“The summer of 2018 was so perfect. We had a beautiful 2-year-old daughter, Eliza, and a 10-month-old baby boy, Oliver. Our family loves to get outside and adventure. We went on an epic 7-day camping trip around Mt. Rainier and the Olympic Peninsula that August. The kids did great sleeping in a tent for that long. We were a really ‘normal’ and healthy family just going about our lives – and life was good.
There had been tiny little rumblings that something might be off – Eliza didn’t learn how to walk until she was 16 months old, so she had been referred to a physical therapist, but she had seemed to catch up. She had a couple of café-au-lait (light brown) spots our pediatrician had us see a neurologist for to rule out a genetic condition when she was around a year old. The neurologist said she didn’t fit all the criteria for a genetic issue so we would just keep an eye on it. I had the same brown spots, and just figured she got them from me.
At Oliver’s 9-month appointment, his iron levels were lower than normal, so they started him on some iron drops. They re-checked his blood work at 10 months and noticed his white blood cell counts were a little high, but he had a cold at the time and was acting totally normal so it didn’t really raise red flags.
All of the sudden during the last week of August, I noticed one of Eliza’s eyes sticking out further than the other one. We had a playdate with another 2-year old boy earlier that week, so I actually thought that the boy might have punched her in the eye without me noticing. 2 days later, her eye looked like it was sticking out even more so we took her to the doctor. They referred us to see an ophthalmologist a couple of days later. It was 4 p.m. on a Thursday. The eye doctor took one look with the light at Eliza’s eye and said, ‘I think she has a tumor behind her eye. You need to drive to the Children’s Hospital Emergency Room.’
I was stunned. I quickly called a friend to take Oliver until my parents could pick him up and called my husband at work. I packed a bag at home as quickly as I could and the ophthalmologist called Seattle Children’s to let them know we were coming. The children’s hospital is about a 2-hour drive from our house. My husband got off work at 6 p.m. and we drove to the emergency room. We stayed in the emergency room until about 4 a.m. while they figured out whether they would do an MRI under anesthesia that night or if they would wait until the daytime. Eventually, they came in and said we would be scheduled for an MRI the following Tuesday.
After Eliza’s MRI that Tuesday, we were waiting in a room in the ophthalmology clinic for results. I heard a technician in the hall say, ‘Oh, do you have the girl with the optic glioma?’ My heart sank. I knew it was Eliza. She had a tumor. The days started to blend together after that, but we met with an oncologist. We were relieved to find out that her tumor was not life-threatening, but could be vision-threatening. Simultaneously she was diagnosed with a genetic condition called Neurofibromatosis Type 1. We learned around 15% of kids with NF1 get optic gliomas – only about half of those kids require treatment, but Eliza was in that category. She would need to have chemotherapy every single week for an entire year. She would have a port placed in her chest so she wouldn’t need to have an IV placed every week. Her port placement was scheduled for September 6, with her first chemo treatment starting on September 7. My 29th birthday.
Our pediatrician called us as soon as he found out what was happening with Eliza and said, ‘I need you to take Oliver to see the oncologist at Seattle Children’s too. His bloodwork is not improving, he needs to be seen.’ Oliver had his appointment scheduled for September 7th, The same day as Eliza’s first chemo. September 6, we made the 2-hour drive and Eliza was put under anesthesia to have her port placed. We were given a fire-hose of information. Mountains of prescriptions for anti-nausea medication, pain medication, how to care for an immunocompromised child, etc. It was completely overwhelming.
On September 7, Eliza had her first chemo infusion. We sat and watched as medicine labeled as ‘HAZARDOUS’ dripped into her chest. That afternoon we went to Oliver’s appointment. Up until this moment, Oliver had barely been on our radar. He seemed healthy, happy, and like a regular 11-month old baby. He was just a week away from his 1st birthday. We walked into the room and a very kind oncology resident asked us a bunch of questions and felt Oliver’s stomach. I said, ‘I’m kind of confused why we are here. His blood work didn’t look like leukemia or anything.’ She looked right at me and said, ‘Well, we haven’t ruled out leukemia. Let me go get the doctor.’ The doctor came in and asked similar questions and performed a similar exam. He looked at us and said ‘We need to do further testing, but I think Oliver has a very rare type of leukemia called JMML. It can sometimes be associated with kids that have Neurofibromatosis Type 1. Try not to Google it.’
The first thing I did when I got in the car was Google it. The first thing I saw on the screen was that JMML has a 5% survival rate. I felt like I had been punched in the gut. My perfect baby boy was sitting in the car seat in the back seat and what could we possibly do? My husband took my phone and looked at it. He said ‘Kara, it says WITHOUT TREATMENT, the survival rate is 5%. With treatment, the survival rate is 50%.’ 50% gave me hope. 50% meant there was a chance. I also found out less than 1% of kids with NF1 get JMML. 2 weeks apart, both our kids were diagnosed with complications of a genetic condition I didn’t even know they had.
Eliza vomited all over her car seat on the 2-hour drive home. We stopped at the pharmacy for her 1-month supply of anti-nausea medication and they told us it would cost $700 for a one-month supply. We tried to give it to her in a little dropper and she spit it all out. It turned out the pharmacy did not have our updated insurance information so it got sorted out. To say that was the worst birthday of my life is a huge understatement. We had appointment upon appointment in the next few weeks and found out Oliver would need a bone marrow transplant.
I moved down to Seattle with Oliver because he couldn’t be more than a 15-minute drive from the hospital at all times. He had surgery to have a central line installed. I learned how to flush central lines, place feeding tubes that got thrown up, and how to manage taking care of a 1-year-old attached to an IV pole 24 hours a day. My husband would drive down on Friday nights with Eliza. We would be able to be together during the weekend and I could take Eliza to her chemo on Mondays for a ‘break’ while my husband stayed with Oliver in the hospital. It was so hard.
Oliver had to stay in the hospital for weeks at a time and had his bone marrow transplant a couple of days before Christmas, 2018. We were released from the hospital at the end of January 2019 but had to stay in Seattle until April due to having near-daily clinic and infusion appointments. He had to be readmitted to the hospital during the summer because his red blood cell count kept being too low. For a whole year after transplant, Oliver had to essentially be in isolation because he was so immunocompromised. He couldn’t touch dirt with his bare hands, we had to specially wash produce we got from the grocery store, he couldn’t be in any sort of a crowd. My phone had a bunch of alarms set for his medications. One medication had to be given to him every hour, on the hour, while he was awake. We had around a dozen middle-of-the-night ER visits for fevers for the kids including a 2-hour ambulance ride for Oliver from Bellingham to Seattle. One night both our kids were in separate ERs at the same time for fevers getting blood cultures drawn to make sure they did not have blood infections.
Even though this was such a dark time in our lives, we had blessing upon blessing given to us. The doctors and schedulers at the hospital bent over backward to make sure we could get both our kids’ appointments on the same day to avoid doing the 4-hour round trip drive twice in the same week. We had a nurse get special permission on Christmas to let Eliza visit her brother since he was technically in isolation and not allowed to have kid visitors. The Ronald McDonald House gave us a safe place to stay for free right across the street from the hospital. Our church put together a meal train for my husband and brought him a meal once a week for months. We had friends, family, and strangers all help us with medical bills, gift cards to the hospital Starbucks, and so many other things. We also got to spend so much time together as a family. Not being able to go in crowds or groups of people gave us plenty of opportunities for family bike rides, walks, game nights, and just a lot of family time. We knew how precious the time was together because we never knew what the next day would bring.
Oliver is now over 2-years cancer-free! Eliza’s tumor, unfortunately, caused her to be blind in one eye, but she has perfect vision in her other eye and it does not slow her down one bit. Both kids still have regular appointments but for the most part, they are just able to be kids now! Oliver’s bone marrow donor was a complete stranger from Germany. We recently got to find out who he is and we hope to take Oliver to meet him someday! Our community rallied around us like I never could have imagined.
I don’t know if I’ll ever fully process having both kids be diagnosed with cancer within 2 weeks of each other – it sounds made up. Even now if a stranger asks about our story I sometimes feel bad unloading the whole entire thing. It just seems made up – like how could we not have known ahead of time? People would say things like, ‘I can’t imagine going through this.’ I would say, ‘I don’t know, I can’t really imagine it either – but they are our kids. You just do the next thing. That’s what you sign up for when you become a parent.’ We also were never ever doing it on our own. We had an entire community around us like I never could have imagined, and like I never could repay.
My faith in God was deepened as we went through that difficult year. I realized we have a lot less control over our lives than I thought. Without faith and without the support around us, I don’t think we could have done it. Seeing everyone support us and lift us up through that time was just life-changing. Since the kids’ diagnosis, I’ve learned a lot about Neurofibromatosis Type 1. I had genetic testing done and found out I have NF1 and just never knew it! The cases can range from really mild (like mine) to more severe (like in Oliver’s rare case of leukemia) and so far, they haven’t found a predictor of what will happen. Statistically, the extreme cases are less of a likelihood, but you just never know for sure.
I have been able to connect with other moms of kids with NF1 through Instagram and a little blog that I write which has been amazing – especially some moms from other countries! I hope through our story people can see that NF1 and cancer don’t define us, but are just part of the story of our lives. We recently found out we are expecting baby #3! We extensively met with a genetic counselor and will have genetic testing done when the baby is born. Oliver and Eliza are so excited for their little sibling and we are excited to continue adventuring with our family!”
This story was submitted to Love What Matters by Kara Swanson from Bellingham, Washington. You can follow AJ’s journey on Instagram and her website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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