Friday, April 25, 2014

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...!


4 comments:

  1. Oh Terry what a journey you have and continue to endure. My family and I want to be a part of that journey. Please count on us for anything you need. It's been a blessing to know you. Please let us know how we can help. Hang in there! God has a way to make things fall right where they belong. It will all work out. Love you guys!

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  2. You may remember me, Terry. I live in Madison and we were in contact some time ago. Jessica has delayed surgery with Dr. Siebert due to school---but tomorrow she (at long last!) receives her PhD--- so we may be seeing him soon, too. Jessica and I would love to meet Hank some day. He's our hero.

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    1. Hi Gail! Congratulations to Jessica! How exciting! We will be in Madison in mid June. Please, let's plan to meet!

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  3. Lillian E. MarshallMay 23, 2014 at 3:54 AM

    Dear Terry, I am with you in this. I have to say that the courage and confidence with which your family is facing this deserves a whole hearted applause. Hank is a hero, the fact that he can smile through all this makes him a superhero in fact.
    We see people who run to plastic surgery clinics to make them look younger and better but it is people like Hank and you who deserves the attention.
    Hope everything becomes fine dear, I will always remember you in my prayers.

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