Life as a Leach

This is my new shirt and it has never been more true.  The last few days have been filled with phone calls, paper work, scanning documents, and faxes.  We have prayed about our decision, talked to Abby's pulmonologist, weighed the options, and cried.  There's no great answer, and our pulmonologist recognized that.  She was quick to acknowledge that we have had to make hard decisions for Abby before and we have always made the right one.  She did echo a lot of our concerns and validated our feelings on the options, which helped us to make a decision. 1.  We are going to meet with Dr. Lenke at Columbia University Hospital in New York City.  There was a 14 page application (yes, I said application ) and I had to request all of Abby's medical history related to her spine, as well as her most recent CTs, MRIs, and Xrays be sent to them.  Once all of that is received and reviewed by Dr. Lenke's team, they will decide whether or not they will accept...

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!...

"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 nev...

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 fac...

“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...

“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...

"Although we have never met Dr. Campbell, words can’t describe our gratitude. Two years ago, our surgeon told us that VEPTRs were our daughter’s only hope. Now, two years later, our daughter’s 3 VEPTRs have allowed her to grow and thrive beyond our expectations. We are forever grateful for this wonderful doctor." -Cheryl Rawlings “Mourning the loss of this wonderful man, doctor, surgeon and human. Dr. Campbell was the co-creator of the VEPTR implant that Erin received when she was 3. He helped thousands of children to be able to breathe, get straighter, live healthier, and longer lives. He was practicing in Texas when Erin was eligible for implantation. Due to a scheduled presentation at Cincinnati Children's Hospital Medical Center (CCHMC), Erin's surgeon, Dr. Alvin Crawford, was able to have Dr. Campbell in the operating room with him. Erin was the first "Rib Kid" at CCHMC, and was blessed to have both of these surgeons doing her surgery. We will...

There are so many stories.  I won't stop until all of them are shared.  The words of the families who owe Dr. Campbell so much and simply beautiful. --------------------------------------- "My daughter Linsey was the 18th child to have the Titanium Ribs. She is now 25 years old thanks to Dr Campbell and Dr Smith.   May you both Rest In Peace!   You made such a difference in so many lives! Thank you dear friend, you shall be missed..." -Sue Ponfick "Dr C. wasn't my son's doctor, but he saved his life every bit as much as Dr Oetgen who did his surgery . He gave me a little boy who is alive and no longer trach and vent dependent!!" -Michelle Beckman "I'm completely heart broken  💔  This man gave us hope with Kimmy when nobody else did.  He saved her life and mine because I don't know where I would be without Kimmy. I just feel my tears coming down randomly. I'm so scared with Kimmy's future veptrs.... I pray for his wife and ...

By now, you should have a pretty good idea of Dr. Campbell's character.  The stories tell of his love and dedication to his patients, and there are many more stories to tell.   --------------------------------------------------------------------------------------------------------------- "I just feel so sad. When I told Owen that Dr. C could not operate anymore, he was so upset. That’s his friend and he is his tiger (as I am sure many of your kids have been called). I also am struggling to find the right words to describe what Dr. C did for our family. I know you all know since we are on similar paths. He saved Owen’s life. He gave him a quality of life he would not have had otherwise. He fixed it so Owen can enjoy the most simplest of things in life, but also experience the big things. He gave him his lungs. He saw the potential in Owen’s little severely curved body. The world has a hole in it now. And no one else can really fill it. RIP Dr. C." -Owen, Nick, and Sar...

So many stories.  So much gratitude.  Thank you will never be enough, but we share our stories so that others will know just how much Dr. Campbell means to us.  We are #veptrstrong because of him. -------------------------------------------------------------------------------------------------------------------- "Our first visit with Dr Campbell we knew he was the one to care for our Audra. He was so kind and gentle and didn't even need x-rays to say yeah I bet she is in pain and we are gonna fix that. The love he showed my family will never be forgotten." -Tonya Ankeney "I think we all owe this man more than we can ever repay. I know he saved Joey’s life. At 3 years old the other doctors told us there wasn’t much we could do for him but wait and see, which would have meant death. Our family is so grateful for him and those magic hands and big brain. I just hope he knew all the families he touched."   -Ashley Moore "We will always be grateful for ...

Being a writer, I tend to feel much more comfortable sharing me thoughts on paper (computer?!) than out loud.  My words get all jumbled up and I cry at the drop of a hat, so sharing heartfelt thoughts with others is best done in writing for me. I have already shared what Dr. Campbell means to our family, but during our time of grieving as a VEPTR community, many of the families wanted to share how much Dr. Campbell means to them as well.  I asked if anyone wanted to contribute to a blog post and held my breath for at least 2 people to reply.  (Cue insecurity!)  It is a testament to Dr. Campbell's legacy that over 30 people would like to share how this wonderful man has affected them. I'll be doing a series called, "An Angel for Our Angels" which was suggested by another VEPTR mom because Dr. Campbell is our angel for all of our kids.  He truly cared about each and every one and sacrificed so much to operate on those complex cases that were deemed hopeless....

Hero (noun): a person noted for courageous acts or nobility of character; a person who, in the opinion of others, has special achievements, abilities, or personal qualities and is regarded as a role model or ideal. Dr. Campbell was a true hero to our family and to so many others. He created the VEPTR, the device that has given us 7 wonderful years with Abby. He has been our surgeon through thick and thin and has never given up on Abby, even when things seemed rather hopele ss. I'll never forget the first time we met him. It will be 5 years ago tomorrow that we had decided to go to CHOP to get his opinion on Abby's spine and ribs. We had been told by another orthopedic surgeon to just wait until things started to get bad, and that didn't sit well with me. From the moment Dr. Campbell walked in the room, I knew we were in the presence of a brilliant man. Yet, he was always so humble. I've learned from experience that there are very few humble, br...

Looooove good news days!!!!   We came to Philly last night for appointments today and tomorrow.  We got into RMH, so Abby enjoyed playing with another little girl and racing remote control cars in the playroom.   Today, Abby had a CT scan, X-rays, orthopedics, and plastic surgery.  Obviously, our biggest concern was Abby’s lung volumes and the future of her chest wall reconstruction.   Abby’s lung volume on the right side (the side that has no veptr) has improved significantly!!  Dr. Campbell is really happy and we can schedule an expansion for the left side for August!  Her plastic surgeon was also pleased with her back healing!  Woo hoo!!  We are absolutely thrilled and thankful for the healing God has been doing in her little body!   To celebrate after a busy morning of appointments, we visited the Please Touch Museum.  The ceiling of the museum Tons of toys make up this torch!! Riding the carousel The baby needed an MRI :) We fo...

Nothing has changed, and yet everything has changed.  Abby is still healthy and able to do a full day of school at home with frequent breaks.  We are still washing are hands constantly, have hand sanitizer mounted on the wall at every entrance and at the door of her bedroom, and change our clothes the second we come home when we have been in close contact with people.  She is still skyping with her class most every day and able to interact some with the other students.  I am still dealing with the day to day insurance issues, medical phone calls, and specialists' appointments.  And yet, it seemed like everything changed in that moment after Dr. C. said he felt the risk of putting the rod back in was too great.  I cried most of the way home and felt like I'd been sucker punched.  Caleb, who understands the magnitude of this decision, shed his share of tears as well.  Dr. C. didn't directly say that he would never do it, but it was clear that un...