with Bryan. I can't imagine how long that time was on his own and having to leave the ER and find the strength to drive home and grab essentials and make that excruciating drive to ACH after being dealt that blow from the Dr.'s. I was so worried for him and having you with him helped me to stay focused on Brayden.
Danny & Kathleen - what can I say? You guys aren't friends anymore; you are family and can't get away from us! You have been there for us and continue to be and watching you hurt for Brayden has been so tough. I love how much you guys love him; you are his Aunt & Uncle now! Thank you for being there for Bryan so that he has a place to vent and run to. Thank you for being here and bringing the wonderful game and Star Wars coloring books and coloring pencils! I can't wait until he's able to use them and has free time to play.
Hanna - you are family and have been for, what, almost 20 years now? We love you and you know Brayden loves you. Thank you for making the trek over here when you're busy with college and cheering him up. The camera was so special. Love the journal for him to write about things. The crayons, puzzle and stuff was perfect.
Papa G, Nini Sue, Aunt Kimmie and Kynnli & Tate - thank you for the cool presents! The basket has come in handy for storing stuff around and we can't wait to play some games! We love you guys so much and are so thankful to Tate for coming over with Papa G too. I know that visit with him was so special and important for him and for Brayden. Seeing Kynnli was therapy to me and your words and love mean the world to all 3 of us.
To my Circle of Friends -I can really feel your love and prayers encircling me through all of this. You guys are what I always hoped to have in life and I pray I can be there for each one of you as you have for me. Thank you to Mr. Clinton for making the crazy journey through the ACH maze with the box bigger than a microwave full of love from my circle girls! The stuff for all 3 of us was so perfect and so appreciated. Brayden loves the National Geographic and it thrilled me to see Bryan actually take a moment and flip through his magazine. I'm so thankful for the comfy socks, the lotion. Thank you Heather, Clinton, Cheryl, Jean, Tammy, Doris, Kathie, Linda, Anita and Amelia. The gifts that came from a visit with Linda and Tammy were over the top. Anita, Brayden LOVED Phineas and Ferb game. It's his favorite cartoon! Second only to Star Wars, of course. The DVD player and videos - wow. Brayden LOVES hot chocolate and the DVD's are awesome and will come in very handy on our long drives back and forth to Little Rock. The cards were so great! He loved the hand-written note from Andrew and the card with the turtle he thought was so cute. Thank you girls for the resources and journal and for being you. I wasn't sure how I would do with being away from him and trying to talk about 'other' stuff while all this is going on but I felt so much more like myself than I have in almost a week after you guys left. Thank you for that glimpse of normalcy. And after Brayden was resting I found what you'd sneaked into my purse and was overwhelmed. Bryan and I are so thankful and the cards were beautiful. Cheryl& Amelia-you have to rub it in that you got me to finally get away after an extremely stressful 4 1/2 days. I am so thankful for the distraction and having the love of friends around. Brayden loved the visits too!!
To ACA - where to start. What a blessing to be part of this family since Kindergarten. We wanted Brayden to have the blessing of a Christian education and in times like these, I'm so thankful for the teachers and staff and their Christ-like influence on him. Thank you for the thoughtful gift of quarters! Who knew! Bryan is so happy today! The journal will be put to great use as I wandered around the first couple of days trying to find a way to write it down. To all the ACA kiddos & parents, teachers, and staff- you overwhelm me. Brayden began opening his box of goodies yesterday and literally poured over each and every letter and card from each grade, each child, one by one. He was so full of smiles and "WOW! Cool! Dude!" All the fun coloring and activity books were perfect. We can't wait to use the papers and play the Ants game from Lauren L. Sarah - he LOVES the puppy and was sure blushing when he saw it was from you on your card. We can't wait to move and get to put up his banner in his new room! Mrs. McCall, Mrs. Shell, Mrs. McCrary and Mrs. Campbell - thank you for your emails and your words to Brayden. You guys know him so well and he can't wait to catch up on giving out hugs. Thank you Susan, Wendy, Gina and others for the emails and talking to Bryan when I didn't have the words. I'm devastated at how hard this will be to explain to all the kiddos what Brayden will experience. We try to shield our babies from scary stuff and I just don't want them to hurt. I hope we can get back into rhythm with school very soon. Mrs. Campbell - you know him too well!! I LOVE the map and the visual representation of all the people that are praying for him! He loves the books, bookmark, and FREAKED over the Football book - I'm sure that doesn't surprise you in the least. Mrs. McCall - the banner is hanging in Brayden's room where he can see it!!
Patti, John, & Aaron - thank you for taking care of our other baby and loving her while we're away. The framed pic of Hershey for Brayden was so precious and he proudly shows it off to everyone in the staff that comes to see him! Patti, thank you for making the drive here to deliver the special gifts for Brayden.
Mike Bitzer, Tracy, Collin and Carson for the DS! He's never had one; always wanted one, and it's already working to pass the time. Something I really couldn't see being a possibility just 3 days ago. He loves the Star Wars stylus (sp?) too! It brought such a great smile from him and so much energy.
Thank you for visits today from Nini Annette, Pastor Brewer for visiting and praying with us all the way from Pea Ridge First Assembly. More fun gifts from momma's girl Melanie from Malt-O-Meal. He's digging that stuff! He put that hat on right away and was grinning with delight over all the cool stuff! Now that we're in our new room, of course we went to work decorating.
Thank you to Michael Lawrence for mowing our lawn. Only another guy would think of this when a mom wouldn't. It made Bryan's day and choked him up. It means so much to us!!
Thank you Denise for the yummy (non-South Beach approved) friendship bread. I can't wait til we're officially family so I can get in on that recipe. That is the BEST comfort food and Bryan and I finally realized yesterday how yummy it was and are starting to eat again! Zach - thanks for bringing my baby sis to see us and for finding ways to keep Brayden laughing. No more suggestions on rules for his room, okay?
To my Malt-O-Meal family: your support is so meaningful to me. I'm a mom first, but my work is important to me and your reassurance has meant so much. The emails are so amazing and the gift of the Nintendo DS, games, and adapters were so great! I know that car adapter will come in very handy on the drives over the next 2 years and it has brought a lot of smiles.
To the McLane Team-what a cute bear, balloons and cookies! I was so happy Brayden wanted a cookie (I know; write it down I was pleased he wanted sugar) and he hugged the bear right away. You guys so didn't have to do that and it was another sign of how many people care for us. Thank you so much for thinking of us and helping to brighten his day and cheer up his room even more.
Paula & the Vi-Jon team - thanks so much for the Germ-X special delivery!! If I was a germaphobe mom before, I'm worried to see what it will look like when we get home! Brayden likes the flavored Germ-X and said, "We are stocked up on Germ-X!"
I so hope I haven't forgotten anyone. Thanks to everyone again for your love, your prayers, your support for Brayden. It means so much!!!!!!!
Thank you to my sisters and family for being there. Steph, I couldn't have made it out of that room without you being there when we got the horrendous news we were flying to Little Rock to come to ACH. You are a pillar for me and have taken on the role as personal assistant without me knowing I needed one. Thank you for keeping Brayden in good spirits when I was trying to process all that we were being slammed with in preparation for the emergency flight out. Thanks for being my external hard drive when I couldn't keep any more information and all the bad news in my brain. Thank you for putting your life on hold and rushing to be at my side and doing things before I even thought of asking. Thank you for being there when I needed you the most. Heather, thank you for being the shoulder for me. I was trying to be strong, but it was too much. I'm so glad you were able to be here and I know Brayden was, even though he didn't want you to see or know how bad he was hurting. Mom & Papa - thank you for being in the ER even when I thought I didn't want you to. I was scared for you to know what was happening. Thank you for being strong. Thank you for packing up stuff only my mom would know what I would need later. Papa David, thank you so much for riding with Bryan. I can't imagine how long that time was on his own and having to leave the ER and find the strength to drive home and grab essentials and make that excruciating drive to ACH after being dealt that blow from the Dr.'s. I was so worried for him and having you with him helped me to stay focused on Brayden.
Danny & Kathleen - what can I say? You guys aren't friends anymore; you are family and can't get away from us! You have been there for us and continue to be and watching you hurt for Brayden has been so tough. I love how much you guys love him; you are his Aunt & Uncle now! Thank you for being there for Bryan so that he has a place to vent and run to. Thank you for being here and bringing the wonderful game and Star Wars coloring books and coloring pencils! I can't wait until he's able to use them and has free time to play.
Hanna - you are family and have been for, what, almost 20 years now? We love you and you know Brayden loves you. Thank you for making the trek over here when you're busy with college and cheering him up. The camera was so special. Love the journal for him to write about things. The crayons, puzzle and stuff was perfect.
Papa G, Nini Sue, Aunt Kimmie and Kynnli & Tate - thank you for the cool presents! The basket has come in handy for storing stuff around and we can't wait to play some games! We love you guys so much and are so thankful to Tate for coming over with Papa G too. I know that visit with him was so special and important for him and for Brayden. Seeing Kynnli was therapy to me and your words and love mean the world to all 3 of us.
To my Circle of Friends -I can really feel your love and prayers encircling me through all of this. You guys are what I always hoped to have in life and I pray I can be there for each one of you as you have for me. Thank you to Mr. Clinton for making the crazy journey through the ACH maze with the box bigger than a microwave full of love from my circle girls! The stuff for all 3 of us was so perfect and so appreciated. Brayden loves the National Geographic and it thrilled me to see Bryan actually take a moment and flip through his magazine. I'm so thankful for the comfy socks, the lotion. Thank you Heather, Clinton, Cheryl, Jean, Tammy, Doris, Kathie, Linda, Anita and Amelia. The gifts that came from a visit with Linda and Tammy were over the top. Anita, Brayden LOVED Phineas and Ferb game. It's his favorite cartoon! Second only to Star Wars, of course. The DVD player and videos - wow. Brayden LOVES hot chocolate and the DVD's are awesome and will come in very handy on our long drives back and forth to Little Rock. The cards were so great! He loved the hand-written note from Andrew and the card with the turtle he thought was so cute. Thank you girls for the resources and journal and for being you. I wasn't sure how I would do with being away from him and trying to talk about 'other' stuff while all this is going on but I felt so much more like myself than I have in almost a week after you guys left. Thank you for that glimpse of normalcy. And after Brayden was resting I found what you'd sneaked into my purse and was overwhelmed. Bryan and I are so thankful and the cards were beautiful. Cheryl& Amelia-you have to rub it in that you got me to finally get away after an extremely stressful 4 1/2 days. I am so thankful for the distraction and having the love of friends around. Brayden loved the visits too!!
To ACA - where to start. What a blessing to be part of this family since Kindergarten. We wanted Brayden to have the blessing of a Christian education and in times like these, I'm so thankful for the teachers and staff and their Christ-like influence on him. Thank you for the thoughtful gift of quarters! Who knew! Bryan is so happy today! The journal will be put to great use as I wandered around the first couple of days trying to find a way to write it down. To all the ACA kiddos & parents, teachers, and staff- you overwhelm me. Brayden began opening his box of goodies yesterday and literally poured over each and every letter and card from each grade, each child, one by one. He was so full of smiles and "WOW! Cool! Dude!" All the fun coloring and activity books were perfect. We can't wait to use the papers and play the Ants game from Lauren L. Sarah - he LOVES the puppy and was sure blushing when he saw it was from you on your card. We can't wait to move and get to put up his banner in his new room! Mrs. McCall, Mrs. Shell, Mrs. McCrary and Mrs. Campbell - thank you for your emails and your words to Brayden. You guys know him so well and he can't wait to catch up on giving out hugs. Thank you Susan, Wendy, Gina and others for the emails and talking to Bryan when I didn't have the words. I'm devastated at how hard this will be to explain to all the kiddos what Brayden will experience. We try to shield our babies from scary stuff and I just don't want them to hurt. I hope we can get back into rhythm with school very soon. Mrs. Campbell - you know him too well!! I LOVE the map and the visual representation of all the people that are praying for him! He loves the books, bookmark, and FREAKED over the Football book - I'm sure that doesn't surprise you in the least. Mrs. McCall - the banner is hanging in Brayden's room where he can see it!!
Patti, John, & Aaron - thank you for taking care of our other baby and loving her while we're away. The framed pic of Hershey for Brayden was so precious and he proudly shows it off to everyone in the staff that comes to see him! Patti, thank you for making the drive here to deliver the special gifts for Brayden.
Mike Bitzer, Tracy, Collin and Carson for the DS! He's never had one; always wanted one, and it's already working to pass the time. Something I really couldn't see being a possibility just 3 days ago. He loves the Star Wars stylus (sp?) too! It brought such a great smile from him and so much energy.
Thank you for visits today from Nini Annette, Pastor Brewer for visiting and praying with us all the way from Pea Ridge First Assembly. More fun gifts from momma's girl Melanie from Malt-O-Meal. He's digging that stuff! He put that hat on right away and was grinning with delight over all the cool stuff! Now that we're in our new room, of course we went to work decorating.
Thank you to Michael Lawrence for mowing our lawn. Only another guy would think of this when a mom wouldn't. It made Bryan's day and choked him up. It means so much to us!!
Thank you Denise for the yummy (non-South Beach approved) friendship bread. I can't wait til we're officially family so I can get in on that recipe. That is the BEST comfort food and Bryan and I finally realized yesterday how yummy it was and are starting to eat again! Zach - thanks for bringing my baby sis to see us and for finding ways to keep Brayden laughing. No more suggestions on rules for his room, okay?
To my Malt-O-Meal family: your support is so meaningful to me. I'm a mom first, but my work is important to me and your reassurance has meant so much. The emails are so amazing and the gift of the Nintendo DS, games, and adapters were so great! I know that car adapter will come in very handy on the drives over the next 2 years and it has brought a lot of smiles.
To the McLane Team-what a cute bear, balloons and cookies! I was so happy Brayden wanted a cookie (I know; write it down I was pleased he wanted sugar) and he hugged the bear right away. You guys so didn't have to do that and it was another sign of how many people care for us. Thank you so much for thinking of us and helping to brighten his day and cheer up his room even more.
Paula & the Vi-Jon team - thanks so much for the Germ-X special delivery!! If I was a germaphobe mom before, I'm worried to see what it will look like when we get home! Brayden likes the flavored Germ-X and said, "We are stocked up on Germ-X!"
I so hope I haven't forgotten anyone. Thanks to everyone again for your love, your prayers, your support for Brayden. It means so much!!!!!!!
More Good News! Update from Dr.'s Report
We just saw his wonderful Dr. and received an amazingly great report. We found out Brayden's white blood cell count has again been cut in half since yesterday. Liver and kidney function still great! Blood work looks good; nothing else to worry about for now! Chest tube will go ahead and stay in preventatively for one more day. Moving out of ICU today! The more good news we get, the more I realize we're breathing again...not holding our breath and cringing against bad news. More answers to prayer!
Quote of the day: From Brayden to the Dr."So do I get to ride in the helicopter back home?" We all laughed and they said, "Your mom and dad don't want you to ever have to ride in that helicopter again.
Thank you for visits today from Nini Annette, Pastor Brewer for visiting and praying with us all the way from Pea Ridge First Assembly. More fun gifts from momma's girl Melanie from Malt-O-Meal. He's digging that stuff! He put that hat on right away and was grinning with delight over all the cool stuff!
Thank you to Michael Lawrence for mowing our lawn. Only another guy would think of this when a mom wouldn't. It made Bryan's day and choked him up. It means so much to us!!
Quote of the day: From Brayden to the Dr."So do I get to ride in the helicopter back home?" We all laughed and they said, "Your mom and dad don't want you to ever have to ride in that helicopter again.
Thank you for visits today from Nini Annette, Pastor Brewer for visiting and praying with us all the way from Pea Ridge First Assembly. More fun gifts from momma's girl Melanie from Malt-O-Meal. He's digging that stuff! He put that hat on right away and was grinning with delight over all the cool stuff!
Thank you to Michael Lawrence for mowing our lawn. Only another guy would think of this when a mom wouldn't. It made Bryan's day and choked him up. It means so much to us!!
Thursday, April 23, 2009
From...To
From one lung not moving in his chest when he'd breathe in and out to 2 lungs full of air and no fluid.
From heart rates of 150-180 beats per minute to falling back below 100 finally this morning!
From pulse-ox (oxygen levels in his blood should be 100%, 92 and below you get a tube in down your throat to help you breathe) at 92-95 with 5 liters of oxygen continuously flowing to hitting 100 - without the oxygen this morning!!!! Mommy was beaming! Brayden was never so happy to get that itchy tube out of his nose! Even when he could only have it out for about 30 min, it was a small step. Compared to 2nights ago when it barely moved from one nostril, his oxygen level would plummet dangerously to the 80's.
From a dark room with only the light from monitors to shades open on the windows again today and seeing the sun!
From no water or food, to another great breakfast. Gotta love those eggs (which I'm still secretly hoping really aren't better than mine at home).
From a very guarded and scary PICU room to a kid-friendly open room.
From a 6"+ size tumor in his chest wall above his heart to a busting up tumor with chemo just like the Death Star!
From pale skin and dark eyes to seeing his cheeks again and those beautiful blue sparkly eyes flashing those long I lashes I wish I had gotten that he obviously got from his daddy!!
From an ugly chest tube sticking out of his side and draining scary liquid to a band-aid and no tube.
I was laying my head on his bed Monday night/morning when we first arriving glaring at the monitors praying for the numbers to improve. His heart was pounding so fast you could see his pulse pounding on his neck. I knew the pulse-ox of 93 WITH that much oxygen was so dangerous and remember the red numbers glaring out alarming me with 150 pulse rates and 93% levels. How did he get so sick so fast? But I love seeing those rates now showing us prayers are being answered and he is improving. We're still praying! The social worker is coming today to talk to him more about what's going on and show him a video and answer his questions. This will no doubt be very hard to see our little boy be given so much information and learning his hair might start falling out within a week and may not grow back for 2 yrs. I was tearing up while giving him a sponge bath last night while washing his cute hair. It's a small price to pay compared to the alternative. I just pray he stays strong and God gives him comfort with these things that he will hear as he begins to more realize the long road he has ahead of him.
From heart rates of 150-180 beats per minute to falling back below 100 finally this morning!
From pulse-ox (oxygen levels in his blood should be 100%, 92 and below you get a tube in down your throat to help you breathe) at 92-95 with 5 liters of oxygen continuously flowing to hitting 100 - without the oxygen this morning!!!! Mommy was beaming! Brayden was never so happy to get that itchy tube out of his nose! Even when he could only have it out for about 30 min, it was a small step. Compared to 2nights ago when it barely moved from one nostril, his oxygen level would plummet dangerously to the 80's.
From a dark room with only the light from monitors to shades open on the windows again today and seeing the sun!
From no water or food, to another great breakfast. Gotta love those eggs (which I'm still secretly hoping really aren't better than mine at home).
From a very guarded and scary PICU room to a kid-friendly open room.
From a 6"+ size tumor in his chest wall above his heart to a busting up tumor with chemo just like the Death Star!
From pale skin and dark eyes to seeing his cheeks again and those beautiful blue sparkly eyes flashing those long I lashes I wish I had gotten that he obviously got from his daddy!!
From an ugly chest tube sticking out of his side and draining scary liquid to a band-aid and no tube.
I was laying my head on his bed Monday night/morning when we first arriving glaring at the monitors praying for the numbers to improve. His heart was pounding so fast you could see his pulse pounding on his neck. I knew the pulse-ox of 93 WITH that much oxygen was so dangerous and remember the red numbers glaring out alarming me with 150 pulse rates and 93% levels. How did he get so sick so fast? But I love seeing those rates now showing us prayers are being answered and he is improving. We're still praying! The social worker is coming today to talk to him more about what's going on and show him a video and answer his questions. This will no doubt be very hard to see our little boy be given so much information and learning his hair might start falling out within a week and may not grow back for 2 yrs. I was tearing up while giving him a sponge bath last night while washing his cute hair. It's a small price to pay compared to the alternative. I just pray he stays strong and God gives him comfort with these things that he will hear as he begins to more realize the long road he has ahead of him.
Brayden's Good News
Today is a celebratory day! I don't know where to begin as the days have really run together and seems like it's been weeks that we're here. First, my sweet Circle of Friends have convinced me to do a blog and help keep all those who are lifting up Brayden in prayer informed of his status. I've been taking pictures today to help document his journey and this experience and can hopefully share those here soon. So I hope this blog is a testimony of the miracle we are already seeing in Brayden's journey through this disease. I hope it's a reminder of God's love and faithfulness. I hope it will show our sweet boy how many people care about him and are praying for him. I hope it encourages others and this situation can be used for good in someone else's life to remind them God is always there.
So where to begin? I'll start with thank you. Thank you, Lord for all of your comfort and peace to Brayden during these very tough 3 days. Thank you for literally carrying Bryan and I through this because we know it isn't for any other reason that we're able to walk and speak and love and praise through this than for Your Hands holding us and shouldering the burden for us. Thank you to our family for literally dropping it all and running to be by our side. Watching you suffer for us was so tough sometimes!! Thank you to all our friends for being there and encouraging us and reminding us what friendship means and for forcing us to accept help! Thank you to all those we work with now or have in the past for your support in many ways. We've been blessed to work with and for some great people. Thank you to ACA. What a feeling for a mom to be comforted in knowing THIS is why we love this school and are so happy Brayden has been there since Kindergarten. Teaching him about the love of Jesus and how to pray and to be those Christ-like examples for him in all the awesome staff there. So that in this difficult time, he is girded with truth and knows God has His hand on him. And wow, his teachers and fellow students and faculty are praying for him!! And thank you to each and every one of you that we don't even know and haven't yet met who are sending words of love and encouragement our way, prayers our way, and lifting up Brayden. Wow...we are literally overwhelmed.
It will take me days to get trough the thank you's, especially after today. I'm going to do a separate entry for how we got here. For now, I'll give a recap of today's good news.
The success rate of his treatment regimen is 75%. We won't have surgeries specifically for the tumor(s; the chemo will attack and break them up. In Brayden's translation, blast them like the Death Star. (To say he's a Star Wars fan is an understatement!) So chemo began Wednesday, April 22nd at 3:00. Today, by noon, we heard from his wonderful Dr. that the tumor in his chest wall had shrunk by 50% and decreased 15% in mass. His white blood cell count dropped in half. Just yesterday, both the size of the tumor and white blood cell count had doubled in size in on day. To have them cut back so quick is AWESOME!! His chest tube drainage has decreased drastically and the fluid drainage from it off his lungs is back to normal. SO! He might get to have the chest tube out tomorrow and get to upgrade from the PICU (Pediatric Intensive Care Unit) to the clinic area with the other kiddos fighting cancer. Hearing his Dr. say he couldn't have done any bettr and that he's gone from being the sickest kiddo here to the healthiest in the PICU was both exciting and alarming. Bryan and I really had no idea how bad it truly was. We are so thankful for these answers to prayer! We know there is still a long road ahead and are so knowing how miraculous these first few victories are.
They are still testing his blood every 6hrs and watching every vital and stat closely. His kidneys and liver are doing great which is critical since the chemo and breakdown of the tumor can sometimes attack them and cause secondary issues to treat.
Gotta get some rest. I will work to post more of the back-story of how we got here and more of sweet Brayden's awesome spirit and energy. Quote of the day: "YUM!" With eyes closed and great savoring over eating his first solid food since lunch on Monday - scrambled eggs, which are his favorite. Mom didn't bother to ask if the hospital's eggs are better than mine at home!
So where to begin? I'll start with thank you. Thank you, Lord for all of your comfort and peace to Brayden during these very tough 3 days. Thank you for literally carrying Bryan and I through this because we know it isn't for any other reason that we're able to walk and speak and love and praise through this than for Your Hands holding us and shouldering the burden for us. Thank you to our family for literally dropping it all and running to be by our side. Watching you suffer for us was so tough sometimes!! Thank you to all our friends for being there and encouraging us and reminding us what friendship means and for forcing us to accept help! Thank you to all those we work with now or have in the past for your support in many ways. We've been blessed to work with and for some great people. Thank you to ACA. What a feeling for a mom to be comforted in knowing THIS is why we love this school and are so happy Brayden has been there since Kindergarten. Teaching him about the love of Jesus and how to pray and to be those Christ-like examples for him in all the awesome staff there. So that in this difficult time, he is girded with truth and knows God has His hand on him. And wow, his teachers and fellow students and faculty are praying for him!! And thank you to each and every one of you that we don't even know and haven't yet met who are sending words of love and encouragement our way, prayers our way, and lifting up Brayden. Wow...we are literally overwhelmed.
It will take me days to get trough the thank you's, especially after today. I'm going to do a separate entry for how we got here. For now, I'll give a recap of today's good news.
The success rate of his treatment regimen is 75%. We won't have surgeries specifically for the tumor(s; the chemo will attack and break them up. In Brayden's translation, blast them like the Death Star. (To say he's a Star Wars fan is an understatement!) So chemo began Wednesday, April 22nd at 3:00. Today, by noon, we heard from his wonderful Dr. that the tumor in his chest wall had shrunk by 50% and decreased 15% in mass. His white blood cell count dropped in half. Just yesterday, both the size of the tumor and white blood cell count had doubled in size in on day. To have them cut back so quick is AWESOME!! His chest tube drainage has decreased drastically and the fluid drainage from it off his lungs is back to normal. SO! He might get to have the chest tube out tomorrow and get to upgrade from the PICU (Pediatric Intensive Care Unit) to the clinic area with the other kiddos fighting cancer. Hearing his Dr. say he couldn't have done any bettr and that he's gone from being the sickest kiddo here to the healthiest in the PICU was both exciting and alarming. Bryan and I really had no idea how bad it truly was. We are so thankful for these answers to prayer! We know there is still a long road ahead and are so knowing how miraculous these first few victories are.
They are still testing his blood every 6hrs and watching every vital and stat closely. His kidneys and liver are doing great which is critical since the chemo and breakdown of the tumor can sometimes attack them and cause secondary issues to treat.
Gotta get some rest. I will work to post more of the back-story of how we got here and more of sweet Brayden's awesome spirit and energy. Quote of the day: "YUM!" With eyes closed and great savoring over eating his first solid food since lunch on Monday - scrambled eggs, which are his favorite. Mom didn't bother to ask if the hospital's eggs are better than mine at home!
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