Grieving, but Grateful

Yesterday, we received some very, very sad news.  Now that we have shared this news with Lilly, I am ready to share it with you, our friends and family.  

Our beloved VEPTR surgeon,  Dr. Robert Campbell, passed away on Sunday, July 29th.We have known Dr. Campbell since late in 2009, when we had been referred to Children's Hospital of Philadelphia (CHOP) by our pediatric orthopaedist in Pensacola Florida.  He had referred us to Dr. Dormans at CHOP, who, upon entering our exam room and taking one look at Lilly, exclaimed "You don't need me. You need my colleague, Dr. Campbell!" He went down the hall and brought Dr. Campbell back into the room.  We hadn't heard of Dr. Campbell at that point, but we were soon to learn that Lilly wold now be a patient of the inventor of the VEPTR device itself, and the pioneering surgeon for the VEPTR surgeries that Lilly would soon undergo to open and maintain her thoracic cavity and preserve her heart and lungs' vital functions (click here to read more about his development of the device).  

How grateful we are that the Lord saw fit to allow us to land at CHOP all the way from Florida.  We have Dr. Campbell to thank for Lilly's longevity--now 12!--and her amazing quality of life (even able to play the flute beautifully, which takes a lot of wind!). Left untreated, Lilly could have expected a shortened lifespan and very poor quality of life.  

From the moment we met him, we felt completely at ease and comfortable with Dr. C's demeanor, his expertise and wisdom, his knowledge, and his compassion.  Lilly--as many of you know--can be slow to warm up to people, but he had soon earned her trust. He could see her spunk and tenacity from the get go.

As hard as the VEPTR journey has been--Lilly now having undergone nearly 20 total surgeries with several post-operative infections and other complications along the way, each requiring logistical planning, time away from home, school, work, etc.--because of the level of trust we have had in Dr. Campbell, our anxieties never really centered on the surgery itself.  In fact, my OR waiting room times have been some of the most relaxed times I've had at CHOP, knowing he was the surgeon taking care of her (it's much more intense for me caring for her in her room post op!)  

Not only was Dr. Campbell wonderful with Lilly--taking time each visit to show her pictures of his own children and talking about their lives--but, being a former military physician, he also had a strong connection with Tom and always asked how "the Colonel" was doing and what he was up to in his career.  He even took the time to talk to Tom on the phone or on speaker when Tom couldn't be there to consult with him post op.  

Our hearts are heavy as we grieve this beloved physician who had really become more like a treasured family member to us--and to many more families all over the country and the world, who are all grieving with us now.  We grieve for his family, we grieve for his patients and their families, we grieve for his co-workers and friends. And we grieve for the loss his passing is to the medical community worldwide.

So many tributes to Dr. Campbell are now streaming into our "VEPTR Kids" Facebook page, every one with stories of the impact he has had. If you'd like to read many other stories, please check out my friend Julie's blog, where she is compiling in several installations all of the tributes.  To learn more about his medical expertise and experience, check out his bio on CHOP's webpage. He has traveled the world training and teaching doctors for many years, in fact, and VEPTR surgeons are now available in many places around the globe. While the grief over his death is widespread, even wider is the ripple effect of this one man's vision and life's work.  

When we told Lilly the news at bedtime last night, she cried with me, and--after asking as many questions as she needed to--we prayed together for Dr. Campbell's family, for his friends, his colleagues, and all his patients and their families.  Lilly has been sweetly praying for Dr. Anari, Dr. Campbell's graduated fellow, whom we've been told will be doing Lilly's future surgeries, asking God to help him not to be nervous about stepping into such big shoes.  

Finally, we do not grieve without hope.  We do trust that our sovereign God took him home at just the right time, and we trust that Dr. Campbell carefully took the time to hand-pick his replacement attending surgeons and train them well.  We now await word on Lilly's rescheduled expansion surgery date, originally scheduled for today. Please join us in praying for Dr. Anari and all the staff at CHOP who are also reeling over this sad loss. 

Please enjoy our photo gallery of many (though not all) of our visits with this dear man.  I love seeing the change and growth in Lilly through these photos, though I cringe seeing the slow decline of Dr. Campbell's health through the years. 

Rest in Peace, Dr. Campbell.  We love you.

February 2011, Lilly's Initial Implant Surgery, CHOP

December 2011, washout and hardware removal surgery after an infection.

April 2012, Getting ready to reimplant hardware after infection necessitated removal.  Dr. Campbell always took time to show Lilly pictures of his kids so she could see how they were growing, just like her.  This helped her to warm up to him and see him as just a dad who was a doctor, like her own dad. 

November 2012.  

Lilly gave Dr. C a copy of Nana's NYT Bestselling novel, Agenda 21.  He was pleased with the gift!

 Lilly also brought the class stuffed animal, whom Dr. C welcomed warmly. 

 Ready for another expansion.

May 2013: VEPTR Family reunion and expansion surgery number 4

 October 2013, expansion surgery #5

March 2014, Expansion surgery #6

September 2014, Expansion Surgery #7

July 2015, expansion surgery #9

January 2016, Expansion surgery #10

 Lilly took this one as Dr. C was talking to me!

July 2016, expansion surgery #11, showing which rods he'd expand.

Expansion #11

One of the few times younger sister, Bella, was with us for pre op.

May 2017, wound debridement, muscle flap procedure.

January 2018--our last surgery with Dr. C.  Lilly's 14th expansion surgery (19th total surgery). 

Finally, here are some of Dr. C's autographs in Lilly's "hospital caregivers' guest book" that she has everyone at CHOP each time she's there for care.  He always drew and said something to make her smile: