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| Author | Topic: no one to talk to |
| Kristina |
posted 3/15/07 10:41 PM
my daughter was diagnosed with a DPG shen she was 7 she is now 9 she is doing good and i am very thankful for this i just wish i could talk to others about it my husband doesnt like to talk about it-i understand his reasons but it just makes it harder for me i have so many questions- and it never fails that when i ask her doctors they don't know-she is a a patient of st jude she is up for another mri next week-it seems like everytime her mri comes up is when i get real nervous lord forgive me!! no one around me can understand what this like-Dasia is going into her 3rd year of treatment on a study drug--she is doing well it's just a hard battle to fight when dr's say my lil girl is dying--i pray for you all may the lord strength you and keep you strong--i have to remember that the lord will not put more on us than we can handle so he must think parents like us are strong--GOD BLESS YOU ALL |
| Jim |
posted 3/20/07 1:50 AM
Kristina,People have said that I'm a fairly good listener and will galdly talk to you (e-mail or phone). Drop me an e-mail and we'll work out the details. I will pray for good results on the MRI.Jim http://www.jjsmiracle.com |
| Mike |
posted 3/20/07 5:15 AM
kristina,As Jim just said a lot of us her are good listeners. Over the last few years I have listened to quite a few people and don't mind listening to a few more. that is what I am here for, Just ley us know we are here for you. That is what i Have set this forum up for for you and anyone else who needs and wants. |
| Tore |
posted 3/21/07 9:50 PM
Kristina, My wife and I felt the same way when our daughter was first diagnosed about 18 months ago. She passed away in Oct/06 from DIPG. Please feel free to contact us if you have any questions or just want to vent some frustrations. We have been down the road and find that it never really ends. There are just many twists and turns. Regards,Tore and Kathie Hatlen http://www.hannahsheroes.ca Site dedicated to our daughter Hannah |
| tina |
posted 3/22/07 9:21 PM
Hi Kristina-Anyone on this sight would be happy to listen. It is a long road.would love to help if I can.Tinamom of Katiewww.carepages.com KatieMetz http://carepages.com katiemetz |
| Kristina |
posted 3/27/07 7:35 AM
my daughter recieved a good report on the mri last thursday-i was very happy but it didnt last long i'm really feel like i'm about to lose my mind wondering whats going to happen-i'm about to have a breakdown and it make it harder that theres know one to talk to my husband is in denial so he want allow himself to talk about it i find myself by myself with alot of questions that seem to have no answers Whyyyyy???God please help me |
| Jim |
posted 3/30/07 9:25 AM
Kristina,Good to hear that the MRI went well. We're here for you if you need. Drop us an e-mail. I won't pretend to know everything but will share what I can and listen for as long as you need.Have you guys considered doing a carepages or caringbridge? I can't speak for Mike but If you ever do, let's us know and we'll link to jjs page. Once up, I think you'll find many people will lend an ear to you. http://www.jjsmiracle.com |
| Kristina |
posted 3/30/07 9:50 AM
Hi Jim thank you for talking with me, i really needing someone to talk with about Dasia's situation-yes she has a caringbridge site its dasiaatkinson-i just recently put some pictures and updates on there-if you dont mind may i ask what your sons symptons were and did the readiation help and how long did it take for the symptons to come back- I be reading alot of other stories on children that have and had a dpg-do you know any surviors-or whats the longest life span of a child that you know lived after diagnoses-Dasia is now in her 3rd year and on Iressa this is a study drug she goes to St. jude she was diagnosed on 3-23-05-i had just read the story on lil mathew and sent a email that he was in m prayers and the very next day i read that he had passed-i want to communicte with alot of parents-but most of all the children are in my heart and prayers-jesus is the only way i'm making it through this sometimes i feel like i'm have a nervous breakdown-and i just go back to his word that he will not put more on us than we can bear so he must know that we will make it through this-sometimes it seems like he has more faith in me than i have in myself-if you have any tips please let me know and if there is anything i can do please let me know- |
| Kristina |
posted 3/30/07 1:46 PM
Hi I had a long night reading up on the kids that have passed it hurts my heart to see all these beautiful kids dying-I cried about 20 times last night-I didnt know this site was here-or that there were so many lil kids going through this-theres got to be something I can do-also my daughter dasia has a friend name Madison-we haven't heaard from her in a while so please pray for her yu can read her story on the caring bridge site her name is madisonchance |
| Kristina |
posted 3/31/07 0:22 AM
I have been reading alot of these children's stories and it makes me sick-where is the help at there are so many children dying of this horrible disease-and truthfully before Dasia was diagnosed I had never heard of a DPG before in my life-i also didn't not about grey representing brain cancer-if anyone knows of anything i can do please let me know-i have came up with one thing at this is to advertise this on tv i will be putting some pictures together of Dasia and speaking on the disease and its prognosis if anyone would like to help PLEASE let me know-i feel like i have to do something-it has to start some where-BE BLESSED |
| Jim |
posted 3/31/07 8:37 AM
Kristina,Dropped you an e-mail in an attempt to answer some of your questions. Your not alone in this. Never were nor ever will be. Mike put a wonderful forum together here and we will always be here for you. Jim http://www.jjsmiracle.com |
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