Tuesday, June 26, 2012

Dialing Back... Our Cara’s Reversal of Fortune 

We happily remember, since our last weblog entry in August, 2010, progressing all through that year with increasingly fortified hopes and almost for-certain certainty, that Cara was finally arriving at that place of returning to herself.  

That is because Cara was off all steroids infusions and other medicines for almost one year.  In December 2011, when we went to Chicago, they took her off of the last medicine from her treatment plan.

Then, this January 2012, Cara developed a fever for a few days.  It was a low-grade fever, and she had no other symptoms indicating that anything was going wrong.


But, late in February 2012, Cara developed another rash on her arms.  It was itchy, and just sort of looked like an allergic reaction to something.  We took her to our local pediatrician and she put Cara on allergy medications for a few weeks…however we watched and found the rash had begun to spread and started up on her cheeks again.  By this time we pretty much knew that this was not a good sign.

We took pictures of the rash and emailed them to Dr. Pachman in Chicago. She asked us to fly there with her as soon as we could. This was Spring Break week… around the middle of March.  After we got there, and after Dr. Pachman could check Cara out, she confirmed that this was a flare-up or relapse for Cara of her Juvenile Dermatomyositis disease.


Even though she had no muscle weaknesses, and her labs all came back in normal range, her doctor re-started all of Cara’s medical regimes, including the Solumedrol infusions, twice a week by home health nurses, to begin right away.  She also re-prescribed Cara’s monthly, in-hospital to-be-administered IVIG (Intravenous Immunoglobulin) infusions... as abundance of further caution, just to be sure all that could be done for Cara that could be done.  The doctor required a PICC line (peripherally inserted central catheter)*  inserted into one of Cara's arms… a medically necessary procedure that would accommodate all of the IVs and considerable lab work that would be needed to test and to measure the progress and effectiveness of these treatments.


Cara has had so many doctor appointments and infusions that whenever she gets an infusion her blood pressure rises, so we had to have her certified as Hospital Homebound.  This is where a teacher from her school comes out to our home, teaches her the required educational school subjects and reports back to the school.  That was because she was missing way too many school days. Somehow she pulled off straight A's through all of this… maintaining her always excellent school grade records.

We traveled to Chicago again in May for another evaluation, and Dr. Pachman confirmed that Cara is beginning to respond properly to her treatments, and this is good news.  Her rash is diminishing.  She still has no muscle weaknesses, but her labs are slightly elevated now for disease inflammation. Thus, we will have to continue on this medical plan until our next appointment in August with Dr. Pachman, and keep praying for Cara every day. 

Thank God for those in our family who help us so many times and in so many ways with covering these visits for us so that Chuck and I can continue to be able to still go to work.  I don't know what we would do without their fulfilling that role.

This is Cara’s mom, Krissy, signing off for now… May we be blessed this year with Cara’s getting stably back on her track to wellness as this year marks her 14th birthday this coming November.  And a future for her and for all of us… that future we all want to be that future worth working on and waiting for.

* A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is a long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body from the extremities. And typically the upper arm is the area of choice.

Saturday, August 21, 2010

Curing Cara - Marking Time - Finding Out What is Working Best


So far, in this year of 2010, we have traveled to Chicago’s Childrens Medical Center in March and June for Dr. Pachman’s ongoing medical evaluations of Cara’s progress.

We are flying up there again next month in September.

Professional tests and reviews show that Cara has been tolerating all of her medicines acceptably well. However, she has not been growing at what is considered a normal rate, due to her having had to be continuously on these steroid therapies over the last three years of their administration.


This is a serious concern of Cara’s physician. Dr. Pachman, for that reason, has been systematically reducing Cara’s intake of these steroids for the past four months. She has now placed Cara on Cellcept and Cyclosporine, which are alternative effective immunosuppressants, which will hopefully take the place of the Prednisone and Solumedrol. Cellcept and Cyclosporine do no harm to her bones nor contribute to any stunting of her growth. We are encouraged that they seem to be working positively for her… which if sustainable… will indeed be wonderful!

Her bone density test (DEXA) that was done in June showed that she has suffered some serious bone deterioration, so getting her off of the steroids, and substituting them with 1000 mg Vitamin D should help her bones build back up. They will watch her closely.


We still face the expenses of uninsured, out-of-pocket costs of air travel to and accommodations in Chicago every three months for quite some distance into the future. When this will decrease, if it does, is not knowable now.

Cara has been much challenged but maintains her fighting spirit, in trying to win against this unforgiving disease. Cara’s experience is one of the more complex cases with which Dr. Pachman has had to deal. JD’s damage to her skin has been the most heartbreaking.


While we were up for our usual visit in March, Dr. Pachman had a consulting physician from Harvard to help with these studies that she is doing with the children who have more skin involvement from the disease. It was requested of Cara that she allow the surgical removal of a section of skin from her back that would become a part of the research that they are doing on Juvenile Dermatomyositis. Choosing to do that was a very difficult but important decision for Cara... as she really wants to help with the research of her disease, but did not want to suffer the pain of that surgical procedure. But SHE made her own decision to have this done, and we all felt very good about that and extremely proud of her as to her making that ultimate choice. What a contribution for an eleven year old girl to make… not only for her sake, but the greater good of all the others, some of whom have become close and personal friends, and who have been enduring what she is also struggling through!


Cara's fourth annual fundraiser for medical research, cure, and the unavoidable but necessary travel expenses for Cara will again this year be at the Beach Club on Siesta Key, Tuesday, October 12th, thanks to the devotion and generosity of the Beach Club’s ownership and management, to Cara and her cause. If you would like to help Cara out with or through this event in any way at all, please call me and I will tell you what we are in need of doing and having to make this year's fundraiser a blowout success! 941 809 0283. Or email me at krissc24@comcast.net. Feel free to jump in. We all are!!!

I will post more specific information here, as the date approaches, so that you will able to come out and join us for a really great time for and for a really great cause.

Sunday, December 27, 2009

2010 - Cara's Relentless Search for the Good Life - One Year at a Time


2009 has been an unbelievable year! I just wanted to give you an update on how Cara has been doing throughout the year. We have traveled to Chicago with Cara four times this year: February, May, August, and November. She is currently still on Solumedrol Infusions, however, they used to be twice a week and are now only once every two weeks. They are trying to get her off of steroids which are damaging to her. She is taking 15mg of Prednisone every day also, on top of many other immune suppressant drugs. She is maintaining a fairly stable status so far on her treatments. I am sure you can see in her pictures how much these medicines are affecting her body.

In the summer we had a couple of scares, though. She had an anaphylactic shock reaction to one of her infusions called IVIG. Luckily, she was in the hospital at the time and they reacted quickly with an Epi-pen. Then shortly after that she had another allergic reaction to her Methotrexate injection which she has been getting for the last year and a half. Needless to say, she is no longer getting either of those drugs anymore. In August, she had to be hospitalized for an infection in her port. She was there for a week and then luckily they were able to clear her to go home for the remaining antibiotics to be administered through Home Health, which thankfully cleared the bacteria from her port. This was a close scare, because they were looking at possibly having to remove her port, which would have been horrible for her.


In October, we held two fundraisers for Cara’s medical and travel expenses. The overrun cost for all of her expenses not covered by our health care insurance runs somewhere around $15,000 to $18,000 a year right now, and we are looking at at least another two years of this. Throughout the year we receive lovely cards and donations scattered at different times from different people. It always amazes us that throughout everyone’s busy schedules, they take the time to think of us. It has been so heart-warming to know that everyone cares so much about Cara, and our family. These fundraisers and donations that everyone sends go directly to the medical fund in trust for Cara’s expenses when they arise, and every little bit helps.


Your help has saved our family from having to endure any other hardships along this journey that we have been on with Cara. It has taken away a huge amount of stress from having to worry about not being able to afford to give our daughter the care that she so much needs, and has to have. It has allowed Cara to see the very best doctor who has the knowledge of this disease, and I believe it has saved Cara’s life thus far. The only regret I have is initially waiting eight months during diagnosis, to get her where she needed to be in the first place, which has set her back a bit in this treatment.

Thank you, thank you from the bottom of our hearts. All I can say is when something like this happens in your family, you really find out how much support you have, and that has been our saving grace!


No one knows the future... certainly we are not alone in that regard. But one thing we do know... good people help others with good works... and we and Cara are so uncommonly surrounded with those who do those things.

Johann Schiller said : "God helps the brave".

Lord Dunsany said: "Good works make beautiful things. And good things last".

So it is... so it will be...

Happy New Year and God Bless you all!

CARA and ME... her mom, KRISSY

Tuesday, July 21, 2009

Cara’s Changes of Fortune… Our Wandering Quest for Answers Goes On.


During the week of May 10 we were all routinely going about getting everything in place for Cara’s scheduled trip to Children’s Memorial Hospital in Chicago, for her disease evaluation tests and procedures. We were to fly out the upcoming Sunday morning.

But not so fast… Thursday May 14 brought an unwelcome surprise. Without warning, Cara suddenly contracted an influenza strain. She was ordered hospital-confined until recovery... our planning for the trip seemed in jeopardy. But Cara’s hospitalization and care was able to abate the worst of her flu-like illness. So now Cara was better but she wasn't quite completely over it. This made us feel even more compelled that Dr. Pachman should see her. The hospital was able to release her. So, fortunately, the morning of Sunday, May 17, we were up, up and away, and Cara could in fact, and did, keep her medical appointment with Dr. Pachman in Chicago, according to plan.


After returning home from Chicago we anxiously awaited the results of Cara’s evaluations, tests and laboratory results.

All the labs that were taken on that visit came back elevated due to the illness for which she had just been hospitalized. Her blood platelet count continues to steadily decline. (Note: a platelet is the smallest type of blood cell. Platelets are the body's first defense against bleeding, helping the blood to clot or coagulate, by collecting at the site of a wound and clumping together to help stop the flow of blood. People with very low levels of platelets or with bleeding disorders may need to have transfusions of platelets to prevent excessive bleeding). This caused Dr. Pachman to take her off of the Cellcept medication. Dr. Pachman felt she was doing well enough so that she could safely remove the Cellcept from Cara’s medicines regimen.


Three weeks later Dr. Pachman ordered more blood draw tests run locally. These turned out to be not as elevated, leading the doctor to believe the Chicago-run test results were higher, due to the influenza.

Then, a week or so ago, on July 8, Cara had an extremely severe negative reaction to her Methotrexate injection administration. This was a very panicky situation for us, requiring her immediate transport to a hospital emergency room, basically in the middle of the night. Her condition was able to be brought back under control so that we could bring her home early the next morning. Cara has been on Methotrexate since 2007 without any adverse reaction, and Dr. Pachman believed that this reaction was due to a pharmaceutical brand change. So for now, just to play it cautiously, the doctor feels that we should discontinue Methotrexate until we get future lab results and then determine the best course of action.


Looking ahead, we do have some exciting fund-raising events in the planning stages and soon to be formally announced. One is centered on a Premiere Designs’ High Fashion Jewelry house party that gives those of us locally an opportunity to socialize, choose some very special and fashionable jewelry where the profits will help add to Cara’s trust fund. We have tentatively chosen Friday August 14 for this event. Our other fundraiser will be on Siesta Key, at The Beach Club, tentatively scheduled for Tuesday evening, September 29. For those of you who were able to make it last summer, we think it is just going to be even more fantastic and fun. And for those of you who could not attend it last summer, we hope you can make it to this one. As a charitable event, it will be most meaningful in terms of enabling the ongoing level of quality and costly care that Cara needs in her fight against Dermatomyositis.


We are flying up to Childrens Memorial Hospital in Chicago for Cara's medical reviews with Dr. Pachman again Sunday August 9. I will do my best to get out our most current report on Cara's progress following that trip, as soon as the results are provided to us.

As always, stay well and God Bless. We thank you so much for your continued interest and generous support on behalf of our battling little girl. And Cara, of course, sends her love and her utmost thanks to you, as well.

This is Cara's Mom, Krissy, signing off for now.

Monday, March 30, 2009

Hello, again! Cara Bodziak's odyssey continues


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.


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.


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.

Sunday, February 1, 2009

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.


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.


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.


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.


" 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,

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.