Helping Hands for Hank

For: The Gibbs Family for Hank's surgery, travel and recovery
Organizer: SLOCAL Bunco and Helping Hands for Hank
Helping Hands for Hank (The Gibbs Family for Hank's surgery, travel and recovery)
$790
of $5,000 goal.
Raised by 17 donors
15% Complete
This fundraiser is closed. Thank you for your support!

The Story

On October 16, 2008, Jeff and Terri Gibbs' then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. Only about one in 6 million worldwide have this disease!! They have found a specialist in NYC who has had success halting the progression.

This is the story of their family, and specifically their son, Hank, as they struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.


Hank had his first major surgery in July 2009 and the revision surgery on Dec. 2, 2009, with a third surgery in July 2010. All surgeries were performed in NYC. Hank had his 4th surgery on October 3, 2012 at the American Family Children's Hospital in Madison, Wisconsin. And now Hank is preparing for his 5th surgery this month in Madison, Wisconsin.

This is a medical necessity.  If Hank does not have this surgery; the tissue will continue to pull the eyelid down and he won't be able to close his eye, which could result in eye ulcers, dryness and many other issues. And as Hank's doctor so aptly said "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." 

Here are some words from his mother on her blog:
"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." Please go to her blog http://www.thehankchronicles.blogspot.com/ to read more about this rare disease, this courageous boy and his loving family!

Website: www.HelpingHandsForHank.webs.com
FaceBook page: https://www.facebook.com/groups/78854522085/

Fundraiser Updates

Posted on June 24, 2014

Posted on June 24, 2014

It's Hank's 13th Birthday!!

Please click on the link https://www.facebook.com/groups/78854522085/ to go to Helping Hands for Hank's FB page to wish him a wonderful birthday.  He's still in Madison, Wisconsin at the Ronald McDonald house.  Please let's show him our support with a lot of Happy Birthdays to Hank!!! 

Posted on June 22, 2014

Posted on June 22, 2014

Posted on June 21st on Hank's Chronicles Blog written by Hank's Mom, Terri.
Surgery #5 and The Wearing of the Green

The alarm going off at 5am was a rude awakening for surgery day. I dragged myself out of bed and quickly got ready so Jeff and I could get the Hank and the other kids up. (Where one goes...we all go). Everyone put on their green, including Hank, as we were all "wearing green for Hank" and hoped others would too! We got to the hospital shortly after 6am and made our way to the third floor Surgery waiting area. After checking in, it wasn't long before they were bringing us back the pre-op room where we would be until Hank went in for surgery.

Hank was in great spirits through all the pre-op stuff of vital signs, nurses, doctors, etc. He laid in the bed in a light blue hospital gown...he is now too tall for the pediatric pajamas...The nurse asked Hank if he would like the liquid that relaxes them before heading in to surgery. He said he didn't want it and would prefer to just go under when he got there. Hank had a few concerns and voiced them: "I don't want to wake up during surgery," he said, "And please make sure I wake up afterwards.., and oh, I don't like the goop they put in my eyes, please rinse it out."  Time seemed to move swiftly as we met each team member: surgical nurses, anesthesiologists, residents and then finally, the man of the hour: Dr. Siebert! He came in with two associates in tow, explained what he was going to do, placed his initials with a Sharpie on Hank's left temple (to make sure they operate on the correct side), took a quick picture with Hank for our "Before" shot, gave Hank a high five and said, "OK, see you in a few!" I quickly put on my paper jumpsuit, shoe covers and hair cover, and prepared to accompany Hank to the operating room.

The goodbyes were quick and tender as Hank hugged Lucy and Charlie and gave his Dad a squeeze. "We love you Hank," they said in unison. The nurse and the anesthesiologist each took grasp of Hank's bed and we were off, rolling at a good clip, down the halls and through double doors. They chatted with Hank as we went, with me trying to keep up at Hank's side.
We pushed through the last set of double doors and into the operating room. I stood back as they got Hank's bed next to the table. He scooted onto the operating table as the doctors and nurses chatted with him. Hank chatted easily with them and answered their questions. There was no fear...at all.

I leaned down and gave him a hug and he wrapped his arms around me, giving me a pat on the back.  I realized that he wasn't the one who needed comforting at that moment...I was the one...and we both knew it. Stoic and fearless...the doctor placed the mask over his face and talked to him as the narcotics started to take effect. "Give him a kiss Mom!" said a nurse, as I sat by his side. I gave him a kiss and told him I loved him. "I love you too," he said in a sleepy voice. I watched his eyes slowly close and then reopen as he struggled a bit against it. "It starts to smell funny, doesn't it Hank?" said the anesthesiologist as Hank's eye fluttered. "Sorry about that! Does it smell like your little brother's dirty socks?" Hank let out a little laugh and that was it. He was out. I felt my heart leap into my throat and the tears welling up in my eyes as the nurses looked at me with empathy and the one next to me placed her arm around my shoulders. "We'll take good care of him," she said as she turned me towards the door. I stopped and took one more look back, not wanting to forget the scene.

As we headed through the doors and down the hall I asked, "Where is Dr.Siebert?" Realizing he had not been in the OR when I was. At that moment I heard a commotion of voices as Dr. Siebert and his two associates came around the corner and headed towards us. "There you are!" I said as he approached. "I had to check on another patient," he exclaimed happily. "Are you OK?" he asked. I nodded as he gave me a hug. "Don't worry, he'll be fine!" he said, "we'll take good care of him." "I know," I replied, "I'm not worried, it's just hard to leave." "See you in a little while!" he exclaimed as they hurriedly headed down the hall. I was brought back to the room we started in and reunited with the rest of the family. "How did he do?" asked Jeff. "Like a champ!" I said, as I started to cry, "he showed no fear...so strong."

We now had at least two and a half hours to wait. We were given a pager that looks like the pagers they give you at restaurants to let you know your table is ready. Except that this one has a screen that the OR sends text messages to.  The first message came through about 45 minutes later: "Surgery has started. Hank is doing well at this time." We headed to the cafeteria to get some breakfast and coffee. The second message came an hour and a half later, "Surgery is progressing. Dr. Siebert is still working." By now, Kristina's family had arrived and were in the room next to us. We had the chance to visit a bit, and then headed to the waiting area outside the surgical rooms.

Kristina's mom, Karen and little brother Brandon, joined us in the waiting area, where we could plugin our devices and connect with the outside world. We compared notes, chatted and tried not to stress out over what was happening with Hank and what was to come for Kristina. (so nice to have the support of a friend who is going through the same thing) My Facebook was blowing up with all the photos of people posting their pictures in green! What an amazing blessing and distraction for us, as we watched the photos pop up and the sweet messages for our boy! I couldn't wait to show him!

As two and a half hours came and went, we got our last message from the OR: "Surgery is finishing up. Please return to your Pre/Post". That's all I needed to hear, we grabbed our stuff and headed to the room. It was another 30 minutes before we heard from anyone. Finally a nurse came in and said that Hank was heading to recovery and they would come and get us once he was awake. I tried to get in to see him earlier, but she wouldn't budge. We had to wait until we saw Dr. Siebert anyway...but it was worth a shot.

A little bit longer and here came Dr. Siebert, big grin and exclaiming, "Hank did great!" He sat down on the only available seat...the trash can, and told us the details. He talked about the incision sites and how he debulked the jawline and rearranged the tissue around the eye and cheekbone and between the mouth and nose, as well as the work done to give Hank the left side of his upper lip, which had been missing. "Hank is going to be mad at me," he said shaking his head, "the mouth stuff hurts for a couple of days...he is going to be mad!" (For the record, Hank is not mad...and has never been mad at Dr. Siebert). He talked with us for quite some time, and then headed off to see Kristina, to get her ready for surgery, while we waited to see Hank.

At long last, a technician came in and got us, "just one parent at a time," she said. "You go," said Jeff, knowing how eager I was. I followed her through the double doors and into the recovery room, where Hank laid in a bed behind a curtain. His eyes were closed but he murmured when he heard my voice. "He's in a lot of pain," said the recovery room nurse, "I am trying to get it under control for him." I reached out for his hand and told him how good he looked. I explained that he had an incision over his eye and his eye looked swollen shut, and he had the plastic wrap on his cheek to minimize swelling and hold everything in place.

As I looked at him, I noticed the tears, escaping under his closed lids, down his cheek and pooling in his ear. I asked her for a tissue and she handed me gauze. "I'm just going to get this little bit of liquid out of your ear," I told Hank. I blotted it out, tears mixed with blood, and felt my heart give that familiar lurch that I feel, seeing Hank after surgery. I held his hand and watched the monitors...heart rate, oxygen level, blood pressure...the oxygen tube running to his nose, the drain coming out of his head, the IV in his arm...this boy has done this five times...this strong, resilient, courageous boy...I felt the surge of pride and pain all at once, just wishing that things were different and knowing they can't be.

The nurse slowly got Hank's pain down to a manageable level, so I switched places with Jeff, giving him a chance to be with Hank. Soon, they came and got Lucy, Charlie and I, and we gathered our stuff and Hank's too, and followed Hank, bed and all, into the elevator to go to his room. Last time we were here, Hank got pushed over to the adult hospital...not what we wanted...not kid friendly and for the parent staying with him...difficult. ("Hello bathroom!"...or should I say "Toilet behind the curtain"?) But this time...his room was wonderful! Maple color cabinetry and floors, muted and beautiful in blues and greens. As Hank got settled in, Lucy and Charlie stood by his bedside, watching the monitors, listening to the nurses talk and soaking it all in. The nurse explained the pain system to Hank...0-10, with 10 being the worst. "what is your pain level now?" she asked, Hank held up both hands, "Eight? You are at a level eight?" Hank gave a nod. I took the nurse aside, "This kid has a high tolerance for pain," I told her, "If he says it's an eight...guarantee you...it's a twelve for someone else." "Got it!" she responded, "Thank you for telling me. It makes a difference."

We sat in Hank's room, talking to him, while Lucy gave him the picture she colored while he was in surgery. Hank reached up to thank her and pulled her down into a hug. Lucy and Charlie were concerned and Lucy came to me and whispered, "I hate seeing Hank in that bed...poor Hank." I felt the same way...a little later, Dr. Siebert came by to see Hank. "Hi Hank!" he said with a big smile! "How are you feeling? Are you mad at me? I know the mouth stuff hurts!" Hank mumbled that he wasn't. Hank's left eye was swollen shut, and Dr. Siebert leaned down to look at it, "How's that eye? Can you see out of it?" he asked as he reached down and gently popped the lid open. "Oh HI!" I exclaimed as Hank looked at us with both eyes! He didn't realize he could open it! Dr. Siebert explained to Hank what he had done in surgery and asked Hank what he thought. Hank gave him two thumbs up and what passed for a smile. I asked him to pose with Hank for the "After Photo". "If anyone asks what happened, Hank, just say...You should see the OTHER guy!" Hank gave a laugh and they posed for the photo.
The rest of the afternoon and evening consisted of us trying to keep Hank comfortable and pain-free. He couldn't eat because of his tongue and lip...we could get him to sip water and I marked down the amounts on the board after each time. He began to feel nauseous...this was a new one. Hank has never been sick from anesthesia. "I'm going to be sick!" he exclaimed as I scrambled around to find something. I found a bucket/bowl thing in the bathroom and put it in front of him. Oh, how I was regretting staying behind as Jeff took Lucy and Charlie to the cafeteria for food. I am pretty stoic myself...but I am not good with vomit...which has made those times in motherhood quite difficult...when someone throws up...I throw up! "Hold it together!" I told myself, as Hank became violently ill, throwing up every last drop of water we had given him over the last few hours. I got a washcloth and wiped at his mouth and nose. The nurse took the bowl and gave him a new one. "Oh....she said...I don't think he is sick from the anesthesia..." Apparently Hank had swallowed quite a bit of blood during the surgery and it had come up with the water. I later found out that of all things that the body can't handle is blood in the stomach. After that, Hank felt better...his pain level never went lower than a seven, but he started to get hungry and was able to keep water and apple juice down. Dr. Siebert checked on Hank again, later in the day. He filled us in on drain removal and when we could go home. He talked with Hank a bit and then was off!

Hank continued to have pain at a level seven for the rest of the day and night. He was able to keep the apple juice and water down...had a little bit of pudding. He was in and out of sleep, waking up long enough to read a text from a friend and then sleep again. The kids asked who was going to stay the night with Hank. Before I could show them my bag, packed for an overnight stay, Hank replied, "Dad." What? DAD? Ouch! "It's just that you stay every time, Mom," said Hank, feeling my disappointment emanating through the room, "Please don't be offended." What could I say? Of course my feelings were a bit hurt...but I get it...a boy needs his Dad...but really? I have to stay at the hospital when the only real bathroom is down the hall through two sets of double doors? And Jeff gets to stay when there is a fold out bed, and full bathroom with a SHOWER? Figures. Jeff went back to the Ronald McDonald House to get a few things while I showed Hank a few photos of the many people who posted their photos of themselves, family members, co-workers and even dogs wearing green! He chuckled and made small noises of appreciation. I told him I had lots more, but we could wait until he felt better. The nurse and I got Hank up, so he could use the restroom. When he was done, I came in to help him back to bed. He was looking in the mirror and had his hand on the plastic wrap on his face. He looked at me with tears in his eyes and turned and wrapped his arms around me. "I'm sorry Hank," I said, trying to keep my own tears at bay, "Is it the pain?" He shook his head, "Is it how you look?" He said, "It's all of it." UGH...how many times can a mother's heart break? This is the worst! I told him that it would be better in a few days and in the long run, he would be so happy about it...I held him until I felt him relax. This is just too much for a 12 year old to have to deal with!  We got him back to bed just as Jeff and the kids returned.
It was getting late and we still hadn't seen Kristina! Lucy said she would like to come with me, so Lucy and I met Karen at the elevators and she brought us back to Kristina's room. Wow! Kristina looked great...and she was sitting up eating spaghetti! I felt a twinge of envy as I saw how good she was doing and how hard everything was for Hank. But then I remembered Hank's third surgery...it was out-patient and he was eating pizza that first night...so I understood...just wished Hank was doing as well. Lucy started feeling anxious, wanting to be with Hank. We said our goodbyes and headed back down to Hank's room.
The kids were tired, I was tired...but we didn't want to leave. Charlie laid down on the couch and Lucy sat on Jeff's lap. Hank was asleep once again and I checked Facebook to see all the new photos. Suddenly Lucy broke out in tears. "What is wrong?" Jeff asked. "Oh...poor Hank!" she cried. "I feel so bad for Hank!" Jeff consoled her and rocked her as she sobbed. That makes three kids who shed tears today, since a little earlier, I had found Charlie curled up in a ball, sobbing over Hank. These kids were at the hospital from 6 am to the now 9 pm and were wrung out and exhausted...emotionally and physically. I gathered them up, we said our goodbyes and  headed out to the Ronald McDonald House.

Charlie fell asleep the minute his head hit the pillow. Lucy cried in my arms over her brother, until she finally passed out. I laid there, worrying about Hank and Jeff, hoping they would get some sleep...and listened to the very loud phone conversation taking place in the room next door. I now know that woman's whole story...now if I could just figure out which one she is...
The next morning, Jeff sent a text telling me they were taking the drain out of Hank's head. Hurray! That was a good start to the day. However, Hank's pain level had shot up to a nine and they were fighting to bring it down. Jeff told me to stay away for the time being, as Hank didn't need his siblings there. Jeff finally said that he would walk back from the hospital so I could go up and see Hank. I headed up as soon as he got in, and walked the five minute walk to the hospital's front doors.

Hank was asleep when I got there and I met his new nurse, Bill. I immediately liked Bill. He knew his stuff. He had managed to get Hank's pain all the way down to a three or so. Had Hank off the IV pain meds for 8 hours and was focused on getting Hank to where he needed to be in order to leave the hospital. When Hank woke up, his pain level was way down. I ordered him a fruit smoothie and we talked and hung out. I saw through Facebook that Kristina was released earlier that morning and was now chatting with Ronald McDonald, who stopped by to visit the kids at the House. (I am not fond of clowns, so I think I am OK with missing it!) However, Lucy and Charlie sent me a nice photo...Dr. Siebert's resident showed up a while later and asked Hank if he wanted to go home or stay. "Home!" Hank exclaimed. Ok, you need to walk around a bit first. Hank was given another dose of pain meds to manage the pain and he got himself dressed as Jeff and the kids showed up.

We did all the necessary paperwork, met with the pharmacist, ordered Hank a couple of fruit smoothies for the road, and prepared to go. But first Hank had to prove he could get out and walk and be steady on his feet...so we took at walk to the elevators and headed downstairs to get his prescriptions. Hank was hilarious. His hair was messy and as we walked by the nurses station, he turned and said, "I know I shouldn't be going out like this...my hair is a mess!" What a far cry from past surgeries, where he hid his face. This time he was making a big joke of it! The nurses thought it was a good joke and he left with a bit of a swagger...At the pharmacy, he asked the girl at the counter for a comb, because his hair was a mess and he was a bit embarrassed by it. So glad his sense of humor has remained intact! We made it back to the room with no problem, once again Hank amazing me with his strength.

With everything in hand, Hank was released from the hospital! It was about three in the afternoon...as we headed out the door. His nurse, Bill, had been joking around with Hank the whole time...both of them giving each other grief. Just what Hank needed! No wheelchair for Hank...he walked on out of there!

We went straight to the Ronald McDonald House, where Hank promptly got into bed, turned on his Tablet and started reading. Already, he seemed more relaxed. Now, I would like to say that this is where the day ended...relaxing at the house, monitoring Hank's medications and pain levels...keeping him comfortable, getting him to eat...and while that is all true...our lives are way more exciting than that!

Earlier in the afternoon, Jeff had noticed an inflammation on Charlie's leg. We decided we better keep an eye on it...and so that night we checked it again. Good Lord! What was that? It was swollen and hot to the touch...and it was 9:30 pm! Jeff said we needed to take him to the ER. "Oh, I said," it can wait. So Jeff drew dotted lines around the inflamed area. About 20 minutes later, we looked at Charlie's leg...the inflammation had grown well beyond that dotted line. I grabbed my purse and keys, "C'mon Charlie! We're going to the hospital!" Charlie was less than thrilled as he trailed behind me.

Seriously? Didn't we just get one kid out of the hospital? Now I was heading in with another one. Two doctors looked at Charlie's leg, but couldn't decide if it was anything...should they give us antibiotics or should they send us home?  In the end, they said it was infected...called it Cellulitis, gave him a dose of antibiotic and a prescription to fill the next day. It was midnight before we got home. As I finally laid my head on the pillow...I reflected over the last two days...I know they say that God doesn't give us more than we can handle...but sometimes I wish God didn't think so much of me!

Posted on June 19, 2014

Posted on June 19, 2014

From his Mom, Terri:  "Hank is sleeping now, which is good. His pain level has remained at a 7, and he is battling the effects of anesthesia...he can't eat or talk much because of sutures in his mouth. But...Dr. Siebert is pleased with the outcome and in a few days, Hank should be feeling much better! For now, we will try to keep him comfortable and pray for a speedy recovery!" The photos you are posting are wonderful and helping his attitude!" People are posting photos on FB of them wearing green to show love and support of Hank! 

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