ANA Discussion Forum
AN Community => AN Community => Topic started by: free2be on August 23, 2010, 07:28:24 pm
-
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
-
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 (http://www.neuroendoscopy.info/contactUs.asp)
Laz
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
I am so very sorry to hear this is happening to Wylie. He and his family are in my prayers.
Sara
-
This is so.......sad.
We will keep little Wylie, and his family in our thoughts and prayers.
Rich & Scarlett
-
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
-
My thoughts and prayers are with him and his family........
Pat
-
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/ (http://www.wylieswish.blogspot.com/)
(http://)
Blessings,
Connie
-
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/ (http://www.wylieswish.blogspot.com/)
Connie
-
Little Wylie has had his share of difficulties. I'm not sure if the additional problems he is having now are from the tumors (yes, there are two they've discovered) or from the biopsy/surgery. He's having trouble with one arm, both eyes, some breathing issues because of trouble swallowing and more. He's having a lot of neck pain, apparently they went into his brainstem via the 1st cervical vertebrae. Ouch!
He is a heck of a brave caring young man. He consoled his younger brother the other night. During his own pain, when Wylie's' oxygen alarm went off and scared his brother, he held his brother's hand and assured Seth that he was okay.
Wylie still needs lots of prayers and more posts to his blog would be great.
http://www.wylieswish.blogspot.com/ (http://www.wylieswish.blogspot.com/)
At the end of posting a "Comment," you can just choose "Name" and put your first name in. You do not have to have a Google ID. It is a little deceiving if you don't scroll down a little further on the post comment page.
Connie
-
Many thoughts and prayers for Wylie and his family. Cannot imagine the stress level .....
Clarice
-
Donnalynn,
Thank you. I will ask what he might like. I know some of what he is into, but a lot of it is computer related and games that right now are difficult with his vision issues. I'm sure there's something he'd find cool from Alberta area. News on his blog indicates he was standing a while today and played a board game for a short time. We are still waiting on full pathology report; it was supposed to be in and a meeting with the family today at 3:00 EST. Missed that by over 4 hours now!
Clarice,
I can't imagine the stress on the family either. I know his Mom is strong, but no one is this strong. Heck, it is terribly stressful on me and I'm just a friend (and not even THAT close a one). I'm sure it hits me harder because of my Mom's deadly brain tumor and my own AN. All this further throws my Addison's for a loop and makes me less resilient. I wish I could do more, but getting prayers and blog comments going seems to be my role right now.
I'll post more when I know more.
Keep praying and posting...
http://www.wylieswish.blogspot.com/ (http://www.wylieswish.blogspot.com/)
Connie
-
Connie,
You are a great and supportive friend and thanks so much for keeping us posted. I'll keep an eye on the blog (can't post to it from work) but I will send him and the family my well wishes.
Thanks again,
Liz
-
Wylie got to go home today. He was only out of ICU 24-36 hours, but he was doing well enough they wanted him to go home and recovery from the surgery/biopsy. We spoke to him briefly. Poor guy can't control his throat muscles so liquid accumulates and his right arm...well...he can move it, but that's about all...no real control. I'm not sure how his eyes are right now. We are still waiting on full biopsy pathology... He'll need to heal for 4 weeks before they do any further treatment during which time his Naturopath will be attempting some natural healing at least to strengthen him for what may have to come in 4 weeks.
Keep praying,
Connie
-
Update on little Wylie:
We have the pathology, though what the doctor is telling the family is rather confusing. The pathology indicates a fast growing "infiltrating astrocytoma"; it is in the glioma family. They are saying due to the fast growth it is acting like cancer, but they don't know that for sure. From trying to research it, it seems that the infiltrating indicates a Grade II, but the infiltrating part is like a web going into the tissues of his brain stem. In fact, it seems that in doing the biopsy and trying to debulk it a little they removed some normal brain cells! Treatment options are not good, prognosis is not good. I'm trying to help research possible alternative therapies that show signs of working on this type of cancer in a child, but...well, I'm not finding much. They say there are trials that are showing promise or getting them closer, but it'll be another 10 years before new treatments are available. That won't help Wylie without a miracle. He is being a very strong little boy despite this very sudden radical change in his life. He has little control of his right arm, his right leg is not working real well, still having swallowing issues and eye issues.
If anyone knows of alternative somewhat proven treatments please let me know. They have him starting on lots of nutritional dietary items and are looking at more of those. I don't know if there's enough time however.
More prayers are needed.
Connie
-
Connie -
am still praying for Wylie and his family.
Someone, I think it might have been Lori, suggested St. Jude's. Has Wylie's family contacted them? They are at the forefront of medical issues like this.
Jan
-
Jan,
We have contacted St. Jude and can send the records etc. to them for a consult free of charge. The family has not decided yet to seek other traditional medical opinions, as they all seem to be bleak. But, I am researching and trying to suggest that they do so at some point...soon.
Thanks,
Connie
-
Soon is the key.....the sooner the better!
-
Just a quick update. Wylie is in good spirits. His symptoms exacerbated last week, he failed his swallowing test as he was aspirating and choking some. He now has a feeding tube, actually a larger one was put in this week because he wasn't getting enough through the tiny one they put in last week. His right arm is not really working, he's unstable on his legs, but determined to get around on his own as much as possible. He's got significant eye problems, but seems to be able to do some reading still. He is a brave determined little boy. They had to start photon radiation this week in order to try to slow down this [explative] tumor. This will be 5 days a week for 6 weeks (90 miles away!). He is on some alternative treatments in hopes it will further arrest the tumor: Boswellic Acid, Protoletic Enzymes, B vitamins, and I'm not sure what else. The radiation alone does not have a good long-term track record with this type of tumor. What else can I say except he is positive, told his mom he "has a good feeling." Please continue prayers for this special little boy.
Donations for the family can be done through his blog, as well as posts to him.
http://www.wylieswish.blogspot.com/ (http://www.wylieswish.blogspot.com/)
Connie
-
I do have news about Wylie. He is doing much better than expected.
He had a very bad day last week with pain and shooting nerve pain and problems with his other side. He was discouraged and it was difficult for everyone, but he was better the next day. He is now doing much better. He has some grip in his bad hand, is trying to go to school at least part days, he has gained weight back after they took out the feeding tube as he's eating on his own, AND today they got the results of the MRI done last week. To the doctor's confusion and bewilderment, the tumor has not only NOT grown, it is not swelling (which it normally would from the intense radiation he is having), and it "may have even shrunk a little." They were shocked he was doing so well; said he should be having more issues because of this fast growing aggressive tumor and swelling from the radiation, etc. etc. They didn't know why he was doing so well!
So, thanks be to God, prayer, and I'll add Boswellia and other natural components that he has been on (some of which I am also taking, now post-radiation myself). I think there is something to be said for the anti inflammatory properties of the Boswellia and other things I'm taking (Omegas, etc.). I hope they continue to work for both of us, but I am SO happy and cautiously optimistic about Wylie's surprising progress.
Connie
-
I love the bewilderment of doing well through prayer. Thanks for keeping us updated and I pray he continues to do well!
-
Such happy news for Wylie!
I just love it when doctors are mystified when patients are doing better than they should be. The POP (power of prayer) and also the other supplements are working!
Maureen
-
That is wonderful news about Wylie! Further proof prayer does work!
My sister-in-law died 23 years ago from brain cancer. Her husband is a medical doctor. At the time, he (curiously) told us that aggressive cancers usually respond the best to treatment.
Whatever the reason for Wylie's improvement, we rejoice with Wylie, you, and the family!
Prayers continue. Clarice
-
Connie ~
Thanks for that heartening update on young Wylie! We're all free to choose our individual reasons for the boy's recovery but, like others, I believe in the power of prayer and will continue to offer mine for Wylie as well as prayers of thanks for his comeback.
Jim
-
Great news, I bet he's thrilled to be going to school! I'll keep on praying for him, POP :D
Liz
-
One other tidbit on Wylie. The second doctor on the team went over the MRI with Wylie's Mom. The doctor just kept saying, "look at that, look at this." One big item, that explains part of Wylie's obvious physical improvements, one nerve (or nerve canal, I don't remember the physiology specifics) was compressed by the tumor to the size of a pencil and is now opened back up to the size of a quarter. Amazing. We are so grateful and hopeful that this extraordinary improvement continues. It's scary, statistics are against it, but he has had some improvement both in function and on the MRI. We went to a benefit for him on Saturday and he is walking so well (he was with a walker or worse for a little while) and he has a grip in his hand again...it's just a miracle. Pray for continued miracles.
Connie
-
Connie,
That is such great news about Wylie! Will keep praying for more improvement and miracles. They happen!
Maureen
-
Happy for Wylie and his improvement ... will keep him on my "rock list "