New Way Of Life

My life has felt like a roller coaster these past few days. My son Julian is doing well. He's busy with sports, video games and friends and appears to spend very little time thinking of being sick. Me on the other hand, spend most of my time thinking of it, holding back tears and pushing away the vivid memories of his worst moments.

I am trying really hard to find a new way of living my life with the acceptance that my son is healthy and happy right now, today...and I can't control what happens tomorrow. Trusting God has always been a really difficult thing for me. I have no doubt in my heart and mind that it was solely through the grace of God that my son lived through his crisis.

I can't help but feel that this is some type of dirty little trick to keep me on my knees and in submission to God. In life, most of us take back control of our lives from God when things are going well. When things are not going well, we gladly give it up to God to fix and make everything OK again. For so many years I have lived keeping God at arms length, loving him, believing in him but just not being able to give him control. Now, my son is in a place that I have no control to change. Talk about submission. I'm either going to grow in my faith and have peace or I am going to die prematurely from the stress of it.

I think that I have said this one too many time and have probably wrote it in my blog already....I would rather get hit by a truck a thousand times than lose my son or see him get that sick again. It feels really unfair that it happened to him and not me. He's the straight A student, gifted athlete with an infectious smile. I've made enough mistakes to last the rest of my life and a few other lives too.

Julian is now done with his protocol treatment for HLH and is in remission. So, for the rest of his life we have to just be aware of any warning signs that the disease won't strike him again. This week he developed fluid in his knees and minor swelling. He complained of knee pain but it didn't slow him down with basketball.

Monday he returns to the hospital for more tests because of that swelling. We are trying to always be one step ahead. HLH causes multi-system inflammation in the body. Another thought was that Julian could possibly have Juvenile Rheumatoid Arthritis. JRA is linked to HLH. Julian had swelling in his joints with a rash at the onset of HLH. However, becasuse he had no problems creep up when the steroids were removed, the thought was that it was more probable that it wasn't JRA. Now, we scratch our heads at what is happening and I wonder what this means for him.

He is terrified of having a crippling disease and he doesn't understand what a bone marrow transplant means. More things to pray about.

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.