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  #1  
Old Fri Oct 26, 2012, 08:58 AM
BStroud373 BStroud373 is offline
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Location: Dallas, Texas
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My journey with my best friend, my mom

First of all, thank God I found this forum. I literally cried for hours after reading thru hundreds of posts (especially bebop's journey). As an only child going thru this with my mom (my father passed when I was 13), I was comforted knowing that I am not alone.

Here's our story:
On July 5th during my mother's 6 month post breast cancer check up (she had been in remission for 10 years) our doctor noticed a drastic change in blood counts and ordered a bone marrow biopsy. I knew then my life was about to change forever. The results came back a week later and we were told it was MDS/pre-leukemia and the presence of 14% abnormal chromosomes complicated matters even more.

Long story short, we were given the option of chemo or supportive care with blood transfusions. After MUCH prayer and tears, mom and I decided on supportive care being that she BARELY made it out alive when she had chemo during her bout with breast cancer. (She also has cirrhosis of the liver which complicates things even more). I was concerned about her quality of life on the chemo as I recall the mouth sores, hospital stays, blood transfusions and the overwhelming fear that came for both of us when it was time for our next chemo dosage.

Our doctor told us she would have 4-6 months left and to call hospice to get them involved. I immediately did just that and with mom's help, we got everything in place (will, funeral arrangements, ect). We wanted to be prepared so we could enjoy as much time together as possible without worrying about arrangements that we refused to make because we were in denial. We continue to have faith that God can heal her but want to be prepared if that is not His will.

Fast forward to today (almost 4 months later) and I have moved back in with her as she also has Retinitis pigmentosa which means her eye sight is extremely limited. Even though my husband and I live 4 minutes away from her house, I was constantly worried about her falling or bumping into furniture and causing a life ending injury and bleeding out. My cousin stays with her during the day when I'm at work.

She is now getting transfused weekly (at least one unit of blood and one unit of HLA matched platelets) but unfortunately now they aren't making much of a difference. Her platelets are extremely low (7,000) and she is experiencing nose bleeds. Hospice is coming once a week to check her vitals but other than that, they really can't do much since she isn't in any real pain. We aren't taking full advantage of their service since mom knows when they get really involved, the end is near. She has lost a ton of weight but still has an appetite. I've purchased very supplement from Curcumin to sun dried apricots in an effort to do SOMETHING to help her.

It's been a rich time with her and I know that moving in with her back in September was a good idea. I miss my husband and my home dearly although he visits at least twice a week. (She has gotten a little possessive over me now and gets a little attitude when I tell her he is coming over.) I go from moments when I feel so stressed I can't breathe to feeling thankful for this precious time with mom.

But my main emotion is fear. Her skin color has changed (I notice this more so in the mornings) and at night I constantly check on her to make sure she is breathing. I don't know what to expect and I have to constantly remind myself that God is in control and He knows what's best. I pray that He will take her in a way that I can handle which might be a selfish prayer. At times, I don't even know what to pray. This disease is such a mystery and I feel as if I'm in a dark room looking for the light switch but terrified of what I will find when I do find the light switch. I simply don't know what to expect...

Please pray for me and my dear mom as we are in desperate need of supernatural support and energy.

God Bless You All!
Bobbie in Dallas
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Bobbie, daughter of Loretta age 70; diagnosed with MDS on July 5th; supportive care
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Old Fri Oct 26, 2012, 10:08 AM
Sally C Sally C is offline
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Dear Bobbie,
I wish there was something I could do or say to change this situation for you and your dear Mother. She is very blessed to have someone like you who loves her so much.
All I can offer - and I think you know - is that God there with you and He will take care of you and your Mother regardless of what happens. I know that you both are in His loving Hands. He will always supply the support and energy you need. I hope that will provide some comfort for your whole family in the coming days.
God Bless,
Sally
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Old Fri Oct 26, 2012, 01:05 PM
Neil Cuadra Neil Cuadra is offline
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Bobbie,

I admire your dedication to your mother and your willingness to do so much to help her.

Nobody knows how the end will come, and it will be hard to accept the loss, but you should have no regrets when the time comes. What you've done for her is what she would have done for you: everything. You said that you hope her passing will be in a way you can handle, and I think you'll find that strength.

She's hanging on to you closely (probably why she's a little possessive) and with you almost 100% in charge of her care that's a lot of stress to handle. I hope you won't mind if I make a suggestion, that you use more of the available hospice services. Having the wonderful people from a hospice program around more does not mean that the end will be nearer, nor does it mean that you have to stop the supportive treatment. I think that you and your mom will quickly get past any initial negative reaction and find that having other people around more (more often than for a weekly vitals check) will provide more companionship, relieve some of the stress, lessen your feeling that constant vigilance is critical, allow you to relax with your mom more, and produce less worry for both of you.
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Old Fri Oct 26, 2012, 08:03 PM
BStroud373 BStroud373 is offline
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Join Date: Oct 2012
Location: Dallas, Texas
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Thanks so much Sally and I do appreciate your reminder. I know God is with us and supplying us with strength otherwise we wouldn't have made it this far. I praise God for his strength.

Neil, I took your advice and called hospice to talk about the services they provide that we aren't taking advantage of (not necessarily for my mother, but more so for me!)

I thank you both for the replies!!

Warm regards,

Bobbie in Dallas
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Bobbie, daughter of Loretta age 70; diagnosed with MDS on July 5th; supportive care
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Old Fri Oct 26, 2012, 08:13 PM
cathybee1 cathybee1 is offline
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Oh Bobbie, you and your mom are so lucky to have each other. It's all about love, isn't it? Hang in there and hugs.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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Old Sat Oct 27, 2012, 09:52 PM
BStroud373 BStroud373 is offline
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Location: Dallas, Texas
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Thanks Cathy!

That's EXACTLY what her doctor says. She is so touched by our relationship. It is all about LOVE and making her feel so LOVED while going through this tough time.

Thanks for your reply Cathy. I appreciate the reminder.
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Bobbie, daughter of Loretta age 70; diagnosed with MDS on July 5th; supportive care
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Old Wed Oct 31, 2012, 01:00 AM
cathybee1 cathybee1 is offline
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How are you doing, Bobbie?
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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