Chemo times 2

Some of you have asked about my kids being on chemo. They don’t have cancer, they have juvenile arthritis. JA can cause excruciating pain and deformalities, steal childhoods, bankrupt families, destroy marriages, cause blindness, and even kill. Although for different reasons, the difficulties my family has faced are not unlike the problems of cancer families, but without the public awareness.

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The public’s knowledge and perception of cancer and juvenile arthritis is a touchy subject for the JA community. We know that arthritis can be just as life altering, if not as deadly, as cancer. We also know the general population is not aware of the similarities. It is hard to educate without sounding like whiny, self absorbed divas who want special treatment for their kids.

While both diseases have periods of remission and risk of recurrence, one way or another cancer treatment usually has an end. For many JA patients, treatment is a never ending battle. I have heard heartbreaking stories of JA children who shared infusion rooms with cancer patients and constantly asked their parents when it would be their turn to ring the bell announcing the end of their treatment. For them there is no end.

The mortality rate for cancer is definitely higher. I am thankful that I have not watched my child deteriorate, knowing there would be no recovery. My heart aches for parents who have lost a child. Even in remission, recurrence is a continuing threat. Parents of JA kids in remission have that same fear.

A friend of mine shared recently that her daughter was in remission. I joked that she was asking for trouble. A few days later she was back at the hospital. I felt bad, like it was somehow my fault, though I knew it wasn’t. That friend doesn’t blame me, but the pain is still there. JA parents hurt when one of “our” kids suffers, and we rejoice together on good days.

I won’t pretend to understand what it is like to have a child with cancer. But I do know what it is like to have a child in ICU, their sibling wondering whether they will recover. Both my kids have lived that hell on earth.

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December 21, 2008

Today is a bittersweet anniversary. Seven years ago our family joined an exclusive club that nobody wants to be in but has the most wonderful people on earth.

We have laughed and cried. We have felt joy and pain. We have had moments of complete despair and of grateful thanksgiving. We have met some absolutely wonderful people in the most devastating circumstances. We have been encouraged and have encouraged others.

Our family, like so many others, had a trial by fire so to speak and came out victorious. I asked my son yesterday how he deals with the constant pain and he said it was a supernatural God-given strength. I believe my daughter and I were given a similar mental strength to live the lifestyle that comes with having a special needs family member.

We have all had an education we didn’t want. We have learned medical jargon, coping skills, accommodation law, pain management, and how to maneuver the maze that is public school for differently-abled students. We have gained extraordinary patience, empathy, endurance and flexibility. We have become closer to each other and to God.

I would never wish this journey on anyone, but am beyond thankful for the friends I have made along the way. I have fond memories of a weekend this summer with a small group of these friends in New York City, thanks to the research efforts of the Novartis pharmaceutical company. I frequently spend time online with these friends and others discussing the joys and trials of life with chronic medical issues. Many of us have come close to losing our precious children to a devastating illness that most people aren’t even aware of.

If a nickel was donated to research every time one of us heard, “She is too young to have arthritis,” or “He was fine yesterday,” or “Isn’t she over that by now?”, scientists would have found a cure years ago.

Life is full of contradictions. Life with a chronic illness is no exception. Today I mourn the loss of my healthy son but at the same time celebrate the gift of the life we share with close friends who also grieve.

A Community in Anguish

Human society is built around communities. Most communities consist of either family, neighbors, or colleagues, or acquaintances who share a similar journey. One of my communities was rocked yesterday when we learned of the passing of an eight-year-old girl from complications of systemic juvenile arthritis.

Yes, that’s right. Arthritis killed a little girl.  Let that sink in for a moment.

My heart goes out to the family of that girl who had to make the agonizing decision to discontinue life support for their precious child. I have friends who have come close to losing a child, some on multiple occasions. I have watched fathers in tears describing the struggles their child has faced. I have held in my arms mothers remembering their battle with this horrible illness. I have nodded in sad recognition of the difficulties of other families. I, too have cried in unbelieving grief.

When I hear stories of other parents that have struggled to find a diagnosis for inflammation of the spleen or liver, fluid in the lining of the heart or lungs, high spiking fevers, strange rashes, joint aches, morning stiffness, or swollen lymph nodes, I realize how fortunate my family is. We have not had to deal with joint replacement surgery, eye inflammation that can lead to blindness, ridicule and judgment from family and friends who don’t believe the diagnosis, intolerant educators blinded by their ignorance, unavailability of trained pediatric rheumatologists, and a medical system that can make it almost impossible to obtain expensive life changing treatments.

Yes, we are fortunate. In spite of the loss of innocence of both my children, in spite of the dozens of medications my son has had to take in the last seven years, in spite of the hundreds of hours we have spent in doctors’ offices and hospitals, in spite of the thousands of dollars in lost wages, we are blessed. I have never wondered, although partially from denial, whether my son would live to see his next birthday. I have never had to choose between paying rent and buying medication. I have never lain awake nights wondering why doctors can’t figure out what is wrong with my child. I have never feared for my job because of too many medical appointments. Unfortunately, I have heard numerous stories of exactly these concerns.

There are other, less tangible ways we are fortunate. We have made lifelong friends in an instant. We have become stronger and more compassionate. Our family has become closer and more resilient. We appreciate the little things more. We don’t take our health for granted. Our faith has been strengthened.

Many people who learn of our situation feel sorry for us. While I appreciate the sympathy, it is unnecessary. I do not look at this as a curse. Yes, there are painful moments, such as this week. I and thousands of parents like me will never stop fighting for our children. But most arthritis parents have not lost a child. It profoundly wounds all of us when one does.

Healthy is all relative

Are you healthy? Is your family? Do you know what healthy really means?

I wish I had appreciated the health our family has lost. My son used to be an excellent athlete whose biggest worry was whether his uniform and water jug were clean. My daughter used to be a dancer whose toughest decision was whether to take jazz or hip hop. I used to enjoy the American dream of a husband, 2 kids and a house in the suburbs. All this was before my neurological differences caught up with me. Before my daughter developed crippling anxiety. Before my son was attacked by his own immune system.

Now we see healthy as a day when he doesn’t need pain medicine to get moving. When she can go to school without a panic attack. When I can talk myself into going to work, then stay focused enough to get there. Healthy is a week when I spend more time at work than in a doctor’s office.

To some, poor health might be having a sore throat for several days, spraining an ankle, getting the flu, or being fatigued from too many short nights. I don’t want to minimize those challenges, especially if you aren’t used to anything less than perfect health. If the worst you know is a broken leg, then a broken leg is pretty serious. I wish the worst I knew was a broken leg.

Whatever your circumstance, take the time to appreciate the abilities you do have. I am grateful that we function as well as we do. That we have proper medical care. That we have insurance to pay for necessary medications. That I have friends and family I can count on. I know it could be much worse, and I thank God it isn’t.

Almost a man

Almost 18, working and going to school, driving, shaving and girl watching. Video games when he has time, doctor appointments more often than a kid should have to endure. My son is one of the strongest people I know. He lives with chronic pain and never complains. We only know he is hurting when he asks for help, then we know it is bad. He is compassionate, follows his convictions and gives of himself when he can. Making friends easily, showing respect, and watching out for his younger sister, he is an inspiration to anyone that gets to know him. Now if we could just get him to quit bothering the cat…

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