by Michelle G.
Our daughter went from a happy, healthy toddler to almost dying in just a few weeks after being diagnosed with leukemia at 3 ½ years old. I was pregnant and due in a few days with our second child.
Up until that point, our older daughter had all her vaccinations, and we fully planned on having our second daughter vaccinated as well. We had already had bad luck with vaccine-preventable illnesses, and we worried about what our healthy children could get if unvaccinated. While I was pregnant with our older daughter, I had to fight with doctors a little as I am allergic to the pertussis vaccine. Unlike most, I couldn’t get the Tdap vaccine during pregnancy.
We lived in Idaho at the time, which unfortunately has a high number of anti-vaxxers. Throughout my life, in school especially, I have had to be careful about possible pertussis outbreaks. Luckily, those instances have been minimal. However, it was an issue during pregnancy, as had I decided to get the vaccine, I would have had to be admitted and monitored to make sure I didn’t have a reaction. But they couldn’t tell me what would happen to my pregnancy if I did have a reaction. With a heavy heart, I chose not to.
Our Outbreak Experience
Halfway through pregnancy, my husband, despite being fully vaccinated as a child, contracted mumps. I thought there was no way–mumps had pretty much been eliminated, right? However, because I work with children, some medically fragile, and as I had been exposed, I wasn’t allowed to go to work for a week. Also, my doctors were unsure how it would affect my pregnancy if I contracted mumps. My husband and I had to isolate on opposite sides of our house and hope and pray that he didn’t get too sick and I didn’t contract it. Luckily, things turned out all right in that scenario.
When our older daughter was 10 months old, she contracted chickenpox. She was two months too young to be vaccinated against it. For months, we had to deal with her skin healing from the pox. During this time, we moved back to our home state. Days later, the pandemic shutdown began. Getting in to see a new doctor was incredibly difficult, leaving us to deal with a lot of these issues by ourselves.
Fast forward to our older daughter’s leukemia diagnosis and the arrival of our second daughter. We had to worry about vaccines again. We were told that we couldn’t allow our baby to be vaccinated as our older daughter’s immune system would be so weakened by the treatment that she couldn’t be exposed to someone recently vaccinated.
Originally, we were told the baby couldn’t have any vaccines, but after moving back to our home state and changing oncologists, we were told the baby couldn’t have any live vaccines. We were somewhat used to this as my husband’s mom is an organ transplant recipient, and she too is not allowed to be near someone after they have been given a live vaccine.
It felt like an impossible decision. Do we get the baby vaccinated and keep our kids apart for days or even weeks? Or do I risk which child’s health? After a lot of back-and-forth between our pediatrician and the oncology team, the baby was able to get her vaccines. The only one she ended up missing was the rotavirus vaccine, which is a live virus vaccine.
Adapting to a Weak Immune System
Apart from the flu and COVID vaccines, our older daughter has been unable to get any more vaccines during treatment. Unfortunately, her immune system was so weak that when COVID numbers spiked again, the whole family got COVID. Three of us had a fairly easy go of it because we were vaccinated. During treatment our older daughter had to go to the ER anytime she had a fever. She went to the ER three times while trying to get over COVID.
A few weeks later, we had to cancel our first vacation since her diagnosis to a weekend cancer family retreat because she was still testing positive for COVID. It was a crushing blow because we had been so isolated. It was the first time we had something to really look forward to.
Besides being isolated normal everyday things, we also had to isolate ourselves from family members who wouldn’t get seasonal vaccines. Either that or we wouldn’t be around them if they didn’t wear masks. With certain family members, it was a fight, but more family members got on board the further into treatment she got. Neither child was able to go to school/daycare due to the risk of our older daughter getting sick. It helped keep our older daughter away from anyone who wasn’t vaccinated, but it didn’t stop her from getting sick all the time.
However, once our older daughter reached the part of treatment called maintenance and after encouragement from our daughter’s oncology team, we were able to send her to preschool. She wore a mask, washed her hands/used sanitizer all the time. Again, that didn’t stop her from getting sick a lot. But what could we do? Continue to keep her isolated from everything and make her and our mental health worse, or let her be a kid again? Yet again, it was an impossible decision.
Due to her treatment and everything that came with it, I resigned from my job and stayed home for a little over two years. I worked in healthcare. I couldn’t risk bringing something back to her, and we didn’t trust anyone to take care of both our babies while we worked. There really wasn’t a better option. Of course, going from two incomes to one brought a lot of other problems. We had to heavily rely on our parents/families to help us survive.
Our older daughter finished chemo in January 2025. She couldn’t get her kindergarten vaccines and wasn’t able to start catching up until June.
I Wish We Could Count on Herd Immunity
The entire time she’s been in school, she’s worn a mask, and we’ve encouraged crazy amounts of hand hygiene. Besides having to avoid anyone unvaccinated or sick, she wasn’t able to play with sand, dirt, or standing water. We are careful about so many things because the risk of her getting sick is too much.
At her appointment in February, her numbers were good enough that we were able to start lifting some of those restrictions. We were able to let her stop wearing a mask to school or out in the community. The excitement she had at freedom broke my heart. The people who commented on seeing her whole face for the first time made me cry.
That was short-lived because of the rise in measles cases in our state. She has had to go back to washing her hands all the time and wearing a mask at school. She cried when I told her she was going to need to start wearing it again.
For months, she had begged us to go to the Great Wolf Lodge for a family vacation. As a late birthday present, we were set up to go in mid-April. After getting an email from her school and from the state about her unvaccinated status, despite having signed documents as to why from her oncologist, I started to panic again. Google told me that a child in Texas contracted measles at none other than a Great Wolf Lodge.
The panic of having to go back into isolation over the measles and unvaccinated individuals is overwhelming. We want nothing more than for our kids to try and have normal lives. The isolation of the past 2 ½ years has been devastating for all of us. I recently went back to work full-time, and we were finally back to building our lives and moving forward. But the thought of having to pull our kids from school and me from work again is too much.
I’m not sure when we will be able to breathe out with relief that our kids are safe, at least from preventable diseases. It doesn’t appear that it will be anytime soon.
Michelle G. is a pediatric occupational therapist who lives in Colorado with her husband, two kids, and their dog. Her story, like all others on this blog, was a voluntary submission. If you want to help make a difference, submit your own post by emailing us through our contact form. We depend on real people like you sharing experience to protect others from misinformation.
