Summer of 2018 was awesome. We had two healthy kids and did a 10-day car camping trip through Mt. Rainier and Olympic National Parks. We did family bike rides, were loving our second summer in the house we bought…Seth even said at one point “I don’t think life can get any more perfect than this.”
At the end of August we noticed Eliza’s right eye sticking out a little bit further than her left eye. I thought maybe she had hit her head or something and I hadn’t noticed. We took her to our pediatrician who sent us to a Bellingham ophthalmologist on a Friday. After looking in Eliza’s eye at her optic nerve, the ophthalmologist sent us straight to Seattle Children’s ER. We stayed in the ER until 3am when they sent us home with instructions to come back on Tuesday for an MRI under anesthesia.
We were already planning on going to Lake Chelan that weekend so after the ER we slept in a Lowe’s parking lot and drove the rest of the way to Lake Chelan in the morning. My parents met us there with Oliver. It was very smoky and hot in Chelan. On Tuesday we drove back to Seattle Children’s for Eliza’s MRI which showed she had benign but growing tumors on the nerves of her eyes. The one on her right eye was already fairly big and causing her eye to bulge out. At the same time they diagnosed her with a genetic condition called Neurofibromatosis Type 1.
Earlier in the year our pediatrician had referred us to neurology at Seattle Children’s because he suspected she might have Neurofibromatosis Type 1 because she had several café au lait (brown freckle) spots on her body. We met with neurology and they said they weren’t really sure if she had it or not and since I also had the spots and had no issues, they would just wait and see. The ophthalmology team referred us to the oncology clinic. The oncology clinic is a place you never ever want to end up as a parent.
We met with a brain tumor doctor who told us that Eliza would need to have surgery to have a port placed so she could get weekly chemotherapy for a year to try to shrink the tumors behind her eyes. The chemo had a 33% chance of shrinking the tumors, a 33% chance of them staying the same size, and a 33% chance of them continuing to grow. (Spoiler alert: they have been shrinking!)
Our pediatrician called us that same week when he found out Eliza was diagnosed with NF1 and optic gliomas and wanted us to follow up with lab work on Oliver. At Oliver’s 9 month well-child visit his iron was low. Oliver was put on iron drops and we repeated the test a few weeks later. Oliver’s white blood cell count was high but he also had a cold at the same time so we thought it was just from that. Our pediatrician had us get more lab work on Oliver and it showed high white blood cell counts again and extremely low iron. He referred us to the oncology clinic at Seattle Children’s but also said the labs didn’t look like typical leukemia so he wasn’t sure what it could be. Oliver was acting like a totally healthy kid as far as we could tell.
On September 6, 2018 Eliza had surgery to have her port placed. We were given binders of information and met with several nurses about how to care with a child with cancer. On September 7, 2018 (my birthday by the way) Eliza had her first chemotherapy treatment. Right after her chemotherapy treatment we went to meet with Oliver’s oncologist. Our pediatrician had said Oliver’s labs didn’t really look like leukemia so we were SHOCKED when the doctor told us that Oliver’s labs looked like he had an extremely rare and aggressive form of leukemia called Juvenile Myelomonocytic Leukemia (JMML) that has a 50% survival rate. The doctor specifically told us not to google JMML (which is the first thing I did when I got back in the car). This type of leukemia happens in less than 1% of kids that have NF1 due to a secondary genetic mutation. The only potential cure for JMML was a bone marrow transplant (at the time we had no clue what that involved).
We went from thinking we had two perfectly normal healthy kids in August to having two kids diagnosed with a genetic disease and both needing to go through chemotherapy. It was really overwhelming but our family, friends, and church rallied around us to figure out how we would spend the next 6+ months separated as a family. The oncology team at Seattle Children’s is truly amazing and our family is so incredibly thankful for them!
Even through all the difficult times of the past year we have seen so many answered prayers. The kindness and generosity of family, friends, and strangers is something we will never be able to repay. I know we had hundreds…probably thousands of people praying for our family. We felt so loved and supported and we continue to feel so much love and support from everyone around us. THANK YOU if you prayed or helped in any way!