Ask the Doctor Question:
My husband has had CLL for over 12 years now and is still on Watch & Wait and nearing 75 and presently quite thin. He hasn’t seen a doctor for some time but is gathering information and should have an appointment soon with a CLL specialist.
My question is, is it safe to see our 20-month-old granddaughter if we stay outside?
Her parents are not into getting the vaccine and the baby’s dad had COVID last month. He is over it now and negative. We have tried to summon their help and support by getting vaccinated but they’re not having it. We miss our granddaughter terribly and are afraid she will forget us.
What can we do? What must we NOT do? Any help or guidance would be so appreciated. We feel a bit lonely and isolated.
Answer: We certainly understand your concerns and can relate to your loneliness and feelings of isolation.
A couple of things to address in what you mentioned below. First, you mentioned that your husband hasn’t seen a doctor “for some time.” Anyone with CLL who is in watch and wait needs to have close monitoring with labs drawn every 3-6 months to establish trends in the results. The watch and wait period should include an active observation time period where it is so important to closely watch labs and symptoms and wait for when treatment should begin. We are so glad to hear that he is going to have an appointment with a CLL specialist very soon! You mentioned that he had become quite thin, and since weight loss can be a reason to begin treatment, we just want to urge him to be seen as soon as possible. You can find lots more information on watch and wait on our website here: https://cllsociety.org/?s=watch+and+wait
Second is regarding your question about your granddaughter. That is such a tough dilemma that many with CLL are going through right now! We did write an article where we shared a risk assessment tool from the CDC that can be found here: https://cllsociety.org/2021/04/cdc-graphic-guidance-on-safer-activities-during-the-covid-19-pandemic-how-it-applies-to-cll-patients/. While there are some things you can do to mitigate the risks of seeing her, the situation will not be risk-free no matter what you do. We cannot make the determination for you or your husband, as you both have to determine what level of risk you are willing to take. However, we would like to share some suggestions that might help reduce the risks:
- Know your husband’s response to the COVID vaccines. Has he had his quantitative spike protein antibody levels drawn so that he knows if he responded to the COVID-19 vaccine or not? You can find lots on our website on antibody testing and read about how commonly, those with CLL have not mounted much of an antibody response to the first two shots.
- Make sure both of you have had your boosters. We are hearing many more stories of those who did not initially respond to the first two shots having higher antibody levels after the booster.
- Request that her parents both get PCR testing 72 hours before you all plan to meet. However, remember this is not fool proof. This just means they did not have a detectable viral load at the exact time they were tested.
- Both of you should wear a tightly fitted N-95 mask anytime you are around anyone outside your home, especially when you know they are unvaccinated. And request that they wear masks if you do decide to get together (with exception of the baby of course), even if it is outside.
- Stay outside the entire time and socially distance at least six feet away at all times.
- If you do decide to meet with them, you could consider getting PCR testing done on yourselves 3-5 days after your meeting just to have an added level of reassurance. This is also a good idea because if for some chance either you or your husband were to test positive, getting monoclonal antibody therapy right away is of the utmost importance to improve outcomes, especially in the immunocompromised.
Please remember, your son-in-law’s natural infection does not equate to him being considered a “safe” person to be around. Mainly because the degree to which he mounted an immune response is incredibly variable, dependent upon how much his viral load was.
And last, but not least, please make sure you and your husband have sat down together and filled out the COVID-19 checklists so you can create a personalized COVID-19 Action Plan should you ever need it. You can find those checklists and the directions for using them here: https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-lymphocytic-leukemia-cll-preparing-for-pre-and-post-covid-19-exposure/