Special prayer request

[free2be]

This is off topic, but for my AN rad friends...a request. A dear friend of ours, a 9-year-old adorable, smart, artistic, smart little boy, was just diagnosed with a brain stem brain tumor. He only just started having symptoms, but we just found out it is taking up 85% of the brain stem (no I don't know how that is possible, but that's what I've been told) and is inoperable. Chemo was the only treatment that's been offered and apparently it is not usually effective. I don't know the type of tumor (biopsy is tomorrow). If anyone knows where might specialize in child brain stem tumors...it doesn't sound like the family is being offered much.

In the mean time, prayers, well wishes, miracles, anything would be appreciated. His name is Wylie.

Connie

[Larry]

Hi Connie,

This is so sad. I feel for the family and friends. When this happens at all, its not fair but for a kid - words fail me apart from wishing for a miracle.

There is a surgeon in Sydney - Dr Charles Teo at the prince of Wales Hospital in Sydney - details below, who is the only surgeon who will do "last gasp" surgery. He mainly deals with the brain. he is hailed as one of, if not the best surgeon in the country. You could always call him - not a lot to lose i guess.

http://www.neuroendoscopy.info/contactUs.asp

Laz

[iluuvpups]

I'm so sorry to hear about this.  Makes me very sad.  I will say a prayer.

Here are a few resources that others sent to me that may help:

http://www.braintumor.org/
http://www.dailystrength.org/c/Brain-CNS-Tumors/support-group
http://www.abta.org/

--Carol Ann

[leapyrtwins]

So sorry to hear this.  Prayers go out to Wylie and his family.

Children's Memorial Hospital in Chicago has a very well-known brain tumor treatment center.

Jan

[free2be]

They believe it is a diffuse intrinsic pontine glioma. It seems they are doing a biopsy tomorrow, but from my research that isn't usually necessary or recommended; so, I'm concerned about that. But this is BAD if that's what it is. Definitely need to find the cutting edge docs on this if they can offer any hope. I'm still praying, but my heart is broken.

Connie

[Lizard]

Connie,
I'm so sorry to hear about your friends son.  Although I do not know any Dr's who specialize in children's brain tumors I can only say if they are not happy with the Dr or Dr's they are currently seeing they should find another and quickly. 
I'll be saying my prayers.
Hang in there,
Liz

[lori67]

Lots or prayers for that poor little boy and his family.  I can't imagine going through something like that.

In my opinion, the first place I'd be headed if he was my child would be to St. Jude in Memphis.  They do share all their research and findings with other hospitals, so any of the larger children's hospitals would be able to offer him excellent treatment, I'm sure.

I pray that his family stays strong to help him through this struggle.

Keep us posted.
Lori

[grega]

Connie,

Wylie and his family are in my prayers.  

Here are a couple links that might help in your, and the family's, search:
Johns Hopkins:   http://www.hopkinschildrens.org/index.aspx
World-renowned Ben Carson at Hopkins specializes in pediatric surgery:  http://www.youtube.com/watch?v=IuYmhJUeoBE

Suggstion to Wylie's family ..... ask the local docs to tell them where they should seek treatment.  Hopefully they will get answers they so desparately need.

Greg

[Jim Scott]

Connie ~

This is heartrending but of course little Wylie will be in my prayers.  I will pray for his parents too and that they'll be led to the right doctor to save their son's life, which appears to be in jeopardy. 

Thanks for posting this.  I've moved the thread to the AN community forum where it's more appropriate - and is likely to be seen by more people.

Jim

[saralynn143]

I am so very sorry to hear this is happening to Wylie. He and his family are in my prayers.

Sara

[Rich56]

This is so.......sad.

We will keep little Wylie, and his family in our thoughts and prayers.

Rich & Scarlett

[Soundy]

This is so sad ... will keep him and his family in thoughts and prayers ...rock in hand as always

wanted to add  that as Lori said St Jude's does wonders with so many children with cancer ...something a friend and her family found out when her nephew was diagnosed with a malignant brain tumor about a year and a half ago

[pjb]

My thoughts and prayers are with him and his family........

Pat

[free2be]

Thanks for the replies and prayers. Please keep them coming. Here is an update and a web site to visit him and send him notes. He would love getting some messages from other parts of the country and world. Tell him where you're from. That would be great!

Wylie had surgery/biopsy today and is in recovery and ICU tonight. He has two tumors; one seems to be calcified. They were able to remove about 30% of the other (active) tumor. They will have pathology back on the biopsy on Friday or Monday and know more then what they are dealing with for sure and what options may be available.
 
Please visit Wylie's Wish page below to learn more, keep informed, see pictures of this adorable boy, and learn how you can help. He needs all our prayers.
 
http://www.wylieswish.blogspot.com/


Blessings,
Connie

[free2be]

Thank you Donnalynn for posting to Wylie's blog. That was very nice and heartwarming and cool!! I think he'll be excited to get messages from around the country and the world. Keep on blogging and praying. Updates on his condition will be posted to his blog as often as possible.

http://www.wylieswish.blogspot.com/

Connie