Jones Family

Jones Family
November 2009

Sunday, April 26, 2009

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.


  1. I cannot believe it all happened so fast.

  2. I can't believe it happened so fast either!

  3. Hope you're feeling better now.I can't wait to see you in January.I am so exited I could cry. I've taken your sickness to heart.And I've been praying and praying and praying.I hope you have joy to your hearts content.I just can't believe it happened to you.I know I was mean to you in the past.I truly hope you can forgive me.Since I've heard about your sickness I've regreted all the times I've upsetted you.I hope you know I'll always care about you.Your friend Isabelle .C. Johnston.

  4. I know you aren't feeling your best.I'm wishing you the longest of life,the happiest of days,and the best of friends.I've been praying for you.I hope you remember I'm always standing by you.I really really really really really really really really really really really really really really really really really really really really really really really really really really really really miss you.Your friend Isabelle .C. Johnston.