Updates on Evan

Plan B.

Posted by: Myra
Date: April 29th, 2010

So, it turns out the Seneca Valley Virus is not the route God wanted us to go.

The MRI showed the tumor has now spread into Evan’s brain. No matter how many times we huddle around a computer monitor to look at scans of Evan’s beautiful head I can’t help but cry. This just can’t be happening. It just shouldn’t be.

In the same breath that Dr. Goldman told us we weren’t eligible for the SVV trial because of the intracranial spread, he reassured Evan that there were still other options. Namely the original virus trial in Cincinnati that led us to Chicago in the first place. Plus, another trial that’s shown some promise and 4-drug cocktail. After spending hour upon hour with us, Dr. Goldman has figured out how important it is for Evan to hear the word “options.” Seeking out additional things to try is being driven by Evan’s specific request to us. He has an incredibly strong mind and will.

Once again we have some big decisions to make with no time to spare. We’re putting our trust in God that we make the right one.

 

Results on Wednesday.

Posted by: Myra
Date: April 27th, 2010

Just a short note to let you know that we're still in Chicago and we'll be meeting with the doctor tomorrow to hear the results of the MRI, etc.

A few people have inquired about reprinting "New Shoes" -- Cindy said she wouldn't mind as long as it's noted that it was written in dedication to Evan Hoffman.

With continued love and hope.

 

A difficult path.

Posted by: Myra
Date: April 24th, 2010

The following composition was written by Evan's aunt (Jeff's sister). She began writing it shortly after Evan was diagnosed and recently shared it with us. With her permission, I'd like to share it with you.


My New Shoes
by Cindy Seda

I know of children without any shoes and I am jealous. I have seen old, tattered shoes and wish they were mine. I have new shoes, but I do not like them. They are ugly shoes. Every day I wish I didn’t have these new shoes.

But, these are the shoes I was given to wear, so I do.

My shoes are uncomfortable and cause me great pain. My shoes keep me from school and church. My shoes aren’t fit for karate or basketball or baseball.
My shoes are sometimes so painful that I cannot ride my bike or walk my dog.

But, these are the shoes I was given to wear, so I do.

Sometimes people stare at my shoes and I know they're thankful that they aren't their shoes. People don’t talk about my shoes because it makes them sad to know that their shoes are more comfortable. I have learned that I am not the only one who doesn’t want the shoes they have been given. Some people have had the same pair of shoes for so long that they don’t even notice the pain anymore.

But, these are the shoes I was given to wear, so I do.

I wake up every morning wishing that I could wear my old shoes, but I can’t. My family prays every day for another pair of shoes for me. My friends have prayed that I will get a different pair of shoes. My mom and dad want so badly to wear my shoes for me, but they can’t.

Because, these are the shoes I was given to wear, so I do.

My shoes sometimes lead me down a path that frightens me. But my family and friends continue to walk beside me. And because of their great love for me, they share my pain, and encourage me to continue walking in these horrible shoes. And when I feel like I can’t take another step, their prayers and kindness lift me up and carry me. My shoes are not as painful then; but they cannot carry me forever.

Because, these are the shoes I was given to wear, so I do.

My shoes have traveled millions of miles around the world, to places that I have never been. My shoes have connected me with thousands of people that I have never met. My shoes have seen people of all religions, praying to different Gods, in churches I’ve never been to. My shoes have shown me a side of people that I have always hoped was there.

These are the shoes I was given to wear, so I do.

My shoes have made me stronger, in ways that some will never know. My shoes have deepened my faith, in ways that most will never understand. My shoes have made me determined to walk down the path ahead of me. My shoes have taught me patience, because I know the journey is long.

These are the shoes I was given to wear, so I do.

I walk in my new shoes with respect for the children who wore their new shoes before me, because they have helped to make a path for me. I walk in my new shoes with empathy for the children who will follow behind me in their new shoes, because I have felt their pain. I walk in my new shoes with confidence, because my family and friends walk beside me. I walk in my new shoes with warmth in my heart, strength in my mind, and determination in my soul; no matter how much pain in my body.

Do you wonder why I continue to walk in such painful shoes? Do you wonder why I keep these ugly shoes? Your wonder can only come from someone who has never walked in shoes like mine. I, too, do not understand why these shoes were given to me.

But these were the shoes I was given to wear, as I walk down the path of childhood cancer.

 

1 | 2 | 3 | NEXT