All About Brandon (all about brandon's illness really)

Okay, so moving on to # 3 in our "all about" posts. Yes, I know its going to take 8 posts to get thru everyone...luckily the youngest 3 can be summed up pretty easily...for now.
# 3 in Brandon. (remember in Emanuel's post, I said that some of our kids were a bit tougher than others? This would be one of those who fall in the "tough" category. The term "tough" should be understood as "pain in the neck." Ha ha.
Brandon's full name is Brandon John. It was supposed to be Brandon Michael but in the delivery room, my husband raised a last ditch campaign to make his middle name John after Albert's grandfather who had recently passed away. It sounded like a sweet suggestion so I gave in. So, Brandon John he became. He was born on October 29th (induced on his due date) and was our biggest baby at 9 pounds 1 ounce and 22 inches long. He was also our quickest birth. Pictocin was started at 10:30 a.m. with me only dilated half a centimeter and he was born at 1:53 in the morning. I dilated from 4 to 10 in fifteen minutes. I should have known then to buckle my seatbelt....
Brandon is such a paradox. He has the sweetest, most gentle heart in the world but has the meanest exterior of any kid I've ever met. He's the same kid, who, in one day will be sad if we don't make it to church, but push his brother down the steps 5 minutes later. He will cuddle in bed with me one minute and the next ask "how much longer will it be until your tummy doesn't look pregnant anymore?" Thanks, Brandon...the baby is 3 months old.
As most of you know Brandon has been through a lot in his little 8 years. Things were fine until he was five years old. Brice had just been born 5 weeks ealier and my mom was visiting to meet the new baby. I noticed a small patch of peteichei (I can sooo never spell this word, but its small red dots that are broken capilaries under the skin causing little bits of blood to come to the surface) I was interested, but not concerned. Our older son, Drew has chronic ITP and gets these when his platelets are low but I also know anyone can get them from time to time in small amounts and this was a really small amount. It was my birthday weekend, my mom was visiting, we had a new baby...so I just kind of waved it off and figured if it grew any, I'd make an appointment with our pediatrician. On Sunday, Mom left and we decided to go for a family picnic at this place called Elephant Rock State Park. Its full of hiking trails and rocks to climb. Awesome views. It's about an hour and a half away though. We drove down and just before arriving Brandon told us his mouth was bleeding. We figured he must have bitten his tounge and kept on, passing him a wad of paper towell to hold on his mouth (in our house, not much is taken too seriously) He kept complaining that it was still bleeding and we, again, figured he was making too much of something small. Until he passed the paper towell up to the front and it was completely saturated. Okay, mouthes bleed a lot. We gave him another paper towell and he filled that up too. We immediately pulled over and called him up to the front of the van. The thing was...there was no injury in his mouth. No scratch, scrape, blister or bite that we could find. But blood kept comming. Finally we got it to stop and arrived at the park. I was feeling uneasy at this point but not panicked. But then I thought of the little spot of petechie that I'd seen. I lifted his shirt to see if there was any more of it, and when I did, I discovered that his whole chest, and tummy were covered. I looked down his pants and there were more all over his legs. absolutely covered. Albert and I looked at each other because we both knew it meant he had low platelets but we didn't know why. Then the mouth started bleeding agian and again took forever to stop. At that time I only knew of two things that caused low platelets...IPT (like Drew) or Leukemia. I know the smart thing to do would have been to go to the nearest ER right away. But I also knew we were going to be admitted and needed to get back to St. Louis if we wanted to be with our own doctors (Drew's hematologists). We should have left immediately as our son technically could have hemoragged to death at any time and I knew this...but we didn't leave. Something inside of me told me that it wouldn't be as simple as what Drew had (though I still hoped) and that he needed that one last memory of doing something fun as a normal kid. We ate our lunch, we went on a hike, we let the kids play. Then we packed them up and drove to the hosptial in St. Louis. The mouth was still bleeding and now the patches of petechie were on his ears, covering his face and under his chin.
We got to the ER and got the dreaded CBC. Albert took the older kids home after a while and I stayed with Brandon and kept Brice with me. The doctor came back and told us that Brandon did indeed have low platelets (14,000) Normal is 150,000-350,000. I tried to ask questions but we kept avoiding me. He left the room rather quickly after mumbling that it was probably ITP (but not looking at me). Nurses kept comming in to see if I was okay. They said they were taking Brandon for an MRI of his head to make sure there was no bleeding in his brain. As soon as he left the phone rang in our ER room. I thought it was Albert or my mom. It was Drew's hematologist.
Immediately I said "Dr. Rob, I thought what Drew had wasn't genetic and our other children wouldn't get it...but now Brandon has it too."
Dr. Rob said "Angela, listen. Brandon doesn't have ITP. With Drew...he gets low platelets but that's all. His other counts stay normal. That's ITP. Brandon is also low on Red blood cells and white blood cells. That's not ITP. We are admitting him and tommorrow morning we will be in to do a bone marrow biopsy."
I suddenly felt the whole world change right then. I asked, "What are you looking for? What do you think he has?"
"We think he has childhood Leukemia. A.L.L. And if he does...we can treat it. It's not an automatic death sentence like it used to be..." I'm sure he said more, but that was all I heard. Or at least all I processed. I called Albert and practically screamed into the phone "Get here now. Dr. Rob thinks Brandon has Leukemia." This of course set my poor husband into a panic. When he still wasn't there an hour later I wondered what could have been taking him so long. It turns out he was in the parking lot crying, talking to my mom and trying to gain some composure before comming in.
The next day we did the bone marrow biopsy and it revealed that he didn't have leukemia. He had Aplastic Anemia which is a failure of the bone marrow to produce the cells needed to sustain life- red blood, platelets and white blood cells. Thus he needed transfusions of red cells (which I didn't realize was just a regular blood transfusion until later) and platelets. White cells only live 1 day in your bloodstream and thus cannot be effectively transfused so he was very suspeptible to infections as his body had no way to fight them. Dr. Rob's partner, Dr. Bob came by and sat in a chair beside Brandon's bed and laid it all out on the line by saying "You've been given a deadly diagnosis. We will do everything we can to treat him unless or until his quality of life no longer justifies the treatment. If that happens we'll keep him comfortable so that he can enjoy the rest of his life until he passs."
"But will we know, if that's the case?" I asked. "You will if you're honest with yourself." he answered.
We did a surgery to put in a tube called a Broveac (sp?) It was implanted in his chest with two tubes that hung out and down his stomach. This way blood could be drawn and meds and transfusions given without constantly sticking him. The hope then was that one of his brothers would be a sibling match and we could go straight to bone marrow transplant (which offers a cure) but as we all know well, no one matched. So option #2 was an immunosuppression treatment. This was not a cure. He'd still have the disease becasue he'd still have his own diseased marrow. The hope was that the meds could kick his system in the butt and make it start to produce something. If it didn't we'd go to transplant using a match from the national registry.This type of transplant also offered a cure but with one slight catch...the transplant process or the resulting Graft. Vs. Host disease kills between 20%-50% of recipients. A transplant with a sibling as a donor is less risky with a mortality rate of 5%-20%. (see now why we want a sibling match???) Also sibling transplants are far less likely to result in Graft Vs. Host disease while a non-related match transplant almost always does.
The medicine worked and Brandon's marrow slowly recovered. I'll never forget the day his marrow testing came back normal. I had anticipated that day and thought I'd be laughing and happy and calling everyone. But when the news finally came it was a different type of happiness. We sat silently in the van together driving home, Albert and I both unable to speak. We called my Mom and Albert's Sister because we felt we should but honestly, we only made those calls out of obligation. We really didn't want to talk...oddly, even to each other. It was like we were scared if we said it aloud it wouldn't be real anymore.
The remission lasted until we weaned him from his meds and then pretty quickly he relapsed. I will also never forget that day...the start of his relapse. Dr. Rob came out to the wating room, with Anne, one of the nurses. They both sat down on either side of me. I was pregnant with the twins (that we'd conceived still hoping for a match). I knew when they sat down there was a problem. Here's the deal. If the doctor stands while they talk to you...all is usually okay...but if they sit...look out.
So, Rob explained that platelets were falling. He hoped it was just a fluke but doubted it and said that if things kept falling we'd have to restart the cyclosporine. He reminded me that there was no guarentee it would work again and that if it didn't, we'd try to treat him symptomatically until the twins arrived and we could see if we had a match for transplant before resorting to the non-genetic match. Counts kept falling and we had to restart the meds. It worked again, praise God. Espicially since the twins weren't a match (though they didn't match each other either. so frusterating!)
We quickly got pregnant with Sydney. Again no match. But Brandon is doing beautifully. Weaning time is almost upon us agian. Many people, including us at times, have asked, "why not just stay on the medication. He's doing so well" The reason is that the medication he is on, cyclosporine has a whole host of side effects and bad things it can cause. Seriously, if you have time google Cyclosporine and look at the list of crap. Some people such as kidney transplant patients have to stay on it long term but its not good if you don't have to. So, this spring we start weaning. Success might mean "permanent remission" Failure means going to transplant or staying long term on a medication that is known to cause cancer, kidney failure, liver failure...and on and on... God has seen us through all of this, in his infinate wisdom and I know he'll take care of Brandon no matter what.
Okay so I just realized this post isn't all about Brandon. It's all about Brandon's Aplastic Anemia and that isn't who he is, its what he has. So, I'll add another post that is really all about Brandon since the point was to get to know him and not getting to know Aplastic Anemia! So, here I go to start a new post...