Leading up to Surgery #7 in Seattle

We are in Seattle, and Hank is scheduled for surgery tomorrow. I'm not ready, it came too fast! I haven't updated this blog in a long time...we have an Internet stalker, who will probably reappear now...but I am taking my chances.

 A little background... Hank had surgery last summer for a tissue revision. The goal was to move the tissue in his cheek up to mimic a cheekbone and support his eye. We knew at the time that Hank would need bone surgery, but were trying to buy some time. Because Hank was so young when his Parry Romberg started, his bones did not grow properly. But we weren't ready to commit to, in my mind, "dreaded bone surgery". Unfortunately, the surgery did not have the desired result as gravity was too much for the depressed bone.

One night in October, I stood with Hank in his room, as he got ready for a school dance. He was looking in the mirror and reached up and touched his cheek. "I think it's time for the bone surgery," he said. "It's time."  And with those words, I reached out to his doctor, who referred us to a colleague in Seattle. (Dr. Siebert has been Hank's surgeon since 2008, but specializes in muscle and tissue...not bone.)

A month later, Hank and I found ourselves at Seattle Children's Hospital in the Craniofacial Clinic, meeting with a new team of surgeons. After 8 years of me leading the charge for Hank's healthcare, I found myself taking a backseat as the conversation took place between the surgeon and Hank. I was just there to fill in surgery dates. Hank was articulate and spoke of why exactly we were there. Together, the two of them and the rest of the surgical team came up with a plan! I was so proud of Hank! Age 15, with a full understanding of what needed to be done!

Which brings us to now....here, in Seattle for surgery. We flew in on Saturday from California. First things first...we found the nearest pizza place to feed our starving children!
In Madison, we were blessed to stay at the Ronald McDonald House during our stay for three surgeries. We were not able to get into the Seattle house, as Seattle is a big cancer center and the RMDH is full. On Sunday, we started the day at a beautiful old church, "Church of the Blessed Sacrament", where we went to mass and then asked the priest to bless Hank for his surgery. After a beautiful blessing, we headed out to Pike's Market where we immersed ourselves in everything from hat shopping to seafood eating to watching the fish throwing and more. And after numerous trips to Target, we found all the supplies we needed to make our stay here as comfortable as possible. We are staying at a cute vacation rental by owner (VRBO), which is the bottom floor of a three story house. I love the house...it is craftsman/bungalow style with beautiful finishes and an amazing garden! Added bonus is "Woody", the 3 month old Jack Russell Terrier that lives upstairs. The kids are in heaven!

Today was Pre-Op day. Hank had three appointments with his surgeon, Dr. Hopper and the surgical team, with the social worker, anesthesiologist and the photographer. He was weighed, measured, and all the procedures were explained fully. Hank shared his concerns and all questions were answered. The only unhappy thing for us was being told the whole family would not be able to wait with Hank in pre-surgery and none of us would see him in recovery. To come all this way together and to go through 6 surgeries as a close knit group, this was new...unexpected...and not what we hoped for. It also looked like I would not be able to accompany Hank to the OR, as I have for all the other surgeries. "It's OK, Mom, I'll be OK", Hank told me, when I saw the look of disappointment on my face. So brave...braver than I...and I'm sure he really is OK with it...but I'm not...I want to be there...just to see everything and to hold his hand...or maybe he is holding MY hand...

Dr. Hopper explaining the procedure

So with all appointments done...we went out and had burgers and fries and all things comforting. The next day was going to be stressful...and all I wanted to do was gather this little family together and hide away for the night. Which is exactly what we are doing. Tomorrow will be amazing...a new adventure...a new journey for Hank. Hank is getting his cheekbone back. A step in repairing what this awful disease has done. But I love his face now. I love his smile and his shining eyes! I know he needs this. He needs to support that eye...but I don't ever want him to think he needs to look better...he is handsome from the inside out. But medically, he needs this and ultimately it was his decision to move forward with this. I am proud of this boy, and can't wait for this to be done so he can get on with life!

First night in Seattle!

Blessed Sacrament Church:

Pike's Place Market:

  

 The Troll Under the Bridge:

Pre-Op at Seattle Children's Hospital

Hank with Dr. Hopper and the Craniofacial Surgical Team

The weight of the world...

In the days leading up to surgery, there were many times I would catch him like this. He has a lot on his mind.

Day 5 Part Two: Recovery and Blessings

 Day 5 Part Two: Hank's Miraculous Recovery

Hank has been sick and now it's time to nurse him back to health. After leaving the domain because of chest pains, and now battling dehydration, we were back in the room resting. Hank was drinking water and Sprite as we quietly reflected on our pilgrimage so far. Sitting on my bed, with Hank laying in his...I asked Hank, "What do you think of this trip?" He laid back and thought..."I miss home a little bit," he revealed, "But I am not ready to leave Lourdes." I told him I felt the same way. It wasn't until we got home and I had time to really absorb everything about the trip, that I realized those words held more meaning than I could have imagined at the time...

Convent of the Poor Clare's

With Hank wanting to sleep, I pulled curtains and darkened the room. While he slept, I pulled out my tablet to try to get online. With no luck, I journaled more of our trip and then slept too. Hours later, we both awoke...Hank was looking better and drank more water. Wanting to sit up and read, I asked if he would be OK if I ran over to the cafe to get online. With his blessing, I quickly set out to find WiFi access. I should mention that I did get out earlier in the day, after lunch with Christine and Dr. Jim, who took me shopping for souvenirs and Order of Malta swag! We went up to the Convent of the Poor Clare's and I was able to purchase rosaries and medals to bring home. Dr. Jim reminds me of my own Uncle Jim, the same wit and dry sense of humor...and I am pretty sure they both feel the same about shopping! But even so, he patiently put up with my need to look in almost every store!

At dinner time, I ran down to the dining room and brought soup back for Hank, not really liking it, he settled for bread, and pastries. While he ate and played on his phone, I went back to the dining room for a quick meal. Dr. Jim and Christine were downstairs and asked if we would like to go somewhere. I told them that Hank and I had talked about going to the grotto since we missed it earlier in the day, but I wasn't sure if Hank was up to it.

When I returned to the room, Hank was awake and looking great! I asked if he wanted to get out of the room and go to the grotto. He said yes, and got dressed. Joined by Dr. Jim and Christine downstairs, we started our walk. It was just getting to twilight and crowds were already filling up the Domain for the nightly rosary procession.  Instead of walking across the concourse, we took the ramp up to the upper level of the Rosary Basilica. (We would be taking part in the procession the following night)

Looking over their shoulders at the start of the procession below.

There were people lining the edges, looking down at the crowd below, and as we made our way up, the voices of the pilgrims reciting the Rosary en mass, gave me goosebumps. Standing at the top of the square, we squeezed between the others, to get a better look. Below us were hundreds of people holding candles, and walking the length of Rosary Square and back. Following behind a statue of Our Lady of Lourdes, carried on the shoulders of 6 strong men. The Rosary was being said in Italian, with every few "Hail Mary's" being said in another language. At the end of each decade (one Our Father, 10 Hail Mary's and a Glory Be), the choir would lead the crowd in song. I rejoiced as I heard the strains of "Immaculate Mary" sung by so many and joining in with them, my breath caught as they raised their candles high in the air each time they sang, "Ave! Ave! Ave Maria!". I found myself in tears at the beauty of faith before me. I looked at Christine, who also had tears in her eyes. "I am in tears every time I see it," she later told me.

I did not want to tear myself away, but we wanted to get to the Grotto before the crowd below us dispersed and joined us there. Walking down the ramp, I joined in the Rosary with those below, and

realized all those around me, where doing the same. A few minutes later, we took our place in line, to walk through the Grotto. The feeling here was different. Even though we could still hear the voices and the music, it all seemed so distant. As if a heavy cloak were draped around us, enveloping us in a warm embrace. The line moved quickly and quietly, and as we edged closer, I once again was overcome with great love and emotion. This had a much different feel this time. It was more personal...(just writing about it now, I am once again in tears) The spring that Bernadette dug, which feeds the baths, was clear through the plexi-glass; rushing over the rocks, as it has done since 1858. We continued our slow walk through, each in our own silent prayer. As we came out and walked under the spot where Our Lady appeared (and a statue of her stands today), I paused and turned to her. Radiant in the light, and so clearly visible against the dark of the grotto, I saw her as St. Bernadette saw her all those years ago. "A lady dressed in white with a blue sash and a rosary. A yellow rose was on both of her feet."

Lighting Candles

We left this part of the grotto and continued towards the baths, where numerous candles are set up. All sizes are there...some which can burn for a month. Jim and Christine generously purchased candles for Hank and I to light. We each took our candle and searched for a place to put it. There are numerous "boxes" which hold a multitude of candles...just finding empty spots was the trick. We found somewhere to place them and lit our candles. I placed mine in and stepped back to say a prayer. Hank went next, lighting his candle and doing the same. I caught his face in the candlelight...reflective and prayerful, and something else. "Something is different", I thought to myself. Something that I didn't know but felt...

We walked back by the Grotto, pausing to stand back and take it all in. The lights shining on the statue, the illuminated spring, the long line of pilgrims waiting to walk through, the people filling up all the benches facing the Grotto. The crowds of people, like us...just soaking it in. And the many people...kneeling on the concrete...in groups of two...or just individuals, with their heads in their hands, prostrating themselves before the Virgin Mary. So much love here...so much devotion...so much emotion...so much peace. And all of it...in silence...
The draw of the Grotto was strong for both Hank and I ...and we would continue to go back again and again, during our trip.

We slowly walked back through the domain, where the crowds were now sparse, and made our way through the streets of Lourdes and back to our hotel. "Thank you Hank," I said as we walked, "I know you did this for me." He smiled slightly, "Yeah...I know you really wanted to go to the Grotto, Mom" he said. Here was this boy...so sick just hours before...and making this sacrifice for me... We said goodnight to Jim and Christine, thanking them for taking us out. Hank and I made our way up to our room...and I thanked Hank again for going. He looked at me out of the corner of his eye and draped his arm around my shoulders..."I wanted to go too..."

*up next: Mass in the underground basilica, the teen retreat, candlelight procession...oh and machine guns...!

View of the Rosary Procession from above.

The spring in the grotto

The Grotto at night

Candles between the grotto and the baths.

Day 5 Part One: In Lourdes and Hank is Sick!

Day 5 Part One: Saturday May 2, 2015: Illness, Medals and Adoration

Hank is sick and it has gone from bad to worse. Somewhere around 1:00 am, Hank woke up and made a mad dash for the bathroom. An intestinal bug had taken hold and he was in a bad way. I didn't think there was anything left...and yet he continued to be sick. He finally laid down, groaning in pain. I was at a loss with nothing to give him. No Internet...no cell service...it's the middle of the night and I am here in France and I just want to call home. (It's only 4 pm there, after all...)

"Hank, I only have water for you...maybe I should go get the doctor," I said. "Yes! Call the doctor, Mom!" Hank moaned. That was all I needed to hear...no kid wants the doctor...
Luckily, the Order of Malta has a huge medical team, with doctors on each floor. I went out into the hallway to look for help. I stood outside the door marked "Medical"...and then stood outside the door marked "Emergency". "Which door do I knock on?" Maybe I should check to see who is in each room. There was a list of names and room numbers inside the elevator, so I pushed the button and waited. Inside the elevator, I quickly scanned the names...I tried to be quick as I did not want the elevator moving and risk being caught in my Spongebob pajama pants...(Why did I bring Spongebob pajamas to Lourdes?) The doors to the elevator don't stay open by pushing the door open button, but rather by an electronic eye at knee level. I stood in the elevator, swinging my leg to keep it open...realizing that whoever is manning the security camera was getting an entertaining show...It was too hard to read and keep the doors open...I abandoned the elevator and ran back to the room to get dressed. "Did you bring the doctor?" Hank muttered. "Not yet...on my way to get him," I replied.

Dressed is sweats, I headed down to the bar with the intention of asking if anyone was a doctor...that way I wouldn't be waking anyone up. I saw our assistant team captain, Katherine, and headed straight for her. She saw me coming and stood up...the minute we made eye contact, I broke into tears. "What's wrong?" she asked with a worried expression. "It's Hank..." I sobbed, "he is sick...throwing up...and more." (I have no idea why I was crying...all I can compare it to is seeing your mom and crying in relief) Katherine took charge with a "let's go get the doctor" and up we went. She went right up to the door marked "Medical" and knocked on the door. An almost immediate response as the door opened and the doctor stood there. "Sorry to bother you...we have a sick Malade..." He invited us in and I told him Hank's symptoms. He gave me Imodium, something for nausea and pain. "Give him this now and another if he gets sick again," he directed. Quick and professional, I felt more confident immediately.


Back in the room, Hank was once again asleep. I went into the
bathroom and cleaned it up in preparation for his next bout. I laid down in bed knowing that there probably would be no sleeping. At 4 am he was up again and heading for the bathroom. I got out the medicine and grabbed a water bottle...and then I saw it...the small plastic water bottle with a picture of Our Lady of Lourdes on it. It was left here for us when we got in our room on Wednesday. I opened the Lourdes water and poured it into a glass. "Here Hank...this will make you feel better." He took the pills and finished the water, laying down and falling back to sleep. He woke up at 7 am feeling better, and I headed to breakfast in search of something he could eat. Crackers? Soup? Something light... I was worried about dehydration...we were already 1,000 ft above sea level and were told to stay hydrated...

Downstairs, I ran into Maura, the wonderful nurse for the Red Team. "How is Hank?" she asked. I filled her in on the night's events. "He needs ginger ale...I will go find some." And with that, she was off. As I quickly grabbed some food for myself and sat down with the Burkart family, John B. asked, "Where is Hank?" I explained the situation and told him that I needed to head to the grotto for more Lourdes water. "I'll go!" he said and quickly jumped up. And with that...he was off. Numerous others now started to inquire about Hank as word spread quickly. Soon, I was armed with a liter of Lourdes water, an armful of Sprite (ginger ale could not be located) and a french roll. I headed back upstairs to see the patient as the rest of the pilgrimage got ready to head to the grotto for morning Mass. (I should add that a few of our party offered to stay with Hank and let me go to mass, but I knew where my heart was and if I were sick and age 13, I would want my mom...)

Hank was awake when I got there and still looking gray. "Are you hungry?" I asked. He shook his head. I poured a glass of Lourdes water and gave him his medicine. I asked how he was feeling and he said, "better" but not great. Our voiture team (French for "cart") Dr. Jim and Christine, stopped by to see how we were. (Dr. Jim had taken care of my bout with the flu) I assured them that we would be fine and they said they would check on us when they got back. After talking for a few minutes, I shut the curtains and let him sleep, as I tried in vain to get an Internet connection. I was very disappointed that we were not at the Grotto Mass. To be in that holy spot with the holy Eucharist...but I could see it was not to be...

Malade and Companion Medals

The next event was not supposed to take place until 11:45am, when everyone would head to the Salle
Notre Dame, where malades and companions would receive their medals. This was a big deal. The Grand Master of the Order of Malta, Fra' Matthew Festing, would be arriving and handing out the medals. Something I knew we didn't want to miss...but it would depend on Hank's illness. (or lack of illness!) Hank woke up feeling better and said he wanted to go. He took a quick shower and I let our cart pullers know that we would be there. Hank and I headed out the front door of the hotel where our cart team had assembled. Everyone else had gone from the grotto to the site and we were the only ones at the hotel. With Hank situated, away we went at a fast clip to get there in time. Down the street, across the Domain and to the hall. As we rounded the corner of the building, all the voitures were parked and all the malades and companions were inside. But our red team leaders were out front and cheered when they saw Hank. "You made it, Hank!" they cheered. Bishop Soto came over and asked, "How are you doing Hank? Glad you made it!" Hank mumbled a response and I shot Bishop Soto a grateful look.

Hank receives his medal from the Grand Master.

With smiles and hugs we were led into the hall, where room was made for Hank and I to slide into a row with the rest of our team. It was a nice day, but Hank was cold. "Let me get you a blanket from the cart," I said. "I'll get it!" came from the row in front of us. Nineteen year old Keanu, companion to his mother, Sandra, another malade, jumped up. A moment later he returned with a blanket that I wrapped around Hank. "Better?" I asked. Hank nodded but couldn't seem to really warm up.

Ten minutes later, the introduction of the Grand Master was made to the applause and cheers of the room. A large man with a British accent, Fra' Festing seemed strong, humble, jovial and serious...all at once. Although from England, he lives most of the time in Rome, where the headquarters of the Order is located. With a blessing  of the medals by Bishop Soto, the ceremony started. Row by row, the Grand Master made his way through the room. We handed each other our cameras, in hopes of getting the rare photo of the Malade with the Grand Master. As he approached our row, our excitement grew, and then he was there...he reached me first and as he placed the medal in my hand, he clasped both my hands around it. I have no recollection of what he said, if anything, but I was completely starstruck and grateful to be there. Hank was next and Fra' Festing talked to Hank, but I could not hear what was said. But although fleeting, the moment was longer, he lingered...and Hank smiled.

As we pinned our buttons on, I could see Hank was rapidly declining. "How are you feeling?" I asked. "Not good...I have a headache," was the response. He laid his head on my shoulder...his head felt clammy. With the ceremony over, we once again loaded up the carts...but last one in seemed to mean last one out...and so we sat on the steps and waited. At last our voiture was free and Hank was loaded up. Well, not only did we have the Hine's as our team for the day, but we also had the Most Reverend Bishop Jaime Soto. "All set?" he asked as he grabbed on to the back of the cart. We joined the procession and made our way back to the hotel. Hank and I headed up to the room where Hank changed back into his sweats and I headed down to lunch, in search of something he could eat. I returned with a bowl of soup, french bread, banana and crackers. (I had a lot of help from Nurse Maura, gathering up things) Hank did not like the soup, (neither did I) and accepted the bread and crackers. He was happy that his phone was getting Internet and didn't even respond when I told him I was going to run down and eat lunch.

There was free time after lunch today and Malades and companions were encouraged to rest. Perfect! Just what we needed. The next event was not until 3:30, when we would gather in the garage to head over to the Domaine for the Blessed Sacrament Procession and Adoration and Blessing of the Sick. After a quick lunch, and contact with Bishop Soto and the Hines, I headed back to the room. Hank was still awake and feeling better. We had a chance to just chat with each other and reflect..."What do you think of all this?" I asked. Hank sat quietly for a moment. "I feel stronger in my faith," he said. We talked about the boys he had been hanging around with. "Are they nice? Do you like them?" He responded with enthusiasm, "They are SO nice. I really like them. They inspire me to put on the uniform they are wearing (The Order of Malta) and come back here." What more could I ask for? Although tired and not feeling well...Hank was happy, full of faith and inspired. Healing comes in many forms...

The size of the crowd

Hank slept the afternoon away. I woke him up before adoration. "What do you think about going?" I asked. "OK," he said. I plied him with more Lourdes water and we headed down to the garage. Loaded up, we were once again on our way. With Jim as our puller and Christine and Bishop Soto as our pushers, I walked alongside the voiture, where I could talk to Hank. It was clear skies, although humid...and a bit hot. As we got to the concourse, they separated Malades and companions. The pullers brought the voitures in and parked them side-by-side in long rows. The next row of voitures were parked directly behind, again in long rows. I had a moment of panic when I realized Hank was locked in! Knowing that he wasn't feeling his best, I wondered..."what will happen if I need to get him out of here?" Katherine saw the look of fear in my eyes and I said, "Hank's locked in..." She put her arm around me and we made our way through the crowd to where Hank sat. "How are you feeling?" I asked. "My chest hurts," he replied. I gave him to some more water and chatted with those around us. The afternoon was warming up and the humidity made the air seem heavy.

A few minutes later, I looked over at him. He didn't look right...something is wrong. "Hank, what is it?" I asked, trying to keep the alarm out of my voice. "My chest hurts, it's hard to breathe," he responded. I grabbed the nearest Knight. "Hank's not well! His chest hurts! It's hard to breathe!" Nurse Maura was at my side immediately. "Hank, how are you? What is wrong?" Once again Hank answered, "My chest hurts." "We need a doctor!" Maura said loudly...and off she went to locate one. Within a minute, she was back with a doctor in tow. He listed to Hank's heart...and then he listened again. Those around us stopped talking and a hush started to go through the crowd. "His heartbeat is rapid..." said the doctor when he finished. "It's too fast...we need to get him out of here." And there it

was...my fear. Locked in with no way to get out. But I should have known that the quick thinking Knights of Malta would have a plan. They quickly had Hank switch carts with a malade who's cart was on the end. As the others looked at us with alarm, "He'll be fine," they called, "we are praying," I heard. Hugs and and hand holds...they disengaged the voiture. Bishop Soto appeared at my side and grabbed the back of the cart. "Oh Bishop Soto!" I said, "You don't have to go with us! Stay here and enjoy!" Without releasing his hands, he said, "Oh no...I've got this! Let's get Hank back!" and we started making our way against the flow of traffic..with thousands of people here, this was not the easiest tasks. The doctor who listened to Hank's heart accompanied us back to the hotel...as did Katherine the Red Team's assistant team captain, I felt terrible that they would be missing adoration and making this walk all the way back, but they assured me that all would be fine.

Back at the hotel, Dr. Jim, Katherine and another doctor, all escorted us to our room as Bishop Soto and Christine took care of the voiture. Soon the doctor we woke in the middle of the night,along with another doctor showed up and there we were...Hank and his team of medical professionals! As the one doctor listened to his heart, the other three stood attentively watching. "I think he is dehydrated," said one. They all agreed. I so wanted to step back and take a photo....when do you have FOUR doctors come to your room to treat you? And they weren't in white coats, but in the black uniforms of Malta...but would I look like an uncaring mother? "Excuse me...could you all get around Hank and smile for a photo?" yeah...didn't think that would look very good...but I bet they all would have done it!

With all in agreement that Hank was dehydrated, they stood and waited for Hank to drink the glass of water by his bedside. "Don't worry," they told me. Just keep making him drink water and he will be fine. All left but Dr. Jim, who said, "Let's leave the door to your room open and the window and get a cross breeze. I did as was directed and sat down on the bed next to Hank. "You'll be fine," I told him. He nodded and drank the water. A few minutes later, Dr. Jim appeared with a glass of ice. "This will help make that soda easier to drink," he said, "it has some calories in it, so see if you can get him to drink that as well." He said he would be down in the lobby if we needed him and left.

Hank and I once again had a chance to talk...to relfect. "You know," he told me, "I had no idea there are so many good, kind people in this world." I had to agree...although I think I knew...I just didn't expect them all in one place...!

Companion Medal

Mass at the Grotto.

Adoration Procession

Procession of Adoration

Another mother/son on our red team.

In front of the Rosary Basilica of the Immaculate Conception

Knights of Malta in their robes

Knghts of Malta

The Most Reverend Jaime Soto

Adoration Procession

Dames of Malta. Nurse Maura in the middle.