Little Dylan Big Miracles ...

About this campaign

Team Dylan, I don’t even know where to begin. I promised to take you along on this journey. I promised to be honest. So here it is. Here is my gut wrenching pain and brutal honesty. This is going to be long and hard to read.

We received a phone call last night from Dr. Gupta. He has read the MRI scan and believes that Dylan’s Loes score is too high for a BMT. This is NOT the news we wanted to hear.

He explained that this disease doesn’t allow Dylan to break down fatty acids. So they attack the myelin sheath of his brain. His MRI scan looks like a wildfire. If you can picture the burnt stuff that is gone, the fire (inflammation and damage) and the green stuff ahead that is in harms way. At the pace it’s going, and with how advanced Dylan’s disease is, if we do nothing, we have 1-2 years. He will slowly loose more brain function. He will go blind. Deaf. And finally into a vegetative state. It is a sneaky, heinous, insidious disease that I loathe with every fiber of my being.

And oh, by the way, there is a 50/50 chance that the other two boys have it. We get tested Thursday for that. What does this mean? For Evan, the chances are that he doesn’t have it or if he does it won’t manifest like it has for Dylan. We would’ve already seen signs. But he could pass it to his daughters.

For Sully, early detection is key. They would do baseline MRI and then they have. Whole different treatment plan and prognosis for him.

So first prayer request is that the other two boys don’t have it.

Another hit we took-there is an 85% chance that I am the carrier. 15% chance this is just a mutation. We like the 15% number better. And I might have some later in life things to deal with like leg pain, numbness and loss of bowels. Whatever. Not today devil.

So first prayer-that my other boys don’t have it. And that I didn’t give this to them. Imagine that guilt and that weight for just one moment.

It’s suffocating.

What does this mean for Dylan?

They have done BMT on kids with advanced disease. And when they do, usually one of two things happens. Neither is good. 1) the kids don’t make it through the BMT. 2) the disease progresses more rapidly and they never go home.

So, with that option off the table, I asked for something. Anything. Clinical trials. Experimental drugs. CBD? Hyperbaric oxygen therapy....give me something.

So, Dr Gupta has tried two drugs in combination. He has done this so far in 2 kids. It’s not a clinical trial. They are not indicated for this disease. It would be off label experiments use. Whatever. Game on. So we will have to fight like hell (whatever) with insurance to approve them. One is called Avastin. This is an infused chemo drug used for brain cancer. The other one is called Jakafi. It targets proteins in cells and stops them from growing. It is an oral drug.

His hope in administering these would be that they would slow the progression, and perhaps lower the inflammation enough that Dylan could then become eligible for BMT.

I reached out to Beaumont Hospital where Evan was treated. We are moving Dylan’s care there and they are willing to administer these medicines to Dylan so that we don’t have to travel to Minnesota. Dylan will be seen this Thursday at Beaumont.

The doctor also gave me a list of vitamins we will be starting to help Dylan.

Second prayer request-pray that Beaumont is able to get these medicines with minimal issues through insurance and that Dylan receives the fabulous care we know they will provide.

Our second option, and the one that I feel is our best option, is for each and every one of you to pray with everything you’ve got for a miracle. A reversal. Stopping of the progression. A restoration.

Impossible?

Not with MY God

You guys might think I’m a total whack job. And that’s OK. But ever since we came home from the hospital, I have heard a voice tell me “make sure you are putting your faith in the right place. Not in these doctors. Not in this medicine. Not in the treatments. In ME”.

So I ask you to pray for a miracle friends. Because I refuse to accept that this is it.

I will do whatever it takes to try whatever we can. Whatever path God puts at my feet I will walk it. But I will also unabashedly ask for God’s hands on my son and a miracle that only HE can work be done.