Game Changer

Hank is almost 13...in just 2 months, he will be a teenager...and he already looks like one! Hank has grown at least 5 inches in the last year...going from little boy to young man overnight! And nothing reminds me more of this, than the fact that Hank is starting to want to know and have some say about his medical care.



L: Easter 2013, R: Easter 2014

After Hank's last surgery in October 2012, Jeff and I told Hank that "this is it...no more surgeries unless medically necessary or if you ask for it." Here we are a year and a half later and faced with the knowledge that more surgeries are in his future. Hank is scheduled for surgery this June in Madison, with Dr. Siebert. I have known for a few months, but didn't want to tell Hank until he got through all his big projects at school. But this week, push came to shove and I had to tell him.

Waiting Room with a view!

We are up in San Francisco right now...after having gone to UCSF for an appointment with an ocular plastic surgeon. Hank's eye looks like it is falling...so Dr. Siebert referred us to a doctor in SF for a consult. I don't know what I expected...but what I got...was NOT what I expected! In all honestly, I was supposed to bring Hank here a year ago! But after just having a surgery, I couldn't bear to take him to yet another doctor...so I dragged my feet until I HAD to go...but I wanted to make sure before heading to Madison for surgery, that we had all the info.



Always a smile on his face!

The good news is that Hank's eyesight is pretty normal (although, he could benefit from glasses...which makes glasses-wearing-little-brother-Charlie, quite happy!)..and Hank's left eye is just a millimeter lower than his right eye...which is just where most people are. So what we are seeing is not Hank's eye "dropping" but his lower eyelid being pulled down. What is less than happy...is the theory is that his bones have been affected...and after the doctor had me place my hands on Hank's cheekbones, I know he is right. The right cheekbone is where it should be...the left is flat...the bone has deteriorated.

After examining Hank, the doctor told us, "I don't think he has Parry Romberg Syndrome." WHAT? How is that statement even possible? I pointed out that two doctors at UCSF diagnosed him with PRS over 5 years ago, as did our pediatrician and Hank's surgeon! He pointed out that Hank does not have "en coup de saber" which is the indentation of the forehead. I told him not everyone manifests that way...and then he said that PRS only affects soft tissue and not bone, and yet clearly...Hank's bone has been affected. Again, I explained that Hank had a micro-vascular free flap tissue transfer 5 years ago and then 3 revisions, so of COURSE his tissue would look good! At that point, the doctor, turned and looked at me, "You have obviously done research, and probably know more about this disease than I do..." (which reversed the opinion of him that I was quickly forming..) 

So here's the bottom line....This doctor thinks Hank needs bone surgery....either a bone graft or a surgery to move the bones forward. He wants Hank to come back and see the cranial team....the facial plastic surgeons, to have an MRI or CAT scan, depending on what those doctors think, and then to come back and see him in 2 months. But in less than two months, we are supposed to be in Madison, Wisconsin, where Hank will be undergoing surgery to raise the tissue up around his eye and debulk his cheek. ARGH!!!

"Hank is scheduled for surgery in two months!" I exclaimed, "What do we do? Go forward or wait? I don't want to put Hank through another surgery that won't work!" The doctor said that the tissue lifting is just to mask what is really happening and would turn out much better with the bone addressed first. Now here is where my heart breaks...I KNOW what this surgery is...I have been afraid of this surgery for years, and have been PRAYING that Hank would avoid it. But the fact is, our friend, Kyle, in Connecticut had to undergo this surgery when he was 17. His family flew out to UCLA for it, and I remember his mother Patty, telling me how terrible it was. Hank was just 8 at the time...and that seemed so foreign to me...but in the back of my mind, I have never forgotten her words..."Worst surgery he had ever been through...and the recovery was horrible"... I remember the photos of the aftermath, and her telling me how angry and miserable he was....

Hank is happy....he thinks the bone surgery will be better than the tissue surgery, "I am OK with it as long as I don't swell like I do after the other surgeries..." Ahh....ignorance is bliss!

We left that appointment with Hank in good spirits and Jeff glad to have more info...but my stomach is in my feet and I feel lost. We had a plan...I liked our plan...with a doctor we know and trust. A doctor who understands the pathology of the disease. I know this new doctor is knowledgeable about his field...but this feels like it's a bit foreign to him...and I don't like it.

After a beautiful dinner at our favorite San Francisco restaurant, Scoma's...and a much needed drink or two...I once again have put this in God's hands. I can't worry about it...I know the path will unfold and we will follow it, just like we have in the past. (OK, who am I kidding....I will still worry about this 24/7)

I sat down this morning to send a note to Dr. Siebert, and to ask him to call this doctor. Halfway through the email, my cell phone rang and on the other end was the tirelessly upbeat voice of our favorite doctor, Dr. Siebert!! What a relief! We had a long conversation...he reminded me that we have known about the bone...and that we have been just doing the best we can with the tissue...(I think I have been in denial about that). He is going to call this doctor, mull it over and call me on Monday to come up with our game plan. I love that he asked what Hank thinks...which I replied, "That he never wants another surgery!" and he asked if Hank's eye hurts, or is red... I believe he is trying to determine severity of his eye...

So now we wait...to hear from Dr. Siebert...whether we go forward here at UCSF or south to UCLA, I think we have a couple of months of doctor appointments and tests. I don't know if we will end up in Madison or not...which is a killer, since we had planned to meet our friends from Atlanta in Madison, where Hank and Kristina would undergo their surgeries on the same day...giving two kids with PRS a chance to hang out...and two moms and dads a chance to connect in REAL life with people who understand EXACTLY how they feel!

Please keep Hank in your prayers...I continue to pray for a miracle and hope for a cure! In the meantime, we are heading out to have some fun in San Francisco and join some friends for tonight's Giant's game! Life continue's on...and we will continue to meet each hurdle head on...together...!

Five Years...

There are a few moments in your life where everything stands still...where you feel the floor drop out from under you...where you know that life will irrevocably never be the same. Sometimes these are wonderful events...finding out you are going to be a mother or father for the first time...your wedding day...the birth of a child... I remember those good times with acute clarity...but those moments of utter sorrow resonant loudly with me.

There are a few catastrophic events that have taken place in my married life...things that brought me to my knees...and the memory of each one leaves me with a heartache I never imagined. Driving 90 miles to the hospital after my father suffered a heart attack and the phone call from my husband telling me, "I asked him to wait for you"...that exact moment that I knew that my Dad was going to die and I might not be there to say goodbye...The moment I realized in utter and complete fear, that I was miscarrying our fourth child...and the phone call from the doctor telling me that our sweet, handsome little 7 year old boy had a rare, incurable, progressive disease that would disfigure his face and cause his brain to atrophy.

It's been five years to the day, that we got the devastating diagnosis of Parry Romberg Syndrome...and today I am taking it hard! That phone call changed our lives...and I now think of life as "Before PRS" and "After PRS". At that moment our priorities changed...the way we look at life changed...for as many people who rallied around us...just as many abandoned us... And nothing mattered to us except finding a way to help our boy!

So here it is 5 years later...and I never thought we would be where we are now...that Hank would be 12 and living life to the fullest. In these last five years, we have had 24 fundraisers...Hank has met six other people with PRS...(which is just amazing!) We have traveled to NYC four times and once to Madison, Wisconsin for treatment...Hank has endured 4 surgeries...We've reached 30,200 people through this blog and many more through Hank's web site... we have been embraced by the Elk Grove/Sacramento community and blessed in more ways we thought possible.

I have connected with multitudes of other parents of PRS kids and adults who suffer with the disease. I have learned so much and I have been able to guide others through the terror of this diagnosis. Hank has helped other kids through the surgeries and continues to cheer on those who are walking in his steps. I count quite a few of those mothers as my best friends...even though I have only met a few in "real" life! With all the bad...comes so much good!

Hank is in 7th grade now....7th grade! How is that possible? No longer little and puny...I swear I can see him growing! Not as tall as me...but in a year, I have the feeling I may be looking UP at him! I worry about Hank...I worry about his health...his happiness... Hank is resilient and strong...this last school year was probably one of the best of the past five years. To me, 6th grade was scary...to Hank...it was fun and challenging. He excelled in his classes...had fun playing in the school band, taught by a teacher he truly loves (and who loves him right back)...getting up every day...excited and ready to go. I was amazed! He even went away for the annual spiritual retreat...five days without mom or dad...I never thought we would get to a point where we would be OK with letting him out of our sight for that long...but with open hearts and trust in God, we did...and he had the best time! He came back more secure in who he is...knowing he can do things on his own...breaking away from us was great for him...and me!

Now our family is on another adventure...we've moved! Not across town...across the state! 350 miles away...back to our hometown...from a city of 180,000 to one with just 45,000 people. Very excited about being "home"...the place where all three kids were born...the place where I was born...deep roots and a beautiful place. They are in a new school...one that they love...and the school loves them right back! It is a wonderful blessing to be surrounded by loving teachers and administrators who care about the "whole" child!

Hank's journey with PRS is far from over. We realize that the surgery last October did not do what it was supposed to do...and another surgery is looming...but we take each day as the gift it is and are so thankful that right now he is enjoying good health and loving life!

After 7 years of being home with the kids, I have re-entered the workforce, something I would never have considered a few years ago...But with the kids being older...it's time.  At the beginning of the year, my former employer called and asked me to move back and rejoin the company. After months of driving back and forth...lots of talking and prayer...we finally decided to make the move.

Best decision we could have made...

A Baseball Dilemma...

Opening day 2011!

Spring is here and things are busy! Hank and his brother Charlie are both playing baseball again this year and juggling their schedules is challenging. Both boys played last year and even though they were in different divisions, they were both "Dodgers"...which was very hard for their 'lifetime fan of the Giants' Dad, to swallow! This year we had high hopes that they would be on teams we can stomach cheering for...(it's hard to yell, "GO DODGERS!")...and were thrilled when we got word that Hank's team is the "Phillies"! We waited anxiously to find out what team little brother, Charlie, would be on. And were very surprised to find his team is also the "Phillies"! What are the odds? Different divisions...same teams....two years in a row!

Hank is improving in baseball. It's hard...three years ago, we didn't know if Hank would EVER play baseball! We had no idea how his disease would progress, if he would feel like playing baseball or if he would even be well enough to play... And really...three years ago, I wasn't thinking about baseball...I was thinking about "how can we stop this disease?"

After Hank had his surgeries, I was afraid to let him play. What if he got hit in the face with the ball? Would it damage all the work that's been done? Would it trigger his PRS again? So when at 6 months post surgery, Hank asked to play baseball, I was a wreck. "What? Baseball? Already?" Jeff and I discussed it...both excited that he was asking to play. Charlie had been asking to play for three years and we still hadn't signed him up either...poor kid! But at age 6, almost 7...Charlie was dying to play....so with a leap of faith, we signed both boys up. Baseball season started in March, 8 months after Hank's last surgery. I looked into getting a batting helmet that would protect his face. I know they make them...but in the end, we didn't do anything special, we just let him get in there and play!

He wasn't the best player on the team, but he sure tried and played with a lot of heart! He wouldn't always swing at the ball, but by the end of the season, he was getting some good hits. I will never forget one of the last games...where he finally made contact with the ball. The crowd went wild...we had been waiting for that kid to hit it all season! You would have thought we were at the World Series! I had only confided in a few parents about Hank's PRS...and those were the ones who cheered the loudest...appreciating what he has been through.

Hank and Charlie ready for their first games...March 2012

Which brings us to this season...Hank's skills and confidence is really growing. At the last game, he hit a double and brought in two runners! The smile on that kid's face was huge! Which brings me to the dilemma I am struggling with...and the whole reason I am talking about baseball... We have a fundraiser coming up on May 11th...it's going to be really fun...it's at a family owned small scale amusement park, called "Funderland" in the Land Park area of Sacramento. We are so excited and of course want to advertise it everywhere and would also like the support of the baseball league! The fundraiser happens to be on a Friday night, which is also when Hank has practice.  So what do I do?

Do I tell Hank's coaches that he has Parry Romberg's Syndrome? Just send them a link to "Hank's Story" on our website and invite them to the fundraiser? Or do I just say he can't make that practice and forget about trying to get the the league's support? (They have supported past fundraisers...but that was before Hank was in the league and his Uncle Mike was the league President.) Hank is playing AAA ball now...it's competitive. The coaches are great (we really like them)...and they seem to want to be fair...playing all the kids...but will Hank be looked at differently? Kids at school know he has PRS...it's not an issue...in fact I think most of them have probably forgotten all about it...and only one boy on the team knows about it and it's a non-issue for him as well...

This is a fine line to walk...we want to raise awareness for Parry Romberg Syndrome...we need to fundraise for Hank's upcoming surgery...it's not something to be ashamed of...and knowledge aids in understanding...but Jeff and I are at a loss at what to do...
So I open it up to all of you...what would YOU do?  I am so proud of Hank and all he has withstood. From his surgeries, to his educating his peers on his condition...to his kindness and understanding towards others...to his willingness to help other families who are struggling with this diagnosis...to his academic accomplishments...I could go on and on! I don't want HIM to ever be ashamed or worried about what he has...and usually it's not even the kids who say stupid things...it's the adults!

Are my fears unfounded?...Will he be treated just like he always has been? This kid has been through more than most adults...and I want him to continue to feel the normalcy that he has experienced for the last year and a half. Oh, I know...it's not an easy road and there are always the people who say the wrong thing...like the kid last fall who said to Hank, "You look weird in the mirror." UGH! Please...no more of that!!  What would you do if you were me?