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9/17/2016 Latest post:
Hi, Family and Friends,
Some of you already know all of this, but I wish I had started this a few months ago, as it is such an easy venue to update friends and family on each step of Joshy's journey! For those of you that don't know any of it, it's OK! It's been a lot going on, and it's not something I just start talking about every time i see someone! This first entry is especially lengthy just to fill everyone in. I'll start from the initial concerns and move quickly through the summer updates to bring everyone up to speed on where it stands currently with Joshy's medical status.
It began about a year ago when Josh started gaining some weight. For a few months, Randy and I just thought he was going through a phase where he was increasingly hungry and growing...we basically thought he'd be a little heavier until his height caught up with him. Joshy's been very tall since birth, so we had no concern! Around Christmas time last year, his facial appearance started to look a lot different, but we still didn't worry about it...we thought, well, he's just gaining weight and going through a phase. He was also having headaches a good deal, which of course, I thought maybe he needed glasses, and he seemed to be increasingly irritable. He'd get upset easily. Again, I just thought it was growing pains.
My dad, who as most of you know, is a family doctor, mentioned to us in the spring that he thought we should take Joshy in for blood work and request a test for his cortisol level. Cortisol is the hormone that is typically called "the stress hormone." It can do things such as cause weight gain, depression, fatigue, moodiness, etc. Basically, anything we all experience with stress! In spite of Joshy's 30 pound weight gain in 8 months, my dad was concerned about the extreme change in Joshy's face. He had developed which is medically referred to as "moon face." He mentioned that there is a disease called "Cushing's Disease," and he thought it's possible Joshy has it.
Well, from that point, we have been on a a bit of a roller coaster with doctors appointments, lab work, MRI's and concern. That initial test was positive for elevated cortisol. At that point, which was in May, he was referred by his pediatrician to a pediatric endocrinologist. Over the month of June, he was given a couple more tests that were both positive as well. Now he was showing elevated cortisol as well as elevated ACTH which is the hormone created by the pituitary gland. Now, the endo was confident things were pointing towards Cushing's Disease. It is very rare in children...about 1 in a million. My dad owns an MRI and we wanted to find out if indeed Josh had a pituitary tumor. The MRI at the end of JUNE was positive for a pituitary adenoma. The good news in this is, however, that in over 99% of the cases, the tumor is benign. So we are very faithful and confident that this one is!
Since then, Joshy has been visiting U of M and has had repeat tests, including another brain MRI. All of these repeat tests, again, were positive. It has been a very long summer with the unknown...we would have a visit with a doctor and feel like things were moving along, and then it would be another two weeks before we would hear any update; the updates would be so much as a repeat test request...basically, nothing new has been done since his initial visit with his pediatric endo who ordered the first few tests. In a nutshell...because pediatric Cushing's is SO rare in kids, U of M really was unsure of what steps to take. We had started to become really frustrated by August and not sure we were in the right place...for such rare diseases, we were starting to think that maybe we would end up out of state for any sort of appropriate diagnoses and treatment; even as awesome and reputable as U of M is, and it has always held a very special place in my heart and my family's because it is where my dad went to med school. But Joshy is continuing to gain weight and grow increasingly irritable and emotional and fatigued. We feel awful for him...we just so desperately want him to get better.
Joshy's endo had suggested NIH in Bethesda, MD. It is the premier research hospital for rare diseases and it is federally funded. She had sent out another child to NIH when things were not moving along for him and his family. So, NIH became a point of interest for us, and for my dad, as well.
He also had conferred with a colleague of his, and she referred articles on pediatric Cushing's Disease written by doctors at NIH.
Now...I am a total believer in things happening for a reason! And this was two mentions of NIH in a month...and in the meantime, nothing had transpired as far as moving on at Michigan.
Well, as the STARS would have it, NIH was delivered to our doorstep just last week. My friend, Sarah, had been hearing about Joshy's situation through a mutual friend/neighbor. I talked to Sarah last week and had mentioned NIH. She realized that her sister, Amanda, who is a pediatric ICU doctor in Bethesda, rounds for NIH. She talked to her sister and found out that Amanda treats the Cushing's kids at NIH's ICU the day after their surgeries! AND...Amanda is dear friends with a doctor who specifically researches pediatric Cushing's at NIH! OMG! This is unbelievable to us.
This is the awesome news...in the past two days, I spoke directly with Amanda, and the doctor at NIH. We already have an admissions appointment on October 16th at NIH! We have been walking around in awe the past two days but so thankful and appreciative for the people in our lives and the blessing that has transpired! Joshy is excited because not only will he get better now...but he'll get to see the WHITE HOUSE! There is an incredible facility for families to stay during treatment; it's called The Children's Inn. Joshy will be in wonderful hands through this next phase of diagnosis and treatment, and we will all be comfortable during our stay due to this unbelievable place.
Our first visit out there on the 16th will be about 7-10 days long for all the necessary testing to be done. Then, we will come home to regroup and head back for surgery. At that time, we will be out there another 10 days. The bigger picture is, within a year, Joshy will go back to his normal weight and appearance and more importantly, the little guy will feel a whole lot better! LOVE!
Thank you, everyone, who has continued to be a support of encouraging words and offers to help in any way. We are so fortunate to have the resources and the connections that have brought us this! Mostly, we are so THANKFUL for my dad for bringing this to our attention. Who knows how long it may have been before Joshy was diagnosed. We have read about kids who go YEARS before they're properly diagnosed and treated for Cushing's. This is mainly because it's rare and it's so difficult to diagnose. We have been told and we continue to hope that Joshy's has been caught early enough that he should resume good growth and quality of life! There was a reason not much transpired all summer at U of M....it was because the STARS were aligning to bring NIH to Joshy and its remarkable generosity and doctors who have experience with his disease. Thanks for reading...and thank you for keeping Joshy in your thoughts and prayers. It definitely helps!
JOSHUA ROCK KRESNAK...Go, Joshy! Joshy's Rockstars!
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