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Starting Over:
One Child’s Five-Year Journey of Healing and Hope

In November 2003, Jenny noticed that her one year old son, Kevin, a bubbly, healthy normal little boy, was just not himself.  Jenny felt it might be due to an ear infection and made an appointment with his pediatrician, but later her instincts told her not to wait, so Jenny and Mike, Kevin’s dad, took him to the emergency room.

A devastating diagnosis

A CT scan showed an abnormal amount of fluid on Kevin’s brain; he was transferred to a specialty hospital in Chicago where the family received a devastating diagnosis:  Kevin had a brain tumor the size of a tennis ball.  The neurosurgeon had never seen a tumor that large in a child Kevin’s age.   

“They gave us the best and worst case scenarios,” explained Jenny.  “The best was that they could get it all and Kevin would lead a normal life.  The worst would be that he could die.  There wasn’t time to contemplate the future at that point.  We just trusted what they were telling us and prayed.”  After eight hours of surgery there was positive news; they were able to remove 95% of the Type A tumor.  The tumor, however, was cancerous. 

After several weeks, Kevin’s physicians determined that he was stable enough to begin rehabilitation and recommended Marianjoy.  Mike toured Marianjoy, and although he usually has a strong dislike for hospitals, he found the welcoming atmosphere reassuring and decided to entrust Marianjoy with Kevin’s care.

Starting all over again

Kevin’s rehabilitation was going to be like starting life all over again.  Similar to an infant, he was unable to move or roll himself over, let alone speak or sit up unassisted.

“I was scared when we arrived at Marianjoy because I didn’t know what to expect,” Jenny said.  “But the staff quickly put me at ease.  They explained everything, answered all my questions, and were concerned not only about Kevin’s needs,
but also our needs as parents.”

Kevin struggled to relearn even the simplest movements.  Eventually with therapy at Marianjoy, he learned to roll himself over and begin picking up pieces of food from off his plate.  Progress was slow but steady and promising. 

Positive milestones in rehabilitation

In January 2004, on his second birthday, the family received a wonderful gift – Kevin was well enough to go home.  By then he was crawling, could say a few words, and was using his hands more to pick up larger objects like his toys.  He returned to Marianjoy for outpatient therapy to work on his balance, standing, fine motor skills and speech.

In August 2004, Kevin pulled himself up to a standing position, and not long after, therapists had him using a walker.  By 2006, Kevin had the strength and balance to walk unaided.

Creative therapies keep a six-year-old engaged

Today Kevin still receives outpatient therapy at Marianjoy.  He works with his therapists on cognitive issues, coordination and balance.

Kevin especially enjoys working with his therapists while using a Nintendo® Wii™ — a video game for television which simulates a variety of sports with the use of a remote handheld controller.  Using the bowling and boxing games, Kevin and his therapists work on his balance and hand-eye coordination.  “The Wii™ game is all he talks about!” laughs Jenny.

“After every appointment, the therapists tell me how well he did and what they worked on, and give me activities I can do with him at home.  I appreciate them offering me creative suggestions so that it doesn’t seem like therapy to him.”

Thrilled with Kevin’s progress

“The care at Marianjoy is excellent!” Jenny enthusiastically reports.  “When Kevin was an inpatient, we saw the doctor every day and were able to ask questions and discuss issues with her.  The nurses and therapists were very accommodating and allowed me to participate in his care.  If he wasn’t having a good day, they provided therapy in his room.”

“Kevin’s outpatient therapists are really wonderful,” she continues.  “If something isn’t working, they adjust.

It’s evident that Kevin’s best interests are at heart.  We are really thrilled with Kevin’s progress.” 

Recently, Kevin had follow-up appointments with both his neurologist and oncologist who were shocked to see his progress.  “They told me that after the surgery they doubted if Kevin would ever walk or speak again,” Jenny says.  “Now he is running around, acting like any other little boy.  In all honesty, I don’t think I really believed that Kevin would ever walk or talk again either.  Now I turn around and there he is — learning to hop on one foot!”

No better care than at Marianjoy

When asked whether they would recommend Marianjoy to others, Jenny doesn’t hesitate.

“I would encourage anyone whose child is in need of therapy to come to Marianjoy,” she states.  “It’s the best place for rehabilitation.  We never questioned if we made the right decision about bringing Kevin to Marianjoy.  He couldn’t have received better care anywhere else.”