Tuesday, June 10, 2014

One Week and Counting...

I can't believe we have been on this journey for five and a half years... Just when I think we have it handled...things change. We are one week away from heading to Madison, Wisconsin, where Hank will have his 5th surgery. My heart breaks for this kid...having to face another operation, another hospital stay...another recovery...and just all the fear and worry that goes with it. Hank is stoic...he doesn't mention it...and neither do I. But we know it is there...looming ahead...and neither one of us is happy about it.

First day of school...Last day of school...grow much?
We waited 6 weeks to hear back from UCSF, for the referrals to the other doctors they wanted Hank to see. By the time they finally called us, we were planning the trip to Madison. After waiting so long, all they did was refer us to 2 different departments...cranial and plastics. Well I could have done that myself! "Is there a particular doctor we should see?" I asked. "No..." said the receptionist, "just call the numbers I gave you and they will set you up with some appointments." Hmm...so our child has a disease that affects less than 2,000 people worldwide, and you want us to see just anyone? That didn't even make sense to me...

Luckily, I had received a call from Hank's surgeon, Dr. Siebert, the week before. "Hank doesn't need that bone surgery," was the first thing I heard, "He is too young, and even then, I don't know if he will ever need it." I could feel the weight of the world start to lift off my shoulders. "But what about the other people who have needed bone surgery?" I asked, "Isn't Hank going to need it too? I know his cheek bone has deteriorated." Dr. Siebert explained, "Hank was better off than most, when he came to me, we caught it earlier...Yes, his bone has deteriorated, we know that...fixing the tissue is to mask it...but I don't know if he will ever need bone surgery...and certainly not now." I couldn't believe my ears! Just what I wanted to hear..."Bring him to Wisconsin," he said, "We need to lift the flap and remove some tissue, it's weighing down his eyelid." I took a deep breath, "Hank does not want another surgery and Jeff and I don't want to put him through anything unless it is absolutely necessary."

There was a pause...and then I heard the words that squeezed my heart..."Hank is going to be 13. These are the years that matter. The years that form who we are. Hank deserves to feel confident...to look his best. Hank deserves that chance. We owe it to him...I owe it to him... I owe it to this kid to give him the best chance I can. We need to do this for Hank." My heart sank. I knew he was right... He then went on to talk about Hank's eye and all the things that could go wrong if we don't do the surgery and the tissue continues to pull his eyelid down...won't be able to close his eye, resulting in eye ulcers, dryness, and many other issues. And so that was that. Surgery on June 19th...now how were we going to tell Hank?

The next week was crazy busy, with me working long hours and putting on three events that week. I only saw Hank for an hour before school and knew that I couldn't tell him then. And so we waited all week to tell him. It was painful...and worrisome...how would he react? We finally found our chance that weekend...I had to work on Saturday, so Sunday after Mass would have to be the time. As Jeff and I made our way up the stairs to Hank's room, my heart was heavy. I rehearsed in my head what I would say. Hank was sitting on his bed, playing a game on his laptop. He looked up when we came in and I saw the questions on his face. Must be serious...both mom and dad in his room...and wanting to talk!

Jeff sat down next to Hank and I sat on Charlie's bed across the room. We started off by telling him that he would not be having bone surgery. "Oh thank God!" he exclaimed as he looked up at the ceiling in relief. "but..."said Jeff, "you do need the tissue surgery in Wisconsin." Hank's face fell..."NO! NO NO NO!" He said in a voice laced with anger and disappointment. "We are so sorry," I said, "but we have to do this...you need it.", and went on to explain why. Hank sat silently and listened...and then the tears started to roll down his cheeks. He tried to wipe them away before we saw them, but they were too quick and there were too many. "No..." he said quietly. I felt terrible. This was awful. It was so much easier when he was little. He didn't quite understand and he didn't seem to remember the surgeries. But now...now he gets it...and he remembers...and I don't blame him...I wouldn't want it either.

I watched his face and could see the range of emotions...anger, disappointment, sorrow...and then resignation... "OK. Fine. I'll do it," as he wiped the tears away and sat up. And that was that. I knew he was angry and hurt...but he did not want to talk about it... he wanted to be alone. We left the room and went downstairs...and then it was my turn to cry...

I sent Dr. Siebert a text..."We just told Hank about his surgery. He is very upset. Would you be willing to talk to him about it?" The response came back right away..."Absolutely!" He called that night. "Hi Terri, It's Dr. Siebert. Is Hank available?" (I love this man) I handed Hank the phone, "Oh Hi Dr. Siebert!" Hank exclaimed when he heard the voice on the other line. They talked for a few minutes, and I heard Hank say, "OK. See you in a few weeks." Whew...he sounded OK. Hank handed the phone back to me..."I told Hank not to be mad at mom and dad," Dr. Siebert said happily, "I told him to be mad at me...it's not mom and dad's fault, but you need to have this done. He'll be fine now." Once again Dr. Siebert leaves me speechless..."See you in a few weeks!" he said, and we hung up.

Last day of 7th grade
It's been two weeks now...Hank seems OK. Summer has started, with the last day of school just a few days ago. Hank received two awards and sailed through the year with good grades. He is happy to have this week at home to just relax. Unfortunately, we will be celebrating his 13th birthday at the Ronald McDonald House, and therefore he has told me, that I we will be having his party this weekend. (What's one more thing to do before we leave?) I am trying to get him to have a slumber party...outside in our tent, but he is indignant..."You want us to sleep outside?" He clearly doesn't get the whole "camping vibe" that we are trying to create...

Today is the day of our fundraiser. "Pizza With a Purpose". It's our first one since moving back to our hometown. Wish I had time to really plan one and advertise. We put this together in a day...but with our kids' amazing school, and the radio station running a PSA about it, it should go well!

Little miracles have been happening this whole last week. A letter came from the State Controller's Office that said a local bank had lost funds of mine. I went to the bank and found that it was just enough to cover the plane fare to get us to Chicago and back...the radio station recording a PSA for Hank's fundraiser...unsolicited all about 12 year old Hank Gibbs and his fight against Parry Romberg Syndrome!...and last night...last night put me over the edge of stunned gratitude...

Hank is not the only one having surgery next week...13 year old Kristina, from Atlanta will also undergo surgery for her PRS. Mom Karen and I have become close friends over the years...and saw an opportunity to meet in real life and for the kids to have someone to go through the surgeries with. I had put out note on Facebook, asking if anyone had an "in" with the Chicago Cubs...we will be flying out of Chicago and would love to take the kids to a game...but tickets are pricey and our money needs to go towards the necessities...

Our surprise visit with the McQuillen Family in NYC 2009
Last night I got a message from another PRS mom, Flora McQuillen, "How many tickets do you need?" she asked...I responded with a cringe..."nine. 5 for our family and 4 for Kristina's family". (nine is a lot to hope for...) I told her if we had one family covered, we could split the cost of the other tickets... The next thing I know...she sends me an email with a confirmation attached...she and her family have purchased our tickets...all of them...NINE! I couldn't believe it...Here is another family who have walked this walk that we are on. We met them in New York after Hank's first surgery. Their son Pat, was 13 at the time and had already had his first surgery. I will never forget how excited we all were, to meet in person! Pat was the first person with PRS that Hank had ever met and I was so grateful to get the chance to meet them. It was a short visit...just coffee before they caught the train home...but it is a memory that I will treasure forever. I can't thank Flora enough for her generosity. I was in tears as I let Jeff know...and still in tears when I told Karen. And then she was in tears too...
I have no idea what today will bring...The fundraiser starts at 11:00 and goes all day. I will be running back and forth from work, so that we can be there at lunch and again at dinner. I have high hopes that Hank will have some friends there...we will raise some money for Hank...and raise awareness for this disease does not define who we are...but has definitely changed our priorities and opened us up to things we never imagined...good and bad. Today is all about Hank...strong and stoic Hank...facing surgery #5 with grace and courage...

* Note: I started this blog years ago, to keep our family and friends informed on Hank's illness and progress. This is a disease full of unknowns...unknown cause, unknown progression and it affects each person differently. Although we wish Hank did not have to have surgeries, the alternative is much worse and we are extremely grateful we have Dr. John Siebert in our corner. I can't imagine what Hank's life would be like if we never had the micro-vascular free flap tissue transfer. These surgeries give Hank the normal life we have prayed for and we would not change a thing!


  1. Terri....Hank is an amazing young man...you are amazing...I love you guys! I think about you guys EVERY day and I am sure everyone else who has connected with Hank's journey will admit it as well... stay positive, stay the course...we are all pulling for you! xo K

  2. Hi, it's Jaki here from all the way over the ocean. It's heartbreaking having to deal with all this isn't it? My son is 16 now and full of, 'I don't have to do this. It's my body' and all that teenage anger.
    We have never met anyone else with this condition but I feel it's best just to think about what is right for your son and you as a family. George could face jaw surgery if he wants it in the future, to correct his wonky teeth! We are lucky here in the UK that all his medication and care and operations are free. But that doesn't make things any easier.
    Good luck with everything