Saturday, October 17, 2009

One Year Later

It's been one year. One year ago I received the call that would forever change our lives. The call that said, "I know what it is." Those were the words spoken to me by Hank's pediatrician. Time stood still and I will never forget exactly where I was standing, where the rest of the family was and what we were doing.

The family was in the car preparing to leave for Open House at Hank's school. I was just walking out when the phone rang...and I could see that it was the doctor's office. I remember feeling flushed and my heart feeling like it was going to beat right out of my chest. We had just been to the doctor that afternoon, after realizing that Hank's face was changing...that his cheek was wasting away. The doctor had been at a loss...and we were scheduled for a head X-ray the next day. I didn't expect a diagnosis at that moment. I had no idea why he would be calling...

And when he said, "Hank has Linear Morphea, I felt like the floor had just given way under my feet. It didn't sound like something sounded terrible. I typed it into my computer and the word, "Scleroderma" popped up. I know now that there are two kinds of Scleroderma..."Systemic" which affects internal organs and is life threatening and "Localized" which is in one location and affects skin, tissue, muscle and bone. But at the time, all I knew about was the systemic and I was scared to death.

I grabbed a pen and wrote frantically as the doctor talked about Parry Romberg Syndrome, the Cranial Facial specialists at UCSF...x-rays, cat-scans, MRI's, blood work... my head was spinning... and then our conversation was over...and I called my mom and quickly told her the news.... and then I joined my family in the car for what was supposed to be a fun evening at the school. I'm sorry to say that I don't remember a lot about that night at the school. But I do remember trying to keep it together and not let on to Hank that anything was wrong...and trying not to stare at him as the realization that he truly had facial atrophy and that we had to stop it.

That phone call triggered months of research for us. Trying to figure out a way to stop the disease.... Those were dark times...keeping it a secret from everyone but immediate family... dragging Hank to doctor after doctor...trying to act "normal" for the kids and the rest of the world...lonely times and desperate times... Times I would like to forget...but times that I need to remember. I can only appreciate where we are today, if I remember where we've been.

So here we are one year later... what a difference! We've been through so much and have gratefully risen from the depths of despair. Finding Dr. Siebert in New York was such a Godsend and gave us the hope we needed to make it through!
Today Hank is good. He is feeling good, and he is looking good. This year's Open House was so different! Calm and of the desperate feelings we had last year! I still have questions, and I wonder if the disease has been arrested...but we will find that out when we go back to New York in December for Hank's second surgery. In the meantime, we give thanks for getting this far and for having the ability to connect with others with this disease.

Last week, I received a message from a young man living in Tennessee. He is 20 years old and has been living with Parry Romberg Syndrome since he was 4 years old. He was misdiagnosed for 10 years before they figured it out. He told me he has had numerous surgeries and wasn't sure where to turn. From the sounds of things, his disease has progressed to the bones. I asked how he found me and he said that he had been thinking "Facebook - Parry Romberg" for about 2 weeks and had finally sat down and checked it out. He went to Facebook and typed in the words Parry Romberg Syndrome and found Hank's group, and found me.

When I signed up for Facebook, I knew it was a good networking tool and not only could I reconnect with old friends, but I could use it to spread awareness of PRS as well as notify people of Hank's progress as well as his fundraisers. But the one thing I have wished for through all this, is to help someone else find the right treatment for PRS. I am so excited that this young man found me. I have put him in touch with Kyle, our 20 year old friend on the east coast who also has PRS, and I hope these two can share their experiences and build each other up! What a great find someone your own age who has gone through what you have gone through.

This young man, Bryan, has also reached out to Hank. He told me, "Ma'am, I am 6'3" and weigh 210 lbs. I have served our country in the military....I go to college, I have a girlfriend and I am going to go to law school. You tell your son that he can be anything he wants to be. This disease will not limit him. He can play football if he wants!" It brings tears to my eyes to think that this guy, with his own PRS issues, wants to mentor our young son. Although we can't meet him this trip, we are hoping to meet up with him soon, especially since he might take a job on the Central Coast... Now that would be have him living near our hometown!

I see God's hand in all of this. I told Bryan that when you feel strongly compelled to do something, that is God showing you the way. There are no coincidences and when you really listen, the path becomes clear.
And Bryan isn't the only one we've heard from this month. I received a heartfelt email from a woman in North Carolina, who's 14 year old son has PRS. She is at a loss, as she thought his atrophy was due to numerous teeth being pulled years ago. Now she finds out her son has Parry Romberg's and needs information. I know how she feels...that was me a year ago! I called her and gave her Dr. Siebert's contact info and I hope they connect!

And another mother who has followed Hank's story took her adult daughter to Dr. Siebert. She had her big surgery just a week ago and is in the healing process now. Such exciting news! And of course there is Megan, who we met in San Luis Obispo last month. Still can't believe Hank had the chance to meet another person with PRS, and in our hometown too! Megan calls Hank her "hero"...he's mine too!

We have had more fundraisers this month for Hank. The Texas Hold'em Poker Tournament was fantastic! It was held at my sister and brother-in-law's winery, McConnell Estates, and we had a great turnout. My brother-in-law, Chuck, has a friend named Rodney, who put the whole thing together. We had some serious poker players there and a few of them didn't realize it was a fundraiser for a little boy. After someone would get knocked out of play, I would thank them for coming and let them know that their support for Hank is much appreciated. I had one guy say, "Where is that guy, Hank? I never even played with him all night!" Uh...yeah...that's because Hank is a kid and we don't let him stay up late playing cards... So funny! But no matter the reason they showed up, their being there helped us raise some good money towards Hank's next surgery!
The next day was a Saturday and there was a free concert at the winery. It was a Johnny Cash tribute band called, "Cash Tribute". The lead singer, Jim Garner, looks and sounds just like a young Johnny Cash. As a lifelong Johnny Cash fan, (yes, I was in the "Johnny Cash Fan Club" as a kid) I was really excited about this day. My sister Patty and her husband, Mike, let us set up a table and sell water and soda to benefit Hank. We didn't make much money, but we educated about 60 more people about Parry Romberg Syndrome. Every little bit helps and the more we get those words into the general public's stream of consciousness, the more it will become a known disease. And maybe we will catch the eye of a researcher who wants to find the cause!

Not only did we get to enjoy the sunshine, listen to great music, eat good food and raise money and awareness for Hank...but we got an added bonus. Four year old Lucy developed her first crush. Typical groupie...she is in love with the the singer of the band. Can't really blame her...he is very good looking and sings like Johnny Cash! After he was done singing and hanging out with his family...I looked over to see Lucy sucked up next to him. He gave her an autographed picture that she carries everywhere and she calls him "that guy I love." She even has gotten out her little princess piano and says she is going to take it to the next concert so she can play music too. It's too cute...but I am thinking it's too soon for this...but then I remember that Lucy's cousin was in love with Disney's "Pocahontas" when he was her age...

Six weeks until we return to New York. We are busy planning the next fundraiser and gathering as much information about the next surgery as we can. I have put out emails to those who have gone through the revision surgery, to find out all the details. Knowledge is power and we don't want to be unprepared! We are taking Lucy and Charlie with us this time. Seventeen days without us was much too hard on them. Besides, I don't think they will let us out of their sight! But I think having them with us will present new challenges...but we will focus on the positive and let things fall into place.

As I reflect on this one year "anniversary" I can see that our path has not been easy. And being the parent of a child with a rare illness is extremely difficult. Be we are blessed to be surrounded by our supportive family and great friends. Hank is a stronger person as a result of what he's endured. These Oct. 2008 and Oct. 2009 photos tell the story of how far Hank has come!

Jeff and I are stronger too, and we can see that anything is possible. But I realize that we have sort of lost ourselves during all of this, and we need to start the road back to taking care of ourselves and doing those things that we enjoy. So for us, this is our new year...and we have our "New Year's Resolutions"... exercise, take care of our health, have fun as a family, do those things that we enjoy, remain focused on getting Hank the help he needs, raise PRS awareness and help others find the path to treatment.... I think we can actually keep these resolutions...!