Helpless – not HOPE-less! … a PLEA for prayers!

Fix the cyclotron (2) (Small)

This is the inside of the actual proton cyclotron at Florida Proton (we added AJ and the repairman). We need your prayers because it’s broken and out of our control whether AJ gets his necessary treatment.

From the moment we were told about AJ’s diagnosis and the best plan to treat we were told there were three ways to attack the ependymoma tumor in his brain:

1 – Leave it in there, and it would eventually take over his brain and he would die.

2 – Conventional radiation (photon), which they RARELY recommend in a growing 2-year old brain due to the damage it can cause to unknown parts of the brain.

3 – The AMAZING REVOLUTIONARY technology of proton radiation! A direct hit on the tumor with minimal damage to the surrounding area giving us about a 60% success rate. AT LEAST four treatments (usually five – but strongly recommended no less than four) a week for six to seven weeks.

We were told that if this would have happened 10 years ago before Proton was around our success rate would have been closer to 10%, but proton therapy has significantly increased success.

The answer was obvious: PROTON of course!

Our sweet little monkey

Our sweet little monkey

Due to Thanksgiving holiday we were scheduled to do a treatment yesterday (Sunday) to make sure we got our minimum of 4 in a week.  Well, the proton machine broke down yesterday… all 3 machines. People were asking what does this mean? When will we make it up? Can we come in on Thanksgiving? The day after? We were all so worried as parents of our little babies, standing helpless in the halls of the Ronald McDonald House, waiting and wondering how we were going to get our 4th treatment. It didn’t matter if we get a turkey dinner – we desperately want to do what doctors have told us is the best for our kids.

It wasn’t until that afternoon that I started thinking… what if it doesn’t get fixed? I was calmed by thinking positively, “It will all work out.”

This morning, I woke up to a 6:30 AM call from the nurses letting us know that the machine is still broken. A few hours later, they called checking back in to say the machine is still broken and the doctors are in a meeting. This meeting will review which patients cannot wait any longer and will need to be put into photon (the more brain damaging) type of radiation within the next few hours.

I’m a bit of a mess and tears just keep coming so please start sending your prayers our way as well as that the machine will get back up and running.

Please pass along to your anyone who wouldn’t mind joining in our prayers… We can use all the faith we can get!

Fix the cyclotron (1) (Small)

This is the inside of the actual proton cyclotron at Florida Proton (we added AJ and the repairman). We need your prayers because it’s broken and out of our control whether AJ gets his necessary treatment.

 

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Posted on November 24, 2014, in Broken cyclotron, Difficult Day, Faith, Prayer, Proton Therapy, Radiation, UF Proton Therapy. Bookmark the permalink. 4 Comments.

  1. Ed and Kriss, I am so sorry for the painful problems your family is having. AJ is so adorable. I have never even seen him. I pray for you and hope the machine can be fixed sooooon. Love ya, Linda

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