Life with an immune suppressed child
December 29, 2017, while out of state visiting family for Christmas, we received some of the worst news parents could hear about our almost three year old son…”Your son has a malignant renal mass. We are sending you home for treatments.” Our son, Frederick, had been sick for about two weeks prior to Christmas with a stomach bug. The stomach bug resolved in a day, but our son was left weekend and feverish. Doctors tried antibiotics, though in my mama heart, I knew that was not what he needed. After two weeks, he ate his last meal on Christmas Eve, but was still playing. His last day of antibiotics was the day we had planned to travel to visit my folks in St. Louis. The doctors cleared us to go, but while on the 12 hour trip all he did was sleep, something totally unlike our very active son. I called the clinic and was told to keep him hydrated and if fevers returned to go to ER. After we arrived in St. Louis, his fever spiked again to 101.8 and we headed to Children’s ER. After 9 hours and much pushing for tests after they wanted to dismiss him with a virus, we got images back detecting our worst fears. From then on, life would be completely different.
Upon returning to Nebraska and meeting with Oncologists at Children’s he was admitted. After further exploration, a lot of trauma, and a week in the hospital we had the diagnosis of Stage 3 High Risk Neuroblastoma, MNYC amplified.
My husband and I scrambled to figure out how to navigate taking care of our son and working. Because our son would now be immunocompromised, my job as an elementary art teacher put our son at the highest risk and so we determined it was I who would stay home. I still had 20 days to complete over the next 4 months in between traveling for treatments in order for us to keep our insurance and grant me a leave of absence the next year. Those were some of the most stressful 20 days of my life, knowing that anything I may potentially bring home from my sweet lil students as they still learned how to navigate hygiene themselves from anything from picking their noses to covering their coughs to washing their hands properly could become a life threat for our son. I would go to school with as little as possible and bring my lunch in a small hard cased cooler which I would wipe down with disinfectant wipes before leaving the building each day. I had a stockpile of masks and gloves that I wore and changed throughout the day on top of running an oil diffuser a kind soul gave me with some Doterra On-Guard oils in it all day everyday. I wore my smock over my clothes and took off daily spraying it with Lysol before leaving as well as my shoes and clothes. When I arrived home, I would come through the garage (an obstacle course usually), strip in the mudroom and throw my clothes in the washer and leave shoes to sit in the garage. Then wrap myself with a towel before entering the house and darting back to our bathroom to shower. Then and only then could I greet our son and one of my husband’s aunts who so kindly agreed to stay with him.
That two was another issue, as they were still out and about in the community and if felt ill or had been around anyone who was ill, they could not enter our house.
We kept a bottle of hand sanitizer, box of gloves, tissues and masks at our front door (and lotion cause washing your hands all the time sure dries them out!). No one was allowed into our house without screening first and if they were, they had to mask up. This was so hard because we loved to entertain and have friends over. Not even grandparents!
In February, we celebrated our son’s 3rd birthday via FaceTime. Thank goodness for technology to stay in touch with folks! We were allowed to go outside somewhat. Thank goodness also for coldness and snow so Frederick was comfortably robed up in coats and gloves and boots and hats and mask so he could play with some friends in the neighborhood from a distance and they could sled ride in the drift that planted itself in our front yard permanently that season. Bike rides when roads were clear and walks helped with time at home when he felt up to it. His physical therapist suggested getting a small exercise trampoline in the basement for strength training. Fortunately, our basement was unfinished and while he napped I would clean things up to make space downstairs for our own energy expulsion area. I made an obstacle course for him with a little tykes slide, a swimming pool someone donated popcorn to put in for sensory play, trampoline, bean bag toss, hoolah hoops and his tricycle. This helped to have space to exercise for both of us and use it as an outlet to release some stress and anxiety. He’d do his obstacle course, mixing it up from time to time while I walked on the old Nordic Track. We painted, did crafts, worked on letter and number recognition, read books, did scripture studies and read his bible. And on days he didn’t feel the greatest, we snuggled and watched movies and read more books.
Treatments ended February of 2019 right before his 4th birthday and we continued our semi-quarantined existence. In mid-March, he started preschool two days a week, purely for the socialization aspect. I sent him with a box of masks and handsanitizer and a lot of prayer. We had been told that the mask probably did little for contracting anything, but it served more as a reminder to him to not put his hands on his face or in his mouth and a warning to others to stay back. I too, when I would leave the house, would wear one for my own reminder and to remind others. When he came home, clothing was left at the door and a bath was had immediately. In spite of precautionary measures, he managed to still pick up every little thing that went around, including C.Diff. which we still battled on the first part of his Make-A-Wish Trip to Disney. Ah…that was another ordeal! I think half our luggage was personal Prevention equipment. Again we navigated the warm parks in masks and loads of sanitizing wipes and sanitizer wiping down surfaces of rides before entering.
So often folks think once treatment is done the battle is over, but for a cancer patient, it is never over. There is always a fear of will it come back? Will they get sick? Will there be side effects from treatments or cancer damage? Now in 2020, we find ourselves thrown back into similar protocols not because of cancer, but because of the COVID-19 and our son is still sitting immunocompromised. We had just begun to do more in the community, again, with precautionary measures, and he was enjoying school (and I was enjoying the small breaks throughout the week). We were just starting to feel human again. Now we are back sanitizing everything, socially isolating ourselves. We are still taking walks for as long as we are allowed to, but the temptation to play with other kids he sees is so great and so hard to explain to him and them why they suddenly cannot play together like they used to, we usually try to find times when not many folks are out. Not gonna lie, there’s a lot of fear and anxiety wrapped around this. I find myself frequently thinking not if he will get it, but when and how bad will it be. We both battle allergies so every sneeze, cough, headache, slight temperature shift puts me royally on edge. Add to that, my husband works in a medical supply company so he is still out there amongst others. Fortunately, he works in a department with only 4 others who rotate schedules. Still it only takes one person contaminated to contaminate him and thus bring it home to our son.
When we went through treatment, we could rely on others to bring us groceries or on the rare occasion I got away, I could go, wipe everything down when I returned, and then again go strip and shower before receiving my son. Now, everyone is supposed to be doing this, so it makes it even harder, but we are doing the best we can and trying to stay stocked up on essentials that will help us to stay healthy through this. This is quite a challenge when you have fearful people out there who are at much lower risk of getting this than our son hoarding things that they don’t really need. I had to settle for two small Dollar General bottles of bleach to get us through this as I ran out just before this whole thing hit and when I finally was able to shop, everything was depleted. I no longer bring my son to the grocery store, which he dearly loved to go do. We had to shift that too when treatments ended and no longer could I allow him to ride the little germ filled car cart he dearly loved without stopping to use about ten store wipes to disinfect it before he even touched it and then pushed him around praying and hoping I got it all.
Then comes our son’s follow-up scan schedule every three months which he is due to have in May. I’m just waiting for the call saying, we will have to push this back a few months, because traveling 4 hours to the more populated eastern part of the state would require not only scan-ziety, but now virus anxiety. That’s a few more months of waiting and hoping the evil cancer (which has a 50% rate of return, and really aggressive if it does), does not decide to show its ugly head again and make a sneak appearance. The sooner you catch it, God forbid it return, the less disease is present, the better chance of knocking it down again, in theory anyway.
During our treatment journey, I found myself journaling/blogging every night in an effort to document the medical things that occurred, the good, the bad and the ugly memories we had, to give others the opportunity to see what we were going through and how to help us (because I rarely knew myself, when folks would ask), to help others behind us on the journey know how to prepare and to help myself get to sleep at night. That was my stress management…and A LOT OF PRAYER.
Again, I find myself turning more deeply to God through this. Life is a little more busy now with him healthier and older and with more energy than during treatment. While the rest of the world is finding themselves thrown into the spot where were were two years ago, we are just business as usual, just a little more restricted. So often folks would say to us while during treatment, I don’t know how you do it. Know they are seeing. Many are relishing the extra time with family as we did, cherishing each precious moment with each precious person because you don’t know if it may be your last one. Stopping and looking at what is truly important in life and leaving the rest to take care of itself. Relying on God and the love of others from a distance to get you through…and technology! Thank goodness for that to keep us connected! I have seen so many be as creative, or more, than we were to maintain a sense of normal through the shift in lifestyle and do it with flying colors too. Humans are adaptable, but we have to keep an eye on the stress and anxiety as well and keep it in check through healthy habits.
We are fortunate, that we have had a year and a half to adjust to living on one income and that my husband is in a line of work that is still bringing some income in. Still, there are medical expenses that just never go away and that too adds stress and new problem solving strategies. So many families with children with cancer have already had at least one person be put out of work and now with the current situation, the second income may be eliminated as well depending on the line of work the person is in. I know for our family, if my husband does get sick, he’s laid off indefinitely until they put a policy in place. Then it’s only a matter of time before our son gets it.
Families with immunocompromised kiddos are at the highest risk for financial failure. Medicaid often helps in the first year or two of treatment, but then after that, each family with insurance can expect to put out at least $10K a year (not including cost of premiums) in follow-up scans for the next 5+ years. And if they relapse, they are again thrown into the trials of even more medical expenses. One round of cancer treatments can cost what it would to buy a house! Though times are tough for everyone right now, those who have a medically challenged child are at even higher risk and need the support of organizations like Angles Among Us to help with utilities, mortgages, car payments just so folks can afford groceries (at least what’s left in the store) as prices raise. Finances are tight as it is. Add a pandemic and potential loss of more income on top of it and it can be disastrous. Families like ours have been through so much trauma and stress already, this certainly doesn’t help, and for many could be the tipping point in their life. Offering a little relief and peace of mind from kind souls like Angels Among Us can make a huge difference in the financial health, but also the emotional and physical health of a pediatric cancer family. We know it gave us great peace of mind that our mortgage was covered for 18 months and that was one less thing we had to worry about while picking up the peaces of our life and entering our new immunocompromised normal. We are so grateful for their generosity and support, both financially and emotionally. It is such a great community of folks who love and are so sincere in their helping with families like ours.
As of today, our son, Frederick, is 5 years old and has had no evidence of disease since his tumor was resected in the spring of 2018 and has had a year of clear post treatment scans. He is energetic, enthusiastic, compassionate, creative and very busy and certainly keeps us on our toes. We pray this is how it stays and he has a long, loving, healthy life ahead of him. We are battling some blues trauma right now with him due to losing one of his buddies he went through treatments with and a couple other friends moving away on top of the need for being socially isolated again, even from family. Fortunately, kids are resilient and we hope we are finding ways for him to cope through this that will make him stronger to handle life ahead of him, perhaps better than others of us.
Thank you Angels Among Us and so many other organizations who rally around cancer families during difficult times. We can’t thank you enough for being God’s hands and feet.