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.

download.jpg

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.

Advertisements

December

The weather was nice today. Like 75 degrees. On December 11.  It’s hard to remember Christmas is 2 weeks away when I don’t even need long sleeves and the thermostat in the car wants to turn on the air conditioner (although my friends in Australia would think it is chilly for this time of year.)

It’s easy to remember it’s December when I look at my calendar. On top of my regular work, medical appointments and handbell rehearsals, I am running lights and sound for a Christmas play, have a couple extra tech shifts at the church for special programs, and am playing in the handbell choir for 2 services on Christmas Eve. Whew!

If you are anything like me (and half the general population) it’s easy to meet yourself coming and going in December. I (and the aforementioned general population) also have to consciously carve out time for prayer, relaxation, meditation, or whatever you to do keep yourself centered and sane.

No matter what keeps you busy this time of year, make sure to spend quality time with those you love, and to take that time for yourself. Don’t get so caught up in the busy-ness of the shopping, decorating , cooking and celebrating that you find yourself exhausted before the holiday arrives.

Well, the play is starting. Catch you later. After some quiet time.

 

Come to the dark side

I run tech for community theater. You know, turning lights and microphones on and off, playing sound cues, and such. I am in “tech week” for a show that opens Friday. This means rehearsal every day putting all the technical details together. Lights, sound, costumes, musicians, sets, props…anything and everything. By Thursday we need to be ready for a preview audience (what some people would call the dress rehearsal.)

I was at the theater before last night’s rehearsal chatting with the light and sound designers. I am operating the sound board, which for this show means 7 body mics, some sound effects and a few monitors. I asked the lighting designer who was running his board, and he said he didn’t have anyone yet. Starting tech week without a board operator is nerve wracking at best.

I knew a friend of mine is interested in getting involved in community theater, so I called her. She was at the theater a half hour later. She hasn’t actually run a show yet, but the light designer and I could tell just from her writing down cues that she will be more than capable of handling her 300-some cues. I’m excited to work with her, since we get along so well and she is taking a break from handbell choir.

One more person caught in the addicting creative process of the theater…

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.

Fire in the hole

A lot of my friends and family know that a family in my neighborhood had a house fire Monday night. OK, technically it was eeeeaaarly Tuesday morning.  But I hadn’t slept yet, so it was still Monday.

We are friends with this family. We go to the same church, our kids are friends, and we see each other sometimes at community events. We know each other well enough to trust each other with our kids, so naturally they knocked on our door at 1:00 in their pajamas. (Don’t your friends do that?) Little brother was actually wearing just his Spiderman undies, carrying his blanket. The kids ended up spending the night with us, and I was glad to do it. This family didn’t know what condition their home would be in, the least I could do was take in the kids. Fortunately the damage was minimal and should be repairable.

Growing up my biggest fear was a house fire. Maybe because of the stupid movies they always played during fire prevention week. Apparently they were designed to scare you into making an escape plan and other preparations. This was before too many people had smoke detectors. Monday was the closest I have actually come to a house fire, and it was close enough. Even after taking a shower and changing clothes, I still smelled like smoke on Tuesday. It’s no surprise the firefighters told my friend that simply washing their clothes wouldn’t get out the smell.

When you are in crisis mode, most people don’t do a lot of deep philosophical meditation, so it wasn’t until Tuesday that I stopped to think about how God laid things in place well before Monday. My kids are teenagers, but we happened to have a pint-sized tshirt in our “give away” area so Little Brother had something besides Spidey to wear. Not that it bothered him. We had considered moving over the summer, but didn’t. This meant we were close enough that mom didn’t have to worry about the kids. My son and I were both having trouble going to sleep, so we heard the knock on the door. My kids only attend school in the afternoons, so getting to bed a 3 am wasn’t a big problem. Our kids all knew each other, so Little Brother hardly knew anything was wrong. A few more examples came to mind, but my memory has a slow leak, so they are long gone.

I asked my friend what they need, and she didn’t know yet. I’ve been there, and it seems like I always think of something a half hour later. Fortunately she has lots of people willing and eager to help when she figures it out. And me? I’m thankful nobody was hurt and the damage wasn’t worse. And that most of the 2-3 dozen firemen were standing around with nothing to do.