Updates on Evan

Update

Posted by: Myra
Date: June 29th, 2008

Hello all,
Evan was able to go more than 24 hours without morphine, so we are happy to say they discharged us from the hospital this a.m. and we’re now home. Thank God for small miracles. We should be able to keep Evan comfortable at home with his other pain meds.

Of course, we’ll be back tomorrow and every day thereafter for at least the next five weeks for outpatient radiation and chemo treatments. They will do another MRI at the end of 5-6 weeks to determine the effect the medicines are having on the tumor.

As of right now we’ve been told to expect 52 weeks of treatments. It’s going to be a long hard road, but one we’re willing travel to help our boy get better. Make no mistake, we are not settling for anything less than a cure.

We cannot say enough good things about the care Evan has received at St. John’s Children’s Hospital. The doctors, residents, nurses, techs, child-life specialists, etc. have all been outstanding.

The love and support we have received from our family, friends, co-workers, school, clergy and others made us not feel so alone during this time of crisis. May God richly bless each and every one of you.

We will continue this CarePage and post updates on Evan’s condition when we have some news to share. Don’t be concerned when you don’t hear from us – no news will probably be good news for a while. Feel free to post messages, and we’ll continue to read those.

Evan told Dr. Brandt yesterday that he used to want to be an architect, but now he's leaning toward becoming a doctor – so he too can inflict pain on others. (The doctor had a good chuckle over that one.)

Thank you all so much for your prayers, good thoughts, advice and love. We will keep you posted.

Myra, Jeff and Evan

 

Update

Posted by: Myra
Date: June 28th, 2008

We always thought our kid was one in a million (most parents do). We just never dreamed he would be 1 of 4 in a million. That’s the statistic of kids who develop Rhabdomyosarcoma. 4 in a million, can you believe it?

We’ve done our due diligence and read everything we can on this disease. We are lucky to have one of the best pediatric oncologists in the nation right here in Springfield. Dr. Brandt and his team are taking excellent care of Evan. They are following the very latest protocols and using state-of-the-art techniques in his radiation treatments.

Evan is resting comfortably tonight following his 5th round of chemo. We had a visit tonight by Father Bob (Evan’s pastor at St. Agnes) and we prayed to the patron saint of bowel movements to make an appearance. Jeff’s co-worker Carol dropped off a small bottle of authentic holy water straight from Lourdes, France (see St. Bernadette) and Father used that to bless Evan.

Most of our co-workers are aware of this story, but since early April there has been a bird at our house pecking on Evan’s bedroom window. Every day from sunrise to sundown constant pecking. We tried everything to get rid of it. I climbed outside on the ledge of his window and hung fake owls, and a Spiderman kite. I pasted his windows with brown paper. Jeff hung glittery ribbon across the window (nearly breaking his neck on an extension ladder outside the house). And yes, we tried to shoot it with a bb gun, to no avail. Now, in hindsight, we think this bird was an omen. We think it was trying to tell us something was wrong with Evan. Crazy thoughts of despondent parents, maybe. Or perhaps his guardian angel took the shape of a bird to let us know Evan needed help, if so, we’re sorry we shot at it.

 

Update

Posted by: Myra
Date: June 27th, 2008

Thanks to everyone for their continued well wishes. Your messages are wonderful. Evan enjoyed a brief visit from his classmate Sam T. today (he was sorry he was resting when Charlie C. stopped by). He pointed out his PICC line to Sam first thing like he was showing off a new video game. Kids are so resilient it's unbelievable.

Another round of chemotherapy tonight...the "Best of Will Ferrell and Chris Farley" have helped to keep our chins up. (Good thinking Grandma Billie.)

By the way, we are receiving equal opportunity prayers from around the world... Lutherans, Baptists, Catholics, etc. and while technology is a wonderful thing, we believe faith is equally important (and if we thought it would help, Jeff would fly in a Voodoo Queen from New Orleans...I guess it's equally scary that he knows one.)

 

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