I took Zekey to his second IVIG treatment at Cincinnati Children's (LOVE IT THERE, P.S.) on Tuesday on my own as Andy had to work. I knew that if this treatment was going to work, we would have to start going alone. It's once a month and a 20+ hour treatment and the other three need to go to Toledo. While in the hospital, no one, including Zeke, gets much sleep and that makes everything worse. So, it's all just a lot but of course worth it if it was going to work for our sweet Zekey boy.
Before we set up, I was smiling as the nurses were coming in, talking to Zeke and I, getting all prepped for our soon to be miracle, right?
In comes Zeke's amazing neurologist, Dr. Franz. I was so glad to see him! I knew he wanted to meet with us since Zeke's case is quite severe, many treatments have failed so he watches closely with these patients until something works.
Well, he was a little gloomy-forcing a smile. I can sense these kinds of things. We had small talk and he did his usual high five to Zekey. He was very concerened how I was doing. Then the small talk ended and he paused. I realized, he had something very important to say and it wasn't going to be good.
"Well, I'm very sorry to say... Well, I was really hoping your husband was going to be here, too. Your son has a very rare genetic disorder and it's not good. He has a form of Batten's disease..."
I was holding onto every word he said although I was numb. I wasn't surprised, not at all. Something, was clearly wrong-we knew this.
He went on to tell me that it is unfortunately the worse of the two options that could be causing his seizures. The fact that all of my and his efforts were failing time and time again made him wonder if one of the tests he sent out for, being a genetic disorder, were going to come back positive. And they did.
"The reason why his seizures are not able to be controlled is because his brain is letting off a toxic chemical and it's causing malformation in his brain which is causing the seizures. He will eventually loose his eye sight, his ability to eat, control his saliva, breath. I'm afraid he is only going to get worse. His seizures will eventually get so bad, they'll stop. He will become brain dead and that's when I let the families decide on what to do from there. I don't judge their decisions."
I replied dumb-founded (because this was the worst of the worst...he admitted to that) "Okay...so, um, how long does this progression take?"
Dr. Franz, "Well, you know, only The Lord knows that."
BINGO! I am talking with a brother in Christ, thank you JESUS for bringing me to a place where not only are they taking such good care of us, you sent me to a Dr. who puts his faith in You, so he knows the hope we have!!! I was so thankful for this. I needed that so, so much!
He continued, "It takes approximately 3-5 years before he gets to the final stage. I'm sorry to say it's extremely progressive. There isn't a cure."
At this point, I start to cry because, how do you not?! Then I start to sob, because how do you not?! Dr. Franz takes Zeke from me so I can just get.it.out.I then say, "This is the kind of thing that makes heaven so beautiful. Zeke will not be this way in heaven. We are strong beleviers and we will be praying for healing, here on earth, though."
He replied, "Well yes! Don't stop praying for that!"
He was kind, and compassionate. Before he left, he took my hand and looked deep in my eyes and told me he was so very sorry. I was looking at, not a stranger, but a brother and that was such a blessing in the midst of devastating news.
The nurses were all notified and checked on me often, like a friend would. They would give me hugs and say, "God bless you " when their shift was over.
I then had to call Andy. And that was so difficult. I wanted to tell him good news but there wasn't anything other than the blessing of Dr. Franz and I talking of heaven and of God. And that's good news, right?! I mean, that's straight up 'THE GOOD NEWS'!
I had a little time to process it all but honestly, every time I began to sob, Zeke needed me or a nurse walked in. Andy had to work late at night but then I came to a place where I needed him. Not just emotionally, but physically. Being at the hospital is not easy, especially with Zeke. I can't even begin to describe the difficulty. God love him! ;)
I go Crazy at hour 15, people. 'Why even put on make-up?', I ask myself.
The ride to Toledo was full of worship music because Zeke does best with music on. But I can't help but sing to it which means I was only able to pray what I was singing. I knew God was with me.
In my doubt, I asked Andy, "What do we pray for? This diagnosis is huge."
Andy replied, "We pray for God to heal him. That doesn't change. It never will. The diagnosis doesn't change anything."
That blessed me so much. I needed reminded of that. This diagnosis is minute compared to our God. He is fully capable of healing our sweet boy. His sweet boy.
So, we continue to pray for God's healing. To be the persistent widow. To pray The Lord's Prayer over him. Why on earth (ha!) would we stop praying that?!
We also thank God for what He's doing because 'doing' is definitely going on. I mean, is your heart being stirred in a way it hasn't before? Do you feel the Holy Spirit bringing you to a new place in your relationship with God? He's doing things in the hearts of so many through Zeke's illness. And believe it or not, that blesses us. It keeps us going! Why go through this for nothing?! This isn't just about Zeke. It's about through his story, God is being revealed. He is living up to his name.
So, until Zeke is fully restored, as we ask you pray with us, we will pray for strength and mercy and wisdom for those who are working hard on finding a cure. Pray with us?! THANK YOU!
*What is Batten's Disease?!*
Basically, it's rare. Two people have to be carriers in order to have a 25% chance of passing on both recessive genes (Andy and mine) on to one child. All of my children had the same chance of getting this disease. They all have a 50% chance of becoming carriers and a 25% chance of not carrying it at all.
Batten Disease has 4 different "time zones", if you will.
1. They can be diagnosed from conception and never really develop well, right from the start.
2. They can develop it at age 2 and up until then, develop fine, as Zeke did. It starts with seizures, then they loose their eye-sight as that chemical gets into the nerves of the eyes. Next, they slowly loose all of their functionality. Usually, after about 3-5 years after diagnosis, they become brain-dead and are unaware of life itself. Rarely do they make it to early teens. This is when he gives the family the choice on how long before letting go of what is now only a body. *Choking down sobs* what a horrific disease that one too many have dealt with! 'May Your kingdom come, Lord Jesus!'
3. They develop in later adolescents (age 7-10)
4. They develop the disease after age 30.
The refreshing thing is, when you carry the gene, as Andy and I both do, we are not effected and you only carry ONE of the 4 option. Andy and I carry the Later Infantile gene (#2), which means our other children are okay. Bexley isn't showing signs as Zeke was at her age, so he says there is no concern there.
So, what do we do with our other kids? Well, since we know the exact gene mutation (that many Ohioans have as whoever came to settle here, brought this gene and it takes two to have the possibility of the disease and even then, it's a 25% chance.CRAZY!) they know where to test the other kids. They will see if they are carriers. If they are, they just need to be sure their future spouce isn't a carrier, then the children will not ever get the disease. And if they want to be 100% sure, they can get a non-carrying egg or sperm and do invetro. Wipe out this darn disease for good!
Clear as mud?! It's fascinating, to me. Obviously terrible and so a part of The Fall.
As always, thankful for the power of The Cross and what that means for those who walk with Jesus.