I haven’t felt well. I’m 5’8” 103 lbs. My iron is lethally low as is my BMI. I’m 56 and have tried iron transfusions and blood transfusions for severe anemia to no avail. I’ve been reading that a bone marrow transplant can help if you don’t absorb iron. I’m the youngest sibling and my 3 sons (24,28,31) are probably the best potential donors. I can’t ask this of them. I’m not telling them anything at all. My Dr says that as is my life expectancy is approximately 5 years. I want to take my kids and their families with nannies on a few trips. We all live in different states. I’m ok with the timeline. I would rather live great 5 years than struggle financially and physically into old age. I am financially independent and can take my crew of approximately 15 to an island for a week and hopefully something else . I will fortunately be able to leave money to my kids and grandkids too. Is it ok to not share such disturbing news? They all have busy lives and I will only reveal this information if we can’t secure a date. Jobs, school, Nannie’s, new babies, weddings etc… I am adamant that I want them all together under one roof with me. I’m I being realistic and my intentions are good but am I being selfish?
My rule-of-thumb for these types of dilemmas is to ponder how I would feel if the scenario were reversed.
YMMV, but I would be very upset if such information were withheld from me.
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ETA: Best wishes to you.
I would be very disappointed if a family member chose not to disclose this.
As far as donation goes, they are not giving up a kidney. The bone marrow regrows and almost everyone is fully recovered in under 3 weeks,
As others have said, donating bone marrow isn’t such a hardship. Heck, I’d give a kidney to my sister, and we don’t like each other at all.
I would just skip all the drama and just tell everyone what’s going on and that you want to enjoy a vacation or three all together. What if something happens to you beforehand? Do you really want to leave surprises for you family to learn about after you are gone? Answer: no. Just be transparent - you may find someone in the family may step forward of their own accord and their own decison to help with the bone marrow thing. No one can help if they don’t know.
What has your doctor said about a bone marrow transplant? Should your doc be referring you to a different specialist?
Agreed.
Agreed again.
Signed,
Grizzled old night nurse
Agreed cubed.
Very grizzled old retired family physician
Some time ago I spoke with a tour director for a cruise company that sends people to Antarctica and other places. She told me about one of the weirdest parts of her job: people with fatal illnesses who decide to go on a last cruise with their loved ones, knowing they might die along the way, and don’t tell their loved ones of the illness. Often these people will think they’re doing a kindness by withholding information about their illness; but inevitably it creates tremendous anguish and suffering for the loved ones once they finally, too late, find out. Their grief is compounded with anger at not being told and guilt over whether they could have done something differently. It’s awful.
Unless you’re wanting to make their grief much worse and more complicated after you die, tell them.
Meanwhile, take note: there’s a market for this kind of cruise. Call it Final Destination Travels, and you can have the idea for free.
Agreeing with this.
I’d suggest not asking them specifically to donate; just telling them the diagnosis. And if somebody volunteers and you can afford it, offer to pay all expenses including time off work and extra care for them at home if needed. But let them volunteer if you’d take it aside from concerns about them. Wouldn’t you donate to one of them, if the issue came up?
Discuss with your doctors, of course, whether you’re a good candidate for transplant. And they should, and I’m sure will, refuse any volunteer for whom it’s an unusually great risk.
Reading the OP, what strikes me (other than sympathy for the horrible situation) is that you just don’t want to have the difficult conversations.
A way to mitigate that is to find someone who’s easy to talk to. It needn’t be someone really close, but it can be. Delegate the awkward conversations to them—they’ll be easier since the person directly involved, you, won’t be there, and they can also convey “Amia really doesn’t want to talk about it, though.” They can use what you said here: you’re unwell, you only have a few years, you’re determined to focus on the positive and enjoy them.
It’s all right to be selfish sometimes. You’re facing your own mortality. The “everybody under one roof” thing, though—that’s a lot to ask, and it is kind of selfish. You don’t say whether this is the kind of group that loves big family get togethers, or whether this would be an unusual one-off. If any travel is involved, this can be prohibitively difficult with people’s vacation schedules. People might manage if it’s important, but it is a lot to ask, and if you’re not telling them why, you’re basically testing their love / loyalty, and that’s not going to bring the results you want.
WHY do you want everybody all together? Answering this question might help you figure out a way to get what you want.
The other thing to say is that families inevitably rearrange after a death, and often split. There’s a reason you’re not close to all of your second cousins, and that there are a lot of relatives you haven’t seen since you were a kid. A lot depends on how the group is now: you can’t make them something their not, but you can and should facilitate enjoying what they are.
All just my 2ȼ, worth less than that—I hope things go well for you.
Having everyone under one roof and expecting rainbows and unicorns, alas, is a fantasy. All conflicts between siblings do not automatically resolve once everyone reaches adulthood. If anything, memories get twisted, and a disagreement can turn into a nasty argument. All the grandkids together can lead to spontaneous combustion.
Here’s the sad part of your plans: your doctor has given you a timeline of about five years. Those years will be in decline, and the idea of “a great five years” is not reality. It might be a great six months, followed by three years of so-so physical ability, and so forth. Think of being on that island, and your kids trying to find a medevac chopper to take you to a hospital.
Yeah, I’m a real kick in the pants. But these are the exact things you need to take into consideration when it comes to your final plans.
In my never-humble opinion, you have been given a gift. Now is the time to share yourself with your family. Think of your loved ones who have passed away. How many times have you thought, “I wish I had asked about…” or “Whatever happened to Uncle So-and-so?”
Lay out everything and tell your kids the truth: this is what I have, this is what will happen, this is what I decided." Pick an online ancestry site, and make a family tree with everyone helping. Include all the family stories about Grandpa eating ice cream, or Grandma going out with her shoes on the wrong feet. Everybody gather up pictures, and try to label them with the location of where the picture was taken, and the year.
Your time is precious now, and there is so much of you to share with your family.
~VOW
Thank you for your candid honesty. My sons are close to one another but feel closer to their Dad, my ex than me. Unfortunately if a vacation becomes stressful it would probably be a daughter in law issue with me. I seem tired make mistakes and have the best intentions but I’m closer to my sons than their wives. I appreciate your input but I am going to plan something this fall and pray that they want to attend. I just want to spend some time with them , just watching them brush their teeth makes me happy. If I tell them my diagnosis they would feel obligated to travel with me. I want them to go without that pressure. I will do my best to have realistic expectations that you reminded me to consider. The sooner the better. Please keep me in your thoughts. I can use some positive energy.
I am so grateful for your observations. The replies I’m seeing all tend to agree with you. I am being selfish. For sure. I want my kids and need them. I want to breath their air and share a few days with all of them. I feel like an addict and my kids are the drug I crave. They are all busy and they are grown so don’t need me anymore.,Unfortunately I need them more than ever. I’m unsure if I will take good advice. I don’t mean to “test” them but that seems to be the consensus. Wish me luck and please send positive thoughts my way. Thanks again
Hmmm… interesting. Ok thanks for sharing your perspective. I will give it serious consideration.
lol. Thanks for weighing in. I needed a laugh too.
Great input. Thank you!
If you tell them your diagnosis they are far more likely to spend that time with you. Otherwise they might let the demands of life like work take precedence, thinking there is more time and they can spend time with you later.
If you can’t get them all under one roof at one time then try to get the largest groups you can together.
I worked for Be The Match for 20 years … that’s the bone marrow registry in the US that an earlier poster linked to.
A marrow transplant will only help if you have a congenital anemia like severe aplastic anemia or Fanconi anemia.
I assume you have one of those.
A good match between a parent and offspring is not guaranteed. Just saying that even with 3 sons, they may not match you.
In that case you need to find an unrelated donor through BTM if you are in the US.
And that process takes quite a long time, so you may want to get your sons tested – if you tell them of your illness and they want to donate – and then go the alternate route if they don’t match.
The consensus seems to be against withholding the information. Personally, I disagree and think you should go with your gut. I would want to have a final nice vacation, or more if time permits, without the weight of the bad news/diagnosis weighing everyone else down. For me, asking a family member (or anyone else) to be a donor would be a non-starter, so I don’t see the benefit of telling others until it becomes absolutely necessary. If I could afford it, I would take a vacation with each son (and his family) separately, instead of trying to do one major event, to maximize quality time with part of the family and avoid conflicting personality battles as much as possible.
I’m sorry you’re going through this. Best wishes.