Skip to main content

A new direction of care: disease control vs. symptom management

When your child leaves the hospital after a medical procedure, you expect them to be better. You have some confirmation or resolution to the problem and a followup. 
This week when we left the hospital with our son Xavier, it was a completely different feel than usual. Being in hospital and having him undergo surgery is sadly old hat for our family. However, this time was different. 
In the past, we had always left with a plan, some resolution -- with a fight against his cancer whether it was radiation to finish the job or to recover from a successful surgery. 
This time is different. We have made a transition of care. We are no longer in attack mode. We have no arsenal left nor intelligence about our enemy.  
When Xavier's surgeon said we were free to leave Friday, we were hesitant. In fact, we said no. We wanted to stay another night. There is so much uncertainty in his condition now, the hospital is strangely comfortable. 
Perhaps it was our subconscious talking. We were trying to block out what it could mean going home. That our boy may not get any better, but worsen. If we were in the hospital there is still hope he will get better. 
Now that we are home, it is stressful. We are constantly assessing and analyzing his every move. We are watching, we are doing damage control and trying to keep it together knowing his situation is black or white. 
We wait and he gets better over time or we wait and he gets worse. 
At this time all we can do is manage his symptoms. Even his surgery was not intended as disease control, but rather to relieve his symptoms. It was devastating to hear his surgery was unsuccessful. All it meant was that the very sick boy we took to emergency was going to come home the same very sick boy. 
I pray every day for a miracle. I tell myself every day to hold on to every moment with my precious boy and to live only one day at a time. My motto now is to live for the now, stay in the present and remember to laugh, live, love and to let myself feel everything that courses through my body as we endure this journey. 
We can do this together!

Comments

Post a Comment

Popular posts from this blog

The aftermath is MESSY

We are on the road to recovery!  Physically, Xavier is improving daily with his regular physio and pure determination only a child possesses. He is learning to walk again and use his left side, all while building back the muscle he lost.  He has at least another month of treatment left, but we are so fortunate we can manage it at home and at a dose that causes fewer side effects than he faced last month.  Xavier is determined and I admire that in children. The lack of self-pity in kids we have seen  on his cancer ward are so inspiring. Instead they use that energy to heal, and set goals for recovery.   Still there are residual symptoms that are concerning. He is choking on liquids more frequently, suffering from reflux and is unable to move his toes on his left foot. Seems minor but as he tries to walk now his toes curl under his foot and trip him. Who knew how important straightening your toes are!  But the lingering side effect of treatment ...
2 comments
Read more
Ever since I learned how to write, I have been writing. I am not a professional, nor do I pretend to be. I am not an English major or a published author. I wrote the news for years (almost 10 if you count my years at my college newspaper). But the benefit of writing for me is not for money; it's for pleasure. Writing makes me feel good. Since I was 10 years old I kept a diary. I wrote down my thoughts, my daily activities and everything in between. It was my stress relief - how I figured shit out. I can trace every low point in my life to a time when I stopped writing for pleasure. Pen to a paper, fingers to a keyboard, I have to write. My sanity depends on it. So, here I go. I intend on writing about my life, about stories I have swirling around in my head. And maybe share some excerpts from my diaries as a child. If no one reads this, that's fine. It's not for anyone else but me. But if they do, that's ok too. If I can bring a tear, a laugh or a smile to someone e...
2 comments
Read more

I haven't stopped loving you

I haven’t stopped loving you A letter to my son in heaven on the third anniversary of his death Photo by Mark Garrett/Creative Works Photography Dear Xavier,  I have noticed you don’t visit me as often anymore and I miss your surprise appearances in my dreams. Your sweet little voice I used to hear in my head is now just a whisper I can only hear when I really try to listen.  But, I haven’t stopped loving you.  Days go by and I don’t long for you like I used to. I set the table for three without a second thought. Your presence at the kitchen table feels like a lifetime ago - almost hard to believe it was even real.  But, I haven’t stopped loving you.   We put away some more of your things and rearranged the room we had made for you. Mackenzie now plays there beside a cabinet full of all of your Star Wars characters. There are fewer pictures of just you around the house and a few more of us as a family.  But, I haven’t stop...
1 comment
Read more