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Newly diagnosed MDS-IB2 and vidaza

Blood Cancers & Disorders | Last Active: Dec 19 12:28pm | Replies (15)
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@rjperk633

@loribmt

We have small family… she has two surviving siblings… one with dementia and the other living away… just me and my grown kids and their kids… none live locally… sister has no children.
At this point, most friends are deceased.😔

Mom has a very small world, not very social except trips to grocery store, pharmacy and church… so avoiding crowds should not be difficult. (Except for masses… but she does attend early mass, less people and gets there early and sits way up front)
She’s definitely regimented!!

We just finished helping my husband’s brother recover from liver transplant so we have been isolating for a while now… ugh!!

We have already talked about hospice and reminded her that if she wants to plan her own funeral, it has to be before she is with hospice (we learned this with my dad in 2021).

I just scheduled her next appt with oncology for the new year and at this point we just keep kicking the can down the road.

So is there anything I may not understand yet about dangerously low platelets… I understand as this progresses, this may be an option to “boost her up”….. any down side (except for prolonging the inevitable)

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Replies to "@loribmt We have small family… she has two surviving siblings… one with dementia and the other..."
Lori, Volunteer Mentor | @loribmt | Dec 10 6:35pm

I know from experience that this is a difficult period for all of you. Even a family that’s pragmatic about end of life decisions struggles when reality sets in. So you have my empathy for seeing this all unfold. I went through similar with my mom. Even having the discussion about whether she’d like to keep her wedding ring with her for eternity. 😕

While painful for you, your mum, being able to be in charge of her life decisons is giving her the ultimate respect and dignity.
As your mom’s platelet and hemoglobin levels decrease, she may have infusions of both. That’s pretty common to keep her safely active. You’re right, it will ‘boost her up’ for a period of time. Her doctor will monitor the blood work which will let them know when it’s time to infuse. Also, if your mom notices more bruising, nose bleeds, excess bleeding from bumps, cuts or scrapes it would be an indication of possibly needing more platelets.

In the meantime, she has time! Time with you, time to get her ‘affairs in order’, time to share stories of her life. This is a great time to let her reminisce. You can make recordings of some of her life events or write them down. A good time to look through old photo albums and get the names of people you don’t recognize…you have precious time together.

Wishing you and your family a special holiday season. Sending a gentle hug…and please keep in touch. Lori.

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