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.

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​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.