The True Value of Suffering

By Kevin Loftus

The odyssey of a family battling for the life of a child who suffers from leukemia, meningitis, strokes, being comatose, paralysis, seizures and flatling three times. Having overcome the initial acute medical challenges and in attempting to find a sense of normalcy in everyday life the family struggles with their experiences in dealing with careers, insurance companies, school systems, teachers, doctors and lawyers. Told through the eyes of the young girls father and central to the story are the devastating blows to relationships, the financial and emotional struggles, and the lifeline that Christian faith provides. The vacillations in health and the years of suffering provide a genuine lens into a faith walk that goes through numerous deserts; the oasis of which is undeniable, dramatic and promises the reader that God is intimately connected. Insights gleaned along the way while going through years of seemingly insurmountable challenges are shared in a positive, uplifting manner focusing on the understanding, joy and inner peace they ultimately led to.

• Language: English
• Publisher: Xlibris US
• Release date: Feb 1, 2007
• ISBN: 9781469101200

Kevin Loftus

Kevin Loftus is a graduate of Waynesburg College, and has spent thirty five years in the financial services and the non-profit fields. Kevin has served on numerous boards such as The Schwartz Center for the Arts and Main Street Dover, and is currently employed as the Director of Development and Communications for a Health Center. Kevin has also written a short story titled, The True Value of Suffering and a novel titled Depth of Deception. An avid swimmer, jogger, and golfer, Kevin lives with his wife, daughter, and two step-sons in Wyoming, Delaware.

Book preview

Chapter 1

December 14th, 1994

M ID-DECEMBER IN NORTHERN

Florida is like an extended fall with cooler mornings and crisper air to start the day, but nothing that actually resembles a northern winter.

Last night was interrupted with my daughter, Julia, waking up and complaining about stomach cramps and a headache.

I feel sick and my stomach hurts. My head doesn’t feel good either, she said. Nothing to get overly concerned about; a quick check of her temperature revealed a low grade fever of 99.4. Julia’s medical history up to this point had included some recent ear infections and a bout of pneumonia several months ago. Julia is a pretty, blond-haired, blue-eyed little girl who had just turned four this past August.

It’s probably just something she ate that she’s having a reaction to, I said to my wife, Raquel, as I slipped into bed next to her.

I think you’re right, but I’m going to take her in tomorrow and have her looked at, replied Raquel. The rest of the night was uneventful, and Julia was sleeping as I left for work.

Later the next day Raquel called to tell me they had taken a blood sample at our pediatrician’s off ice, and that the doctor had asked her to take Julia to Nemours Children’s Hospital in downtown Jacksonville for further evaluation. I started to sit up a little straighter as she continued; it was clear that her voice was strained, and she was scared.

They won’t say what’s wrong with her, only that her spleen was enlarged. They’re telling me I need to take her to the Hematology & Oncology Department at Nemours right away. Shawn, that’s the Aids and Cancer ward…

I was stunned as I listened to dead air, and neither one of us said anything for several seconds. How could Julia possibly have anything as serious as either of those things?

I don’t even know if I can drive I’m shaking so bad. How can this be happening? Can you come and get us and drive us to the Hospital?

It took me a few seconds to picture where the doctor’s off ice was in relation to my off ice, and then where the Children’s Hospital was located in relation to both. As I was doing that, I was also thinking about what Raquel had said about Julia’s spleen being enlarged and how thrown I was. It all seemed ominous.

I’d like to, Raquel, but that’s not going to work if we need to get her there right away. It would take me an hour to get to you, and then another hour to get to the hospital. You need to drive her there from where you are. I’ll meet you there. You can make it, just drive slow and easy. I’ll meet you there as soon as I can. I’m leaving now, I assured her.

Driving north on I-95 to the hospital not knowing what lied ahead or what was wrong with Julia, I was aware of everyone around me just going about their business on a day like any other: no crisis unfolding, no major life event occurring, just the normal day-to-day grind. Life is like that: when something of monumental importance to you and your family happens everyone else is just having a normal day. Perhaps I was more keenly attuned to this perspective with Raquel having been diagnosed with breast cancer three months ago. She’d had lumps looked at before, but they always turned out to be benign. Her last examination was done in Ft. Lauderdale by a specialist recommended by her gynecologist. The diagnosis was devastating news, not what we were expecting, but somehow we just thought the lumps would always be benign, and that we were simply going through the motions in getting them checked.

After the initial shock wore off, Raquel picked her doctors’ brains, and read everything that she could to educate herself on her condition. To her credit, Raquel made up her own mind about what was best for her, and how she would deal with her illness. From what they’ve told me, and what I can f igure out, my odds of living f ive years are sixty percent if I do the chemotherapy and radiation treatments and fifty percent if I just have a lumpectomy and change my diet. For an extra ten percent I’m not letting them put me through that, she told me one evening.

Raquel’s surgical procedure was performed back in Ft. Lauderdale, a month after her diagnosis, and had gone well. Her doctor was optimistic and believed that he had gotten everything malignant, but the reality, as he explained it, was that since the cancer cells were already present in her lymph nodes there could be no real assurance that things would be f ine. Even so, Raquel insisted we go on our previously planned ski vacation to Breckenridge, Colorado. We had never been there before, and had been looking forward to it since booking the trip earlier in the year. Raquel wasn’t going to cancel the vacation because skiing was something she had always wanted to do, and she wasn’t going to miss the opportunity to go.

I might never get another chance to do this, she said one night after dinner. It wasn’t something I wanted to think about, but I realized it was what she hadn’t been saying when the conversation just seemed to trail off between us. She had started to look at things a little differently since being diagnosed.

It turned out to be a great vacation, and coincidently our ski instructor was a breast cancer survivor herself who admired Raquel’s courage, and was just wonderfully over-protective of her on the slopes.

Watch out for those out-of-control snowboarders. Half of them haven’t had a lesson and can’t control themselves at high speeds.

It was good advice, and we enjoyed the week without being wiped out by anyone. We could see the sunlit snow-covered mountains while sitting in the Jacuzzi in our room, which provided a soothing and relaxing atmosphere that we enjoyed while sipping wine in the late afternoons after a day on the slopes.

When I met Raquel and Julia in the parking lot I realized we had been directed to the right area of the hospital. Inside the hospital in the Hematology and Oncology section, Julia was attended to by nurses who were warm and friendly towards her. They knew she was scared and were making a real effort to comfort her. It was something that Raquel and I appreciated. We were both a little on edge after having been in the waiting room with other parents whose children were wearing scarves or hats. Milky white complexions surrounded us, and there was not a tanned child in the room; in Florida this was just a bit unsettling.

Parents never expect to depend on someone else to comfort their child. It just sort of happens. We were reluctant to leave her but she seemed comfortable, and we were asked to wait in the consultation room. We wanted to know what we were dealing with, and we were hopeful that this was just an overreaction by her pediatrician.

I imagined Julia’s perspective as she looked up to see her Mom and Dad walking out of the room she was in. Her Mom and Dad looked back, sort of waved, and smiled. Her parents seemed scared, but she wasn’t sure of what. The nurses took out another game, and it looked like fun, her Mom and Dad were gone when she looked up again.

Dr. Joseph Royce entered the consultation room where Raquel and I had been waiting. Up until this point it was really the nurses and receptionist we’d been talking to. Holding a clipboard with some papers attached to it, the doctor glanced at them brief ly, inhaled slowly, and calmly said, I’m sorry to have to tell you this, but your daughter’s blood tests indicated an extremely high level of white blood cells and blasts, and this is indicative of Acute Lymphocytic Leukemia. He had this conversation before, but of course we hadn’t.

But that’s cancer! She was just a little bit sick last night with a mild fever.

Leukemia is not cancer, it is a serious blood disorder, but it is not cancer. It is a different type of disease, he said looking straight at us.

How can you be so sure? She looks f ine now, and she has not thrown up since yesterday.

Your daughter’s high level of white blood cells tells us that the leukemia has progressed signif icantly, and we need to treat her immediately. It is very fortunate that you brought her in when you did. We need to start her on the treatment that offers the greatest chance for success now, and every minute counts.

Disbelief and shock started to overwhelm me as I considered what he was saying and what it meant.

How can my daughter come down with leukemia three months after my wife has been diagnosed with breast cancer? I felt a little dizzy as I was asking him this.

How am I going to deal with this was what I was thinking. I was scared and I knew I was about to lose it completely. Dr. Royce sensed this as well and wore a look that while sympathetic was measuring at the same time. I could imagine him thinking: Do they know what they’re in for? Of course not, how could they? Will they have the strength to handle it? Maybe, but what is their support system, will it hold up?

I’m sorry, I know this is hard, he said, I’ll give you some time to talk together alone, he drifted out slowly.

In the room I noticed for the f irst time that it was really an examination room with a table covered with a paper sheet. Some of the cabinets were opened revealing the medical supplies stored in them, and there were posters on the walls showing the immune system and how it works. Funny, how peoples mind will allow them to drift to almost anything for a while to provide themselves with a few moments of peace before they face what they know they must.

I looked at Raquel, I saw the sadness and fear in her eyes, and I knew without her saying anything that she was thinking the same thing I was: I might lose them both.

Chapter 2

Leading up to Diagnosis

T HE PEDIATRICIAN’S OFFICE on

San Jose Boulevard in Jacksonville, Florida was a new modern looking brick building with nice landscaping around it. The ride over here was the usual snarl of traff ic encountered going from the beach areas, via Jay Turner Butler Boulevard, to the south west side of town.

I don’t want to go in, Dad I’m tired of this place. How come I have to keep coming back here all the time? Julia asked me.

We have to talk to the doctor, and f ind out why you keep getting ear infections Julia, I told her as we were headed towards the front door.

Inside was the standard sick and well waiting room holding areas for the kids unfortunate enough to f ind themselves there. I’d never really been quite sure what the cut off is for determining when to put your child in the sick waiting room section. Is it fever over ninety nine degrees, a runny nose, not being able to sleep the night before? Who’s to say anyway? It’s not as if a staffer will be found in the waiting room directing the pediatric off ice traff ic. Everything seems clearer after the fact. What a person might consider obvious in hindsight might have been discerned earlier, but there is also a chance that person really did not want to know. Maybe, comfort can be found in unknowingness; a hope that whatever it could be would just go away and let life get back to normal.

For months now Julia has been on one antibiotic or another for ear infections. It seemed as if we were back at the Pediatrician’s off ice every f ive or six weeks for the same low grade fever, sore throat and running nose.

Your daughter should respond to this antibiotic; it is very effective for children her age. We were being advised by a new doctor that we had not seen before. Raquel considered and then asked, Why does she continue to develop ear infections? She has had more then any of the other kids her age. What is causing them to keep recurring?

It is not unusual for a child to keep getting ear infections especially if the child is around other children. Does Julia attend day care?

Yes, but I’ve spoken with the other mothers, and no other child is getting ear infections as often as Julia. She is also not gaining any weight. She has weighed thirty f ive pounds for the last six months, and she is eating well. Something is wrong! You’re just treating her for the obvious symptoms, Raquel responded. She was angry and upset, and it showed.

Dr. Jensen was about forty years old, with a few strands of gray starting to show. On the surface she appeared to have been at this long enough to give us a level of comfort that you wouldn’t necessarily get from someone you suspected to have just f i nished up an internship somewhere else. But we’d only known her for f ive minutes, and she came across as if she was getting a little f lushed