The Climb

After the big day yesterday, we were looking forward to an uneventful day to catch our breath. Today is not going to be that day.

Jenson is struggling. His belly is incrediblity distended, his eyes are jaundice, and he's complaining of back pain despite heavy doses of pain killers.

We now know why - he has pneumatosis or air in his bowel wall. The pre-transplant chemo can cause it. The only remedy is gut rest meaning no food or drink at all. Hopefully that will help clear it because it can lead to a very serious infection. So again we wait and try not to worry.

His liver/spleen bilirubin levels are also elevated - yet another pre-transplant chemo side effect. This is another thing that needs to be closely monitored to make sure it doesn't get worse.

It is like we are climbing Mount Everest. We have been climbing for 3 years in the fog and despite lots of energy and effort we are far from the top. Yesterday was the first day the fog cleared for a brief second, and we could see the summit. We also saw really rough, steep terrain ahead and that we still have a long way to go. It is daunting because we are already running on fumes and so exhausted - physically, emotionally, mentally, spiritually.

But we have to push through the fatigue and keep climbing while navigating all the rock slides, mountain sickness, and icy patches so our little boy makes it to the summit.

Kristin