Update on Larry and Max

Larry had another MRI on Thursday and it showed that another tumor has grown. It's in the same area as the previous tumor that was removed in 2007. The doctors do not want to remove it because they think it will cause more harm than good, so here is the game plan:

Larry will be starting chemo (in pill form at home) and radiation. It sounds like he will be starting this in early November and it will take 6 weeks to complete.

Please, please pray that this all goes well and that it gets rid of the tumor. This is a very scary time for all of us and we need all of the prayers that we can get.

I will update as he moves forward with the treatment plan.

Thank you for all of the support.

Update on Max
Max's heart rate has been dipping into the 70s while he is sleeping for the past 2 weeks or so. He is staying at or slightly above normal for a kid his age, but he's never done this before. So Dr. Ben and Dr. Dixon have ordered for him to have an EKG and a Holter Monitor test done. He will have the EKG done on Monday and I still have to schedule the other test. We are confident that nothing is wrong considering Max has been on a monitor for most of his life without any heart issues, but we are doing it to "allow all of us to sleep at night."

Onto other things... Labs are great and the doctors are ready to set a date for transplant. I have to call and get it set up but am having a really hard time dialing that number. I feel like I am scheduling a date that is putting my son's life in danger. How do you pick a date when you don't know if your child will make it past it? I keep hearing from one set of doctors that it's going to be life changing and that's this is what we've worked ourselves up to. That this is what we have been wanting all along. But then another set of doctors remind me of how dangerous and high risk it's going to be. We knew it was dangerous, but I am reminded of how dangerous every 3 months. I feel like knew challenges are added every three months as well. I am petrified.

I hate thinking that 5 months from now our lives will be changed forever. Whether it be for the best or the worst, we don't know. I hate to think about the what if's. I hate thinking about all of the risks of the surgeries. That's all I hear when the doctors are talking to me about it. I have a really hard time hearing the "this is going to be life changing for your whole family" part of the conversation. All I hear is that there is only a 40% chance that the ureter will be able to be connected to the bladder....the chance of infection is very high because of his diverted bladder....he will probably come back to the ICU intubated....he is going to pee so much that we will have to give him a lot of fluids....his electrolytes could go crazy and we will have to pump him full of extra....he is going to be very puffy from all of the fluid and steroids....the kidney may not work right away and he may have to go back on dialysis until it does....you need to prepare yourself that there is a risk that he could reject this kidney.

I wish I could fast forward through 2010 and 2011 and begin a new life. I hope so much that Max will pull through these next 2 surgeries without many complications. We know there are going to be complications... Max doesn't have surgery without a complication, but I pray so hard that it's nothing major that puts his life or the kidney into jeopardy. I am holding onto hope that what Dr. Dixon said about being at Max's high school graduation will come true. I am so afraid to think too far past Spring of 2010. I am so afraid that what we have worked so hard for could take Max away from us. The one surgery that is suppose to save his life could take it.

Someone asked me, "How do you live your life knowing that Max may not survive?" My answer was, "I don't think about it. We wouldn't be where we are today if that's all I thought about." Ever since I found out on Wednesday that it's time to set a date... that's all I've been thinking about. I hate knowing that I have to call that number to set a date. We want to do this in March for several reasons, but deep down I want to wait because I know I will have those 2 extra months with my little boy. I hate not knowing. I am so tired of playing the wait and see game. I am tired of not knowing whether I will see my son go to preschool or graduate from high school or get married and have children of his own. I know that no one is guaranteed these things, but having a chronically ill child makes you think about them more. I know hate is a strong word, but I hate the fact that I have to set a date for my son's 13th surgery. I hate thinking that a year after the transplant I have to call and schedule his 14th surgery. A surgery that could last 24 hours. I hate that my son is going to have a scar from above his rib cage down to his pelvic bone. I hate that my son is going to have to take medication for the rest of his life just to keep him alive. I hate that I can't take my son out because of germs. I hate that Max will not be able to swim in the lake that I grew up at until he is 4 years old. I hate when I mistake a beep in the store or on TV for one of Max's machines (even when he's sitting right in front of me not hooked up to anything). I hate that my son was born with ESRD. I hate that stupid flap of tissue that caused all of this mess.

I hate thinking about having other children because of our experience with the first one. I thought I could do it, but I don't know anymore. I hate not knowing what the future will bring.

But in all of this hate... There is a little boy who has beat all of the odds. A miracle. A little boy that so many people look up to. A hero. A beautiful little boy that I call my son. A little boy that we all call Max "The greatest."