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!

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The Book of Me

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