Hi all- My mom is current stage zero, no swollen lymph nodes. Just an elevated white count. Overall, pretty healthy just a little tired.
I am concerned about my mom and my very young kids getting her sick. Post-pandemic, how careful do we need to be with the kids (germ-factories) being around her?
Also, I'd love to hear about your experience living with CLL. This all took us by surprise and we don't know what the future looks like.
It's a club we never wanted to join. I was dx at 52. My Dad, his twin & their mom had it. Never needed treatment. So when I got it, I never knew some did need treatment. I was on Watch & Wait 12 years before I needed treatment. Some need it sooner. I have lots of grandkids. Never changed anything I did. I was used to washing my hands often way before covid. It would be a good idea for her to see an expert. She could still use a local hematologist but have one for her to form a relationship with especially if they are farther away. She needs to get copies of all tests (start a file), record appts with permission since virus keeps us from bringing someone with us and just try to relax. Most of the time we feel fine and just go on with our lives. Hopefully she has an easy journey. 🙏💕
Thank you for your reply. I'm glad to hear that you were able to live normally. We are very fortunate to live just outside of Chicago and have many top-rank experts near by. We are waiting for a second opinion from University of Chicago... hoping this doc confirms the "good" news that she's stage 0.
Wishing the best for your mom. I am as careful as Gma27 around my family. Covid has changed our times together. Thanksgiving gathering was skipped by me and Christmas will be on the front lawn. I and my husband will be masked. I was diagnosed this year and in w &w. Lymph nodes a bit enlarged and some aches. I move into each day with a 😊 and prayer of thanks for strength physically and mentally. FaceTime has filled our missed times together. Also picture postcards and letters on funny stationery has been a plus between me and the grandchildren. I tell them short stories from my life or something about the picture on the postcard.
Don’t worry about it, if your Mum is feeling fine. It may well be years before she needs any treatment, and she may never need it. You don’t need to keep the children away from her unless they have had a 'live' vaccination (polio is one I think). If she starts picking up lots of colds and coughs from the children then it may be worth keeping them apart for a day or two. Keep up the hand washing and normal precautions around food, and don’t worry!
Well, we stopped mouth kissing when I got diagnosed. I don't share food, utensils, etc. We try to use different bathrooms even. I personally chose to follow what are now Covid social distancing/masking requirements during every Flu season after my diagnosis about a decade ago. I have air sanitizers and cleaners, even in my car. Teach your kids (& other relevant people) basic infection control procedures. No coughing/sneezing into open air, use elbow or shoulder. (Using elbow is icky in summer if not wearing long sleeves, hence the need to use shoulder. Plus sometimes sneeze happens so fast all you can do is turn head into shoulder). It means more laundry, But you aren't potentially contaminating surfaces with touch. Have your kids wipe a runny nose on their shoulder, or pull up their shirt, when playing if they don't have easy access to kleenex or handkerchief. Teach them to use knuckle to push elevator buttons instead of fingertip, and use forearm or butt to open public push doors. And to wash hands after coming inside. Clean regularly used surfaces (soap & water is fine) weekly, more often if someone is ill if they can't isolate. Change pillowcases daily when someone has a cold or flu. We also take our shoes off at the door. I have "indoor shoes" and "outdoor shoes". I have a set of gloves in the car I only pump gas with (those handles & touchpads are gross. I looove New Jersey, they pump your gas! Well worth the extra expense IMO).
If you start doing things like these now, by the time it is really important (when she is in treatment/neutropenic) you won't compromise her health. And you don't need to have the expense/health issues of disinfectant chemicals. No need to be fearful, just develop good hygiene habits. A kiss on the neck is just as satisfying as a lip one, it just takes some getting used to.
I agree with SofiaDeo - many of those suggestions are right on target.
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Long before the pandemic, I asked my 3 children (all in their 40s) to make certain to tell me when one of my 6 grand children and 2 great grands were sick- before we were together in the same room. -
We practiced many of the same things that are now standard for COVID-19, social distancing, hand washing, and isolating the sick ones. I never got any infections from them.
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Len
I have had CLL for 16 years and like your mother have been at stage zero with just elevated WBC Have not done anything out of the ordinary regarding being around people who are sick. My Dr who first diagnosed me 16 years go said you are much more likely to die with CLL then due to CLL. So far he has been right
HiI am 56 stage 4 CLL diagnosed 5 weeks ago ... so probably had it for over a year. I have been full time Dad to my 3 and 1 yr through lockdown and when they returned to pre school and nursery for a month before diagnosis. I have had no issues with infections or fatigue. My wife has been off work for 4 weeks but returns in new year , so I will be back to full time dad during my final 4 chemo cycles.
All the best to you, Steve.😊
I was diagnosed 3 years ago at age 67, on W&W I work FT in a public school in a Pre-school class. I have not had any issues. I also have my own grandkids. I just make sure I wash my hands a lot. My lymph nodes are enlarged but no treatments. I feel well. As long as she feels well she is good to live her life. One thing my Dr said early on. When you go to a party be the first to take from the chip bowl etc. lots of germs once people put their hands in it. A thought that stays with me Lol!! Best wishes to your Mom.
We are remote teaching & learning right now. Thanksgiving was just my husband and I. And Christmas will be different I usually host breakfast for 30 people. This year just my sons, DIL, and two grandchildren.
Hello! 12 years ago my mom was diagnosed with CLL - my oldest child was just small (now have 3) we were always cautious about keeping the kids away from her if we knew they were sick. Otherwise there was nothing major we did other than telling the kids to wash hands (and she did as well). Now 2019 I have been diagnosed with CLL as well & my kids are 7,9,14 ... there isn’t much I can do when my kids are sick they need their mom to care for them. So in our house we do our best to wash hands often —- make sure we use tissues or elbows to sneeze & when you are sick my kids stay in their room and have games, food, drink and such brought to them as to not spread germs all over the house. But otherwise we try to live normally when everyone is well. Best wishes to your mom!
Hello aaegan9
Welcome, welcome. You just have to have some new rules with little ones around, like no shearing of drinks, straws or food. Little ones need to wash hands more often. You need to come up with a plan for when one of the little ones are ill. Not to scare you but, 50% of CLL patients pass from pneumonia. Blessings.
I was diagnosed in 2012 but most likely had it for at least several years before. I am now 66 and still at Stage 0 - no swollen nodes, no extreme fatigue, no symptoms really. I was a teacher until 2017 and have to say I haven’t had any more infections, illnesses than before - one bad bout with Epstein-Barr but whether that was CLL related I’ll never know. I have lived life as normal (until COVID , of course) and usually don’t even think about the CLL. I take my Vitamin D, use my hand sanitizer liberally (even before COVID) and see all my doctors religiously for follow up. I hope that I am blessed to be one of those who never needs treatment. Tell your Mom that once the shock wears off she can go on with a normal life, with precautions of course. And the absolute BEST advice I was given when I found this wonderful group in the beginning was, “Stop feeling your neck!!”Kathy
I am on W&W now for 15 years and I am 78 years old. Have 7 grandkids from ages 1 to 25. Have never had to stay away from them any more than anyone else would who didn't want to catch their colds etc. Have had all the suggested shots - flu vaccine each year, shingles etc. Good luck to you and enjoy your grandchildren!!
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