Baby 3months old with Pnet brain tumour grade 4

message: Hello,

I am so sorry to hear of your situation - this must be such a difficult time for you and your family.

Unfortunately I dont know of any other families whom you could contact, but if you have a CLIC Sargent social worker then perhaps you could discuss this with them?

My other suggestions would be for you to get a copy of some our publications, especially 'Choices - when it seems like there are none' and 'facing the death of your child'. You can order these using the online publications order form on the CLIC Sargent website. http://www.clicsargent.org.uk/Publicationsresources/Publicationsorderform

You could also contact ACT which is a charity for children with life limiting and life threatening illnesses. They offer support to families and have a national helpline which is on 0845 108 2201.

I do hope one of these suggestions will be of use to you.
Naomi (Child Cancer Helpline)

message: Hey Sara and Evie,

I sadly know EXACTLY what you are going through. My beautiful baby boy, Ethan, who is now 5 months was diagnosed with a brain tumour 2 months ago. He is now 5.5 months old and following attempts at surgery, it has been decided to cease all treatment as there is nothing else that can be done. We are now under palliative care with Great Ormond Street.

The pain of this is unbearable and we have recently returned home from 2 months in hospital from the day we were diagnosed. We feel so isolated and when there is no hope, it is hard to get through each day. But you have to go on for your little one.

Not sure if we are allowed to post our personal email addresses on here but let me know if you would like to chat as I really understand your pain.

Lol

Alli

message: Hi Sara my 3 month old baby girl have Pnet. and just become a member to this site because of you. I know how much you are suffering. But yes there is hope don't give up. you know what they told me in the first hospital that I was, they told me to take her to the park and to take pictures, and If I needed hospes, because eventualy she will stop eating. I told the oncology there, yes, that what you think and I transferd my daughter to Jackson Memorial Hospital In Miami Fl. And here they give me hope. Dr. Sandber operate on her and extracted the tumor and now she is resiving chimo from Dr. Antonello Podda Exellent hematology oncology. Please contact this Hospital. The phone number for Dr. A, Podda is 305-585-5635. Or you can call the social worker name Rolando Tabare at 305-585-5685. please call, I thought my daughter didn't have a shansse in live but she is having one in this hospital.

message: My daughter Chloe was born with a Grade 4 PNET tumor after a normal pregnancy. She had a partial tumor resection (to spare her from being paralyzed) and what our neurosurgeon couldn't get, the high dose chemo and stem call rescue killed. Chloe is now 14 months old and tumor free! She is just starting to walk and is working on getting her appetite back with G Tube feeds. We were not given much hope either, but we pushed on and had a wonderful treatment team. We were treated at the Floating Hospital for Children in Boston, MA, US. http://www.floatinghospital.org/default Our Oncologist is Dr. Michael Kelly and our neurosurgeon is Dr. Carl Heilman. They just recently added a brain tumor specialist as well, Dr. Jiohannes Wolffe. Best wishes and God Bless to all. xo