Q&A: grandmother with compromised immune system

This post seems to be gone, even though I wrote and autoposted it to go up yesterday, I thought. And now I can't even find the original question. So here's a paraphrase of the question, and a reconstruction of my original answer:

"My mother has cancer that's spread to her liver, and is undergoing an extremely aggressive chemo protocol that will go on for basically the rest of her life. Because of this, her immune system is compromised and she's in danger of getting sick and dying of things that the rest of us shake off easily.

How do we deal with this? My three-year-old loves his grandma, and doesn't understand why he can't see Nonnie anymore. And she misses him. Is there anything we can do, or are they never going to be able to see each other again? That would break my heart, as well as both of theirs."

Oh, this is breaking *my* heart. I'm so sorry about your mother.

I don't know if there is any way your son can see his grandmother. There must be a patient coordinator or social worker who can investigate this for you, to find out if there are ways your son can see your mom without endangering her life.

In the meantime, you can use a lot of the ways people have suggested for grandparents to keep in touch with grandchildren when they're living far away. There are many suggestions here, and most of them consist of talking by phone or videophone or Skype (free!), video or audiorecording your mom reading books to your son so you can play the files for him, and recording your son talking to her so she can see/hear him.

Has anyone been in this situation? I'm guessing some of us may have been unable to see someone for a short period of time, but this is a permanent situation for them, it sounds like. Any ideas how to help them cope?

Comments

[Jessica]

We were in this exact situation for the first year of my daughter's life. We talked with our pediatrician and the oncologists and came up with a general plan of avoiding all contact if anyone in our household was actively ill or had just had a shot, being very conscious of hand washing, physical limitations, etc., but then beyond that generally just still spending time together. We knew the time we had was limited and all parties agreed that the mental benefits of being able to spend time together outweighed the other risks. Our pediatrician was VERY helpful in telling us when we should avoid contact and when would be ok. To my knowledge, my FIL never caught anything dangerous from any of us during that time that further compromised his health and he loved spending time with his granddaughter up until his very last days. Good luck to you and my prayers are with your mom!

[Andrea]

My MIL has been receiving monthly chemo since Wiggles was born. Each month, there is a 7-10 day period when her WBC count is safe enough for us to visit, or for her to come visit us.

I can't imagine a chemo protocol that would have someone in a constant immunocompromised state - that's not safe. I'm sure that there will be times during her treatment that your mom can safely receive visitors. Much luck to you!

[Andrea]

Oh, and also: this was my MIL's third bout with cancer, and it had appeared on her liver this time. Good news: the cancer is gone! She only has one more chemo to go. So - I wish your mother all the best for a good prognosis! Liver cancer be damned.

Oh, and we did do video conference stuff during Wiggles's early weeks.

[enu]

Others have given very good advice about handwashing, avoiding when activly sick, and visiting when blood counts are good, etc. I'd throw the question right at her doctor - do you honestly think the best thing would be for her to never see her grandbaby again? And if he/she really does believe that is your Mom's best chance for greater survival, she herself will need to weigh the risks and benefits. I know what my response would be!

[Jill in Atlanta]

I caught an autopost of mine posted as January 2008 instead of 2009. You might look around in your archives.

[Mari]

My father is chronically ill with both COLS (if that's the English abbreviation) and very active arthritis (and the strong meds he's taken for that for the past 30 years have done serious damage to his body) and getting ill is a lot worse for him than for the rest of us. It could cause his death.

I've talked to many different doctors about it and always gotten the it's so hard to say-answer. And many times I've called off going to my parents' house because my son had a cold - and he has a cold very, very often; we live in Norway and he's a two-year-old in kindergarden.

Then one nurse finally said something like this to me (as I was about to start crying for not being able to go visit, AGAIN):

"You know what? This is your father's life now. He CAN get very ill. And he has different nurses coming into his house to help him wash every night. Your other family come and go, and of all these people that he interacts with on a daily basis, some might have a cold. Or the flu, even, without knowing it yet. To keep him from seeing his grandchild is not something he himself wants, is it? And I can see it's making you very sad yourself."

So now we go to see him, even with a mild cold. He hasn't caught anything from us yet, and while I am aware that he might, at least he gets to know his (only) grandson - and my son gets to know his Bæsse.

[Katie B.]

My grandfather was similarly compromised (lupus and emphysema among other things), and our family custom was just to not go over if we were actively ill. That was why it was me and not my mom who was at their house the day he died. I grant, us kids were all past infancy when we started this, but I think we would have practiced it anyway. As PPs have said, you have to balance physical and mental needs.

[Cloud]

I have no experience with this, so can mostly only offer sympathy and best wishes to the original poster. This must be such a difficult time.

I have one very small thing to add to the discussion of how to avoid illness- most people don't wash their hands anywhere well enough to really eradicate germs. I think the standard advice is to sing "Happy Birthday" in your head while you wash, and then maybe you've washed long enough.

We've had a lot of luck with adding a water-free hand sanitizer (like Purell) to our routine. Pumpkin recently went through a bout of a stomach bug (likely norovirus) and I managed to avoid getting sick, despite being the one she threw up on and the one who changed most of the diarrhea diapers. Now this could be because I'd already "seen" that particular bug before, I have no way of knowing. But I was very, very strict about using the hand sanitizer before I touched ANYTHING heading towards my mouth and after any diaper change, clean up, etc.

[Amy]

If it were me, I'd keep my kiddo away from Grandma if we were sick at our house, but otherwise I'd just have him wash very, very carefully before seeing Grandma. And I'd take him to see Grandma, anyway.

Maybe take a pair of newly laundered clothes along for your child to change into when he arrives, because a lot of the germs we pass around are on our clothes and shoes. No one should be wearing shoes around Grandma anymore.

Seriously, life is too short to be kept away from the people we love.

God bless,
Amy

[Ang]

This one hit home for me. A very dear friend passed away only 5 weeks! after being told he had liver cancer. He didn't want a lot of visitors, for a variety of reasons, and his visitors were limited. However, if I'd known how little time we had left, I would have been there a lot more - and I would have gowned/robed, face-masked - anything they asked.

[Summer]

To add to the other suggestions, if the child is in daycare or preschool, explain the situation to the teachers and request that the teachers alert you if ANYONE is sick, so you can have some advanced warning that the kid's been exposed to something before he becomes actively ill. You could ask the same thing of any parents of other children the kid plays with at playgroups, classes, or playdates.

If I was in this situation, I'd let the grandmother make the decision, as it's her life on the line. I'm pretty certain that my own mother would accept the risk if the alternative was never hugging my son again.

[Peasy's mom]

My father died in July of lung cancer, after being home in hospice care for two months. My husband, my daughter and I live across the country from him, but we were able to make two visits home during the hospice period. We had similar concerns about making my father ill--especially because we're all colonized with MRSA--but we were also concerned about our daughter (who was 12 months old then) becoming ill. My dad was incontinent in his last days and had several intestinal viruses. The advice we got from our doctor is the same that many of you gave: wash very thoroughly before and after touching; weigh risk and reward. My father and my daughter saw a lot of each other during those visits, but he only held her twice. Those were very special moments for us that I wouldn't trade for anything.

On another note, I'd like to underscore the value of having your mom make recordings for your child. We have just one that my dad made for my daughter. I wish I had more for her, and also one for me. I wish strength and peace for you and your family in this difficult time.

[Donna]

My Grandma has been fighting cancer for 6 years. It started in her colon and has spread to her liver and lungs. My daughter is 16 months old and went to the chemo treatments with her GG (sometimes for hours at a time) until she was mobile. The only concern that was ever voiced by anyone was that we not have her near GG if she had recently gotten the polio vaccine (and my pediatrician later said that wasn't even a warranted concern).

We leave it up to GG who wants to spend every possible moment with her greatgranddaughter, who is also her namesake.

They also skype regularly when we can't be nearby.

Much love and strength to you and your family.

[Sabrina]

My mother had colon cancer and lived with me while I took care of her for over 6 years. During this period she was constantly undergoing intensive radiation and chemo treatments. I gave birth to two children during this time period. The only things that I did was to make sure to vaccinate my kids, always wash hands very well, and keep the kids away from my mom if they were actively sick.

But we all lived in the same house, there were all the same risks that the original poster mentioned, but for the most part the benefit of having her grandchildren around and having me take care of her vastly outweighed any negatives regarding her immune system.

May all in this type of situation have the strength and peace to deal with the times ahead.

[Lisa]

I had cancer and was neutropenic four times: once when I was sick and didn't know it and was working in an elementary school, and after each set of chemotherapy. I never got sick, and although it is individual, I saw my extended family often and didn't get sick because everyone washed their hands and if they were a little whatever, they wore masks or waited to see if they felt better.

Also, you might want to ask your mom if she is willing to risk getting sick to see her grandchild. Ultimately, I think it is her decision, it is her life.

My dad has pancreatic cancer and I can't imagine keeping his grandson from him or vice versa, no matter what is going on with the cancer or his blood. He wouldn't stand for it either.

[LuckyJen]

I know all too well the internal struggles of this situation.

I have just completed my chemo regimen for cancer (non-Hodgkin's Lymphoma)....and I have a two year old daughter. I was (and still remain) in an immuno-compromised state for several months (well, as others have said, there is usually a period of time (a week or so) that is most high risk).

What did we do? We as a family (and a community, too, I might add, including friends in this) realized that there were certain things that were no-compromise on: absolutely NO visitors who had any cold symptoms at all, strict handwashing/Purell routines, and (sadly) staying away from any school age kid.

We have the benefit of our daughter not being in school, but it has been hard these last few months, both for me (avoiding seeing some of my good dear friends in person) and for my daughter (basically not being around any kids at all--no playdates, no playgrounds, no group activities like Gymboree etc). We decided it just wasn't worth it.

I know that this isn't the exact same situation, but I guess my advice here would be to decide what is important to them and then to do their very very best to keep Grandma safe. Talking to the three year old and explaining as best as the parents can seems like a great idea. I've been wonderfully surprised by how much my daughter really does understand, at 2 years old, and how well she's been able to cope with my illness.

Wishing this family the best....it is such a difficult situation.

[eccentriclibertarian]

We went through the same protocols already described when my dad had a bone marrow transplant, but there were no little kids in our life then. He didn't catch anything from any of us, and the treatment was a success.

As many PPs who have been in the exact situation described in the question have answered it, let me just take a moment to advocate for non-alcohol-based hand sanitizers, such as Clean and Well or Hands 2 Go. They're a lot easier on your skin, and there was a case locally of a 3 year old admitted to the hospital 'drunk' (yes, I know it's not the same - word used in news story) from licking so much alcohol off her hands at preschool, where they were apparently Purelling the living daylights out of the kids. Clean and Well is based on herbs and makes your hands smell like you've been making pesto, and Hands 2 Go (and most other non-alcohol ones) is based on benzalkonium chloride - and is effective against MRSA.

[eccentriclibertarian]

Here is what Snopes has to say about little kids & alcohol-based hand sanitizers:

http://www.snopes.com/medical/toxins/sanitizer.asp

[MRSA Symptoms]

MRSA infection shows symptoms like pus under the skin, eyelids swellings, inflammation of eyelid glands.

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