|
| Author | Topic: New forum |
| Mike Curry |
posted 4/1/06 1:21 AM
To the parents of DPG children, please use the forum anyway you wish, start new topics, treatments ideas, you experiences, whatever you wish this is our way of trying to help you. No one knows better than the parents on what to do and not do with our children, make use of this forum, it is yours. |
| Tina Christian |
posted 5/2/06 11:28 AM
I have a lot of questions. How in the world does a child get this tumor? Are they born with it? What signs and symptons to the children have years before they are even diagnosed with this tumor. Why couldn't we have seen the signs before hand? Why doesn't this tumor affect adults and triggers this tumor to start growing? So many unanswered questions. The whole situation makes me angry. Its cruel, its mean and very hurtful to watch a child go through this. So, where do you go from here? |
| Linda |
posted 5/14/07 2:28 PM
I think some rsearch is going on on why children get cancer, but not enough. A research centre in Newcastle University, England seem to think it is genetic (something happens during the conception process), which also compounds the likely hood, if the mother has an infection (usually viral). Sadly our children are just time bombs ticking away until the cancer rears it's grotesque head.There could be enviromental factors as well...need I remind you there are various types of childhood cancers and DIPG is just one of them...and possibly one of the rarest forms. I have struggled and keep struggling to try and understand why my child got it...was it something I did...or ate...or exposed my unborn child too? I think because we love our children so much, we are bound to ask ourselves such questions and harbour guilt.I do think there needs to be a strong task force to get this cause heard...because there are so few children dying from this disease (in England there is less that 40 a year)and a small number in the States, there does not seem to be an urgency attached to finding out why. I wonder whether they would be able to find a cure to be honest, because of the tumours location...such a delicate area.But since my son's passing I try to keep myself up to speed on new developments etc and I hope one day there will be better ways of treating such a child who is just so unfortunate to get DIPG. |
| Mike Curry |
posted 5/14/07 3:49 PM
Linda,I understand what you are saying. I have heard before Mothers and fathers beating themselves up over "What did I do" Never ever think this is your fault or you could have done something different. I do not believe anyone would have done something to hurt there child. We are trying everyday to find a cure but sadly the start will be finding out why DPG happens. When it is found parents may try to blame themselves but it could be that you ate pizza with beer right after you had popcorn and M&M's at the show. I know that sounds a litle ridiculous but that could be the strange combination that causes this or it could be simply a certain virus when we had a cold or flu. Who knows? the thing is we can not blame ourselves. The foundation is commited to helping find a cure and we will keep on trying. |
| Jim |
posted 5/17/07 1:57 AM
Linda,Can't beat yourself up over this. There's no blame or things that one could have done differently. As in a car accident and the parent says "if I had only left 5 minutes earlier....". You just don't know.I am grateful to the doctors here in the states, in Britain, and elsewhere for the research. Sad that they know so little about this thing. JJs doctor has started a study at the National Institute of Cancer and is exploring via tissue samples donated if it may be a protein issue. No matter, the more that look into it, the sooner a cure is to be found.Please stay in touch and if you have the need, drop us an e-mail. Jim (www.jjsmiracle.com) http://www.jjsmiracle.com |
|
|