James Talmadge Stevens talks about three main reasons for prepping: natural disasters, made-made events, and personal crises. Well, we found ourselves in the midst of a personal crisis last March when Isabelle, our one-year-old, was diagnosed with neuroblastoma, a childhood cancer.
Of course we were NOT prepared for that diagnosis (noboday could be), and we were also not prepared with the things we’d need for Izzie’s first 10-day hospital stay. Though we experienced so much help from friends, family, and hosptial staff, we felt a lot like refugees as we tried to function in this foreign environment and cope with the grief and shock of her diagnosis, a barrage of tests and procedures, a stint in ICU, and the start of cancer treatment.
Izzie has remained a joyful, active, normally developing toddler in the midst of a year of chemo, surgery, many scans under sedation, and two stem cell transplants. We still have a long and uncertain road ahead but are trusting that God is in control and that He loves us and our little girl. (If you would like to follow her story on CaringBridge, please contact me for a link.)
I’ve found many of the practices and resources of preparedness to be a huge help in the midst of our journey through cancer treatment. We never know when a simple clinic visit is going to turn into an all-day blood transfusion. A fever could spike at any time and result in an ER visit and overnight stay. At the very least, we know for sure that it won’t be long before we’re back in the hospital for another treatment. Being prepared for these and other scenarios frees us up to enjoy our time at home and helps us feel more adusted when we’re at our new home-away-from-home.
Our bug-out bags have been replaced with hospital bags (though I think they’d actually serve us well in other emergencies too.) I’ve found that if I launder, replenish and repack immediately after each visit, my mind is fresh about what was helpful or unecessary and what we’d like to add for next time. It’s just as easy to repack all the blankets and clothes back in the bags than stash them in our dressers. Most of all I’ve found that this strategy frees up my mind to better enjoy our time at home and to remember all of the other last-minute details when getting ready for Izzie’s next hopsital stay.
So in my trunk (along with my regular emergency food) I keep a bag 3 large duffel bags ready for hospital living: a bed-in-a-bag (you never know where you’re going to have to crash), clothes and toiletries for the rest of the family, and a bag with clothes, diapers, medical supplies, and enough blankets and toys to turn our patient-princess’ hospital crib and room into a happy little sanctuary. (Before a no-sleeping-on-the-floor policy was enforced, we also used to pack two foldable yoga cushions.)
I also assembled a special backpack for our weekly clinic visits, which can last from 2-8 hours depending on her lab results. The morning of a visit I pack a lunch and plenty of drinks and snacks. These I can carry in this bag where I’ve stowed IV-compatible changes of clothing, a blanket, diapers and wipes, special toys and books reserved for clinic trips, numbing cream and bandages (in case her port needs accessed), bandaids, notecards and a book for me, a jacket and some cash.
Having a preparedness mindset and strategies in place has helped make this difficult situation less stressful. It has freed us up to live normally when we are home, and has helped make our hosptial visits more pleasant. To learn more about Izzie and to find other pediatric cancer resources and ideas, please visit my other blog, Always Hope.