Tubes and Pumps

Things are somehow moving forward. And the days are passing even if they are slow and filled with pain.

Jackson's counts are at zero, which is expected but not fun.

When his counts are at zero he has no immune system and he can get sick super easy. This round has been tough. Jackson has been in incredible amounts of pain due to c-diff that he tested positive for and also the mucusitis that is caused by the chemo. Basically he has mouth sores in the lining of his stomach which is very painful.

Jackson is hooked up to six different pumps on his IV pole. And throughout the day and night he often has all six pumps going. He is currently on five different medicines to fight off infections. Three are antibiotics, one is an anti viral and one is an anti fungal. The doctors started Jackson on a steady flow of Morphine to help ease his pain The doctors have also started Jackson on TPN which is IV nutrition- because he hasn't been eating anything.



The other day Jackson wanted to eat a donut but he is on a low microbial diet and they didn't have a donut that met the special low microbial diet requirements so Jackson settled for a muffin. Jackson took a big bite of the muffin and started to cry. I asked him what was wrong and he said that he wants to eat but that nothing tastes good. Chemo sure messes up Jackson's taste buds, and with Jackson's sore stomach from the mouth sores he hasn't eaten more than a gummy worm in three days.

When Jacksons counts are at zero it seems like things just keep getting worse and worse. At the beginning of this round when Jackson had to take several showers a day his skin really dried out and he got a big sore around his central line. Since Jackson has no white blood cells, his body has no ability to heal itself he still has a big sore under his bandage. Monday was bandage change day and it was with out a doubt the most painful bandage change we have ever endured. When we took off the bandage it ripped off some of Jacksons scab and then we had to put alcohol on the scab and on his super dry skin.



I don't want to lie, this round has been more emotionall taxing for me. Far more emotional than I expected. Brian and Hailey were sick for the first 4 days so they couldn't come to the hospital. Finally Hailey got better and she could come see Jackson but two days later they declared the start of "RSV Season" and now Hailey can't come up to visit due to restrictions. I feel like our family really has been torn apart during this round. I leave the hospital every time in tears. I hate talking about cancer related stuff, sometimes it overwhelms me. I hate how cancer has torn apart our family and how it is making my normally healthy boy feel sick and lay in bed all day. I hate that Jackson screams out in pain consistently all day long. I hate seeing him nauseous and miserable.

I know things will get better and that we are taking the steps to cure Jackson's cancer, but this isn't an easy road we are on. Right now I am praying for white blood cells because not only does that mean we get to go home, but more importantly to me, that means Jackson will start to feel better.