Updates on Evan

Waiting on God's miracle.

Posted by: Myra
Date: February 27th, 2010

After two lengthy conversations last week with a pediatric oncologist at Comer Children’s Hospital in Chicago it became clear the treatment options available to Evan we’re not what we had hoped for. Neither were curative, and the risks far outweighed the benefits. We are so grateful for the amount of time this doctor spent with us (and for us) evaluating and talking with a number of other doctors on behalf of Evan. He was truly empathetic and responsive to our needs. This particular doctor was part of the team that helped develop the initial 52-week protocol Evan received, so he has a great understanding of rhabdomyosarcoma. As much as anyone can understand it, I suppose.

At the end of last week, our ped/onc here put us in touch with St. Louis Children’s Hospital to discuss a Phase I treatment option which includes the use of an angiogenesis inhibitor. Angiogenesis inhibitors slow down the growth of cancer by blocking the formation of new blood vessels. We’ve been in contact with St. Louis and are awaiting confirmation on an appointment for this coming week. Evan couldn’t start any new chemo until March 1st because most trials require that you be off any previous therapy for three weeks.

Tuesday of this past week marked a turning point with Evan’s pain. Up until then he had still been feeling pretty good. However, that evening he complained of extreme head, cheek and jaw pain. He also complained of fuzzy patches in his right eye (these are called floaters caused by pressure on the optic nerve). Since then he has suffered tremendously. It’s been a matter of trying to stay ahead of the pain with the right amount of medication. It hurts us so badly to see him suffer.

There is no medicine like hope
No incentive so great
And no tonic so powerful
As the expectation
Of something better tomorrow.
– Orison Swett Marden


Down, but not out.

Posted by: Myra
Date: February 20th, 2010

I’m sorry the posts have been fewer and farther in-between lately. It just gets harder to share setbacks and disappointments. The news regarding Evan’s latest MRI was not what we hoped for. After further evaluation the tumor appears to have grown since the scan done on 12/31, which means the new chemo is not working.

Evan has had most of the Phase III and Phase II drugs that are the first line of treatment for rhabdo. And unfortunately, the doctors here are not authorized to use Phase I (experimental) therapies like the bigger institutions. So, we’ll be heading to the Univ. of Chicago next. Why didn’t we go there in the first place? Because with the original diagnosis they would have followed the exact same protocol Evan received here. It doesn’t matter if you’re in New York, Colorado, Michigan or Texas -- they all follow the same protocol for newly diagnosed rhabdo. In some cases we know of, patients actually received fewer drugs than Evan did. However, it all changes when a patient relapses. Then the treatments begin to vary and that’s why we sought out surgery. And, why we’ll now need to travel to find other treatment options.

We’ve already been in contact with a doctor in Chicago, so our specific prayer is for the evaluation process to move quickly and smoothly.

We are forever grateful for your continued prayers and support. Thanks also to the many rhabdo/cancer families that have shared their positive stories and words of encouragement.

With love and hope,
Myra, Jeff and Evan


What we know.

Posted by: Myra
Date: February 11th, 2010

First, I just want to say how awesome Evan is with having an MRI. He used to need anesthesia to have the procedure and now he walks right in, jokes with the technician, docks his ipod and takes a nap. It’s so much better than be anesthetized each time.

There are pros and cons of dealing with larger institutions such as the hospital in Pittsburgh. One of the cons has been trying to get Evan’s scans from December 31 sent to our doctor’s office. It’s been frustrating as hell, actually. After being told by Pittsburgh that we would for sure have the scans by today, we still don’t. They’ve now told us (again) that they will be overnighted and we’ll have them tomorrow. Why they can’t send them electronically is beyond me. If we would have been in our right minds while we were there we never would have left without a copy of the scans on disk.

After today’s procedure, Evan’s doctor went and met with the radiologist to hear his report. Then he came back and met with us. He pulled the scans up on the computer so we could see them. The tumor is still there and it’s still big, however there’s necrosis (dead tissue) in the center. We honestly don’t know if this is good or bad at this point, until the doctor’s here can review the 12/31 scans and make some comparisons. The tumor appears to be stable. And, we like the word ‘stable.’

If the 12/31 scans arrive tomorrow, we will know more about today’s findings after our doctor and the radiologist have a chance to review them.

The plan for now is to take a break from chemo next week and start again on 2/23. Another scan will be done in three weeks. The site on his stomach where the g-tube once was has been causing him some trouble as of late. Likely due to the chemo. He many need to have the area surgically closed (we thought it was healed).

Just looking at Evan – overall he looks good. He takes nutritional supplements every day. His diet is super healthy. He’s greatly reduced the amount of his sugar intake (sugar feeds cancer). He’s still eating well. And, there are hundreds of people praying for him. So, we remain positive.


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