Diffuse Pontine Glioma

message: Hi Samantha, i am not a parent but my little grandaughter was hit with the same thing in January. While I was looking after her one day, I noticed she'd had a stroke, the next day an mri revealed this was caused by a tumour and we were sent to GOSH and then to UCLH, london for 6 wks of radiotherapy.

We have also put her on the trial chemo tablet temolozide and we've just been told she'll stay on it for a year (the norm) although she's on a 6 week break at the min. Her 1st follow up scan is in 2/3 weeks but we've been told it may not show much this time, she will have them regularly though. I can't imagine how you feel but my world has crumbled and i feel like i am living with a timebomb, her parents are both so positive (NOW) and won't hear a bad word said which is good for me.

we are enjoying her back to her usual self for now, with physio her arm and leg are almost back to normal, she is the most beautiful 3yr old on the planet it is just so wicked! I have good and bad days, days when i think she looks so well be positive! then days when i think i don't know how i can live with this and want to scream and tear the house down, but I pray for them all everyday! All the brave children i have met so far put me to shame, bless you all (and i am not religious) Do you have counselling and did it help? Sorry its all about me i am all consumed at the min. but thanks for listening Cheryll x

message: hi, my name is sharon, my son too was diagnosed with a dipg in sept 08, at the royal manchester childrens hospital, he was 15yrs, my son passed away on the 31stmarch,09 from this monster of a disease, at the moment nothing seems real to us, it all feels like some terrible dream, but i know deep down that it is not, I hope things are going ok for you, i really do,please let me know, as unfortunatly, i have walked the same road as you are, a really helpful website, is "I could be your child" it is dedicated to children with dipg, and I have found it so helpful, i have put my son on there "lifted up" section, for children that have earned their fluffy white wings, last year, i would never have thought that i would be sat here sending emails like this, but here i am. godbless all the children who have been lifted up, and bless all the children who are battling with this deadly disease, godbless,xxxx

message: Like you I lost my beautiful daughter Jayde in late 2007, if you'd like to chat I'm here

message: Hi
Thanks for all your replies and sharing your stories of this devastating disease. We were told in September that the prognosis is very poor and that there is no cure. However, Jack had 6 weeks of steroids, temozolomide and radiotheray. We were told that this would buy us some extra time . His chemotherapy treatment was stopped several weeks ago when symtoms of double vision, headaches, vomiting re-appeared and an MRI showed that the tumour had grown back. The doctors stopped the temozolomide, as it wasn't helping and they put him back on a high dose of steroids, which were reduced every 5 days. He is now on a tiny maintenance dose to help him tick along, and he seems happy in himself. He has permanent double vision and crossed over eyes but he manages well with swapping an eyepatch from one eye to the other. We have been told that it is very likely that he will lose his sight. He has a good appetite due to the steroids but his poor tummy is very bloated and uncomfortable and he has huge chubby cheeks, bless him. The docs think he only has a couple more months to live and will treat his symtoms as and when they arise.

I sleep in with him at night because I am so worried that he will wake up and not be able to see and I don't want him to feel frightened. We are just taking it one day at a time and enjoying the most of our darling little boy. Samantha x

message: hi my daughter paige age 12 was diagnosed with a glioma in january.I had taken her to the opticians as her eye had started to turn .And we were sent straight to james cook hospital were Paige had a c t scan.We were told that she had a tumor and were put in a taxi to newcastle general hospital straight away.She had a mri scan asoon as we arrived and had surgery to remove it the next day.We were told if we had left it just 3 more weeks paige would have been blind and parilized down her left side .Paige seemed to get well straight away we were only in hospital for 1 week her eye sight and her left side started to work better with help from all the fantastic staff .paige has took it all in her stride and has been a tower of strengh .We have just had anuther mri scan we has showed Paige still has some of the cancer inside her brain .The hospital are just gonna leave it and keep an eye on it untill her next scan in 6 months .Paige has now finaly realized that she is not better and it has realy hit her bad i dont think she realy understood how seriously ill she was .I am now realy concerned for Paige as she is just staying in her bedroom or laying around the house and wont see any of her friends .She is crying all the time and i just dont know what to do or say to her to make her feel better she opened up and told me that she feels like she is all alone and no one understands and that she dosent know why she has to live anuther 6 months with it inside her head she just wants it to go away ,as do we all .Me and paige are gonna start to keep a diary so she can write down anything she is feeling hopefuly this will help her to get all her feeling out .I think paige and me need some one to speak to so im thank full for having clic sargent to turn to and fingers crossed they will beable to help paige understand more than i can .All paige keeps saying is its not fair and she is right its not fair what is happening to all the children out there with cancer and other serious illnesses but we have to be strong all of us nd fight it all the way and keep smiling well what else can we do ? luv rachel xx

message: Hi, my 4 year old daughter Isobel presented a squint in her eye in February so I took her straight to the doctors where she was referred for a CT scan. This revealed the worst news ever, a brain stem tumour. Our world ended and we were thrown into a world we never knew existed. Isobel had a 5 hour biopsy which went well and had the normal course of radiotherapy and temozolomide. She never knew she was ill and never asked why she was always at the hospital. Her right side did go but this soon returned back to full use from treatment however in August 09 she started to be sick but our consultant wasn't too concerned as her eye was almost back to the center position and her right side weakness had totally gone. 2 weeks of sickness ended with a brain stem stroke on 13th August 09 and Isobel was sent to a hospice where she passed away on the 15th August 09. The devastation of loosing her has been unbearable and yet so many parents have to go through this and there appears to be little money spent on research. It just isn't fair. I just wanted to share my story and give my love to everyone who is going through the same thing. Jo x

message: Hi, our lovely daughter Katie passed away in January this year after battling a diffuse pontine glioma for 11 months. The illness is so cruel and Katie was such a fighter we felt we had to try to do something to help others who continue to find themselves in a similar position to ourselves. We have set up the Katie McKerracher Trust in memory of our fantastic daughter and are hoping to help others with a diffuse pontine glioma. This may be through telephone contact, a visit (being able to speak to people who had gone through the same thing was almost impossible whilst Katie was ill) or we could help with equipment required to make life slightly easier. Katie's e-mail address is <email address removed>

message: 11 months after being diagonsed with diffuse pontine glioma, Jack passed away on 31st August 2009.

message: my son has glioma we found out this September, doctors never gave us any hope my sons tumour is growing double in 2 weeks, doctors told us that radiotherapy would not work but to give it a go any way, so he went on radio and chemo (temador) for 6 weeks, a wek after he finished he had a CT scan and saw that the tumor had shrunk, its such a sad and awful thing to go threw as a parent, my doctors told me that this will kill my son, but i believe with the power my son has he will ge threw this, i have him healed every few weeks and i give him vitamins every day and fish oil, i think this is helping. keep positive and just keep your boy happy, every day my son wakes up and i hear his voice i have a smile on my face and is so happy he is here.

message: im so so sorry for your loss, remember god never took him, he only took his hand. god bless. im here if you need to talk and can give you a contact that has been threw the same and might be good to talk..x

message: "I am so sorry for the loss of your son Jack. Words cannot express how devastating this must be for you and your family. I hope you find a way through this. My sincerest thoughts are with you in this shocking time,

Suzanne, Mom to another child with cancer."