Don't Ask If You Don't Want to Know

Today was the last day that my son had to take his medications for HLH. Tomorrow is our routine trip to the hospital. He is feeling great and looking awesome. He's back to his football training and basketball games. This is all a thing of the past for him, like it would be for most 12 year old boys.

However, for me it will never be. My husband and I met with the Bone Marrow Team last week. The only true cure for HLH is a bone marrow transplant. It has been decided that if Julian were to relapse, he would need a bone marrow transplant (BMT). I became aware at this meeting that because Julian has a genetic link to HLH, the chances of relapse are a very real possibilty for him. This news knocked me down for a few days. Today, I decided to pick myself up and start figuring out a way to hold a bone marrow drive. Julian doesn't have a perfect match, although he has a close match. It would be ideal that we found a perfect match but even if we never did, it would be great if my efforts saved someone else's life.

I'm learning everyday how a deadly illness can change the dynamics of a family. The other children become pushed the side and the sick kid becomes "special" and will probably always get away with more things. You find yourself losing your temper with the healthy ones and trying to make every moment special with the one that you have an uncertain future with. I hope that I can develop the wisdom to be a good mom to all of them without giving them baggage that they will carry into their adult lives.

It's also affected me as a nurse. I have greater compassion for the sick and no tolerance for the ones that aren't sick and are abusing the system. Can you tell that I am an Emergency Room nurse. I find myself feeling a lot of anger at the patients that come in for pregnancy tests, ingrown toe nails, abdomen pain that's been there for a year. I'm managing to treat them all the same but it's so hard. I'm glad that we are all a work in progress through out life.

I have learned that most mothers would rather die a thousand times over than to watch their children die for any reason. That's the hardest part, is feeling so helpless and such a loss of control.

I find myself angry and sad a lot. I'm wasting precious time.