Sending you and your daughter healing thoughts. As others have said seek the assistance of a Child Life Specialist and as hard as it is, take care of yourself as well.
- topicGrief And Losstagged by System, 12/14/11
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My 4 year old daughter was diagnosed with a very aggressive form of brain cancer today........ - Page 2post #21 of 661/1/12 at 7:57pmpost #22 of 661/1/12 at 10:46pmpost #23 of 661/3/12 at 5:10ampost #24 of 661/3/12 at 3:15pmpost #25 of 661/3/12 at 3:29pmpost #26 of 661/4/12 at 1:18pmpost #27 of 661/5/12 at 2:54pmpost #28 of 661/6/12 at 11:49ampost #29 of 661/8/12 at 10:44pmThread Starter
Thank you everyone. We are doing a little better with the whole ordeal. I guess getting used to it a bit more. Its day to day, moment to moment. We spent our new years in the ICU with her, she had a seizure the night of new years eve, and the on the day we where released my grandmother passed on our way to see her. Its been a rough start of the year to say the least.
Thank you for all of the well wishes and prayers/energy/thoughts.
And thank you for the advise. We have looked into a child life specialist to help, she is supposed to be possibly coming over and helping to talk to Maddie. I'm not 100% confident in the team that we are working with as far as support and ability to actually fulfill their promises. But that's all for another thread......
Its amazing how hard it is to find resources and support for children with brain cancer, and especially with GBM. Its almost impossible to find medical info, there is a TON of info on adult GBM, and they recently found out that what they thought where 2 forms that where the same, are actually different in adults vs children......so that changes everything.
But anyway, wanted to give a small update. Thanks again for your listening ear.post #30 of 661/18/12 at 4:54am
Melanie, I couldn't read and not reply. It's safe to say that this is every parents worst nightmare. When my dd (2) had a seizure, the worst thoughts crossed my mind (tumors etc). Thankfully she seems to be okay and it has been 6 months since the seizure with no further issues... I would be lying though, if I didn't say that I'd absolutely break down if they found something on her upcoming MRI. I go to sleep scared she won't wake up again (for this very reason I HATE bedtimes). I don't know how you are coping, but my sincerest thoughts and prayers are with you and Maddie. If you ever need to talk, please don't hesitate to message me. Thinking of you and sending hugs your way. Please keep us updated.post #31 of 661/18/12 at 2:10pmpost #32 of 661/18/12 at 2:26pmpost #33 of 661/18/12 at 8:08pmpost #34 of 661/19/12 at 4:01am
Im so sorry to read this! I work in a children's hospital and have worked with parents who have walked a similar journey. I too recommend Child Life. They will have ways to talk to your dd and help her to prepare her. They also specialize in working with siblings of sick kids. My heart goes out to you. This will be a long journey and it will not be easy. Surround yourself with friends and accept their help, and ask for help if you need it.post #35 of 661/22/12 at 8:55pm
I am so, so sorry! All I can say is put a brave face on for her and cry when she's not looking. Ask for the hospital social worker, they are good at helping the discussion and helping you explain it to her. Look for a support group, both on-line and in person. And in all the bad times, there will be good moments still, lots of them. My daughter was just a baby when we were in a similar situation so I never explained to her. I have a 4 year old now and I can't imagine. (((((hugs)))))post #36 of 661/22/12 at 9:19pmpost #37 of 661/26/12 at 10:29ampost #38 of 661/28/12 at 11:26am
I'm praying for you, your daughter, and your family.
Please look up the Burzynski Clinic. http://www.burzynskiclinic.com/ Burzynski has successfully worked with children who had brain cancer. If this ever happens to my children--and it could happen --this is where I will take them.
Here is the movie http://www.youtube.com/watch?v=Be1ihuZNg84 (fast forward through the first 4 minutes--it's sad)
I apologize if you were not looking for recommendations, but I hope this might be able to help. Seeing success stories could be just what you need.post #39 of 662/7/12 at 2:49pmThread Starter
Its been a while since i have been online, but i have a cold and have spent all day in bed, so im catching up on some stuff........its been kinda nice. :)
Thank you for all of the advice, and support!!! Just to know that there are prayers, and love being sent her way means so very much.
Its hard to read that first post, i was in such a dark sad place. We have been so very lucky that even with our current circumstances, we have so very many people around us sending love and support and help. A few weeks ago, 3 friends, and 3 of my family members got together and held a HUGE bake sale and then there was benifit show that all of our musical friends and family put together. The news came out they night before to meet Maddie and talk to us, and then they came out to the bake sale! They raised over $30k between both! Can you believe that!!! We can now take medical leaves and not worry about bills, or how we are going to get to NC to see specialist at Duke University! Or where ever we need to go, plus all if not most of our medical bills should be payed (as long as they dont deny anything). Its been so very amazing! We are also leaving in 2 weeks to go to Disney World!!!!! Here is an article the local collage newspaper did :)
And the News one is here. They all did such a good job helping to get statistics and raise awareness.
We are trying to do what we can given the situation, we have a facebook page going, and are donation half of all further donations to childrens oncology group, and hope to get a foundation up and going soon with resources and support for parents of children with cancer.
We only have 6 more radiation and chemo treatments, then we will have our MRI march 27th. I am so very nervous. But she is doing so well. Her blood counts are normal, and other than her little head missing most of her hair, you would never know anything was wrong. She is such a strong little girl, They all are. Its amazing what kids can teach us.
BeckBird: We have looked into the Burzynski Clinic, but have decided on radiation and chemo for now. And from what i understand people can not seek care with them until they have tried chemo and radiation first anyway. It is on our list of 2nd options, after this there are really no other procedures or treatments that she can have through convention treatments.
Thank you all again, if anything just responding to my post. I know its a situation that no one knows how to react, but its nice to not feel alone.
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