“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.”―C.S. Lewis

It feels like it has been an ongoing battle with the insurance company

since the November Rhuematology appointments. I had an insurance

rep tell me years ago, when Lucas was little guy and synovitos showed 

up in his hip, that it wasn't personal. But I have to tell you when it's 

your child it feels very personal.

After 11 weeks without medicine, our guy is getting an infusion of Remicade.

We had hoped to start him on Actemra a medicine which has helped two 

of his siblings. However, Remicade is what insurance would approve and

so after much debate and consternation, Remicade it is. 

I heard someone say once "fear the disease more than the medicine" ~

but truthfully I fear both. I fear the side effects and the cancer risk of

the meds and I fear the inflammation his innate immune system can 

do to his brain, eyes, ears, joints and organs etc...

So today here we sit at Penn State Hershey Children's Hospital getting 

the first Remicade infusion. Remicade(infliximab) is a chimeric IgG1k

monocional antibody used to treat several inflammatory conditions.

A chimeric antibody is an antibody made by combining genetic material

from a nonhuman source, like a mouse, with genetic material from a human being. These antibodies then block the action of TNF Alpha and reduces inflammation. My defense mechanism when faced with medical concerns is 

to research.

I looked everywhere to find someone else's experience so we would be 

able to have an idea of what we were facing and couldn't find anything.

So I thought I would document today in case someone else is looking.

We arrived at the hospital at 9 am. Lucas had his vitals checked, IV 

placedand blood drawn, two tubes. He was settled into his infusion room 

and given Solumedrol through his IV which took about 15 mins and then Benadryle through the IV for about 15 minutes as well. He had a small 

reaction to the IV Benadryle, his arm felt like it was burning. It was almost 

done so they placed hot packs on his arm for comfort and made a note to 

dilute the Benadryle more and run it slower next time.

Around 10:30 the Remicade was started. The nurse told us it will run

for two hours and ten minutes. She will come in every fifteen minutes to

increase the speed of the medicine and check his vitals every 30 minutes.

Then he will be observed for an hour before heading home.

And pretty much how it went. He didn't have any big reaction to the meds.

The nurse did tell us that most reactions happen on the 2nd infusion, so 

we'll cross that bridge when we come to it, two weeks from now. He was 

very pale toward the end of the the infusion.  

He was very sleepy through out the whole infusion but never fell asleep.

He was thankfully not terribly grumpy. Now we are in the observation 

process and he is looking toward lunch. 

I was thinking about the above C.S.Lewis quote. I was a young child

when I sensed God's presence and often when pressed I can truly

say I don't know how to do anything but trust Him. Innately I know

that He has our best in mind. But the journey has many highs and lows

these medical struggles are definitely lows and yet He is here with 

us. Just like Daniel in the lion's den. He is Immanuel God with us!

Which means he has the power to turn whats hard for us into

something good for us.