Chapter 5

"Stop what you are doing, get on your knees, look up to the heavens and pray harder than you have ever prayed in your life and mean it. Now." 

5

I'm not sure how much sleep we got after that but I know it wasn't much.  Bill went home most nights because he had to work so  I stayed in the room with Axel. The chair they give you that pulls out into a bed wasn't comfortable at all but there was no way in hell I was going to leave the room because I was so afraid something would happen to him if I weren't there.  

Being in this situation is one of the worst feelings I have had to deal with. There are going to be a lot of situations you find yourself in and you just don't know what to do.  Hell, this is a very traumatic thing to go through and no, there aren't any fucking manuals to tell you how to do it.  The uncertainty, the not knowing will kick your ass from here to hell and back again yet you have to find a way to get your ass up off the floor, brush off  and push forward.  I'm not saying it's all going to be easy and i'm not saying its all going to be bad.  What I am saying is that it is going to be a test of your inner strengths. Your mental, emotional and physical strength.  Hell I'm still emotionally, physically and mentally exhausted and we have been doing this for 2 years. 

It's hard for me to try to fill in the gaps and I found that when I started writing this book I had to go back to the beginning when I made a Facebook group for Axel.  Oh yes....do NOT try to keep calling, texting, emailing etc people.  You will have an anxiety attack, you WILL break down emotionally because you will not be able to keep up with it all.  Make a support group on Facebook.  If you don't know how, find someone to teach you.  Get yourself a tablet, a Chromebook, an iPad or whatever and post.  Post every day that you can.  Encourage your friends and family to join the group so that you can update EVERYONE at the same time.  Not only will it make it easier for you to not have to keep vigil by your phone, it will also serve as a release for you. It will feel like you are talking to someone about it.  It's therapy.  Use it, believe in it and it WILL help you.  I found myself trying to respond to about 60 texts a day and it only got worse.  I finally made Axel's group on Facebook and to this day I am still posting and there are over 300 followers.  It's uplifting to have so much support.  It helps you get through dealing with your child going through cancer treatments.

Now where was I......Oh yes.  The night that we were told Axel was pretty bad and we made our phone calls, Axel's father, his girlfriend and Axel's grandfather came to visit around 11pm.  Not knowing if it would be the last time they would get to see him, we didn't protest at all. We weren't too pleased that they just showed up, but that's going to happen and you have to pick your battles.  It's going to be a long road so choose your path wisely.

The days following were pretty much the same.  Axel hung on, we kept vigil praying and talking to him, asking everyone to pray hard for Axel.  Fluid was draining nicely from his lungs but it was draining and draining and draining.  Not sure where it was all being stored because there was a shitload of fluid coming out every day.  He was given Lasix to help get rid of the extra fluid in his body and although he was still very swollen with fluid, it did seem to be working.  I know that we had a long way to go and Axel was no where near out of the woods yet.  There were CT scans, X-rays and Lumbar Punctures to do but so many variables had to be in place for these to happen.  I had a hard time wrapping my brain around a lot of it but somehow  managed to and push on day after day.  

I had to.  He's my boy.