Before I get to the logistics of how to raise a medically fragile/compromised child, let me acknowledge the MANY written pieces on the subject People much more educated and experienced than I am have written informative and emotional pieces warning us about the fragile nature of the immuno-compromised. I will talk about logistics, but first I MUST address the real issue– the spirit and heart of the matter.
Adjust your mindset: This is important. Very. First, cancer is scary. It is a new kind of culture shock. As you learn new medical terms, memorize the route to hospitals and clinics, learn the hard and difficult patterns of your child’s side effects, everything will feel new.
One of the hardest tasks is learning how to handle people. This applies to relationships, immediate family, helpers, medical teams, those you tell your story to and even those who wound you. New diagnoses mean new values and new boundaries, which impact all relationships. This is one of the unidentified challenges that comes with crisis.
Others will rush to your aide, offering anything you need if you would only ask. You would ask, if only you knew. The challenge is that spending time with people and just sitting in grief is exceptionally hard. New tasks and needs pile on with highest priority and cause overwhelm.
The gravity and urgency of a child being treated for cancer, if you will excuse the cliche, puts priorities in perspective. The “normal” things aren’t possible, or they come with the cost of exhaustion. When William and I lived in relative isolation for 6 months, I felt an enormous desire and pressure to make time as a family memorable and wonderful. In my desire to create stability or Jonathan, I felt guilt and frustration that I missed class parties and trips to the zoo. If we could go to church, we became overwhelmed with our friends wanting to hug us and talk to us. Trying to connect, answer deep and challenging questions and trying to feel “normal” all in the space of a walk from the sanctuary to the car filled me with pressure.
Toward the end of treatment I became diligent about identifying and naming what actually had to happen and what I could take off of my plate.
This time around, I made notes of the following:
- What helps each family member rest? 2. What people help encourage our souls? 3. What tasks can I outsource? 4. What things must be done that ONLY I can do? 5. How do we engage with people when we are isolated?
There was a deep sense of loss for me when we couldn’t be around people. (Extrovert problems!) I mourned that we couldn’t attend Christmas services, go on family outings, or go to school. I felt horrible guilt that I couldn’t take the boys to therapies that was supposed to help them. Even recycling the PTA fliers and requests for help hit a twinge of pride– I simply couldn’t do it all. Someone did say I was probably glad to have not done dishes for six months while living in a hospital room. That was one silver lining I couldn’t see. I’d do ALL the dishes to get my kid leukemia-free.
What I eventually learned was this is a TRADE. We missed our family and friends, but we developed deeper friendships and we learned to LOVE our nurses. (God BLESS them!) We missed holiday parties, but we had visits from carolers and a Christmas Day feast in the hospital. We danced at fundraisers and connected with remarkable people. It’s like being stationed in a foreign country– to receive something new, your hands must be emptied of the old. ( Put down the hot casserole dishes first, if someone wants to hand you a Crock-Pot.)
I tried to keep things familiar and consistent to feel normal. Sometimes that worked and it was wonderful. Other times it didn’t work at all. Give yourself grace when things don’t work right away, Friend.
Dealing with SICKOS:
Having an immuno-compromised loved one during cold/flu season feels a bit like being the only doctor who recognizes Germ Theory in a trench. There are two groups of people: those that comprehend the severity of the situation and those who don’t. No one wants to get your kid sick, but precautions just won’t be taken. In this instance, you MUST take drastic measures to protect your family. I’m talking Wakanda-force-field, Cold War bunker, Haz-Mat suit.
School is full of the flu and strep. It is full of kids who spent the night throwing up but “seem fine” today. The Motrin-spiked low grade fever kid WILL be there. If you have a question about your child’s counts or energy, keep your kid home. This is the time you an be dramatic– this literally may end up as a life or death situation.
No matter how much you trust and love people, assume a defensive posture. Our 81 year old neighbor was warned of the danger of germs but still grabbed him for a hug… and then when I was helping Jonathan she kissed him on the mouth. In my stunned second before I could grab him away, William actually smacked her in the face and pushed her away. Mother of Pearl. We forbade all visitors after that.
However, our people who “got it” would scrub in, wear masks, bathe in Lysol and make meals as possible. They kept are away at the risk of a sniffle. They loved from afar and loved us well.
Family and holidays:
Your family members are struggling with the situation as well, and may react differently. There will be hard emotions and misunderstandings. Give grace and forgive.
People will want to see you, and it is hard to say no. ESPECIALLY over the holidays, people travel ill. People who feel healthy may have a bug- their bodies can fight it. Without an immune system, it becomes a major illness.It is okay to not travel or see anyone for Thanksgiving or Christmas.
Listen to the voice of experience:
Moms told me of 10 and 14 day hospital stays because of “little colds”. I took precautions seriously and I still nearly lost William.
In William’s final month of chemo he suddenly became ill. His skin peeled and bled off of his cheeks. He vomited and messed up sheets so frequently that we stopped using them. He cried constantly and could not sleep. Despite being on hospital isolation precautions (think Ebola) he contracted a deadly bacterial infection that nearly killed him. I will never forget the moment the consistent calm of the nurses changed into an intensity as they demanded a surgeon and morphine. Will screamed as I was asked to leave the room. Sweaty from the paper gown, mask, and gloves, I ripped them off and breathed deeply as I sat in the hallway, collapsing with my head in my hands. Above me a sign was taped to the hallway: “NO VISITORS UNDER AGE 12 or ANY ill visitors!”
In the midst of the fear and panic, I was helpless. Still, it didn’t last forever.
No amount of precaution and careful planning can fully protect you. It is not all up to you, so don’t put that pressure onto yourself. Fear not. We weren’t alone and neither are you. Call if you need Germ-x and encouragement.
Remember, isolation doesn’t mean you are alone.