One patient with glioblastoma still alive nine years later
by gigisbaby on Mon Jul 12, 2010 09:17 PM
Rare - that's the first word I remember when being told that our 6 yr old had this awful "thing" in his head. Untreatable was the next and most devasting word to invade my world. The Drs have told us that this is the most invasive and aggressive tumor they have seen. Our "baby" was diagnosed on the 14th of June, 2010 and has had three surgeries in three weeks to relieve pressure that is building up and causing him so much pain and suffering. He now has two shunts (which he calls his straws) draining the fluid. The Drs have given us no hope. They will start radiation therapy but only as a measure to try and extend his life expectancy. The oncologist told us what we need is a MIRACLE.
So, that is the very thing I am looking for... if anyone has had any experience with something that has or might work - please help us by passing along the information. We are desperate for answers.
And, I am so sorry for any of you that do understand where we are coming from - It's unthinkable and not a fraternity that any of us joined voluntarily.
by mominoh on Mon Jul 12, 2010 10:07 PM
My 64 year old father is fighting GBM and I have a 6 year old daughter when I read your post it made me wonder for one second what it would be like if she was the one suffering. Dont even want to think about that... wow. I am so very sorry. This is so unfair that a child would get this brutal cancer.
As far as treatment, you said he had 3 surgeries, did he have any to try to remove the tumor? Can it be removed?
With adults there are 2 common medications, oral chemo named Temador, I did see some studies that say in dose under 200 is ok for kids, but other doctors disagree.
The other medication is an infusion named Avastin, I know in 2008 they did a study to see if its ok for children but I dont recall ever seeing the results.
Maybe bring them up to his doctor and see what they think. Also because this cancer is rare, and super rare in children I would get 2 or even 3 opinions.
Try to contact Duke in North Carolina they are leading experts in brain tumors and have many trials.
by I_love_Gary on Mon Jul 12, 2010 11:34 PM
I could not be more sorry. Nothing is as awful as seeing a child suffer. I cannot even begin to imagine your daily fear, it is too sad. Well, if we all here can send our best and most positive wishes to you, it would be for the miracle that you want, and if not, then for peace in your home and heart.
I don't know how they go about treating a child with this tumour, and I think it IS very rare for a child to have it. I hope someone knows a lot more about it. Stay with us for all our support. Maybe a site that is directed at children's brain cancer would have more info and even more understanding?
Hoping in buckets, and pouring them on your desired miracle! DL
by luckywife on Tue Jul 13, 2010 12:12 AM
I am so sorry to hear about your son. It is rare, indeed, for a child to have gbm iv but that is no consolation when it is your own child that has this dreadful disease. Have you sought out a second opinion? Are you with a pediatric brain tumor center? I am not sure where you live but I think it would be wise to get his scans to other doctors to get their opinions. I know that Duke has a wonderful pediatric department.
Wishing you good luck as you try to find some comfort for your son and keep him with you for a long time!
by CarmensWife on Tue Jul 13, 2010 12:44 AM
I dont even know what to say besides the obvious, I am so deeply deeply sorry, my heart is aching for you. I wish I had something great and wonderful and hopeful to say to you. I will keep your family in my thoughts and prayers every single day.
Please try to stay with us, we will hold your hand and walk beside you every step of the way, there is someone here almost all the time. Is your child at home at this time or in the hospital? what state do you live in? Please keep us updated, im sure your mind is whizzing all over the place right now again, i am so very sorry. Linda
by susannat on Tue Jul 13, 2010 01:22 PM
Its very sad to hear about children with brain tumors. I'm very sorry.
My partner died a year ago of a brain stem GBM. She was 52 years old. Doctors gave us 3 to 6 months with treatment. She had 2 1/2 pretty good years.
I think there are 2 things one should always do: Get as many second opinions as you can and look into clinical trials. Support groups are also a great source of information. For children, please check:
Here are some institutions you might want to consider:
NCI Chilhood Cancers
Brain Tumor Centers: http://www.braintumor.org/CenterFind.aspx?p_PageAlias=Center
Cancer Centers: http://cancercenters.cancer.gov/cancer_centers/cancer-center
Duke University Robert Tisch Brain Tumor Center: http://cancer.duke.edu/btc/
MD Anderson: http://www.mdanderson.org/
University of California: http://www.ucla.edu/
Remote Second Opinion Johns Hopkins: http://www.jhintl.net/forpatients/page.aspx?id=80
Sylvester Comprehensive Cancer Center - Neurology: http://www.sylvester.org/about/index.asp
- Cedars-Sinai in LA http://www.cedars-sinai.edu/1088.html
In my personal opinion, Dr Friedman at Duke University and Dr Keith Black at Cedar Sinai in LA are the best way to start. Both got back to us in a very short time.
You might also contact the makers or TEMODAR & AVASTIN to see if they can give you information regarding clinical trials with those medications for children. (temodar.com and avastin.com ). Also, here are other links for clinical trials:
Please do not hesitate to contact me if you have any questions.
Wishing you all the best,
About Gliomas, from the American Brain Tumor Association (ABTA):http://www.abta.org/index.cfm?contentid=230
Caregivers Guide, ABTA: http://www.abta.org/index.cfm?contentid=201&itemtype=2
National Brain Tumor Assoc: http://www.braintumor.org/TumorsSublanding/
Accelerate Brain Cancer Cure (ABC2): http://www.abc2.org/
About Brain tumors: http://nci.nih.gov/cancertopics/types/brain
Musella Foundation Info:http://www.virtualtrials.com/index.cfm
Ben Williams Guide: http://virtualtrials.com/pdf/williams2007.pdf " target="_blank" rel="nofollow">http://virtualtrials.com/pdf/williams2007.pdf
Central Brain Tumor Registry: http://cbtrus.org/
Musella Foundation Caregiver Guide: http://virtualtrials.com/pdf/schubart.pdf
Musella Foundation Patient Guide: http://www.virtualtrials.com/faq/
For an excellent list of other resources, go to the Florida Brain Tumor Association (FBTA), at: http://www.fbta.info/site/resources.htm
by gigisbaby on Tue Jul 13, 2010 02:24 PM
Thank you all for your kind words - Right now we are in shock and disbelief - It is so upsetting just to write the name of that monster and see it in print. I don't want it to have a voice that makes it even more real. Just to give clarification - Alex is my grandson, but all his life - it's just been him, his mother and me.
We live in Texas and Alex is receiving care at Texas Children's Hospital in conjunction with The Methodist Hospital and M.D. Anderson Cancer Center. The Drs (of which there are many) have said this tumor in children does not respond to chemotherapy type drugs.
I also believe they are stymied because it is so big and growing so fast. The first surgery was to obtain a piece of it for pathology. They went through the right temporal lobe and what they thought was swelling - actually was part of the tumor - so they were able to take out some of what was on the right side. The goal was to relieve some pressure, but in less than a week - they did the second surgery to insert a shunt on the right side to drain fluid. He did not get much relief - so they did another MRI. It showed that in that short time the tumor had grown over to the left as well - so they went in and put a shunt on the left side.
They had him scheduled to do radiation, but he has not been stable enough to begin. He is still in the hospital. Hopefully - this last procedure will allow him the relief he needs so badly. We have a conference scheduled to discuss whether radiation would actually be a benefit or not at this time.
Right now he is living on antibiotics, steroids, anti-seizure and morphine. I know he is not stable enough to move to another medical setting - but I will contact Duke and see if they could review medical records and give us an opinion from a distance. I will also ask about the meds mentioned and see what they think....
You see - his GiGi has always been able to fix whatever went wrong in his little world and now I find myself so angry not to be able to make this thing just go away. It just feels so wrong on every level.
I cannot imagine how everyone else is coping with this thing, but (GOD help me) I do share your pain. I, too am sorry that you have this in your life.
Please GOD, grant us all a MIRACLE of healing!
by heart_and_soul on Tue Jul 13, 2010 02:36 PM
I am brought to my knees, again. I am so sorry that anyone, especially a child, has to endure this pain and fear and grief, and that you who would do absolutely anything are so desperately on the sidelines. Having been through this as a mother I can only say you do your best, and you keep in touch with your support system of friends and family, and don't hesitate to take whatever help is offered. You keep up hope but you don't waste precious minutes chasing after the impossible. Top priority: loving that kid. Talking about his favorite things, saying how much you love him, and thanking him for everything he has done to make you so happy. And when the time comes, saying it is ok to let go. And sobbing.
Damn. I'm at work and I think I have to go home. Life is too hard sometimes.
Peace and mercy.
by debz3j on Tue Jul 13, 2010 03:43 PM
I am a "nana" also and I cried (I'm at work right now) when I read your post. I could not imagine my grandsons having this terrible disease. It is hard enough watching my hubby go through this as it is let alone a child. Prayers are coming your way from so many people.
by mominoh on Tue Jul 13, 2010 03:53 PM
My heart is breaking. Poor little boy.
Another idea I had is to contact make a wish foundation. I know he cant go anywhere but maybe they can bring someone special to him. At times a bit of fun helps ease your mind even if for a few seconds. So while his Gigi cant fix this horriable thing that has happen, she can arrange for something super fun to be done for him.
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