Tuesday, April 22, 2008

Brewskies

Charlie King is a good friend of Travis. Charlie is at our house a lot, and was instrumental in helping to create the recent Dodge ball event for Tyler. He and his Dad are in a band called The Navigators. They do a great job, and usually pack the place they are playing. All of their proceeds are donated.

This Saturday night they will be playing at Brewskies - at the corner of Reed and Henderson, starting at 8:00 - until 11:00. They play a wide variety of music and there is a dance floor. It is always A LOT of fun! The cover charge is $5.00. Half the proceeds will be going to the Tyler Alfriend Fund.

We have known the Kings for a while, but have never heard the band play. I am looking forward to it. Hope to see you there.

Tyler and I leave in about an hour for Texas. Please keep Tyler in your prayers. His ANC counts need to be maintained at a minimum of 1,000. Before leaving for Boston, they dropped to 350. The trip was not easy on him, and when we returned his ANC was at "0". Yesterday Tyler received three more transfusions in preparation for the trip, but his ANC is still at 0. He has no detectable ability to fight infections.

We discussed delaying the trip, but we really need the consultations with the doctors. Tyler has been having head and jaw pain, and his neck is one of the areas where the cancer had spread. We have requested new CT scans of the neck, but the oncologists at Children's have refused to do it. "Per protocol", the next scan will be done in two months. As with our entire experience, the attitude is that the individual does not matter. Protocol rules. I have contacted the James, but they will not treat anyone under 18.

I recall when Brett Workman began having neck pain. His mother was convinced it indicated a return of Burkitt's. I was there as she badgered the doctors at Children's to run scans to check the cancer. For three weeks they refused, stating protocol indicates that the cancer will not return at this time. Finally, after three weeks, they ran the scans. I was there when they told Brett's Mom that they were doing this to please her. Per protocol, they knew the test would be negative. But they were wrong. The cancer had returned and spread extensively. Despite the family's requests, nothing further was tried. The doctors gave up. Not because there were no options, but because there were no proven protocols. Brett and his mom continued to plead for more chemo treatments. No one would listen. Brett passed away three weeks later.

"We only have two options. Lay down and die or fight like hell".
--Lance Armstrong

9 comments:

Anonymous said...

Dear Kyle and Tyler,
Your words ring so true to my heart.I know you have to be an advocate for your child.There were times at Childrens when I felt like such a b**ch because I was fighting for my kid.Sometimes I figure they made sure Matt was in remission just to make sure I never would darken their doorway again!And I would do it again if I had to.I am praying for Tyler and your family.You are so lucky to have a Dad like you do Tyler(even if he huffs and puffs while he runs) but I am sure you know it.Take care
Susie and Matt Eichelberger
1 year Burkitts survivor!!!

Anonymous said...

Kyle,

Have you tried contacting St Jude's? From what I've heard they seem to do all they can for kids.

Keep fighting Tyler and Kyle!!

FIGHT TO WIN!!

~Cindy Duco

Dieta said...

Hello. This post is likeable, and your blog is very interesting, congratulations :-). I will add in my blogroll =). If possible gives a last there on my blog, it is about the Dieta, I hope you enjoy. The address is http://dieta-brasil.blogspot.com. A hug.

Telefone VoIP said...

Hello. This post is likeable, and your blog is very interesting, congratulations :-). I will add in my blogroll =). If possible gives a last there on my blog, it is about the Telefone VoIP, I hope you enjoy. The address is http://telefone-voip.blogspot.com. A hug.

deyerles said...

Dear Tyler,

We are praying very hard for you. We hope you recieve the answers you need from Andersons. Keep the faith and Fight to Win!

Hugs,
Debbie

Anonymous said...

I also have been wondering about your interest in ST. JUDE Hospital. Please know that everyone I know is praying for your whole family to have the strength and courage to keep moving forward. May God Bless you all...

Cathy Sankey said...

Dear Tyler,
We continue to think of you every day. We hope you get some good information in Texas. Sorry to hear about the neck pain and know that we love and support you. Take care. Our hopes and prayers are with you.
"Have hope. Though clouds environs now, and gladness hides her face in scorn, put thou the shadow from thy brow-- no night but hath its morn."-- von Schiller

Sondra Snodgrass said...

Tyler,

We miss you in Biology class. I even miss your "beat boxing"! :-) It was great to see you at Celebration of Excellence. 'Just wanted you to know that we are all thinking of you and miss you.

Fight to Win!
Mrs. S.

Anonymous said...

Hey Alfriend family.
Just wanted you to know that Im praying for you and for these trips. I hope they are willing to do for you, what childrens is not. I must admit, I am dissapointed in what they told you. surprised at that. Keep us posted on what they say.
Amy -J5RN