Daughter of MDS patient

[lizzie32765]

My Mother's story is a long one and since she just recently passed away after 21 months of treatments weekly blood and platelet transfusions at the end. I hope to be able to put it all down into words and post it here.
Since she was diagnosed I have become a hopeful bone marrow doner. I pray for the chance be able to help a patient and their family be together for as long as possible.
I learned so much from her and the doctor's. She taught me how to be strong. But honestly, if we had our choice, I do believe we would have rather read about it instead of being part of it. But we never questioned why. My beautiful Mother never got angry. She just kept going every week for test and or treatments. The doctors learned alot with my Mother, we both knew there would never be a cure for her but one day hopefully everyone will be more familiar with this disease and diagnose it earlier and hopefully one day find a cure.
Everyone with this disease is truly brave as the wrist bracelets states. I am looking into being part of a support group with other family members/caregivers or patient's themselves. My Mom lived with me so I promised I would be with her always and that is what I did. I was very fortunate to work for a company that knew family truly comes first and that my place was with her when needed.
I want to help someone else going through this if I can. Talking with others or having others question me and or just listening has been a positive thing throughout the whole ordeal.
It takes such strength and courage to continue a "normal" way of life if there is such a thing after learning the diagnosis.
Whether you know it or not; you are braver and stronger than you probably realize. God bless all of you and your families.

[Ruth Cuadra]

I want to help someone else going through this if I can. Talking with others or having others question me and or just listening has been a positive thing throughout the whole ordeal.

Dear Beth,

I'm sorry to learn that you found Marrowforums only after your mother passed away. But welcome and my condolences on your loss. As brave as bone marrow failure disease patients are (and I do believe they are brave), caregivers face at least as many challenges, if not more. I'm glad to see that you've shared some of your experiences in our Spouses and Caregivers forum. I agree that helping someone else helps you get through your own ordeal.

Regards,
Ruth Cuadra

[lizzie32765]

Thank You Ruth for your kind words. This is an awesome site. It would have been perfect for Mom. She has always been the "wind beneath my wings" so I see things much more clearly and she taught me not to sweat the little things. I want to pass everything she was on to my children. I know all the day to day things we went through and how stressful it can be. I wish I could do more to help. I am in contact with our cancer center often and I think I will start there. Even if it is only running to the store for someone when they can't do it anymore. I feel in my heart that this is what I am to do beside taking of my children, my Father, keeping track of all my Mother's sisters and brother and preparing for my up coming wedding in August of 08. My Mom will always be with me I know, it's just sometimes I get a little selfish and wish she were here beside me. She was a special lady, who was also my best friend. I am going to keep learning about this disease and I truly do hope that besides donating blood, that one day someone might match my bone marrow and I can donate it to them. (although, my first wish would be that no one would have the need for it - in a "perfect" world.)
Thank you for listening to me ramble. I suppose this is my way of trying to move forward, but is so hard. Bravery is not the word for someone diagnosed with this disease. It's just the tip of the iceberg as they say.

Thank you again,
Beth

[Ruth Cuadra]

Good for you for being a blood donor! Another way you can help is to consider joining the AA&MDSIF's Global Support Network. The Network consists of patients and family members who are willing to share their experiences with bone marrow failure diseases with other patients and families in need of support and hope. I've been a member of the Network for several years and talk regularly by phone and email with people who have contacted the Foundation hoping to speak to someone with "real life" experiences. People are often grateful just to talk with someone who really understands what AA, MDS, or PNH is like.

Thanks for sharing.
Ruth

[lizzie32765]

I have been somewhat involved with that organization a few days after learning of Mom's disease. I wanted to know everything. I wanted to make sure I would understand everything. Mom's cancer doctor and the center were wonderful.. They were so kind to her. We felt like we were all part of a family. That is an awesome feeling when you go through something like this, they were not going to allow us to feel like we were on our own. When I am able to give a donation I do, I have a bunch of the bracelets which were wore from the beginning. We had them at her memorial service and I took the rest to her cancer center. While Mom was with us it was rare that we had any down time. I think I am now interested in becoming that kind of member. I will go back to the web site and see how I go about doing that. Thank you for listening. And God bless