I was thinking about you today and wondering how you are.
I think of her often and wonder how she is!
Please know that you are in my thoughts and prayers always!
I have been thinking about momsworld and her daughter too, wondering how they are both doing. Momsworld, you and your little girl are on my mind and in my prayers.
Love and blessings to you,
You are all so wonderful, I wish we all lived closer together so we could all meet and get to know each other.
My daughter is doing ok. She is going back to school 2 days a week and seems to be holding her own right now. She has started back on etoposide to try and slow the tumor growth which is making her really tired. Her headaches are more often now and I am having anxiety attacks as this is how it all started, with headaches. I have been trying to get things in place for the future this week. She has made the decision to be a DNR, and has also told me and her doctor that she does not want to die at home because I need to live there after. We have made alot of hard decisions and talked about things that no one should have to talk about to their 14 yr old this week. It has been rough emotionally.
Thanks to all of you for caring and praying for my daughter and I.
I am sooo sorry. Your angel has gained a wisdom and strength that in an inspiration to us all going thrugh this. Love and prayers to you both.
I am so sorry that you are having to have these conversations with your daughter! She sounds like she is very mature for her age, but given what she is going through you have to be I guess. I am so sorry for the two of you, and I am glad that she is going to school those two days a week. Are you going to get to go to Atlantis? I wish we all lived closer too! We need to find somewhere close to the middle and get together! That would be so nice if that could happen! I feel really close to everyone who is on here all the time, and my heart is breaking for you! Please keep us updated as you can, and know that we are here if you need someone to listen! God Bless the both of you and your family!
i have just joined i must say that your story is quite encouraging.my one and only niece is a victim of glioma grade one she completed her radiation treatment in last month.she is 5yrs.but to be honest if heavens gave a choice on the illness i would have gladly taken her place.but my family and i we are trying so hard to believe that the princess will survive.the results are out but the tumour seems to have spread further even after radiotherapy.we now hope in God because he is all we got right now.He seems to be making a whole lot of sense right now than the results and doctors.they cann't put her under chemo and also they cann't remove it through surgery due to its location in the brain.it heart rendering.she doesn't walk due to the treatment.her eyesight is messed up so is her speech and even her ability to use her hands.what wipes our tear is hearing her trying to manage laugh at joke or even a cartoon.i have asked God questions,i have cried my heart out,i quoted scriptures over her life but sometimes is just overwhelming.everybody in the family seems like a zombie and interesting enough she is the only one who seems not being caught up in our depression.any glimmer of hope would really do for us.
I have been reading the posts on this wonderful site for many weeks now, but have not yet posted any comments. Your story moves me to let you know that both you and your sweet daughter are in my prayers. I cannot imagine how difficult it has been for to have such difficult discussions and make such hard decisions with your precious daughter. You are not in this alone. God has you and your daughter in his hands and will continue to lift you up and give you strength.
Blessings and prayers,
mom of Scott, age 31
dx oligodendroglioma grade 2/with 1p, 19q co-deletions
80%+ resection on 12/23/11/no deficits
no chemo or rad at this time
monitoring w/serial MRI's every 3 months
Our dear Tina, you and your daughter are always in my thoughts. She's such an amazing, mature and strong young lady. If I may ask, do you have other children? How are they holding up? Hugs to you dear.
Thank you for posting and letting us know how you two are doing. I'm amazed that your daughter is going to school two days a week. I think that it must take a lot of determination and mental strength to do that, not to mention physical strength too. What a brave little girl.....I say that she is brave for so many reasons, not just for going to school.
It tears at my heart that you had to have the DNR talk with her, and also that she said she didn't want to die at home, for your sake. I weep as I read this. You are right....no one should have these talks with a 14 year old child. I hate it for you, for your daughter, for me and my son, and for all of us here on CSN.
I hope that this week you were able to take care of everything that you needed to, and that you will not have that stress on top of everything else that you have to deal with. Were you able to work out a trip to Atlantis?
I will continue to be thinking and praying for you and your daughter.
Love and blessings,
In Salem, OR
I am so sorry that you and your beautiful daughter are going through this struggle. I think of you both and pray for you. I wish you the best of moments together. May God bless you both. I am sorry I do not have any great words of comfort, but I do think of you.
Thank you to all. I always know that when I feel down, you are all here. The Atlantis trip that we wanted to go on is not going to happen. Because I only work 20-24 hrs a week right now, the money is a major thing. We don't have any-lol-. I am going to make this short today but again, Thanks to all of you. It feels good to know that you are all out there and that we are all on the same side.
Your sweet daughter is so brave and mature. I can't help but thinking she is a sent by God to you and all of us...
I know words are too weak to comfort you at this moment. but just just thought I will remind you of the "Make A Wish" foundation. they help kids in similar condition. Maybe you can give it a try so her dream trip can come true?
Please take care!