Treatment Resistance In Pediatric Leukemia Patients

“My child has become more and more resistant to coming into the hospital when we have inpatient and outpatient visits.  Any recommendations to help with this?

Being in and out of the hospital is tough for anyone.  For children, having to go repeatedly and at different times can feel chaotic.  Not to mention, the hospital can be triggering.  For some, it’s a big reminder that they’re sick.  For others, it’s a place where they feel worse.  This, in particular, can be very confusing for children with cancer.  Because naturally, most children are taught the concept that we go to the hospital to feel better, not worse. But, unfortunately, when these patients come in to start their next round of chemotherapy, they typically feel nauseous, tired, and unwell all over again.

I find that this is one of the biggest reasons children and teens have some treatment resistance. They want to continue to feel better but they have tp go through multiple cycles of feeling better then worse before they are able to achieve remission. I recognize this is not easy to cope with so I want to share a few ideas on how to make long clinic days or hospital admissions feel a little more enticing to children. 

Bring in Some Fun

One of the things I know parents like to do is have a “go-to” hospital bag with all the essential items they need for when they’re headed in for visits.  To make the transition back to the hospital or clinic a little easier, I recommend having some novelty items on hand to throw in this travel bag.  Such as,  a new art activity, a toy, or even willingness to buy that new iPad game your child has been begging for.  I’m not recommending bribing your child but adding more recreational options during chemotherapy can benefit their coping.

Another way to avoid treatment resistance is to plan out some activities for the upcoming admission.  For example, if you go to a hospital that has a broadcast studio, set up a time to film something fun with a studio member during your next stay.  Or, coordinate with your Child Life Specialist so you can do something fun! I found over the years that parents would make comments like “he’s been looking forward to making slime all week” or “he’s been asking for you as soon as we got here” when I made a point of brainstorming fun activities in advance.  

Have a Calendar

So this can be a little tricky but helpful if your child is burnt out from the hospital and presents with a lot of treatment resistance.  I mention tricky because there can always be unexpected hospital admissions or last minute visits you need to make to clinic.  However, if you have some of the designated hospital days noted on the calendar, your child has more time to prepare themselves for it.  They have an opportunity to take advantage of their time at home which allows for more of a sense of control.  Having a visual calendar also provides more predictabilitiy for your child which helps them to remain more calm and less stressed.

For those days away from the hospital, talk with your child about what they would like to do.  Maybe, my first recommendation of bringing in some fun activities doesn’t work for your child but having something to look forward to AFTER does!

Check In

Finally, ask the question. Where is this treatment resistance coming from?  

I know this may seem obvious but it’s very normal for parents to come up with a bunch of reasons in their head as to why their child doesn’t want to go to the hospital.  They could be thinking it’s because it’s not like home, because they have to get poked and prodded, and the list goes on.  Regardless of what you think it is, better not to assume. 

So, take some time to sit down with your child before the next time you’re getting ready to leave for the hospital.  Ask what’s been upsetting them about going in for treatment.  Perhaps, it’s something you actually have control over! You just never know!