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MDS Myelodysplastic syndromes

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Old Wed Apr 19, 2017, 07:11 AM
Annettec Annettec is offline
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Final stages of MDS...

I haven't posted in a long time but I find myself coming back to the place that informed me most at the beginning of my mother's illness. After 36 months, my mother is now entering the final stages. Until recently, she did amazingly well on Vidaza for MDS High Risk II, diagnosed at 78 yrs of age. So for those of you out there, still wondering if there is life after diagnosis, my mother is proof of that. I've had 3 mostly great years to spend as much time with my mum as possible, and through it all, I have been amazed and inspired by her courage and ability to live in the moment! For the most part, by looking at her, you would never know she was dealing with a terminal illness.

Since March, we've seen a constant decline in her hemoglobin and platelets. She was admitted to hospital on Good Friday with a temp of 40 and very low counts (53 and 4 respectively). They've managed to get her temp down however, even with 6 transfusions since Friday, her counts are not staying up....especially her platelets. The doctor told us yesterday that unless they come back up after she has completed her IV antibiotics, they will likely stop all treatments as there isn't anything else that can be done. They also told her that it's unlikely she will get to go home again....

It goes without saying that although we'be known this was coming, it's still heartbreaking. As I suspected all along however, my mother is the strongest one of the bunch! Her faith has been her pillar of strength and I so admire that in her.

I'm wondering if someone could help me to better cope with the days ahead so that I can be there for my dear mother..... I have been with her through this entire process and while it has been difficult, it also has been a very special time as we grew closer together and I feel like I'm about to lose not only my mum, but a great friend!

Thanking you in advance for your support.

Annette. (Daughter of an amazing woman!)
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Old Wed Apr 19, 2017, 08:16 AM
Sue&Dave Sue&Dave is offline
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Hi Annette - I'm not sure I have any advice for you on how to cope in these coming days, other than doing what you have been doing for the past 3 years - and spending as much time with her as you can.

I told my husband 2 years ago when he was diagnosed that in a strange way I feel we have been given a gift. It took me a while to come to that conclusion, but I slowly changed my outlook on life and no longer let the little things bother me, and when something does - I speak my mind; time is too precious. No one knows what the future holds, and in a blink of an eye things can change. My own mom passed away suddenly so I didn't have the opportunity to look at our relationship in a different way and savor our time together.

So I suppose that is my advice for you, recognize the precious gift you have been given, and the privilege you have had to be the daughter to an amazing woman and attempt to emulate her positive outlook on life. Hugs to you and your family. Sue
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Old Wed Apr 19, 2017, 06:23 PM
Annettec Annettec is offline
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Thanks so much for your kind and thoughtful words. I have and will continue to cherish every moment. I am in awe of my mother. She is ready and accepting of her condition... She continues to inspire and amaze me.

All I am praying for at this stage is a peaceful death for her....she has suffered enough with 3 bouts with cancer! Enough....

And your words could not be more true.. The gift of time is so very precious! We often loose sight of this.....

Tks again,

Annette (in Eastern Canada)
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Old Wed Apr 19, 2017, 07:27 PM
JordanN JordanN is offline
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Hi, Annette,

I am so sorry to hear of the change in your mom's circumstances, and my heart goes out to you and your family! You and your mom remind me so much of me and my dad, and I know you will both handle this phase of things with dignity, grace, and love!

It seems that the course this disease takes to the very last day is so different for everyone, but for my dad at least, it was very easy (no pain or discomfort even with infections) until the very last week. He appeared very agitated and had difficulty breathing that last week but was unable to tell us what was bothering him. Hospice could not say if the agitation was due to medication, low oxygen, mini strokes, etc that can all play a part at the end, but they felt fairly certain that he was not really aware of what looked like discomfort to us. It sounds like your mom will remain in the hospital which may be a blessing in that nurses and doctors will be able to make her comfortable quickly, and you will not have to be trying to manage her comfort on your own.

You and Sue are right that although this is a horrible thing for anyone to go through, there is a silver lining in the chance to be very close to one of the most important people in your life. I had to go through it with both my mom and dad, but I got the benefit of having the most wonderful people ever as my parents.

Your mom's sense of humor is amazing, and I'm sure she will keep it through this trial, too. My dad was still making mischievious comments to the very end, and they still bring a smile and a lot of comfort to me.

Sending love and hugs to you and your mom!
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Old Sat Apr 22, 2017, 11:04 PM
Cheryl C Cheryl C is offline
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Hi Annette

It's wonderful that you can be there with and for your Mum. If she's a woman of Christian faith, perhaps she would appreciate you reading some of the great passages in the Bible to her or even singing some of her favourite hymns with her and praying with her if you are able. These are things which my father-in-law, who was also a man of faith, appreciated during his last days. My own parents were killed instantly in a car accident at 62 and 71 years old, and it's so much nicer when one has warning of what is to come and has time to say goodbye.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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Old Thu Apr 27, 2017, 09:49 AM
Annettec Annettec is offline
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Thanks everyone for the kind words and prayers.

Recap: my mother was brought to hospital on Good Friday by ambulance with very high fever 40.1, admitted and started IV antibiotics in isolation. After 2 platelet and blood transfusions, her count never came up so after a week, doctor told us they were stopping all supportive care and would simply keep her comfortable.. 3 days later, the second last day before the end of her antibiotics, her counts stabilized and went up (a bit) on their own. Oncologist decided to try another transfusion to see if it would hold. Her platelets went from 8 to 17....we were all shocked.

Since she is stable (for now), she was able to go home. The doctor advised us that the next time she has an infection (guaranteed) they will not treat it with IV but orally and keep her comfortable as there isn't anything else to be done as she is in the final stages. She has no white blood cells, required weekly transfusions and now doctor has placed her on a new med to try to control bleeding (she has had none thus far in her illness)

This is such a roller coaster! As she said to the doctor " I know I'm supposed to be already dead but I supposed since I've never done that before, I don't quite know how to do it yet". How's that for attitude.

She continues to amaze me with her courage and strength.

I wonder how long she can go in the state. I really worry about her at her apartment alone...although she has a lot of help and visitors constantly.

Advice welcomed
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