Monday, September 10, 2018

The Next Steps

We met our new surgeon, Dr. Anari, at CHOP today and so many fears were alleviated!  He is so kind AND knowledgeable.  It was obvious that he had studied Abby’s file.  In fact, Dr. Anari told us that Dr. Campbell discussed all of his complex cases with him and they created their plans going forward together in May/June.  That Dr. Campbell...💕

I am feeling really good about our decision to go to Anari.  He wants Abby to enjoy being a kid this winter and wait until the spring for an expansion.  He really emphasized the quality of life and Abby was thrilled not to have surgery right now!

We talked about the long-range plan (which is tentative at best when you have a kid like Abby!) and discussed possibilities for her kyphosis.  Kyphosis is a monster and is very difficult to treat, but she is stable for now. He seems to be a planner, which made my type A heart happy!

We were also able to enjoy lunch with two other VEPTR families, which is always so great!  Talking with people who get it makes the journey a little less lonely.  

All in all, it was a good day!  We are heading home now and hoping for the same non-existent traffic we had on the way to Philly!

Tuesday, September 4, 2018

First Day of School!

Happy First Day of School!

Caleb is starting middle school today, and has mixed feelings about it!  While he is pretty certain he is going to get shoved in a locker, I have assured him that he will be just fine!  He is such a nice kid and I encouraged him to just keep being kind to everyone and to not get sucked in by others who like to make fun of people.  I seriously can't believe that he is old enough to be in middle school!  The cliche is true:  time flies!

Abby was pretty sad about her brother not being at the same school as her, and some tears were shed after he left this morning.  I told her she must have a really great big brother if she's that sad!

Chloe loves getting in on the pictures!

After Caleb left, I set to work on Abby's hair.  She requested curls this morning.  I told her that this may just be a special occasions hair style!  :)

This moment is not lost on me. This time last year, Abby and I said goodbye to Caleb and I held her in the middle of our road as she sobbed over not being able to go to school.  God has performed so many miracles in my girl!!  She is doing so well and we are just so thankful. 

Guys, her lung functioning shouldn't have improved like this.  It was at 15% at this time last year and we were just hoping to keep it from going any lower.  Her lung functioning has improved to 30% and is matched by increasing lung volumes on a CT scan.  Her lungs are healing by themselves.  This is HUGE and shouldn't be happening!  Her doctors can't explain it.  The only explanation is that God is healing and growing her tiny lungs.  Abby is a testament to the faithfulness of God, and we are so thankful.

I hope everyone has a wonderful first day of school!

Monday, August 27, 2018

Goodbye, Summer!

We have learned since having Abby to make the most of every day.  When she is doing well, we play hard.  Last summer was pretty low-key because she was so sick and unable to leave the house.  But this year...THIS year, we made up for that!  Here are some highlights of our summer, in no particular order.

*  Flying across the country to Alaska, going on a cruise for the first time, gazing at gorgeous mountains, petting sled dog puppies, going whale watching, visiting and touching a glacier, dipping our toes in a (freezing!) glacial lake, seeing an orca from our balcony, and spotting a bear

*  Lots of cousin play time and sleepovers at each others' houses

*  Celebrating Matt's 40th birthday in NYC with dear friends, seeing Sponge Bob and Phantom of the Opera, visiting the 9/11 Memorial, taking Uber for the first time, eating some delicious food, and getting to experience "real" NYC in all of its glory

*  Working with a great group of teachers to create 148 SIOP lessons to be implemented in the first quarter curriculum

*  Abby becoming independent by being able to change her clothes by herself, doing her own breathing treatments, and bathing herself

*  Celebrating Chloe's 8th birthday and her improved health

*  Swimming at our generous friend's house and playing with all of her awesome toys

*  Participating in Music and Arts Camp at our church and performing in the Friday Night Show, doing bucket band, hand puppets, singing, and dancing

*  Having a sleepover with our sweet friend Amy, taking her to National Night Out, Amy asking to be handcuffed and put in the police car, tie-dying shirts, playing games for prizes, and winning Beanie Babies

*  Playing outside a lot on bikes, scooters, and the swing set

*  Caleb going to Six Flags for his first official youth group event

*  Playing WiiU:  especially Legends of Zelda and Minecraft

*  Watching Ravens training camp and going to a Ravens preseason game with RMH

*  Touring the new, beautiful Ronald McDonald House of Baltimore, set to open in February 2019!

*  Abby discovering a love for reading Captain Underpants books

*  Playing Yahtzee with the same set I played with my grandmother when I was a kid

*  Volunteering at our Baltimore home and meeting some amazing families

*  Battles with various weapons of mass destruction

*  Going to a swim party with Therapeutic Recreation

*  Cuddling with Chloe every morning

*  Participating in an Inclusion Camp with TR and playing fun games and making lots and lots of crafts

*  Picking out special mementos from my grandmother's house as we clean it out

*  Learning how to play chess

*  Painting mugs at The Pottery Patch

*  Celebrating friends' birthdays

*  Cheering on the red and yellow knight at Medieval Times

Of course, there were a few sad moments as well.  My grandmother's health has declined significantly since her mini-stroke in March, and she was hospitalized again this summer for similar symptoms caused by a UTI. She now lives with my parents and is unable to be left alone.  We have begun the tedious process of cleaning out the home that she has lived in for over 60 years (and by herself for the last 18), in preparation for selling it because she can no longer live on her own.  I have many, many memories there from my childhood and cleaning out drawers and cabinets has been bittersweet. 

 Matt's grandmother was very ill in the hospital for several days, but is doing better now.  Matt was able to visit her in the hospital and at home. 

Our beloved Dr. Campbell passed away suddenly and Matt and I drove to Philadephia for the viewing.  While it was a terrible reason for a reunion, it was therapeutic to be with so many VEPTR families and hospital staff.  We will be beginning a new journey with a surgeon Dr. Campbell mentored and molded, so we are optimistic that things will go well. 

We are thankful for the wonderful memories we made this summer and have no regrets as we say goodbye to Summer 2018!

Thursday, August 9, 2018

An Angel for Our Angels, Volume 8

"Because of Dr. Campbell, Owen is alive and thriving and able to experience so much in life! Thank you Dr. C for giving our Owen a chance! We will miss you greatly! You have truly touched so many lives!"
-Owen Theriot 

"It has taken me all day to put my thoughts onto paper. In 2002, Sarah’s medical file was taken to San Antonio to be looked at by Dr. Campbell. We were then sent to Pittsburgh for Sarah to be evaluated by Dr. Moreland. Sarah was accepted into the VEPTR program and our journey started. 

My daughter was not supposed to live past 2. She will be 18 in September. How do you put into words how grateful you are to the man that invented a device and procedures that saved your daughter's life? It is quite impossible to tell him just how much he meant to our family. The kindness, compassion, and the love he showed every time we saw him was outstanding! To think that he is gone just makes my heart so sad. He gave my family hope and a quality of life she never would of had. 

May God bless him and his family in their time of need. Praying for peace and comfort for his family. RIP Dr. Robert Campbell and thank you for all you have done for my daughter."
-Kimberly Amodei

"This is the story of my daughter Brianna Jones. She was born with a rare genetic disorder called Escobar syndrome. This syndrome mostly consist of muscular skeletal deformities, including deformities of the spine. Brianna was born with four of her thoracic vertebrae fused at birth, causing severe curvature of her spine and compression of her lungs due to the ribs not being able to expand on the affected side. When she was born, we were in the hospital for six months at Texas children’s and she had a 35° curve to her spine... by the time she was two years old her spine was 98°. 

The orthopedic doctor in Houston told me she would never walk and referred us to Dr. Campbell. Brianna also suffered from a diaphragmatic hernia at birth and has been ventilator dependent since birth. We came for our three day evaluation in August or September 2001 when she was just two years old as part of the FDA case study.  We were number 137. Dr. Campbell told me that he would take her downstairs and take her off her ventilator and if she had any breathing effort on her own he could help her. The results were that she did have effort on her own and he said he could help her. 

So it was under the care of Dr. Campbell and Dr. Smith that my daughter underwent her first titanium rib implant surgery... she continued surgeries every six months from the age of two to the age of 14 with only one wound infection and one device that was removed. She is now 19 years old almost and although still vent dependent her settings have been dramatically changed to the point that she can come off her ventilator for a couple hours twice a day. She still has two devices but her spine had finished growing.

Before the rib implants, she was getting chronic pneumonia from compression of the lungs by the rib cage. I truly believe in my heart that my daughter would not be where she is today and may not even be living had it not been for the dedication, love, and intelligence of Dr. Campbell.  

He wasn’t just a doctor.  He cared. He cared about every single child that he helped. I will forever be grateful to him and that he allow the Lord to work through his hands to save so many children’s lives. He will be greatly missed, but not forgotten."

-April Robertson

Wednesday, August 8, 2018

Campbell's Kids

If there was any doubt about the love and compassion Dr. Campbell had for his patients, please read what "Campbell's Kids" had to say about their surgeon.

"I can fix a broken bone, but I can't fix a broken soul. Let him do what he wants."
-Xavier, age 6

"Dear Dr. Campbell, I liked when you took care of me when you came in my room. I liked you were my surgeon for years and years. I liked you were my doctor until you went to heaven to do surgery."
-Roman, age 7

"Dear Dr. Campbell, I can't believe I will never see you again! I am very sad! I miss you so much! You are a great dr.! Thank you for always "having my back" and taking such good care of me! You will always be in my heart forever!
-Luca, age 7

"I was very sad that Dr. Campbell has passed away. He was the best doctor in the universe. Best memory of him is all of them and the fact that he saved my life and millions of other kids and let us be who we are today is just amazing! When I heard he passed away it was like a nightmare. My heart just dropped. Every da yI think about it and I hope i twas just a dream, but I know it's not. I loved him."
-Josie, age 9

"Dr. Campbell was nice because he took care of kid and he loves kids. He was good with patients. Our familiy loves him so much because he fixed my ribs. I'm going to miss when he would take care of me when I'm asleep during surgery. I miss him already."
-Abby, age 7

"Doctor Campbell is so so special. He saved MILLIONS of children’s lives! Even if he didn’t do all the surgeries, he was the person who invented VEPTRs, and trained all the docs all around the world, so that it is closer and easier for kids that live far away from CHOP to get surgery . He might not have done everyone’s surgeries, but he did do A LOT! He did mine! Without Doctor Campbell, I probably wouldn’t be alive, or I would be in pain or suffering right now.

Also…He wasn’t just a great surgeon. He was really kind. He took time to show me pictures of his family. I wasn’t really afraid of the surgery itself. I wasn’t worried that Dr. Campbell would do a bad job. I was nervous to get the mask, and scared to go into the OR. Like I said I wasn’t worried about the surgery itself, or that Dr. Campbell would do a terrible job. He was excellent at doing the surgery and keeping me safe in the OR. He knew what should be done for me to grow and be healthy. He knew when to stop doing something and keep doing something. 

You're Amazing Dr. Campbell, We’ll miss you A LOT!!
With lots of love.
Lilly, age 12

Tuesday, August 7, 2018

An Angel for Our Angels, Volume 7

“To say Dr. Campbell was a hero is an understatement. We should all be as lucky to leave behind a legacy such as his. The number of lives he saved as both a surgeon and an inventor (with Dr. Smith) of the VEPTR device truly made him an angel among us. Even though he was world renowned, he was the most humble man who just wanted to help kids. 

I will forever be grateful for him. I’ve told him so many times that saying thank you will never ever be enough. He gave me the most amazing gift ever:  he gave hope for Madden when other doctors had given up. He saved Madden’s life. He always managed to see the potential in all of his veptr kids, never focusing on the struggles or medical equipment they may have. He continued to remind me that Madden’s trach/vent are just a bridge to a long healthy life. He always managed to relate to these kids, like somehow he knew deep inside what they were feeling. 

One of his best sayings was always, “I can fix a broken rod, I can’t fix a broken spirit”. With that motto that is how we figured out our life with all of Madden’s “accessories” and if something breaks, falls out or someone trips over his stuff, as long as he’s playing and living life we will fix it. 

We will forever miss this amazing man. I can’t even begin to describe the heartache in losing him. I just hope he knew how loved he was and how thankful I am for him saving Madden. 
-Mandy Sheridan

"We had found out about Maciah in utero. So now what?

Fast forward a few months when the Radiologist couldn't read the ultrasound. Time to find a new Dr. And so began our search because at 5 months we still didn't know what "it" was. So we got connected with the CS Facebook page then onto the VEPTR page. And as a newbie we soon realized that CHOP & Dr. Campbell kept being talked about. And it was said he had at least a 6 month waiting list. So that afternoon I got on the CHOP website & filled out our info not expecting a quick response. Well we heard the very next day!

Within the week, we met Dr. Campbell. Her anomalies are T2-L2. When we met him, she was in the 40's.  When she finally got her VEPTR at 13 months, she was pushing 90 degrees (in 3 short months she had a 50 degree increase).  With a chest wall half the size as it should be (hers was a 7 and it should be a 14) so all the room counts. For the 1st time she could sit up on her own!

We didn't get many pre-op pics with Dr Campbell because the giggle juice was usually already working. His quiet authority gave us peace that she would be fine. Again we fast forward to expansion #13, when we were reminded of how great this device truely works. He came into the  surgical waiting room in quiet authority and told us that her CS had progressed significantly again.  She has also outgrown her hooks & screws, so this one will be "a big one" for the "little peanut."

When we heard of his passing, we were heartbroken & shocked  just as everyone else is. Maciah fell in love with Mrs Campbell & Abby @ the reunions when they took time to talk to us all. We are forever thankful that Dr. Campbell gave us many firsts with Maciah that without him would never have happened! And so we ask, "So Now What"?
-Laura Moore

"When Fionah was a little over 2, we were referred to a Scoliosis specialist who didn’t even give us the time of day. Fionah was having pain, low endurance, and decreased appetite.  The doctor didn’t even view her medical records before we came. He told us he wouldn’t operate on a child her age, and we were to get a CT scan and come back in 6 months. I called the hospital and requested another surgeon see her. He immediately said Fionah needs to see Bob Campbell because she was a VEPTR candidate.

We met with Dr. Campbell and he told us she absolutely needed VEPTR rods and within two months she was in surgery. I was a little nervous about the day he had given us: 9/11/2012. I asked him if it was a good day for surgery. He completely changed my perspective and told me “Something good needs to happen on that day.” I hadn’t thought of a major surgery as being something good because at that moment I was completely overwhelmed but he changed that. He reminded me that it was a start to a long life. He always told me that this journey “Is a marathon and not a race.”

Dr. C. encouraged me to allow Fionah to be a typical kid because we were doing this to give her a childhood. Dr.Campbell paved the way for how we walked this journey with courage and a positive outlook. He gave us hope for Fionah’s future and for that I am eternally grateful. Fionah was his Wonder Woman. Even though we eventually transferred care, Dr. Campbell was always and will always be our hero.
-Shawna Ogle

Monday, August 6, 2018

An Angel for Our Angels, Volume 6

“There are no words to express how deeply shocked and saddened we all are after learning of the passing of our beloved, Dr. Campbell.  This is an enormous loss for his family and for all of us as well.  Our hearts have been broken in the most painful way.

We cannot feel life's losses without first feeling the blessings of its fullness. Dr. Campbell has blessed thousands of lives, and we will all be eternally grateful to him.  Each life is touched by others.  With Dr. Campbell, the touch was compassionate and loving, and will linger forever.  Our family has umpteen blessings to be thankful for, and Dr. Campbell tops that list.  He may have claimed to be "nothing special", but to us, and thousands of grateful others, he was nothing less than an angel on earth - our hero and savior and lightyears beyond any kind of "fantastic" word we can think of.    

We were introduced to Dr. Campbell when our son, Luca, was 11 months old.  The moment he walked into the room, we knew our son was going to be in great hands!  You could just feel his compassion and see the love he has for all of his patients!  Dr. Campbell inserted our son's VEPTR at 17 months old, and he has performed every single one of Luca's surgeries since then.  Luca is now 7 yrs. old.  We always get anxious and very nervous leading up to surgery day, but that anxiety would disappear the minute Dr. Campbell walked in.  Even as we sat, each and every time, waiting in surgery reception......the very minute we would see Dr. Campbell walk through those doors, smile and walk towards us, a sense of calmness would come over us and we knew everything was going to be ok.  He would sit down, discuss Luca's surgery, and then we would just talk for a while.  We loved those talks and he loved showing us pictures of his beautiful family.  To know we will never never see him walk through those surgery doors again, never see his smile, hear his jokes, sit and talk.....leaves a void in our hearts that can never be filled.   Dr. Campbell is a God-given gift to our lives.  He gave us hope, he gave our precious little boy a future!  

May Dr. Campbell's incredible lifelong devotion to children's healthcare, his extraordinary achievements and contributions, and his commitment to saving children's lives be a reminder to us all that one person CAN make a difference.  Dr. Campbell definitely qualifies for Sainthood.

May his beautiful, selfless and humble soul rest in peace, and may God watch over and protect his beautiful family.  We hold Dr. Campbell's family safe in our hearts at this time of incredible sadness.  

Dr. Campbell - we are forever grateful!  We miss you dearly and you will always hold a very special place in our hearts!”

- The Argento Family

“Our son Roman was born with an extremely rare tumor called a mesenchymal Hamatomar of the left chest wall. This tumor was so large at birth that it destroyed five ribs and pushed his spine over, resulting in servere scoliosis.  We prepared for Roman’s birth knowing this, but no one knew what to do. 

When Roman was born, they removed the tumor along with five ribs.  We were at a children’s hospital in New York City. We were with the best surgeons. But they had no idea what to do with this 2 week old child. Roman was on cpap,bipap, and then nasal cannula. We were told when he was a month old to go to a rehab facility to transition home. We were new scared parents and did what they told us. While at the rehab my son got pneumonia and his lungs collapsed. We were losing him. We transferred him back to New York only to be sedated and put on a vent. His little lungs just could not work without help and a chest wall. Roman was trached and needed a G-tube. At this point I had not heard my son cry or coo in 2 months. We had no answers or anyone to help us. He needed intervention. 

They asked the head ortho at the hospital and he had no answers.Every night myself and my husband researched his tumor for answers or solutions. All the children we found online had died at birth. The doctors told us they heard about this tumor but had never seen one. We were desperate. 

While on the computer my husband stumbled across Dr. Campbell in Texas. WE WERE GOING TO TEXAS! The next day we were talking to his nurse who was a traveling nurse that happened to be from texas. We asked her if she knew about the VEPTRS And Dr. Campbell. God must have been with us. She said yes I used to work with the VEPTR kids in Texas. I know Dr. Campbell. She says wait a minute. She makes a phone call and comes back with a paper and address to CHOP.  Dr. Campbell is now working there with the VEPTR kids. Her friend who also was a traveling nurse was a nurse practicer in the (pcu) progressive care unit at CHOP. I sent all of Roman’s records to CHOP two days later. I called every Thursday for a month until they said he received his records. Meanwhile Roman was being sent home vent dependent and still no answers or hope. Dr. Campbell is at this point our only hope.

The day we were leaving to go home I requested a meeting with a doctor from ortho to make sure nothing can be done. I asked why he couldn’t do the VEPTRS because this hospital does them.  The doctor said he would not touch my son until at least 13 months. He’s too small. I told him I reached out to Dr. Campbell.  He laughed and said good luck he’s too busy. (the thing is, I found out that Dr. Campbell taught this doctor to do veptrs)! And you would think he would have referred us to Dr. Campbell to save our son’s life! No.

The first night home since birth, Roman goes into cardiac and respiratory distress and my husband and myself had to do cpr.  We were losing him.  He had a plug in his trach. We did not know until we we were transferred from our home hospital back to New York City.  While this was happening, our phones were not  charged. While we were driving home to get the vent and stuff for yet another hospital stay I plugged in my phone. I had at least six missed calls and a voice mail. (I still have the voice mail) When i listened to the voice mail it was “hello Mrs. Ducalo this is Dr. Campbell over here at chop. I can help your son. Please call me so i can have him transferred to our hospital asap.”  

I called him back crying and he was so sweet.  I don’t remember too much of the conversation because I was crying so much and I was in shock. About 4 days later we were transferred to chop. Dr. Campbell along with  Anna came in the room with a big smile on his faceand  says “oh good he’s a big kid” meaning my son was chunky. He continued to explain the kids need fat and muscle to cover the devices. He was delighted.  He had three other children waiting to have surgery but were too skinny.  He also explained how important it was to get this done sooner rather than later because children’s lungs can repair up till the age of 3. He continued to tell us Roman did not have 13 months probably no more than a year to live. He probably wouldn’t be able to walk either. 

Roman went through all his tests. Dr. Campbell came in and said, “Roman’s ready for surgery, are you?!  No turning back now you’re in it for the long haul!”

On May 18, 2011 Roman had gotten his VEPTRS, two spine rods and three rib to rib. He was 5 months old. He always said Roman was the youngest he had done and placed so many veptrs. Immediately after surgery, his breathing was better and he was straighter. Every surgery, Dr. Campbell would ask why he was still on the vent! I would say, that's Mommy's fault. I want to be safe and I was so afraid to go fast weaning him off the vent. Dr. Campbell was so good!  He understood, but said a little faster. When Roman was 9 months old, he came home, at two years old he took his first steps and when he was three his trach and vent were gone.

I always say God sent us our son, but he also put people in place to get us to Dr. Campbell.  I feel the same way now. Dr.Campbell probably took care of things before he passed without anyone knowing. I could not ever thank DR.campbell or his family enough for sharing him with us. Without that, my son would not be with us today. I do not know the future but now my son has one, thanks to Dr. Campbell. We are forever grateful. It will be hard bringing Roman for surgery now.  The halls won't feel the same.  Nothing will feel the same. But I know I can close my eyes and see his face and hear his voice reassuring us that it will be ok. He will be watching from above❤️"

With love always,
The Ducalo family!