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A Slightly Twisted Fairly Tale 
A personal journey
~Tara Campbell 
 

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Kendal 4 days old (2003)-Open Heart Surgery (CHD,Coarctation of the Aorta, PDA, 5 VSD’s and a bicuspid Aortic valve). Diagnosed with VACTRAL syndrome. Kendal and Neurosurgeon Dr. Michael Scott (2015), neurosurgery for theathered Spinal Cord. Kendal and Neurosurgeon Dr. Vestal. Dr. Gerald Marx (Cardiologist), & Dr. Frank Pigula (Caridac surgery)

Kendal’s Birth 10/10/03                                         
Written 2004 By Tara Campbell

We found out the news at thirty weeks.  I sat there on the ultrasound table at Brigham and Women’s hospital in Boston.  “I am sorry Mrs. Powe, but your baby has one kidney and a hole in her heart,” the radiologist said.  I wanted to curl up in a ball and die.  “How can this be happening to us again,” I said to my husband as tears poured down my face.  This was our third child.  Our seven-year-old son had sustained a brain-related birth injury from the vacuum extractor; he now suffers from cerebral palsy and epilepsy.  Our two-year-old daughter was born via emergency section.  I was desperate to achieve one natural, peaceful birth experience I had been planning a VBAC for the past 30 weeks.  I was ready!  You see I am a birth doula; I help women achieve a gentle and calm birth experience.  Very rarely have I ended up in the OR with a client.  I knew what this news meant for me; the OR was imminent.  A repeat caesarean section was required.

We were sent to Children’s Hospital Boston for a fetal echocardiogram.  Dr. Gerald Marx would be her cardiologist.  He explained to us that he had found more problems.  He told us she had a possible coarctation of the aorta, and there are two VSDs in her heart.  He could not tell us anything more until she was examined at birth.  He did not suspect surgery would be needed immediately after birth.  He told us there might be an underlining genetic disorder, like Downs or Turners syndrome.  I opted not to do the amniocentesis at 30 weeks . It did not matter to me; I would love my child no matter what.  Kendal Grace Powe was born via cesarean section on October 10, 2003, at 11:45 am.  She weighed 4lbs 10oz and was 16 ½ inches long.  Her APGAR scores were 9 and 9.  She came out screaming.  She was beautiful and so tiny.  The OR was packed.  The cardiac team from Children’s Hospital was there; my mom and husband were with me.  Father Winchester was with us; he prayed with us during the birth and he baptized Kendal in the OR.  My dear friend Deb was with me.  You see, not only was I a patient at Brigham and Women’s Hospital; I was an employee in Labor and Delivery.  I knew everyone around me, the support was tremendous and I cannot thank my boss Beth and all my friends and co-workers enough.  They took Kendal right away to the ICU, my husband left me in the OR to go with her.  I started crying, and I could not stop.

I saw Kendal that afternoon; she had been transferred to the Cardiac ICU.  Dr. Marx came in and told us her heart condition was worse than what he initially thought.  She actually had 5 VSDs, a severe coarctation, a large PDA that would not close, a bicuspid aortic valve, mitral valve prolapse, and a horseshoe kidney that was functioning.  I thought I was going to be sick.  My poor mother literally fainted and I could see the devastation on my husband’s face.  “Open heart surgery will be done Tuesday, October 14th at 1:00 p.m.,” they told us.  Her condition continued to decline from there, suffering from congestive heart failure.  I could not leave her.  Thank God, there was an indoor tunnel connecting the two hospitals.  My husband wheeled me over constantly; I only returned to the postpartum floor for my meals and pain medication.  I knew I was suffering physically and pushing myself beyond my limits, I was not allowing myself to recover.  There was a good chance Kendal would not survive, and I needed to be with her.  Even though I could not hold her, I could look at her.  I remember staring at her thinking “if she doesn’t make it, will I remember what she looks like in real life.”  I desperately wanted to nurse her but they would not allow her any food before surgery.  I was determined to keep pumping to keep up the supply for her.  The doctors told us she may need to be placed on a ventilator.  I wanted my kids and family to meet her before this, so they came to visit the next day.  After the visit, I remember my husband asking me if I wanted some time alone with Kendal while he walked everyone out.  I said yes and the nurse allowed me to kangaroo her.  I smelled my daughter as I sang to her and rocked her.  The nurse then stepped away for a brief moment and I can still remember the sounds.  It was awful, she let out a gasp, and the alarms went off.  She was having an apnea spell.  Her heart was failing and there was nothing I could do.  They grabbed her from me.  I was in complete panic.

We met Dr. Frank Pigula that afternoon; he would be Kendal’s cardiac surgeon.  He was very honest with us, explaining all the risks of the surgery.  He said it would be a six-hour operation. That the biggest mortality risk to her was her weight and coming off the bypass machine.  He treated Kendal with the respect she deserved.  He told us he would do his very best.  I begged him to bring her back to me.  He is one of the most compassionate doctors I have ever met.  She was never put on the ventilator before surgery; she fought it all the way.  My strong little girl, she shocked the entire team.  An hour before surgery I lost it, I felt trapped.  I felt cornered like there was no way out.  I think Father Nee saw me breaking down.  He pulled me into a room alone.  I begged him to answer me “where will she go if she dies?”  I kept telling him “I don’t understand any of this!”  “I cannot do this,” I screamed.  I felt insane almost, at that moment I thought my mind would be lost and I would never function again.  He looked at me and said “Tara, none of this is in your control.  God will guide her to where she needs to be, either way, she will be in the right place.”  He told me I could love her even if she is not in my arms, I can love her during her surgery by imagining my love being like a blanket wrapping her up tight.  He told me she could feel my love even though it is not physical.

I kissed her goodbye; I told her I could not live without her and to please come back to me.  They took her at 3:00pm to surgery. I will never forget the compassion the surgical team gave us; they were wonderful.  I handed her to the nurse.  I cried.  We all cried.  My husband collapsed at the elevator.  She was awake when she left us, her big brown eyes peeping over the blanket.  She looked scared.  The doors closed, I did not know if I would see her alive again.  I knew Dr. Pigula was the only man that could save her at that point.  God was with his surgical team that afternoon and guided them all through a successful surgery.  I only pray he can do for other children as he has done for our daughter.

Kendal’s surgery was a success; they repaired three of the 5 holes.  They surgically closed her PDA and they fixed her aorta.  She recovered well.  Getting her to the breast was a challenge with the feeding tube in place, but we did it.  How can we ever give you the credit you truly deserve Dr. Pigula?  You saved our daughter’s life!  She suffered from congestive heart failure for four days before you gave her a new life.  God bless you and your team. You are forever in our thoughts and prayers.

Kendal is home now growing beautifully. We are blessed to have her in our life.  All her genetic testing came back normal.  We are thankful. As a mother of two special needs children now, I truly believe God will only give you what you can handle.  Do not ask why, because you will never get the answer.  As a doula, I have learned that no matter how your birth experience turns out, it is still the birth of your baby.  It is special in every aspect; embrace the moment no matter what the situation.

Thank you to everyone at both hospitals, for the wonderful care and guiding us through a journey no parent should have to experience.  You gave us strength and helped us to see Kendal, even as she laid there with all those tubes.  Thank you for all the prayers from family and friends.  Thank you, Gram, for coming to see her.  Thank you Evian and Shelby for understanding where mom and dad were, we enjoyed your visits at the hospital.

2012 – Update: Kendal continues to grow strong; she is an active girl, quite comical and loves to make us laugh.  So much has changed; she enjoys spending time with her family and friends.  She loves skateboarding, skiing, and softball and is a very active kid.  Kendal is a NY Yankees fan.  It is still very hard for me to read what I had written above; it feels like so long ago.  We spend so much time at Children’s Hospital in Boston that we try to give back by being involved in a variety of events with Children’s Trust.  Evian suffered extensive brain damage; he suffers from cerebral palsy, epilepsy, immune issues, and other neurological conditions.  Shelby is a patient in ophthalmology, and all the kids are seen in dentistry.  The care we have received is outstanding.  I cannot thank them enough.  I want to thank Wendy who has been Kendal’s patient partner for the past five years.  Wendy continues to run the Boston Marathon for Children’s Hospital Boston Miles for Miracles.  Kendal really looks up to her.

2015- Update: We have had a disappointing year.  During a 5K run last summer, Kendal had a cardiac episode that landed her in the Cardiac ICU at Children’s Hospital.  Over the past two years, Kendal had started experiencing some significant neurological symptoms.  In the spring of 2015, Kendal was diagnosed with VACTERL association, which included a tethered spinal cord that had gone undiagnosed for 11 years.  She had neurosurgery under the care of the renowned neurosurgeon Dr. Michael Scott. Kendal continues to get better each day but she will be impacted for the rest of her life by this new diagnosis.

it feels like it will never end.  Four weeks after neurosurgery Kendal spent a week at Boston Children’s with meningitis and Lyme disease.  I can not thank the doctors enough for such amazing treatment.

2024 - Kendal is strong and athletic! She is a Birth Doula and is working alongside me :) Her mom! Talk about full circle. 

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Katheryn and Mom (2016) after her Thoracotomy to remover a 9cm Gainglioneuroblastoma mass for her chest and spine. Katheryn and her surgical team from Boston Childrens Hospital Boston and Dana Farber Cancer Institute.

Katheryn’s journey through a cancer diagnosis and what it has taught me as a mom, doula, and advocate.

https://www.facebook.com/littlemisskatheryn/

Katheryn's Journey 2016

 

How we uncovered the ganglioneuroblastoma…the short version. 

 

Friday Oct 7th 2016 – Two gallons of milk, bread, fruit. I keep repeating the grocery list in my mind as I rush through the store with my teenage daughter Kendal. Three missed calls from the hospital (not work), something’s very wrong. My toes are tingling, I cant breath, I already know in my gut. I stop the cart at the bakery and answer the phone. Katheryn has cancer. It felt like all the blood drained to my toes, I was instantly disoriented, lightheaded, and I knew I was close to passing out, as I navigated my way to the truck. What was probably less than a minute felt like an eternity?

 

Sept 28th 2016 – Katheryn has a Thoracotomy (6 hours) at Children’s Hospital Boston to remove 95% of what was originally thought to be a huge benign “ganglioneuroma” based on the biopsy. She looses a significant amount of blood and is transfused. She spends 5 nights inpatient recovering. Biggest challenge was pain management.

 

Sept 22nd 2016 - Katheryn needed a CT at CHB scan to identify the artery of Adamkiewicz, her tumor sat right near it. This was the first test she was able to do non-sedated. It was still extremely difficult.

 

Sept 15th 2016 – Early morning at CHB Interventional radiology. She will have general anesthesia, and two IV’s are placed (yes she requested the J-tip). I will go in the operating room and watch her as she goes under. I will then leave as they put two needs in her back that will take seven samples of the tumor. She thinks they are taking more “photos”. This will take several hours. Once the biopsy was over I knew it would be pure hell just waiting, and it was. A day and a half later Dana Farber calls, its benign.. Although its rare that second pathology will be different I am informed it’s a possibility. No one thought it would be different. Everyone was wrong.. Everyone. Sept 9th 2016 – Here we are … its real. We are at Dana Farber meeting the oncology team. I see the tumor on the screen from across the room (holy shit its huge). This appointment will forever burnt in my memory. It wasn’t pleasant. For those of you who know me, you can only imagine the tone, and relentless amount of questioning that went on in that room, in fact I later was told that my friend wanted to crawl under the chair. I cannot help myself and will toot my own horn; I do this for a job. I advocate at some of the largest hospital's in Boston for my clients, usually not with Oncology but I know how this goes. I will be honest I am intrigued the more medically complicated my clients are, that’s why I only work with the high risk ones! This is a familiar comfortable setting and I don’t feel intimidated, in fact hospitals feel like home. Not to mention Kendal with her open heart surgery, neurosurgery, Evain’s epilepsy and so on and so on…. Do I claim to have a medical degree? NO. Do I claim to know more than anyone else sitting in this room? NO. When the shit hits the fan do I usually pull it together and ask the right questions in several different ways so I can understand exactly what’s going on? YES. Am I that pain in the ass mother who is relentless? YES! You see some parents want the fluffy bullshit.. Rainbows and butterflies approach, I CANNOT handle that. I don’t want you to rub my back and hand me tissues, instead I want confident straight shooter’s providing evidence based information so that I can make an informed medical decision. One thing I have learned from my job, is when the emotions are high and things are spinning out of control, remain calm and listen, ask the right questions. On ALL medical phone conversations I feel like a stenographer recording each word.. Each sentence, every tiny detail so I can analyze the crap out of it knows I haven’t distorted any of the information my emotions. Sept 6th 2016 – Early morning in radiology at CHB preparing to be sedated for the MRI. Thank god for the J-tip. This is her first medical experience from a procedure standpoint. I was able to hold her in my arms on the table as they put her off to sleep with propofol, her eyes rolled back, we laid her down and I walked away crying. This would take several hours before we would see her awake. I had a bad feeling throughout the scan that something was going to be wrong. In fact I emailed the Dr. from the waiting area asking him to check the results as soon as he could and call me. I just knew in my gut. My phone rings at 5pm, your daughter has a large mass on her spine in the thoracic area she needs to have a biopsy done, she also needs to be seen at Dana Farber by the oncologists. It is most likely benign. I spend the next week sleep deprived, analyzing her MRI report, obsessing over the differential diagnosis and reading every article that every existed on each possibility, in fact it was like a crash course in oncology because everything pointed that way. Everyone else was being supportive and positive. It became an obsession, one night I read something from John Hopkins that just made sense, it was from 2008, an old medical case report. All of it made sense. I knew in my gut it was bad.

One year ago today the nightmare unfolded. I will never in a million years forget the force in my body telling me something was very wrong as I sat in the MRI waiting area. She was sedated in the scanner and I couldn't stop my mind from racing. I knew in my soul there was something very very bad about to unfold. So to all of you who told me not to worry (family,friends, Dr's, friends who are Dr's) that I was being paranoid, that it was probably growing pains, allergies etc and that she was fine. Guess what she wasn't! This is a screen shot of my email to the ordering orthopedic surgeon Dr. Glotzbecker who saw Katheryn for the first time and only ordered the MRI because her back cure was right sided "just to be on the safe side". The one I was emailing even though I knew he was away, I was emailing him from the waiting area while she was still in the scanner. I was emailing him because I knew something was wrong. He called me at 5pm that evening to tell me she probably had a "Benign Nerve Sheath Tumor", he left out the details at that time of the exact size (looking back now that was for the best). I remember sitting on my bed looking out my window as he continued to tell me that at least 15 other Dr's have already discussed the results. Im not an idiot, I knew this was bad. This included the team at Dana Farber (my thoughts exactally.. FUCK ITS CANCER). I grabbed a pen and surprising asked good straight questions because I knew when this conversation was over I would be twisting every word and trying to remember exactly what it was he was saying. I wrote as she spoke, messy but I wrote (I still have the paper). I felt like a transcriber. We continued to have several more phone calls throughout that evening into the late night. When I hung up the phone the rollercoaster ride began. I cannot believe its been one year. I am so recluse now. I can't talk about it without sobbing and for those of you who know me, this is a rarity. This page is my outlet and although its been a year today, and the majority of the support people have now scattered like cockroaches.... its not even close to over for her. I don't think it will ever be for me. ~Forever changed.

 

August 2nd 2016 – Happy early morning CHB, I am beyond frustrated. We read the MRI book, the videos, the lectures etc. etc. but I knew she would never sit still for the MRI. She has anxiety, she won’t do it. For 30min we tried, she just wouldn’t do it. We even took Kendal with u us to help. This meant we would wait a month for an appointment with sedation. UGH!

 

July 27th 2016 – We meet the orthopedic surgeon for the “scoliosis”. I have already spent a week beating the crap out of this topic from a research standpoint. I know a left sided curve at her age is a huge red flag, the MRI is suggested based of Kendal’s recent history of a spinal surgery one year ago for a tethered spinal cord. They want to try the MRI not sedated; I know this is a bad idea. Her anxiety is through the roof. Little do we know Kendal’s medical issues would save her sisters life, eventually lead to a cancer diagnosis. If it weren’t for Kendal’s history the MRI would have never been done. She would have been diagnosed with idiopathic scoliosis. In the meantime the plan is to move forward with bracing 18 hours a day until she 15 years old, she is fitted for a brace and this in itself is a huge process.

 

July 19th 2016 – Don’t ever skip a child’s physical. Today would be the day her life actually changes.. We just don’t know the roller-coaster ride we are about to board. The NP notices a curve with the scoliometer the little silver ball will roll right into the percent that will require and x-ray. I am not concerned at this point. We do the x-ray, I get a call within an hour that she needs to be seen at CHB asap. By that evening I have the images and report. I cannot even believe what I am looking at. This cannot be my daughter’s spine. I spend that entire night trying to figure out the conversion of the scoliometer percent to a curvature percent, I starting reading all about left sided curves. I knew something was wrong. It was a case report from the UK (I still have it saved as a fav on my phone). This report nailed it, it was like it all made sense, two years worth of mild normal childhood complaints can actually point to a tumor in a child’s chest. Her symptoms… two years prior Katheryn had daily stomach complaints, bad enough for me to have her seen by GI. Food allergies, there is a family history. It made sense. Removing lactose seemed to help some. This would continue to come and go. One year ago started the leg pains, bad enough and frequent enough that I had her seen for this. I remember being concerned that she had a tethered spinal cord like Kendal; I remember this was right after Kendal neurosurgery. I must have been super sensitive to the topic considering Kendal had similar complaints. I had her seen in July of 2015, the conclusion.. Growing pains. By June of 2016 Katheryn could hardly walk to the corner store, I knew something was very wrong.

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