I started learning how to help care for my mom when I was around 8. She was diagnosed with breast cancer. I really had no idea what that meant other than I was told that she had cancer and that she was going to have surgery. My dad prepared me for this by making it clear that I had to help my mom when she got home from the hospital. When she got home I was told that she had one of her breasts removed. I knew what a breast was.. my mom breastfeed all of us and I remember my mom breastfeeding my sister.
After a brief stay in the hospital after my mom’s mastectomy, she came home to me and two younger children. She couldn’t lift her arm above her head for a few weeks I remember. I remember the drainage tubes. The pain and crying. I felt sad and confused, however I had to help, and I did. I had to help get things out of the cabinets, feed the dog, make sure my sister was ok, make sure my brother was ok. I was the oldest. My brother was 6 and my sister was 4. Helping to take care of them was fun. I loved the responsibility. However It was watching my dad take care of my mom that set my caregiver imprint and role for life. I remember hearing him telling her “you need to start raising your arms’ ‘, “take your medicine”, “Eat. Eat, it’s important you eat”. He wouldn’t yell. But I remember his attitude towards her being different during the times he was getting her to take medicine or do physical therapy.
Two years later it was discovered she had cancer in her other breast. I was prepared. When I was 15 my mom was diagnosed with uterine cancer. I was prepared. I knew I could help her and make sure she took her meds, I drove her to doctor appointments – I had a drivers permit – but it was really at this time I felt the pressure of the inner conflict of being a caregiver to a family member. I didn’t want my mom mad at me, however I knew I had to encourage her to eat. To take medicine. To do physical therapy. And she did get mad. Radiation and meds made her sick. Eating was difficult for her. I had to trust that we would pull through. After all, I started learning how to be a caregiver at 8.
This became very focused within my soul when my wife Kezia was diagnosed with classic Hodgkin’s Lymphoma, stage 3b in January of 2011. Fear. We had just had a little girl, Saoirse. I had a job, a brand new child, and a wife I loved very deeply – a wife with cancer. Yes I wrote that correctly. I had a lot to manage, however with help from my in-laws and a mission to cure my wife, I went directly into caregiver mode. Kezia went right into treatment and started receiving chemotherapy. During this time we started noticing Saoirse having trouble with her balance and then she randomly developed a black swollen eye. Kezia was doing well. I couldn’t work. I was worried about Saoirse, Kezia, my job and money.
Saoirse started developing bumps on her head and had an extended stomach. Between chemo and doctor appointments for Kezia, work, managing the house and making sure Kezia was safe after treatment, I put all of my focus on our daughter. Something was wrong. I felt it in my gut. A father’s instinct – I was determined.
After a disaster ER visit trying to find out what was wrong with Saoirse, and another week of begging Saoirse’s doctors to figure out what was wrong with her, I finally had to take a stand and insisted my daughter get a CT to find out what was wrong. She finally got a head CT – and a resident ordered an abdominal ultrasound. 5 white coats delivered the results.
Cancer, suspected Neuroblastoma not staged but critical. Stage 2 minimum. (Ended up being stage 4 High Risk Nymc Amplified) and then we were admitted to Boston Children’s.
It took a few days to realize what happened. That feeling is still very much with me. This just completely stopped everything we knew about life. Sometimes it’s still hard to realize. It’s been almost 10 years. I feel it would be an injustice to my entire being if I try to explain how I felt; mentally, emotionally and physically so I won’t try.
Saoirse was diagnosed with the pediatric cancer Neuroblastoma when she was 11 months old on Mother’s Day weekend just a few months after my wife was diagnosed. I was now responsible for taking care of two cancer patients with very different cancers and needs.
I did what a father and partner does – I nested and managed their entire lives – and mine. I was Her dad. Her advocate. Her doctor. Her nurse. A husband to my wife. A caregiver to my wife. I was focused and I was not going to let cancers kill my family. I also had the responsibility of taking the worries and burden of everyones thoughts and opinions about my family’s treatment.. Everyone has an option when a family member is diagnosed – I had two. However as a caregiver we learn real quick to activate our thick skin, hunker down and take care of things.
I finally realized some things my dad used to say: Keep focused. I heard him say that a lot. It’s important to keep focused. It was my responsibility to take it all in, to learn and to help Kezia and Saoirse through some crazy stuff.
I called my dad and asked him how he did it. He told me one simple thing that drives me to this day. “Love. We have no other option.”
My daughter died after 9 months of treatment. I couldn’t save her. She was the first person I was responsible for taking care of who died. I couldn’t save her. I was her strongest advocate and I couldn’t save her. That’s cancer. Kezia went into remission right away, however after our son Lochlan was born she relapsed and has been battling relapse progressive Hodgkin’s Lymphoma and is currently recovering from a bone marrow transplant; which has presented its own new medical issues. Our journey is long from over, however I will continue to fight for my wife, support her and love her the best I can.
Everyone’s journey is different. It is important to respect this. And as caregivers, we often feel passed over as others ask how the people we are caring for are doing. So to the caregivers out there, who put all of themselves and more out there, each and every day, for the ones you love the most – I see you.
How can you help a caregiver today or any day?
Simply ask: “Do you need a hug?” The answer will most always be, “yes please”