Debilitating neuropathy led to Mark's diagnosis of WM, and he has been subjected to many rounds of plasmapheresis and a number of demanding treatments without great success.
Davey Studios is the commercial venture of Megan Davey and her husband Mark, an artist who specializes in mural painting. Debilitating neuropathy led to Mark’s diagnosis of WM, and he has been subjected to many rounds of plasmapheresis and a number of demanding treatments without great success. Megan’s own words portray the impact of WM on the family as she tells how each of her young children reacted to their father’s illness. Readers will admire the pluck and spunk of Hannah Davey who, in effect, created her own support group when she felt the need to be able to talk frankly about her father’s disease with her own contemporaries.
I have become a fortress, guarding my fears from the one I consider my best friend. I hide my worries and exhaustion, or so I tell myself, until I see a reflection in the mirror and then I think, “Who is that woman who has aged so?” Her hair is gray too soon, her eyes dark, her face set with lines that were not there a short time ago.
As a child I had a keen sense of death and loss. I lost a grandfather, to whom I was very close, at the age of six. To me he was a rock, and I still cherish the quiet times I had with him. He showed me how the “great” typewriter put his thoughts into words that became sermons. When a bird he was caring for was killed, he shared with me the importance of taking care of the smallest of creatures. And so, not surprisingly, I was already aware of the gift each day holds. Yet to hear a time frame for the one who carries your heart, the father of your children . . . that changes everything.
I find myself constantly researching for the latest new drugs, the best recipes, or the vitamins that may hold the key. I research, read, study, compare, and search. I am the first awake, and the last to bed. I keep the house quiet when needed. I complete data charts, make appointments, and e-mail for test results. Ever vigilant for signs that anything may be amiss, I watch for energy levels, unusual skin issues. I cope with his forgetfulness and wear patience like armor. I try to be aware of his mood, and I am a barrier between his mood swings and the children.
The children. This is the hardest part for both of us. Our children were six, ten, and thirteen when Mark was diagnosed, and each child has had to deal with this in their own way. Our youngest, six-year old Stella, was not too worried in the beginning. She only knew Daddy didn’t feel well, and her way of showing affection was to cover him in stickers. Always. Such a shy, tender heart—–and Mark was never without Stella’s stickers!
Once when he and I travelled to Mayo Clinic and he was in a wheelchair due to peripheral neuropathy, he realized he had lost a sticker given to him by Stella. I had to run up and down the sidewalk until I finally spotted the sticker in the street. I saw that finding the sticker and returning it was of the greatest importance to him.
Since that diagnosis 3 1/2 years ago, Stella has been a source of a “child’s guiding light.” She has since put the dots together and realized that her Dad is dealing with an illness that is potentially fatal. She has dealt with anger towards God for allowing her Daddy to have cancer, and I have shown her examples of others who wrestle with their beliefs and assured her that this is perfectly normal and healthy. I have never felt that I should tell the children more than they need to know. The most important thing is that they know they can share their concerns and worries with us. I would not want them to try and carry this alone.
Our middle child, Hannah, was 11 when we came home and told the children that Daddy had cancer. She was the first one to run over and hug him, yet she never wanted to talk about it. She would still rather not discuss her Daddy’s illness, but I know she thinks about it as I come across her drawings and writings. About two years ago she came to me with a seemingly easy request to fulfill: “Please, Mom, I would like to find a group of kids that I can talk with.” She had adults in her life she could speak to but no kids her age to empathize with her. So I began searching, and to my surprise I found not one group in the entire Memphis area for children with parents who have cancer.
There are groups for parents of children with cancer, siblings with cancer, and children who have lost their parents. But there was no group for a child who is living with the potential loss of a parent, a loving parent who provides such an important sense of security in a child’s world.
Hannah then took it upon herself to start a group at her middle school. At first her request to form the group was rejected, but she wrote a moving letter to the principal and the school counselor, and soon they had a group!
One of the first things I recall her saying after the initial meeting was, “Other families tried juicers, too!” It was this connection that made the children feel that their families were separate from others. And this sense of being separate joined them together.
Since then several students have lost parents, bringing new issues to deal with and a realization that not all cancers are curable. The group has continued into high school. One of the boys in the class still meets with the group even though he lost his father. He told Hannah that he feels like he can speak freely about the struggle his family is facing now and about his worries for his Mom.
Creating this group, and filling not only her needs but also the needs of others, has been a large part of Hannah’s constant healing. Long-term illness is like having a scab that doesn’t have a chance to heal. It is constantly getting “scratched,” and just when you start to see the new skin healing underneath, something happens and the wound is fresh again. Our hearts are in a fluid state of healing, breaking, and healing. And breaking.
Which brings me to our only son, our oldest, Grant, only 13 when his Dad was diagnosed. That first night, after everyone had gone to bed, I sat next to him as he asked me, “Mom, is it curable?” I had thought I would have a little time before he asked me the hard questions, and I was not prepared with any comforting answers as I was still reeling from hearing “3 to 5 years.”
I took a deep breath and silently asked God for guidance. I received the answer I still cling to today. No man knows our time here on earth. All lives hang by a thread, and we must live every day as if it is our first and last.
I was honest and shared with Grant that the doctors did not yet have a cure for Daddy’s cancer, but we were blessed with time, and that is more than some. We were blessed to have our eyes opened to see the true gift in every day. But he cried, and I cried, and we have all had moments of grief since.
Which brings me to myself, I guess. Here are a few things I have noticed. Rare is the person who asks, “How is the caregiver doing?” By the nature of his illness we seem to revolve around Mark. It seems that when a wife is diagnosed with cancer, people jump to help with the children, the cooking, the housekeeping, and even with things like make-overs. When the husband is diagnosed with cancer, few ask about car maintenance, yard work, house repairs, or any of the tasks already noted. Often the wife will not bring these up as they add stress for her husband, the patient. Possibly this is because a wife fears her husband will attempt to do something that is risky for his condition, or because men do not like to be seen as needing help. Or perhaps women are just expected to take on more, as they typically do.
The grieving process begins at the word cancer and I don’t know that it ever ends. You grieve for your life before the diagnosis, you grieve for the loss of the life before multiple doctors, chemos, waiting rooms. You grieve for a life without so much pain and fear.
So if you should ask how we, the caregiver that is, are doing, and we hesitate, it is because that answer can change so quickly. And, honestly, some days we just don’t know. At one moment things can seem fine, and for that moment we may forget, but in a split second it can change. A blood test can come back with bad news, a low white count can mean cancelled plans or, worse, back to chemo.
The children learn quickly about germs and watch their friends for any suspicious sneezing. Other children and parents may not realize how stressful this is for a child. But this child knows how sick their parent will be if they bring home that virus. On the other hand, these children learn to love deeply. They see the value in spending time together. They are wiser than their peers and empathetic as well.
Everything in life holds a balance, and we naturally search for the balance in the cancer diagnosis too. We have to. It is our number one job as caregiver, to see that our spouse, and our children, and sometimes even our selves, find the balance. The balance to survive.