Hello, again! Cara Bodziak's odyssey continues

OUR REPORT:

On the cold, blustery Monday morning of February 9, in Chicago, Illinois, we found ourselves, steeling our nerves, again walking through the entrance of Children’s Memorial Hospital… Chuck and I, each clasping our little Cara’s hands, as we led her into the hospital. A daunting exercise in anxiety for Cara. (And us). We knew there was a lot to go through that day.

After the check-in preliminaries, Dr. Laura Pachman and her medical team went right to work. First there was the CT scan (computed tomography) to detect anything that might be causing the frequent headaches Cara has been experiencing. Result: Normal.

Then there was the DEXA scan (bone density test, also called densitometry), which checks to see that her bones are not being adversely affected by her Solumedrol administrations. Result: Reasonably satisfactory.

Following this testing, Cara was subjected to a kidney ultrasound to be sure that her kidneys are functioning properly without adverse medicine administration reactions. Result: Normal.

All good things.

Cara has just reached one year of treatment, now, under Dr. Pachman. After going through these, and other related tests and physical examinations, Dr. Pachman found enough favorable results to begin a trial reduction in the amounts and frequencies of Cara’s pharmaceutical regime. A careful review of the each successive month of laboratory blood work will be monitored, to ensure the efficacy of this reduction in medicines, and to make certain that Cara’s body is not going to experience any negative results that might allow her disease to return to a higher level of activity. The persistence of her facial rash is thought to be being caused by the Solumedrol, and not necessarily the disease itself.

This was good news to all of us. We still have great hope for Cara’s remission. But we know that it will be an ongoing struggle through the next few years at the very least, for that to happen. We pray that it does.

ON THE LIGHTER SIDE

I want to share with you one of the nicest things that happened while we were at the hospital. And it all started, thanks to the involvement of one of my fellow Paychex associates, Michelle Domer. through her affiliation with Avon Corporation and its Bentley Bear outreach program, exclusive from Avon, through its Independent Sales Representatives, she initiated the program here, to help uplift the spirits of Cara, as well as Cara’s fellow patients afflicted with Dermatomyositis. Where half of the proceeds get donated back to the charity of your choice, and she chose to donate it back to Cara to help us pay for this Chicago trip. One by one Bentley Bear sponsors jumped in to be a part of this compassionate project and resulted in a large number of ‘adopted’ Bentleys.

These were then shipped on up to Childrens Memorial to await our bringing Cara for her medical treatments and review.

After Cara’s medical services were concluded at the hospital, she went about personally to all of the Dermatomyositis child patients there that day and gave each one their own Bentley Bear. These are children, who Cara and our affected families interact with each time we visit the hospital. So that you can see the miracle of the smiles that were brought to all the children’s faces, I have provided their pictures here for you. Cara has become a close friend to another patient, Madeleine, also has to be evaluated by Dr. Pachman every 12 weeks, as Cara does. Madeleine’s mom, Connie, has become quite an ally for Chuck and me, as well. So, as families, we try to time our hospital visits to coincide so that we can, one on one, share with each other what is going on, as we try to lead our children out of the darkness of this disease.

MOVING FORWARD

It is humbling to us when we witness the stalwart bravery of these youngsters, doing the best they can to regain their way back to normal health. They endure these sometimes painful and complex examinations, tests and treatments, such as you and I would probably never imagine. They survive by faith, without the absolute assurance of ever overcoming this disease. But the dedication to the hopes of and compassion for one, it seems, is the overarching passion of the many. For that, and you, we are forever grateful.

Well, our next serious medical review and return to Chicago will take place on May 18. I will keep you posted as much as I can, God Bless, stay well and thank you for your prayers and support for our little Cara.

Hello! A health care odyssey... Cara Bodziak

Where to begin...? Ahh... there's the rub.

Why not at the beginning of this weblog journey of my daughter, Cara's plight, from fancy, to fear, when we learned she was waging a fierce battle with a previously unknown to us, incurable and relentless, destructive childhood disease... Dermatomyositis.

Most of you who are now reading this may have already received a mailing or e-mailing or two which we sent out when all of this started. So some of this may be news you already know.

But for others, with whom we have had occasion to communicate in the other parts of our daily lives, much of this will be very informative and fill out some of the gaps in their knowledge and understanding of what Cara's disease is and its powerful potential to devastate her life... if it not leashed and restrained and put at bay. Through what we are now learning, we, ourselves, are finding that there are various workable and effective drug and treatment methods, along with some methods that, in trial, or in error, may or may not have worked as well as we would have hoped.

For this condition is a work in progress, and how it afflicts different children varies like night and day. But its continuing attacks on these growing and maturing young children, and as in Cara's case, whether mild or devastating, don't magically go away without a fight. And so it is.

So I will take you back to where it all began for Cara and us.

WHAT HAPPENED

Cara was diagnosed in July 2007 with Juvenile Dermatomyositis; an extremely rare auto-immune disease with only about 5,000 known cases in the United States. This disease attacks the skin and muscles, is extremely painful and causes extreme fatigue, among a host of other things. There is no known cure, so for now it is generally treated with steroids and chemotherapy. The effect of this disease on its victims result in about a third going into permanent remission, another third having temporary remission periods, and for the remaining one third… it is a day-to-day battle for as long as they live. Tragically, in about one out of 100 cases, it results in death from complications of the disease. We have no way of knowing our Cara's odds of survival or health maintenance, but we live in hopes of an eventual cure, so far, undiscovered.

Before Cara was diagnosed, she was a level four gymnast and was in the gym at least three days a week. She also was a straight-A student, and she loved swimming, horseback riding, and going to the beach. She was a model for local department store flyers. She did television infomercials and print ads in her spare time.

Since then she has not been able to do any of these things as they have become too physically taxing for her. The beach and pool fun is now off limits, as one of the things that are harmful to children with this disease is sunlight and ultraviolet rays. Her life has changed dramatically for the worse. But she still maintains her courage, positiveness (most of the time) and straight A's somehow, even with all of the school she has missed. So far we have not yet come to the place where she may have to have home schooling, as some of the childhood victims of this disease who can no longer take the rigors of school attendance, must do.

SOME MEDICAL FACTS ABOUT DERMATOMYOSITIS

Also known as JDM, it is an autoimmune disease affecting approximately 5,000 children in the United States. Weak muscles and skin rash are the primary symptoms of JDM. Some children experience a mild form of the disease, while others follow a more severe and potentially more debilitating course. Some of the more onerous secondary symptoms are calcinosis, vasculitic ulcers and contractures.

In JDM, once a child's immune system turns on her infection-fighting process, she cannot turn it off. This process therefore damages the body instead of protecting it. One way the immune system cells fight infection is through inflammation. But when the cells cannot turn off the inflammation process, tissues are damaged. In JDM sufferers, the skin rash and weak muscles are caused by vasculitis, an inflammation in the blood vessels that lie under the skin and in the muscles. Since blood vessels run throughout the human body, JDM can also affect other systems such as the digestive tract.

Because this disease is so rare, it took us about three months to get Cara correctly diagnosed. There is currently research being done on this disease, however, there is no cure for JDM. There are only treatment options to help manage the symptoms. Early and aggressive treatment is usually the best predictor of a better outcome of this disease.
IV corticosteroids (Solumedrol) are usually the first line of treatment for JDM. This is oftentimes coupled with high dose oral Prednisone, another corticosteroid. Since the side effects of corticosteroids can be very troublesome, Methotrexate (a chemotherapy drug when given in higher doses) is usually introduced early to allow for tapering of the corticosteroids.
Other common treatments include Cyclosporine and Intravenous Immunoglobulin (IVIG). Less common treatments, but still used include Cellcept (chemotherapy), Enbrel and Remicade. These medications all have their own side effects, but the most common ones for Prednisone are: increased appetite and weight gain - rounded face - mood changes - high blood pressure - stretch marks - fragile bones and bone damage - cataracts - slow growth.
To learn more about this disease, please check out the website for the Cure JM Foundation... http://www.curejm.com/. There you will find Cara, among so many others like her, who have, for yet unknown reasons and by no fault of their own, contracted this disease. If you go to the "Faces of CureJM" on the Home Page, you will see these children, and their stories, as well.

From outward denial to reluctant acceptance, Cara’s health care odyssey has unfolded slowly, not yet unveiling significant clues as to where her journey is leading her.

OUR NEXT MEDICAL EFFORT

We took Cara to Chicago in April, May, July and October. Our next trip is this February 8th and 9th. She is seeing Lauren M. Pachman, M.D., Professor of Pediatrics, Northwestern University, Feinberg School of Medicine, and Director, Molecular & Cell Pathobiology at Childrens Memorial Research Center. Her credentials and medical expertise are top drawer. Cara has not only become part of the research that will help find a cure some day, but she is also getting the very best medical care that is available for her disease. Dr. Pachman has seen more cases of JDM than any other doctor. Families bring their children from all over the world to her for her expertise, and because she has seen the most cases, she has a much better overview of some of the mildest and worst cases of JDM.

She also has the very best laboratory equipment and researchers who are able to monitor the progress of her child patients. Cara had to have a mediport surgically implanted to enable infusion administrations and lab draws to prevent the risk of her veins collapsing due to these procedures. Cara is currently on twice a week Solumedrol infusions, which are administered at home by a home health nurse. She is also getting Methotrexate injections once a week, ably administered by her stepfather, along with oral Prednisone. She is taken by one of us, or other volunteering family members, to All Childrens Hospital in St. Petersburg once a month for IVIG (intravenous immune globulin) infusions which take all morning and afternoon. She also has out-patient physical therapy twice a week to try and rebuild her strength. These are followed up by three-times-a-day, at-home PT exercises. Also the wearing of lower limb and ankle braces through her nighttime sleeping hours. All of the medicines that she is taking have caused her to gain more than usual weight and have caused her face to become puffy-looking. Her rash is still very prominent on her face. Cara has had a truly emotional challenge dealing with her appearance changing. We have seen some improvement over the course of this treatment which we started in April, and Dr. Pachman feels that we need to continue with the treatment plan we are currently on for at the very least another 10 weeks. She has been slowly regaining her strength over the summer by swimming and doing exercises at home.

SOME WORDS FROM CARA

" I love Dr. Pachman because she knows so much about my disease and has helped me so much. I never thought that my family would be able to afford all of this, but I am thankful for all of the people who care about me and want me to get better, and have helped us. If you would like to send me a note or card or anything else like that, you can mail it to me, Cara Bodziak, 3935 Longhorn Drive, Sarasota, Florida 34233. And you could also email me at carebearjp@yahoo.com. I would love to hear from you.

As always, love to you all,

Cara"

THE LEARNING CURVE

We know from the histories of cases similar to Cara’s that getting her health back to what most of us would consider “normal good health” has taken in the neighborhood of five years, more or less. That is if the treatments prove effective, and other complications do not spring forth from the disease. In our Chicago medical trips we meet and get to talk to other families with their stricken children, who, like Cara, are in various stages of the disease. Some fare better, and some worse, but all, like Cara, have the best hope of recovery by some level of remission, and it does happen. If you have gone on the CureJM website, like most of us have, http://www.curejm.com/ and have checked out the publications, fliers and newsletters there, you have seen the best and the worst of worlds in the Dermatomyositis universe. So there is our fear, as well as there is our eternal hope.

So as we go along, we will do our best to keep you current with how Cara is progressing.

I will do my best to keep you all up to date on Cara's progress, hopefully toward getting better, in future postings, about once a month. That will of course include the latest medical information we will have after returning from our February visit to Chicago.

So please check back in.

From Cara's mom, Krissy, God Bless and stay well.