Future Reflections Winter 2013
by Katie Vescelus
From the Editor: Katie Vescelus is a full-time mom who lives in Indiana. In this article she shares her family's journey dealing with blindness and coping with cancer.
During a routine visit when our younger son, Matthias, was three months old, our pediatrician detected a problem. Matthias wasn't tracking objects with his eyes. At home we had noticed that he responded to sounds but didn't seem interested in looking at things visually.
Our pediatrician referred us to a specialist, who told us that Matthias had a rare form of childhood cancer that attacks the retinas. Retinoblastoma (or RB) can be unilateral (affecting one eye) or bilateral (present in both eyes). Matthias had a very aggressive form of bilateral retinoblastoma. RB is treated with chemotherapy, radiation, laser therapy, cryotherapy, or surgery, or with some or all of these methods in combination.
Until he was nine months old, Matthias underwent intensive chemotherapy, laser therapy, and cryotherapy. No matter how kind the doctors and nurses were, the hospital was a scary place. Often only a curtain separated us from the patient in the next cubicle. We couldn't help overhearing the doctor's verdict or the patient's moans of pain and fear.
The seemingly endless medical procedures greatly slowed Matthias's development. He would start to make progress, but he lost ground whenever he went back into the hospital. For months he had a central line implanted in his chest. The line allowed the doctors to administer his chemo without sticking him over and over with needles. Unfortunately, the line also made it almost impossible for Matthias to crawl. If we put him onto his stomach, he would scream because the line caused him pain when he was in that position.
In spite of all the chemo, Matthias's tumors continued to grow. Besides the main tumors, he developed tiny "seed tumors" in both eyes, so many that the doctors couldn't count them all. We were faced with the choice of subjecting our son to radiation treatments or having his eyes enucleated, or surgically removed.
Radiation might have saved Matthias's remaining vision, but we knew that it could cause serious long-term damage. It might even lead to other life-threatening cancers later on. We also knew that Matthias's retinas were barely functioning due to damage from the tumors, and that enucleation would eliminate the cancer. After weighing our options, we decided that enucleation was the best choice for Matthias. We felt that total blindness was preferable to the ordeal of radiation and the heightened risk of cancer in our son's future.
We have no regrets about the decision we made. We realize, however, that each family must determine its own course. Under similar circumstances, some parents may opt for radiation. We respect the choices that others make, only hoping that they become as fully informed as possible before reaching a decision.
My husband and I imagined that Matthias would go through an adjustment period after he lost his remaining sight. He delighted us with his resilience. Within forty-eight hours he seemed to recover completely from the surgery and to accommodate his vision loss. In the weeks and months that followed, he rushed to catch up on the developmental milestones he had missed during treatment. When he had the surgery at ten months, he wasn't consistently sitting up on his own. Soon afterwards he sat, pulled himself up on furniture, and stood independently. He started walking at seventeen months.
I know that parents often feel terribly upset when they learn that their child is blind. Our struggle with cancer gave us a very different perspective. We rejoiced that Matthias was alive. He was a survivor, and his life stretched out before him. The loss of his vision seemed a small price to pay for the blessing of life itself.
As soon as we realized that Matthias was going to be blind, my husband and I set out to educate ourselves about blindness. We read everything we could find about blindness and blind children. Especially helpful were personal accounts written by successful blind adults. Most of these people, we discovered, grew up with at least one person who had normal expectations for them. After a while we got the hint. We resolved to treat Matthias as we would treat any other child his age. We would do our best to make sure he learned the things that other children his age were learning.
Having always depended on our vision, we had to think carefully about how Matthias perceives the world. We realized how important it is for him to examine things with his hands, and we looked for ways to teach him about the world through touch. At first our efforts were complicated by the fact that Matthias had aversions to a number of textures. For example, he couldn't stand the feel of grass or sand. To help him overcome these aversions, we gave him gentle but repeated exposure to things he disliked. We set him on the grass and talked to him reassuringly when he cried. It wasn't long before he started to play on the back lawn. We discovered that Matthias hated the technique known as hand over hand, in which an adult takes hold of a blind child's hand and places it on an object. He was much happier and more receptive when we brought an object to his hand instead, or took him to a place where he could explore freely at his own pace.
We have found many things that Matthias loves to do. Now four years old, he enjoys standing in the creek and throwing rocks, listening gleefully to the splashes they make. He never gets tired of sitting in the water and playing in the current.
When we go for walks in the woods, we encourage Matthias to touch bushes, flowers, and trees. However, he can only explore the portion of a tree trunk that is within his reach. We realized he had no idea of a tree's height and shape. Then one day we came upon a tree that must have blown down in a storm. We let Matthias and his brother explore it from end to end. They spent more than an hour climbing and playing on that fallen tree trunk. Matthias learned things about trees that he never knew before.
As Matthias grew more curious, we realized that he missed out on many of the things sighted children learn by looking at pictures and watching movies. How could we teach him what a mountain is? or a desert? Other children knew what those terms meant. Matthias needed to know, too.
Our family is widely scattered across the United States. We have relatives in Colorado, California, and Arizona, as well as many other places. On a trip to San Francisco to see my brother, Matthias loved riding the cable car, and he thought the barking of the seals at Fisherman's Wharf was absolutely hilarious. When we visited my mother near Phoenix, Arizona, we all went out to experience the desert. It is fascinating to find out what aspects of an experience will capture Matthias's attention. (The day we went to the desert, what interested him most was his grandmother's swimming pool!) We look forward to discovering his impressions of mountains when we visit family in Colorado.
Because Matthias does not learn to do things by watching other people, it takes him longer to master certain skills than it would take a typically sighted child. Teaching him to dress himself has called for patience and imagination. We enjoy each accomplishment, and we're always looking for ways to teach him new skills.
While we enjoy exploring the world in new ways with our blind son, the pain of our journey with cancer lingers in our hearts. We are happy that available treatments have allowed us to keep our precious son, but we also believe in the possibility of other treatments that won't damage the body as current ones do. In March of 2011, one of my friends from college shaved her head in support of St. Baldrick's Foundation, an organization that raises money for research on pediatric cancer. It is one of the few foundations that supports RB research. St. Baldrick's maintains a list of children who have had cancer, and a person who chooses to shave his or her head does so to honor a specific child. We decided to have Matthias's name added to the list so I could honor him. A representative from St. Baldrick's contacted us, and we shared a bit of our story. I shaved my head in March 2012.
In July we learned that Matthias had been selected as one of five St. Baldrick's Ambassadors for 2013. Because most pediatric cancers are rare, it is challenging to raise funds for vital research. The stories and photos of the St. Baldrick's Ambassadors put a human face on childhood cancer, helping the public understand that research can help real children live and thrive. It is difficult for us to talk about Matthias's long months of treatment, but we hope we can raise public awareness by sharing our story.
Because of Matthias's retinoblastoma, we now belong to two new communities. We are part of the blind community, and we also have a place in the community of cancer survivors. Sometimes people in the blind community are uncomfortable when they learn about Matthias's cancer; they don't seem to know how to connect with us. In the same way, people in the cancer community are sometimes shocked and frightened by Matthias's blindness. There is a tremendous need for education on both sides.
Every now and then, some well-meaning person laments that Matthias's blindness is a tragedy. "He will never see a rainbow," they say. "he'll never see a sunrise or a painting."
"Yes," I answer, "it's too bad he'll never see a rainbow, but why focus on the things he can't do? There are so many things that he can do, and that's what's important." We certainly haven't spent any time or energy lamenting what Matthias's sighted brother, Magnus, can't do. Why would we do that to Matthias?
If we spend our time in a dark, negative place, that's where our child will spend his time, too. Cancer has taught us that life is precious. We are profoundly grateful for every day we share with one another as a family, and for the communities of friends and supporters that welcome us.
You can learn more about St. Baldrick's Foundation by visiting <www.stbaldricks.org>. On March 8, 2013, I will shave my head for a second time to support this important cause. If you would like to susport pediatric cancer research, please go to <www.stbaldricks.org/participants/katiev>.