Last night marked 5 months from the night I took Tyler to the ER where he received his diagnosis. Through all the ups and downs we have had during this journey, we’re now in our deepest valley.
Tyler started Defibrotide today, the investigational drug that hopefully will reverse his Veno Occlusive Disease. It will be infused over a two-hour period, four times a day. The primary side effect of this drug is bleeding in the brain, lungs and GI tract, so Tyler is getting platelets regularly throughout the day.
Tyler is still retaining fluid, but his weight and girth did not increase for the first time in a few days. The Defibrotide is supposed to stop the leaking in his capillaries, and that will allow his body to finally get rid of the fluid. This is expected to take days. In the meantime, he is restricted to drinking 500 ccs (2 cups) of high sodium liquid in a 24-hour period. He is excessively thirsty, parched and dry. Tyler’s nurse told us about another child with VOD who was so thirsty he resorted to drinking the water from the toilet when he was alone in the bathroom. Tyler can relate – he is that thirsty. It’s very hard for him to understand that this is to prevent him from getting sicker, as the excess fluid can spread to his lungs. Once there is pulmonary involvement with VOD, things go downhill quickly.
Tyler’s rash has nowhere else to spread. It is all over his body. It was decided today that it is a drug rash, so out of his 4 antibiotics, one was chosen as the most likely culprit and replaced with something else. His fever continues, and they are speculating that it may actually be coming from the rash itself. I’d never heard of such a thing, but there’s a whole lot about all this I’d never heard of.
Tyler slept last night! What an amazing reprieve! Today, his eyes could barely stay open, but for some reason he fought off sleep. We so wanted him to just drift off so he could escape from his intense suffering. It is absolutely heart wrenching for Ron and for me to helplessly sit by while he suffers. No matter how things turn out, I don’t think I’ll ever forget the feeling of watching him be in such agony over the past week. I hope this is the worst of it all, but we are told to brace for engraftment sickness later on since this is still “only” the effect of the chemo.
Our pastor visited Tyler today and commented that he thinks Tyler must be the most prayed for kid in Maryland. From many indications, I’d say that extends to many more states than just Maryland. I don’t understand why the Lord has led so many to pray. I also don’t understand why those prayers haven’t resulted in less suffering for Tyler. However, I do understand that God deeply loves us, cares for us, and is suffering right along with Tyler. An excerpt from Casting Crowns’ song, “Praise You in This Storm” sums up so well how I feel:
I was sure by now,
God, You would have reached down
And wiped our tears away,
Stepped in and saved the day.But once again, I say “Amen,”
and it’s still raining!
As the thunder rolls,
I barely hear Your whisper through the rain:
“I’m with you!”
And as Your mercy falls,
I raise my hands and praise the God who gives,
And takes away.And I’ll praise You in this storm,
And I will lift my hands!
For You are who You are,
No matter where I am.And every tear I’ve cried,
You hold in Your hand!
You never left my side;
And though my heart is torn,
I will praise You in this storm!