A Tiny Break

Friday brings no chemo again. The blood test for the fungal infection will not be back until Monday. Jenson’s immune system is strong enough to start the chemo, but we are in a holding pattern until those results are back.

So believe it or not, our doctor let us go home for the weekend. I am still in shock.

We have to be back on Monday, but are free for a weekend… like we have been on a military assignment and have a weekend at home to re-connect before returning to battle.

Jenson walks in the house and says, “It nice be home.”

He asks me to put on his favorite red footie pajamas with the reindeer antlers on the feet.

He wants to go upstairs and see his room. His face lights up when he sees his monkey bedding, “Hi cute monkeys!” he says. He then hugs all his stuffed animal friends and wants them all to go in his bed. He asks to see his favorite brown “grandma shirt” (a shirt Grandma Jo gave him which he is always wearing if it is clean). He says again, “It nice be home.”

Then Jenson says “Go downstairs.” He wants to look in the pantry – one of his favorite past times. He helps me unload some of the food we brought to the hospital. Then it’s off to look in the regifrigerator – another favorite past time. He asks for a “yogurt shakie” and drinks it with his favorite straw. He says again, “It nice be home.”

“I need go back hospital?” Jenson asks.

“We will be home Saturday and Sunday. We will go back on Monday sweetie,” I tell him.

Jenson replies, “Ok...it nice be home.”

Jenson’s sweet statement sums it up - it is nice to be home.

Monday will bring a big decisions. We are now considering two different treatment paths.

Path A: Clofarabine
Pros: Recommended as the right next step by most of the experts our doctor has checked with for kids who aren’t responding to typical chemo

Cons: Not researched for LCH; Very immuno suppressive (meaning potential for very long hospital stays); Nurses say the side effects are horrific; Can’t give steroids with this medication

Path B: Methotrexate plus Prednisone steroid
Pros: Much less toxic than 2CDA (which he was just on) and Clofarabine; Jenson responses well to steroids; Buys us time for his immune system to further recover; Buys us time until the results of the immunology tests come back which may lead us to change the treatment plan

Cons: May not be strong enough to do anything

Both types of treatments require hospital stays although the methotrexate hospital stay would likely only be 3-4 days vs 2 weeks for Clofarabine.

Pray for wisdom for us and the doctors as we have a BIG decision to make!

Kristin