Tuesday, July 21, 2009

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

INFORMATION UPDATE

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.

BACK HOME


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.

RECENT EVENTS

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.

MOVING RIGHT ALONG

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.

STAY TUNED

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.

1 comment:

Bernadette said...

Hey Cara, I just realized that you are probably in Chicago now. Hope all goes well. I love you and will call you soon.