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.
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.
.jpg)
