Kasey Harvey: Discovering Rhabdomyosarcoma.
On Sunday evening, November 2, 2014, our family went out for dinner at Pizza Nova, Shelter Island. After dinner we walked around Shelter Island and Kasey first mentioned she had a cold…at that point in time, little did we know the first sign of a life changing experience was about to begin…Rhabdomyosarcoma was about to show its hand.
Kasey went to school on Monday and trained afterwards with her Arsenal U13 soccer side and then came home like any normal teenager and did her homework. In the early hours of Tuesday morning she woke us up complaining of a sore cheek and a throbbing sensation so we gave her some cold medication and sent her back to bed. The next day Kasey seemed better, went to school and even completed a 3mile run in record time. That was to be her last day of school for 7 th grade.
The morning of Wednesday, November 5 th started like every other but we discovered Kasey’s left side of her face had swollen considerably overnight. Her regular doctor was booked solid and we ended up taking Kasey to an urgent care facility. The on-call doctor prescribed some antibiotics for a suspected sinus infection but was concerned at the presence of intense pain in a specific location on her check area and suggested we also follow up with her dentist to rule out an infection related to recent dental work. Upon leaving the urgent care, we travelled to her dentist only to find them closed but were able to schedule an appointment for the next morning through the office manager who was catching up on some work that afternoon.
The next morning we headed off for the dental appointment and after a consultation and x-rays her dentist decided there was an abscess on molar number 14. Looking back we suspect some of the infection stirred up by the tumors growth had drained into that tooth/pulp/root area. It was recommended we see an endodontist to have it checked out for a possible root canal on the affected tooth. Unfortunately our dental insurance only allowed the use of a couple of endodontists in Southern California and they were all in Riverside or Orange County and the earliest any could see us was mid-December! We promptly made the decision to pay out-of-pocket and made a booking with one in Carmel Valley for 7:30am the following morning!
Friday morning, December 7 th, Kasey found herself sitting in a chair having a root canal performed on molar #14. I want to add that the staff at Carmel Valley Endodontics are amazing! They took x-rays and consulted with us on the results, pointing out irregularities and the presence of some possible infection around the tooth and the lack of reaction to cold on that tooth. We made the call to perform the root canal to hopefully put an end to the infection source and get on with our lives. The procedure took a little less than an hour and afterward we discussed with the endodontist the findings within the nerve and pulp of the suspected tooth. Fortunately for Kasey, his honest assessment that while he believed “something” was not quite right he did, in fact, find what appeared to be a healthy tooth nerve.
We drove away from the endodontist perplexed on the whole situation and looking at the drainage pouring from her eye we headed to the emergency room at Scripps La Jolla Hospital to see if we could get to the bottom of this issue. I hated the prospect of using an ER in what was not really an emergency situation and parked out front of the facility pondering my next move. We called Kasey’s dentist to have the x-rays they had taken, emailed over to the endodontist for his review and thought that was the best plan of attack for the day while continuing the antibiotics over the weekend and seeing where we stood come Monday. I pointed our truck toward home and headed up the 56 toward Rancho Peñasquitos.
Somewhere on the 56 as we motored toward home, that instinct, sixth sense, nagging feeling became stronger and stronger. We hit the Camel Valley Road exit, circled under the freeway and got back on heading west toward the Scripps La Jolla ER…something was not right.
The doctor we met upon arrival formed another important link in the chain of events that allowed Kasey to be quickly diagnosed. He handed us two options; a CT Scan or some additional antibiotics and a wait-and-see approach. The CT Scan was quickly chosen and Kasey was hydrated, given pain killers and made comfortable while we watched the chaos that ensues in most ERs around the world. Looking back, it’s sad but comical at the same time. The inebriated homeless man that was there due to having been “bitten by a shark” was combative and no doubt frustrating to staff to have to deal with. Soon enough the CT Scan was complete and we consulted with the doctor who explained the entire maxillary sinus orbit was infected and that he was adding another antibiotic to the mix. Over the weekend he made several calls to check on Kasey’s health and on Sunday evening, when the swelling was still present, he suggested we visit Children’s Hospital in San Diego the next morning if things had not improved.
On Monday, November 10, 2014, we headed toward the ER at Children’s. There was enough concern that Kasey was admitted immediately, hooked to an IV and given fluids and pain medication. The plan was to keep her overnight and administer the antibiotics via the IV and hope the swelling, and suspected infection, would improve. It was arranged for us to release Kasey’s CT Scan from Scripps over to Children’s Hospital for viewing and to expedite the process we drove to Scripps and uplifted the disc and delivered it to Children’s.
Ear, Nose and Throat (ENT) specialists visited Kasey on the Tuesday and seeing no improvement and concerned with the extremely painful section of the face coupled with the amount of “infection” in the maxillary sinus decided to give us the option of waiting out the antibiotics or having them perform a small surgery to shave through the sinus opening with a small camera operated device and clean out the offending infection. We went with the surgical option. On Wednesday the 12 th, Kasey underwent the successful procedure and the doctor advised they had removed a lot of “cottage cheese” type “infection” from the maxillary sinus. They had sent it off to the lab for testing and the purpose was to decide what specific antibiotic would be used to knock out the infection completely. Kasey was discharged from hospital on Thursday, November 14 th. And headed home to rest and put the ordeal behind her…or so we thought.
Sunday, November 16, 2014, will always be a day etched in our minds. We decided to drive up to Orange County so Kasey could catch up with her soccer team with an eye on her returning to training the next day. Her side was heading to the ESPN Disney Showcase in Orlando, Florida, in two weeks and she needed to get back up to speed. We chatted in the car about how good it was to be through the ordeal and how lucky we was that it wasn’t something worse. How wrong we were and in a few short hours we would find out just how wrong.
Kasey enjoyed meeting her team again and watching the game from the team bench. We informed her coach she would be back tomorrow at full training and we walked back to the car. We drove out of the Rancho Mission Viejo Riding Park Fields, San Juan Capistrano, to return home for a relaxing Sunday evening. I suddenly thought that my youngest daughter had left her chair behind and asked her and of course she had. I flipped a turn at the gate, parked and ran back to retrieve the item, stopping at the restroom on the way back to the car. Upon exiting the restroom I saw my wife on the sidewalk above me with her phone to her ear, waving wildly at me. Once in earshot, I heard her yell three words I will never forget; “Kasey has cancer”. My world stopped.
The next 20minutes were an out of body experience, literally. I see myself talking on the phone on a sidewalk. I drop to my knees and I beg for answers while another part of my brain is solving the problem…I would just swap with Kasey. I would exchange my life right then and there on that sidewalk and Kasey would live on cancer free. It doesn’t work like that. I heard the doctor stammer and pause on my questions and I knew this was no quick-fix cancer. I heard a name that I would not comprehend until a day or so later and I heard the next steps but in reality only heard the one that we would be seen and further tests carried out in the morning at Children’s Hospital. I heard chemotherapy and radiation treatment. Most importantly, I heard survivable and that she had not lost anyone yet…there was hope.
At this point we had Kasey and her sister Kaitlin in the back seat of our car seeing this play out on the side walk. Another parent from Kasey’s team had pulled over sensing something was amiss. And there it went down…Kasey was told on that sidewalk surrounded by several teammates, her sister and her parents. Is a quiet beach, forest, doctor’s office or a rock concert a better place for something as heavy as this to play out? I suspect not.
Sunday evening was a gathering of close friends at the Harvey residence. One is a cancer battler and undergoing chemotherapy herself and she comforted Kasey with the knowledge that she is not alone in the world in this fight. Millions around the world are battling this disease and many are winning.
Monday, November 16, 2014, dawned and we enjoyed a bagel together under the sun at a local shopping center. Life seemed almost normal. The call came in as expected and we were set to meet an oncology team at Children’s Hospital later that morning. The wheels were, indeed, spinning quickly.
If we were under any illusion that the meeting in a 6x6ft room crammed with doctors would be routine then we were mistaken. It was hellish. This would be a battle and the battle wasn’t even close to being at the start line. Kasey would need several invasive tests to eliminate the chance that the cancer, now named “Rabdomyosarcoma”, had not spread. Spreading or even the discovered tumor being a secondary cancer was not something we had considered at that point in time. After the testing, a roadmap of treatment would be laid out that would likely follow a year of chemotherapy treatment concurrent with a period of radiation treatment. Due to the difficult location of the tumor, surgery would not be a viable option. There we had it. Kasey was admitted and the testing requirements were entered into the schedule. We waited.
Susan and I have lived in the United States since 1991 or thereabouts. We settled in San Diego in August, 1994 and apart from 11months in Rangiora/Christchurch, New Zealand, in 2003/04, we have been happy SoCal transplants. Living remote from childhood friends and our families is at times difficult. There was a moment in the aftermath of the blitzkrieg that went down on the OC sidewalk that we felt very, very alone in this world. The four of us sat in our car alone and it was a frightening feeling. Then slowly people found out what was happening to our family and the support grew, people called and people rallied. The support is what has gotten us through to this point in time. Out of the ashes of the blitzkrieg, we saw hope.
I’m going to wrap up the story by pasting my personal Facebook posts starting with letting our friends and family know what was going on (the ones were simply could not call due to logistical constraints) – mainly because I cannot reach back into those moments and rewrite with the same passion. I have many more moments ahead of me, as does the rest of the family, so emotional energy must be retained. All I can say for certain is Harvey’s don’t ever give up … “Losing is NOT an option”.
Facebook Posts Nov. 17th ~ 20th, 2014.
Nov. 17, 2014: I don’t know quite where to start this post to be honest….some of you already know and if you don’t we apologize for the method of delivery but it’s been a whirlwind 18hrs. Yesterday we received word that Kasey’s Pathology results had come back that she has a form of cancer called “Rhabdomyosarcoma”. As of writing this we are packing to take her back to Children’s Hospital to be admitted for immediate treatment. There’s a good chance it is localized and curable. The next few days will be heavy shit indeed.
Nov. 17, 2014 (Post #2): Kasey killin’ time and in good spirits. CT scan done but MRI stopped because of braces which need to be removed. Waiting on a bone scan, new MRI, spine fluid test and bone marrow test. When they come back negative for any spread of the cancer then chemo and radiation can begin most likely Thursday. Kasey should be home this weekend and then begin a patten of treatments once every three weeks for a year. Then we rebuild her strength and fitness back to the athlete she currently is. The support is overwhelming.
Nov. 18, 2014: Kasey’s up and rockin’…..saved her first goal!!! Negative CT scan for all the vital organs like lungs, liver, pancreas etc. Kase is going now for the bone marrow draw and spinal fluid tap and later today for the full bone scan. Thursday for the MRI. Still some goals to save but the first one has been saved and punted away.
Nov. 18, 2014 (Post #2): Second save!!! Bone scan for the rest of Kasey’s body is NEGATIVE. That’s another huge one kept out.
Nov. 18, 2014 (Post #3): A good day. Two huge results returned negative for cancer spread and a party in the Acute Care like no other with Kase and her friends. Huge thank you to everyone who brought gifts, food, balloons etc. the room looks awesome and the spill over flowers (none allowed at acute care) are filling our home for her return soon. Cannot believe the over whelming support and kindness from so many people toward Kasey and our family….messages, calls, posts on FB. Our Arsenal Soccer family and our Scripps Ranch Softball family rock along with friends and family worldwide. Tomorrow see her port installed (with a surgery) for the chemo that should begin Friday. There’s one more MRI and results from today’s fluid tests to come. Getting closer to “game on” to shrink this cancer down and out. Her spirit is amazingly strong and inspirational…not one whine during any procedure. She’s focused and ready to fight.
Nov. 19, 2014: Another nice save!!Negative spine fluid test and preliminary negative bone marrow test.
Nov. 19, 2014 (Post #2): Official result on the three bone marrow panels is NEGATIVE. So spine fluid and bone marrow is official clear. Having her braces off right now (so that’s another positive) ready for tomorrow’s MRI that maps the position of the tumor for the proton radiation to target. So….we know the enemy (Rabdomyosarcoma), where it’s hiding, and how to destroy it. Game on this Friday). Kasey is home tonight and back at the hospital ready for battle in the morning.
Nov. 20, 2014: GAME ON…Chemo has begun!!
After four days of stratagy, testing, elimination and preparation, Kasey’s awesome Oncology team hit back tonight with the first round of the cancer killer. Getting negative results on every test for the spread of her cancer was incredible. Like I said previously, we now know it’s name, where it hides, its size and how to kill it.
It’s going to be a 52 week journey that will be incredibly tough for Kasey. Treatments of radiation and/or chemo on a relentless daily cycle for much of the time. Some of the specific types of chemo will be easy to handle and some very challenging. As her “Daddy” I am scared of what it will do to my baby but as her buddy and personal coach over the past seven years of her sports, I am there to make sure she endures the pain, survives, rehabilitates and is even stronger than before. Kasey is an incredible human being and will win this game. While doing so, Kasey will deliver a message to those out there facing adversity that anything is possible to achieve with positive thoughts AND the ability to control ones mind (and fear) when faced with life threatening danger while focusing on what needs to be done to win/survive.
Massive thanks for the continued support – please keep it coming. There’s times Susan and I have felt rock bottom and then a message on FB or text has been all it has taken to refocus and keep going.
Huge thanks to some special people Sunday and again today that are/were faced with the same fight and have taken Kasey aside and motivated her and explained what will happen. You know who you are and your experience is now helping save a 13yr olds life. Thanks to a family that’s always been there for us and is still pulling strings, running our family logistics and working in the background raising money for Kasey (directly for Kasey’s needs and not medical costs or anything else – the overwhelming support that fund has generated is amazing and it’s going to provide things like a wig with her own hair, a decent mattress pad, a comfy desk chair, specific nutrition needs, etc.) Thanks to my friends who know I operate as a lone-wolf and are cool with that but stepped straight in and supported me with messages and calls on a regular basis. Thanks to a professional athlete who texted Kasey with some motivational words during the night that meant so much and to the Girl Scouts who worked on the coolest blanket ever! Thanks to Kasey’s old teachers at CVES this morning for the hugs and support (and the gift of the iconic “Rosie Bear”) as she headed down for a heavy day at Children’s Hospital and a long journey destroying the cancer and getting healthy again. Thanks for all the food we have been brought and for all the help with Kate and those that took care of calling people and arranging things for us. Every single message, gift, toy, ballon and flower means something to Kasey and the rest of the family – most of all it means that people care and are behind her in this fight and that is powerful motivation.
It’s a long fight and one that is sure to dish up some surprises and direction changes along the way. I whispered something to Kase this evening and she poked her face where the tumor hides and said “die cancer, it’s (chemo) coming to get you”.
A complete log and virtually "day-by-day" account of Kasey's journey exists on Facebook (you may need to scroll down for a while to reach the beginning!): Team Kasey Facebook