“Halloween 2017. The day my world was turned upside down, unexpectedly, with one word. The day started just like any other. I had no reason to expect the phone call I received that morning. No warning signs whatsoever. The previous day, Oct 30, 2017, my then 13-year-old daughter, Gabby, went to the pediatrician, as she had been complaining about her left knee hurting on and off since early September. Over the summer, she passed up her twin brother and her older sister in height, so when she first mentioned her knee was hurting, I assumed it was growing pains.
Her older brother, Joey, had gone through a similar growth spurt between eighth and ninth grade and had constant pain in his knee as well, so I literally thought nothing of it. I told her to take some Motrin if it hurt a lot but other than that, there wasn’t much she could do for growing pains but wait for them to go away. Her leg was not swollen or bruised. She did not recall bumping into anything or doing anything to cause the pain. There was nothing visibly wrong with her leg whatsoever.
The Friday before Halloween, I took the kids to Target after school to get some stuff for Halloween and noticed Gabby was limping and not putting weight on her left leg. I questioned if it really hurt that bad because nothing looked wrong with her leg. She went from mentioning pain here and there to limping and crying that it ‘hurt so bad.’ When we got home that afternoon, I told her I was going to make an appointment with her pediatrician on Monday since she did not have school and that she would also be getting her flu shot. I honestly thought her pediatrician would say it was growing pains and she would just have to deal with the pain until it went away.
Monday came and her pediatrician did not seem overly concerned but could tell Gabby was in a lot of pain and having trouble walking (again nothing appeared to be wrong with her leg). She ordered x-rays, just to be sure something else wasn’t going on. She put in an order for crutches to be delivered so Gabby could keep the weight off her leg since walking seemed to make it hurt more. She said she would call the next day to see where to have the crutches delivered and to let me know if the x-rays showed anything. Not once did I think something was really wrong or that I would receive the news that was coming.
Halloween morning, Gabby and Tommy were sleeping when I left to take Hope to school. There were parent-teacher conferences that day so they did not have school. I was 10 minutes away from Hope’s school when the phone rang. I could see it was the pediatrician and answered, thinking she was just going to tell me the crutches would be delivered later that day and the x-rays came back normal. Instead, when I answered the phone I was greeted with, ‘My staff is putting through all the paperwork. There is nothing you need to do other than wait for instructions on what to do next.’ I sat there, not sure what she was talking about.
She then said as soon as they had more information, they would call and tell me when and where Gabby needed to go. I paused and asked her why I needed to take Gabby anywhere and what she was talking about, and that’s when she said the very last thing I ever expected to hear. ‘Mom, her x-rays are not good. They are very bad. She has a tumor in her knee and it is very very likely cancer.’ WHAT?! Cancer? Her knee hurts. How does that equal cancer? I really don’t remember much after that. Hope started crying as we pulled into the school parking lot. I quickly told her not to worry. Gabby would be fine. She would probably have surgery and maybe chemo, but no big deal, she didn’t need to worry about anything. Little did I know how wrong I was.
As I drove back home, her pediatrician called back and said I needed to go home, get Gabby, pack a bag for her and I (she said to not plan on coming home for 4-5 days), stop by her office to pick up the Xrays and the report and then to head directly to Children’s Hospital Los Angeles where doctors were waiting for us. I still could not comprehend what she was saying. I called Gabby’s dad (we had been divorced for 7 years at this point), my sister, my parents, and a friend. I arranged for Tommy to go stay with his best friend and then woke up Gabby and told her we needed to go. I don’t remember if I told her they thought she had cancer. The entire morning is a blur.
We pulled into the Children’s Hospital and were quickly taken into the ER and into a room when, one by one, doctors just kept coming in the room. Orthopedic surgeons, oncologists, doctor after doctor for an hour straight. Within a few hours, she was admitted to the fourth floor, which I would later learn is the cancer floor. I was told a ton of tests needed to be done over the next few days but because she wasn’t on the schedule for these tests, they would just come to get us as spots opened up. Hopefully, we would get to go home by the weekend (all this happened on a Tuesday).
At midnight that night, a nurse woke us up and she wheeled down for a chest CT, which I thought was odd, being that her knee hurt. I had no idea the cancer they suspected she had often spread to the lungs and that is why they did the chest CT first. Over the next few days, Gabby had x-rays, an MRI, a bone scan, a biopsy, and a slew of other tests. Finally, on Saturday we were discharged but told to return on Tuesday to meet with the oncology team. By this time, I had learned that they were fairly certain she had Osteosarcoma (aka bone cancer). The chest CT showed five or six growths on her lungs so likely, the cancer had already spread. During the biopsy, they discovered her femur was fractured and every day, her pain increased to the point that even heavy pain medications barely gave her any relief.
We returned home that weekend and had an open door policy the entire weekend so family and friends could come to see her before we returned back to the hospital. Gabby and Tommy were in the 8th grade and attended a small private school, where they had been since kindergarten and had been with basically the same group of kids for the last 8 years. Gabby’s cancer diagnosis hit her classroom and the entire school hard.
We returned to Children’s on Tuesday, November 7, 2017, and were given her diagnosis and treatment plan. She was diagnosed with aggressive, metastatic osteosarcoma. Basically, bone cancer had spread. Bone cancer is not staged. It is localized or metastasized. Hers was metastasized, which meant she had a 30 percent chance of beating this evil. She was to receive 18 rounds of chemotherapy, consisting of three different drugs, all given inpatient over 3 to 5 days, back to back. That meant we were going to be spending a lot of time in the hospital. The plan was seven rounds of chemo over 11 weeks, then a limb salvage surgery (a surgery to save her leg rather than amputate it as is often the case) and then 11 more rounds of chemo over 17 more weeks. Her oncologist said to plan treatment to take between 8 to 12 months because things rarely will go as planned and went over all the fun side effects of her chemo.
Her hair would start falling out in 2 to 3 weeks (she started losing hers on day 10), mouth and throat sores would make it impossible to eat and require hospitalization for IV pain meds and IV nutrition. More side effects were permanent hearing loss, heart problems/failure, infertility, weight loss, leukemia in 5 to 10 years, etc. I learned there is ONE treatment plan for osteosarcoma, but the chemos and protocol are over 35 years old. You would think with the world we live in and all the technology and medical advances, someone would have come up with something better at some point over the last 35 years, but nope. Not the case. Not with childhood cancer.
We were to return to the hospital Friday morning, November 10, 2017, to meet with the orthopedic surgeon who would be performing the limb salvage surgery and then she would have her port placed (a device implanted into her chest where she would receive her chemo). Then she would be admitted to the fourth floor for her first round of chemo. It all happened so fast. From diagnosis to the first round was barely over a week. That is how fast they had to act, how aggressive her cancer was.
Gabby started chemo on November 10, 2017, and finished her eighteenth round on August 21, 2018. She ended up having her limb salvage surgery on December 16, 201717, after her third round of chemo, months ahead of schedule because it appeared her tumor was growing. She was in surgery for over 11 hours and had the tumor, her entire knee, and 6 inches of her femur removed and replaced with titanium. A spot was discovered on her left shoulder in the week leading up to surgery. There was concern treatment wasn’t working. Chemo caused awful mouth and throat sores that required hospitalization between rounds. She went from 112 pounds to 85 pounds in just over a month. She took tons of medication for pain, for nausea, to increase her appetite, to help with all the side effects. There was medication around the clock, pills I had to force her to swallow even though she had sores in her throat and she screamed the whole time.
At 13 years old, she was angry and scared and lashed out at the nurses and the doctors and made everything harder than it needed to be. She had over two dozen platelet and blood transfusions, more biopsies, MRIs, chest CTs, and bone scans. We spent over 180 days in the hospital, the longest stretch being 25 days from December 8, 2017, through January 1, 2018, when she had round number three of chemo, her limb salvage surgery, and round four of chemo. She experienced permanent hearing loss and now has hearing aids. She was in a wheelchair, unable to walk for 15 months after surgery.
There were days I wondered if she would ever walk again. She and I spent Halloween, Thanksgiving, Christmas Eve, Christmas Day, New Year’s Eve, New Year’s Day, Valentine’s Day, my birthday and Easter in the hospital. Her siblings spent 180 days at home without their mom, relying on friends for rides to school, ride to soccer practice and games and trips to the grocery store to get food for the house. When I was home, it was for a few days, and I would try to get their life back in order and then it was back to the hospital. I ended up putting Gabby on a few psychiatric meds to help with her anger and attitude and the meds also helped with her appetite and nausea and allowed her to put weight back on without needing a feeding tube.
I can tell you after having gone through this experience that PTSD is real. Anxiety and fear of cancer returning is real. The life we all had before cancer is not the life we all have now after cancer. Cancer changed Gabby. It changed me. It changed her siblings. Cancer has a way of making you realize really quickly what is actually important in life, and I can tell you, it is none of the things we thought were important before cancer. Cancer teaches you that life, waking up every day, is truly a gift. Tomorrow is not promised to any of us. Because of cancer, we live differently, think differently, and love differently. We live in the NOW. For today, not tomorrow.
We do not make plans any farther than three months out because we have no idea what life will look like in three months. Gabby’s cancer has a 50 percent chance of returning over the next five years. 50 percent whether she is cancer-free for one year, two years, or even four years. She has scans every 3 months. We literally hold our breath and then exhale every three months when her scans come back clean. Her next set of scans, 18 months post-treatment, are January 28, 2020. We know and live with the reality that her cancer can return at any point, with no warning, much like it started.
Gabby started walking in March of 2019 and returned to school for her sophomore year in August of 2019. She continues to attend physical therapy twice a week to continue to build the strength back in her left leg. She will never be able to run or jump. She will need to have the hardware in her leg replaced in 20 years or so. She has a ton of side effects, both physical ones and emotional ones from cancer and chemo. While she no longer has cancer, cancer is still very much a part of our lives. There is no going back to life as it was before cancer.
The last two years have been ugly and messy and HARD, but at the same time, there have been beautiful moments woven into the ugly and messy and hard. I will never be thankful for cancer or glad it came into our lives, but I will forever be grateful for the lessons we have learned and for the people it has brought into our lives. I have learned more about life in the last two years than I have in the previous four decades I have been alive. It is crazy to think it has been over two years since we started this journey. It has been the longest and shortest two years of my life.
Living in the ‘cancer world’ is tough. Kids you have met during your own child’s journey relapse die. You see parents dealing with the unimaginable, dealing with the loss of their child, dealing with a terminal diagnosis. There are moments of frustration with your own child (like when Gab’s attitude comes out during PT). You have to be the mean mom and make them do things they don’t want to do (like PT). You are not sleeping well, you are trying to keep your head above water, trying to climb out from the weight on your chest. And then you look and you see your child living again and you remind yourself what she has been through, what you have been through and where she is now. You dry the tears, remind yourself of all the good and how the good far surpasses the bad (and sad) and try to let the worry go. Worry is the greatest thief of joy. It has taken too much joy that last two years. So now, instead of worrying, I watch her laugh, watch her smile, and watch her live.”
This story was submitted to Love What Matters by Kristi Galarneau. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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