Like in some other of my “medical type” posts, I first want to say that I am not a doctor and not an expert in cancer or bone marrow transplant! I had no clue what a bone marrow transplant was or why someone would need one before Oliver was diagnosed. This is a summary of what a bone marrow transplant is and why Oliver had one!

When Oliver was diagnosed with JMML they told us without a bone marrow transplant he would not survive. We had to sit through several conferences where they went over what a bone marrow transplant was along with the very serious long-term and life-threatening risks involved. We had to sign mountains of consent forms before they started treatment.

Oliver was given a variety of extremely high dose chemo during the days leading up to transplant day which killed the cancerous cells in his bone marrow. The immediate effects of the chemo and having no immune cells included vomiting, diarrhea, open sores in his mouth and digestive tract, the worst bleeding diaper rash you could possibly imagine, and complete loss of appetite. It also was very hard on his kidneys, liver, blood vessels, and other organs in his body. Once the new stem cells started producing their own cells, his body started to heal.

There are three sources that the cells for bone marrow transplant can come from: bone marrow, peripheral blood, or umbilical cord blood (collected from a baby’s umbilical cord after it is born). Doctors determine what type a person needs depending on a variety of factors. Oliver was given a peripheral blood transplant meaning his donor donated cells in a similar way to giving blood (only with more steps involved). His donor did not need to have surgery to take bone marrow out. The cells were given to Oliver in his central line (an IV placed in his chest during treatment) on transplant day.

Be the Match is an organization that helps with matching people for bone marrow transplants. Their website has a lot of information about all aspects of transplant. Everyone under age 44 should join Be the Match! It is free to join! They send you an envelope with a q-tip in it to swab your cheek and you just mail it back! Donating to someone would mean literally saving their life.

They were able to find a 10/10 match for Oliver! Not everyone is able to find a bone marrow match – it ranges from 19% to 80% depending on ethnicity according to bethematch.org. Oliver’s bone marrow donor came from somewhere in Europe (we heard either Germany or England but we aren’t totally sure). The person donated and they put the bag of transplant cells right on a plane and flew it straight to Oliver in Seattle! We hopefully will be able to find out who Oliver’s donor was two years after his transplant. Oliver was in the hospital for 42 days during transplant. (He also had a 4 week hospital stay for chemo prior to transplant). We had to stay locally in Seattle for 100 days after transplant. We are so incredibly thankful for the complete stranger that donated their cells for Oliver’s transplant!

Transplant is a long slow recovery. Oliver had a feeding tube in for 5 months after transplant because he completely lost his appetite. He threw up every single day for over 40 days straight. He can’t be in public places, dig in dirt or sand, swim, be around animals, or a lot of other things for a year after transplant while his immune system recovers.

Another complication of transplant is something called Graft vs Host disease. This is where the new transplant cells attack the person’s body because they recognize it as something foreign. This can show up as a variety of things but commonly includes skin problems, liver problems, and gut/digestive problems. These complications are usually treatable but can be very serious and need to be treated early. Oliver has not had too much graft vs host disease but it can happen up to two years after transplant most commonly.

The transplant will make Oliver more susceptible to other cancers for the rest of his life. He will require long-term follow up on other body systems for the rest of his life as well. Hopefully because Oliver was so young when he went through transplant he will forget the hard parts and someday will understand that despite his long term side effects, we made the only decision we could for him in choosing this transplant.

We packed up the kids and took them camping this past weekend! It had been almost a year since we had done an overnight camping trip! We typically try to do at least a 7-day car camping trip each summer but this summer has been a little different because of Oliver’s bone marrow transplant.

Oliver has a LOT of rules to follow for one year after transplant including no digging in dirt/sand, no touching lake/ocean/hose water, no crowded public places, no daycare/school, no being in the sun without massive sun protection…the list goes on and on! The doctors said camping was ok as long as we kept him off the dirt as much as possible and away from rummaging through ferns/other plants and away from crowds!

We probably wouldn’t have taken him camping 4 or 5 months after transplant but since we are 7 months out from transplant his immune system has had more time to recover and we were comfortable taking him. One year after transplant he will have all his restrictions lifted!

We decided to choose a location that was close to us in case any sort of emergency came up. (Both kids still need to be at an ER within an hour if they get a fever). We went to Larrabee State Park without a reservation but luckily there was someone that did not show up so we got a spot!

We had never camped at Larrabee before. Overall I would probably rate Larrabee State Park a 2/5 for a camping place.

Pros:

• Close to home
• Nearby beach access (about 1/2 mile)
• Nearly no bugs
• Fun playground for kids
• Picnic and open grassy areas
• You don’t need a Discover Pass if you are camping overnight but you do need one if you are just visiting for the day.

Cons:

• It cost $32 per night for a basic tent site which seems a little high.
• There is a train that goes through the park and blows its horn all night long. We were about as far from the train as you could be so it didn’t bother us too much but if you were close it would definitely wake you/kids up!
• The garbages were overflowing and the bathrooms had running water but no hot water. Normally I’m not too picky about bathrooms and garbage but when paying $32 it seems like it could be a little better!
• We had TERRIBLE neighbors. This isn’t really the park’s fault, you can have bad neighbors anywhere but they were loud, smoking cigarettes and weed, openly drinking hard alcohol (which was allowed), constantly swearing, and had kids and a dog running all over the place including into our campsite a couple times. They stayed up at least until 1am loudly talking. We have kids that are GREAT sleepers but if they would have woken our kids up I would not have been happy!

Modifications we made for Oliver included bringing lots of hand sanitizer and baby wipes, letting him play in the tent with toys while Eliza went to the playground with Seth, and having him sit in our lap or his camping chair instead of following Eliza around.

Overall we have had better luck with national parks than state parks as far as overnight camping but we were extremely happy to be able to fit in at least one tent camping trip this summer!

The Pacific Northwest has an unending supply of outdoor activities for all ages! Day hikes are an easy way to get out in nature with kids. We have learned a few things by trial and error taking our kids (now ages 3.5 and 1.5) on day hikes!

1. Make sure kids are WARM! This is the #1 mistake we have made! You are way warmer when you are the one doing the hiking effort vs just being carried in a backpack. We love toddler Columbia fleeces for spring/summer weather and REI packable down coats for fall/winter.

2. Brings lots of SNACKS! Not enough snacks/food is the #2 mistake we have made! Applesauce pouches and goldfish crackers have saved the day more than once. If kids are warm and fed it eliminates 90% of the complaining.

3. Use a good CHILD CARRIER! We typically use an Ergo when the kids are less than 6 months old and switch them to a solid child backpack after that. The child carriers have lots of pouches for snacks, water bottles, sunscreen, etc.

4. Start with SHORTER hikes, it helps to have a way out in case you do have to carry a crying toddler for over a mile (you bet we have done that!).

5. Encourage KIDS to walk/explore. We have been really surprised how far our toddlers will walk on their own – even uphill! We may be moving at a snail’s pace but the kids have a blast. We love Keen sandals for kids hiking!

6. Just get out and DO IT! Kids are going to have meltdowns at home and they are going to have meltdowns on hikes…as long as they are warm and fed there are a similar amount of meltdowns either way. Because we started taking the kids outside when they were really small they generally don’t bat an eye when we take them out now…in fact they love it!

First, I am not a doctor or a geneticist so this is a simplified version of Neurofibromatosis Type 1 (NF1). If you want real medical information, talk to your doctor! The information I have is from doctors, genetic counselors, and ctf.org. The Children’s Tumor Foundation (ctf.org) is a wonderful resource for NF1 and helps fund a lot of research!

I have been diagnosed with Neurofibromatosis Type 1 through genetic testing and Eliza and Oliver have also been diagnosed. I was tested after both kids were diagnosed. There are three types of Neurofibromatosis (NF1, NF2, and Schwannomatosis). NF affects 1 in every 3,000 people which is actually relatively common!

The main indicator of NF1 is multiple café au lait (light brown/birth mark) spots on the skin. I have 6 café au lait spots and no other symptoms. Many people with NF1 also have neurofibromas (benign tumors) on or under their skin. About 50% of people with NF1 have learning challenges. In more rare cases people with NF1 can develop benign tumors in their brain or on their optic nerves (Eliza!). NF tumors are usually not cancerous but can sometimes cause issues if they push on important body tissue (like Eliza’s optic nerve). There are also other rare complications that can occur such as scoliosis, high blood pressure, and delayed or early puberty.

Oliver getting leukemia is NOT a typical manifestation of NF1. He had a double genetic mutation – first the NF1 and then a second mutation that caused him to get JMML. Less than 1% of people with NF1 will develop leukemia.

NF1 is autosomal dominant which means since I have NF1 our kids had a 50% chance of getting it. Either you have it or you don’t, there is no such thing as being a “carrier.” 50% of the time NF1 is a spontaneous mutation and 50% of the time it is inherited from a parent. Unless serious complications from tumors occur, those with NF1 have a normal life expectancy.

There is a huge range of how NF1 can manifest. Some people never even know they have it, some people (like Oliver) have serious complications from it. While not always the case, most tumor growth happens in early childhood and during puberty. Eliza will get 3 month MRIs for a few years and then as long as the tumors are stable they will be just once a year.

There is no way to predict how it will manifest, even within the same family. There is currently no “cure” for NF1 since it is a genetic condition but there is a lot of research being done to find new ways to treat issues that may arise.

We met with Oliver’s NF1 doctor a couple weeks ago and she said something to me that made me furious. (Although at the time I just kept it inside…I didn’t realize until later the meaning of her words). I mentioned a family member of mine was getting tested for NF1 so they could be ready to watch out for signs of NF1 in their children if they had NF1. The doctor said “oh yeah, and there is genetic testing you can do on fetuses so that if they do have NF1 you can choose not to keep the pregnancy.” I HAVE NF1!! It was basically like the doctor was telling me I shouldn’t have been born and that my two kids should not have been born. I wouldn’t trade my kids for the world. They have not had the easiest life so far but they are happy and they are LOVED and they are children of God. No one is guaranteed a life without struggle. We live in a fallen world and there is suffering but that does not make my kids’ lives one bit less significant than a child born without NF1.

Honestly, I feel like my kids will be stronger for having gone through these trials.  I obviously would not have chosen Eliza to have an eye tumor or chosen Oliver to have leukemia but through these struggles we have seen answers to prayer, miracles, and people pouring love on us like you could not believe! We have been blessed and humbled through everything.

Please comment if you have any questions about NF1! I really barely knew about NF1 before the kids were diagnosed but I know a whole lot about it now

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!

I was actually thinking about starting a blog a year ago. My plan was to write about tips for camping with kids, fun toddler activities, and our other family adventures.

Instead of starting a family adventure blog last fall, both our kids were diagnosed with a genetic condition called Neurofibromatosis Type 1. As rare complications of this genetic disease, Eliza (then age 3) was diagnosed with bilateral optic gliomas (tumors on the nerves of her eyes) requiring chemotherapy and Oliver (then age 9 months) was diagnosed with a rare and aggressive form of leukemia called JMML requiring chemotherapy and a bone marrow transplant.

This past year has been the hardest of our lives but we have also had the most incredible outpouring of support from our family, church, community, and even complete strangers.

My hope is to share our family’s story as the kids continue to heal and maybe offer some encouragement to someone diagnosed with NF1, pediatric cancer, or maybe just someone who wants to take their kids backpacking!