Change of Location

Jenson is taking a turn for the worse. His counts continue to drop, his liver tests are abnormal, his pain level is excruciating, and his albumin levels (which are a GI indicator) are as bad as they were 2 ½ years ago before we started chemo. He is going downhill fast.

There is no greater pain than watching your child suffer. I keep saying to him, “I just want to take away your pain.” Jenson replies, “You can’t. Just rub.” He is one insightful child. All we can do is advocate for him and do the only thing that brings him some level of relief – rubbing his leg, head, and back.

I hate this disease. I am reminded of the first Histiocytosis Association meeting we attended in California. It was a couple months after we got Jenson’s diagnosis and before we started chemo. When we checked in, they had these flat suckers that said “Histio Sucks”. At the time we thought it was a little odd. Now we couldn’t agree more. Histio sucks!

They transfer us to the downtown hospital where they do the bone marrow transplants hoping this will increase the speed of urgency. Jenson is very brave on the ambulance ride down. We are on the bone marrow transplant floor and will meet with the transplant team tomorrow … although I am pushing for a meeting today.

Please pray for continued strength for Jenson’s fragile little body.

Kristin