A Week at Mt. Rainier National Park

We planned for months to do a week-long camping trip at Glacier National Park but two days before we left we still were not able to get a Going to the Sun Road ticket (the website always crashed when everyone tried to buy tickets at the same time every morning and were instantly sold out) AND the weather was forecasted to be 100 degrees and smoky. 24 hours before we left, we decided to spend the week at Mt. Rainier instead! The weather was forecasted to be perfect and we called the park to make sure we thought we could get a first-come-first-serve camping spot. We are so glad we changed it up last minute!

Cougar Rock Campground fills up fast in the morning, especially on weekends! It has flush toilets, soap, paper towels, and drinking water but no hot water or showers.

Day 1: We had everything packed Thursday evening and left Friday morning for a family birthday party a couple hours from our house. We stayed in a hotel Friday night and left at 4:30am to arrive at Cougar Rock Campground by 7am. Seth waited in line at the ranger station until the ranger arrived at 7:30. There were 14 camping spots available for the day and we got the 6th one! Our camp spot was still occupied so we drove to Grove of the Patriarchs for a morning hike. Grove of the Patriarchs has enormous old-growth trees and a suspension bridge. Round-trip it is 1.5 miles and totally doable with little kids. In the afternoon we got to our campsite and set up our camp!

Grove of the Patriarchs Suspension Bridge
Old Growth Trees

Day 2: Sunday we drove up to the Sunrise area of Mt. Rainier. Looking back we probably should have gone on a weekday since we had to wait over an hour in line to enter the Sunrise area – they were letting cars in as cars drove out to make sure the parking lots were not overwhelmed. We were easily able to find a parking spot once we were in though! We did a hot and dusty 2-mile hike called the Silver Forest Trail. The views of Rainier were nice but were pretty much the same the entire way.

Silver Forest Trail at Sunrise

Day 3: We spent the day in the Paradise area of Mt. Rainier. The Paradise area is pretty much the only area in the park with full cell phone service. We took the Skyline Trail to Myrtle Fall and then continued on for about another 3/4 of a mile. There were gorgeous views of Rainier, wildflowers, streams and the trail had a good mix of shade and sun! The kids also completed their Junior Ranger booklets and got their Junior Ranger badges at the Paradise ranger station.

Hiking in the Paradise area

Day 4: This was our biggest day, and probably deserves its own blog post! We drove 3 hours south to Mt. St. Helens to hike the Ape Caves, a lava tube tunnel that is open to the public. Ape Caves does require a reservation and a $2 reservation fee, but it covers your whole car of people. There were plenty of spots available for a reservation when we booked a couple days in advance! There is an upper cave more difficult section and a lower, easier .75 mile section. We did the lower cave and it was perfect for the kids! It is definitely not wheelchair/stroller accessible but our kids were able to walk the entire way themselves.

Ape Caves!

Day 5: We woke up to cloudy skies and a colder campground on Wednesday. When it is cloudy at Mt. Rainier you aren’t able to see the mountain at all. We drove back up to Paradise and explored the Paradise Historic Inn. The kids enjoyed splitting a cinnamon roll from the cafe and Seth and I got some coffee. It felt warm and cozy and was a great morning of relaxing after our 6 hours of driving the day before. In the afternoon, we drove down to Longmire and walked around the 1/2 mile Trail of the Shadows nature trail. The clouds cleared by the afternoon and it ended up being the only cloudy day!

There are a lot of different areas to pull over and see waterfalls on the side of the road!
Crystal Mountain Gondola View

Day 6: Another out of park adventure day, we drove to Crystal Mountain Resort and took the gondola up the ski area. The views were incredible – you can see Mt. Rainier, Mt. St. Helens, and Mt. Adams from the top. We enjoyed our packed lunch at the top and did a little bit of hiking. There is a restaurant at the top for anyone wanting to pay $25 for lunch. You are able to hike down the 5 miles if you want, but the kids really wanted to ride the gondola back down!

Day 7: Our final day! We packed up our camp in the morning and explored part of the Carter Falls trail which starts right across the road from Cougar Rock Campground. This trail was really beautiful and we could have probably done more of the hike if we were ready with water and hiking shoes on the kids! We met some people on the trail from the Glacier area this day and they told us it was very busy, smoky, and hot in Montana – we were so thankful we chose Rainier!

I’d love to answer any questions about visiting or staying at Mt. Rainier National Park! It was a wonderful family camping trip! There are incredible longer hikes in the area too if you have older kids or no kids with you!

Will Our Baby Have NF1?

We just announced on social media that we are expecting Swanson baby #3 in October! We are so incredibly excited and can’t wait to meet the little one!

This is a really personal post and I’ve read and re-read it a bunch of times. I’ve been hesitant to post because maybe I’m oversharing…Here’s the thing though: I feel like I’ve been very public with our family’s journey the last couple years online through Oliver’s cancer treatment and Eliza’s treatment for her eye tumor. Because I’ve been so public, I’m going to address having another baby with the potential for having a genetic condition. I know not everyone is going to agree with me, and that’s ok. We aren’t all coming from the same views on life. I’m not writing this for anyone’s approval or coming from a need to explain myself. Ultimately this comes down to us and God. I believe that every life is a gift from God and he has each person’s life planned. I’m writing this because I know that those who have followed our story may be curious, or there may be other NF1 parents read this and may have faced this question themselves or will have to think about this in the future. I’m in a facebook group for parents of kids with NF1 and I know this can be a divisive topic!

We met with a genetic counselor twice to discuss NF1 and the potential risks and outcomes of having another baby. My first question was if having another baby would have a high chance of leukemia again. Our genetic counselor told us that having another baby with leukemia would be a 1 in a million chance again because Oliver had a DOUBLE genetic mutation. If he would have had one without the other he wouldn’t have developed his leukemia. I would obviously never want to put another child through that if I had the choice.

Most people with NF1 never develop any malignancy related to NF1 – if they develop tumors they are usually benign (like Eliza’s). 2/3 of kids with NF1 will never have major medical symptoms. Eliza and Oliver happened to both be in that 1/3 that did have major issues. Around 15% of kids with NF1 will get an optic glioma, but less than half of those kids need treatment. If you are interested in seeing more statistics about NF1, ctf.org (Children’s Tumor Foundation) is an amazing resource with tons of statistics and resources!

I could go on and on throwing statistics of this and that out, and how the most likely scenario is either no NF1 or a mild case, but with NF1 (and really, life in general), there are zero guarantees of what will happen. I’m just beginning the second trimester of pregnancy, and I know that even a full healthy pregnancy isn’t guaranteed to anyone – genetic conditions or not! I’ve learned in the last few years that we like to pretend we have a whole lot more control over our lives than we really do.

This baby does have a 50% chance of having NF1. I have NF1 (I don’t “carry the gene” for it – you either have it or you do not have it. The symptoms of it vary widely person to person and there is no way to predict mildness/severity). Eliza and Oliver both have NF1, but we didn’t know they (or I!) had it until Eliza was 3 and Oliver was 1.

I had a doctor tell me that if I want to have another baby, I could get pregnant, do genetic testing, and then terminate the pregnancy and “try again” if the baby had NF1. I was flabbergasted the doctor said that to me…again, I HAVE NF1. It was like the doctor telling me my life should have been terminated. WHAT! All this to say, we WILL get genetic testing done, but it will be after the baby is born. This way if they DO have NF1 we can do regular screenings to catch any issues early on.

Our kids have had challenges, sure. But they also have incredible, full, happy lives. They are full of joy, have friends, will go to school and are not suffering. They are not worth less because they have a piece of genetic material in the wrong spot. Goodness gracious.

Honestly, when you have a child, there are ZERO guarantees what is going to happen. Signing up for parenthood is signing up for risk of heartache. God gave us two incredible kids in Eliza and Oliver. I think they have an amazing story to tell of God’s faithfulness. This world is full of brokenness, and we have seen that first hand. Our world struggles with those with differences. I think we have come a long way, but there is still more advocating to be done. I know some people with NF1 choose not to have children of their own, and some have 5 kids! We’ve prayed about this baby and we have the support of our close friends and family.

I’m very open about discussing NF1 and our family’s journey if you have questions. Like I said above, ctf.org is a great resource on statistics and resources for NF1 families. Thank you for taking the time to read!

Lewis and Clark National Historical Park

We just came home from a weekend at Cannon Beach! On our way home we stopped at Lewis and Clark National Historical Park located near Astoria, Oregon. This is a bit of a drive for anyone living in NW Washington, but if you happen to be in the area it is definitely worth a stop!

Lewis and Clark National Historical Park is a grouping of a couple different locations. Our National Park Pass that we bought for our Teton trip in August lets us in to all the National Parks for a year, but if we did not have the pass it would have been $10 per adult (although this kind of seemed like an honor system because there was no entry gate or tag to purchase to display on your windshield). We were at the Fort Clatsop location for about 2 hours total.

We first stopped at the visitor center where they had FREE junior ranger packets and badges! We have found this varies from park to park (you had to pay for badges and junior ranger activity books at Yellowstone). Eliza especially was very excited to try to search for different plants and animals listed in her junior ranger book.

After picking up the kids’ junior ranger pamphlets and a map, we walked around the Fort Clatsop replica buildings. The kids were able to climb all around the structures. There were almost no other people around when we were there (on a Monday morning)!

After looking around Fort Clatsop, we did the Netul River Trail hike/walk which is about a mile long one way. There was a lot of wildlife along the river trail. Eliza found 10+ caterpillars, we saw a heron, banana slugs, river otters (muskrat? We weren’t entirely sure what they were), and ducks! It was totally flat and had several boardwalks along the path.

Reading through the park information, it sounds like they have a lot of great programs during the summer including FREE guided canoe tours and ranger hikes and programs! There is no camping at Lewis and Clark National Historical Park so it is more like a day-trip to do if you are already in the area at another state park or staying on the Oregon coast.

If you have more stamina than a 1 mile hike (pretty much our kids’ max), they have a trail that connects Fort Clatsop to Sunset Beach (about 5 miles) that sounded beautiful!

I would definitely stop here again as a place to stretch our legs if we are driving through!

Homeschool Preschool 2019/2020

We are just finishing up Eliza’s first year of homeschool preschool! We decided to homeschool preschool for a variety of reasons. One reason was because I spent the majority of 6 months away from Eliza during Oliver’s transplant in early 2019. Oliver was also severely immune compromised in 2019 so we did not want to risk Eliza bringing illnesses home from a preschool to Oliver.

Preschool (and school in general) looks so different family to family and year to year, but I thought I would share what worked for Eliza’s homeschool preschool this past year since there most likely will be more people homeschooling preschool this fall!

I don’t have a degree in education – I have a BA in English Literature and a BS in Dental Hygiene. I just couldn’t get enough of going to undergrad I guess! I was homeschooled for 4 years (3rd-6th) so I have some familiarity with what it involves.

When we started the preschool year, I bought the Playing Preschool curriculum from Busy Toddler. We did this for about 3 months but it ended up being much too easy for Eliza and too much prep for me. It actually would be perfect for Oliver this coming fall (he will be turning 3) but I don’t want to be doing two different curriculums at once for the kids.

I quickly realized that having a routine is the #1 thing that makes sure preschool runs smoothly in the mornings. Typically we do preschool from about 9:00-9:45am.

  1. Calendar Time: I have a Melissa & Doug Calendar and we discuss the month, date, day of the week, season, and temperature. We have songs that we sing for the months, days of the weeks, and the weather. Eliza & Oliver both participate with this.
  2. Picture Books: I have a goal of reading 1000 books to the kids this year. That averages out to only about 3 books a day and we are on track to make that goal! We have a big basket of library books in our living room at all times and the kids pick out between 3-5 books. I read out loud to them for about 20 minutes. Sometimes I’ll have them point out letters in the title or I’ll have Eliza sound out little words here and there.
  3. Writing: For the last 10-15 minutes Oliver does a coloring page while Eliza does two or three writing worksheets. I’ve loved the Big Preschool book and she has gone through a couple Kumon books.
Books from The Book Bundler when the library was closed for quarantine

That’s it! In the afternoon while Oliver takes his nap I do Eliza’s vision therapy exercises with her and then read a chapter out loud from a chapter book. We usually do this schedule 3 days a week since Seth works four 10 hour shifts and we don’t usually do preschool when he is home. I also work one day a week and it is hit and miss if we are able to get preschool done earlier in the morning. We continued this through the summer because it really helped the rhythm of the day go smoothly for our family.

We are VERY flexible with this schedule though – if we have doctor appointments or something else comes up we just don’t do it for the day! Eliza has one more year of preschool before starting kindergarten so I have different curriculum for Eliza this fall. We are hoping to eventually do a parent partnership program for kindergarten next fall!  

I know every family is so different in what works for them and there are many kids that don’t do preschool but this has worked really well for us! Hopefully this will give you some ideas for preschool at home this fall if that is what you have to do! I’d love to hear from any other families that have done parent partnership programs for elementary too because I don’t have any experience with participating in them!

Eliza learned how to write her name this year after working so hard at vision therapy!

Racehorse Falls

Hiking is finally allowed again in Washington so we can get back to some outdoor family adventures! Monday morning was a gorgeous day for the Pacific Northwest. We attempted to find Racehorse Falls a week ago and thought we found it…but realized when we got home that we pretty much found a steep creek, not the actual racehorse falls.

Here is what we thought was Racehorse Falls the first time haha!

Eliza and Oliver are getting to a tricky hiking age where they are too heavy to carry for a really long distance, but don’t have quite enough stamina for a multi-mile or steep hike. Racehorse falls was a perfect hike for them because it was only 0.6 miles each direction and had a gorgeous view of a waterfall at the end! It was pretty much entirely flat except for the last ¼ mile which was pretty steep (down on the way there, up on the way back). I held Eliza’s hand in a death-grip on the way down. On the way up, I put Oliver in the Ergo and Eliza in Seth’s kid-backpack for the way back up. I used my hands to grab roots to help myself up on the way back up a couple times, so I felt a lot safer having the kids in carriers. There was a good size drop-off in a couple areas too so I’d probably recommend a 1:1 adult-child ratio for toddlers/preschoolers if you go to the base of the falls.

Hand-over-hand on the uphill!

One great thing about this hike is that it is only about a 30 minute drive from our house! To get to Racehorse Falls, you drive up Mt. Baker Highway to Mosquito Lake Road – the trailhead is not well marked, but if you enter it in Google Maps it gives you the exact directions. Here is the link to the Alltrails website with reviews and directions too! The last part of the drive is on a gravel road. When we went a week ago there were quite a few potholes, but they filled them in since then and the road was totally fine to drive on with our VW Golf yesterday! There is no cell service on the trail though so it is a good idea to download offline maps before you go.

Oliver showing the entrance of the trail!

If you are worried about the steep hill with kids you could easily just hike to where it starts getting steep and then turn around. If you make it to the base of the falls, there are many wonderful picnic spots! There were very few bugs when we went since it is so early in the year. You definitely get a lot of bang for your buck as far as effort goes on this hike!

Racehorse Falls is beautiful!

We are really excited to get out and hike more this summer! Last summer we had to be extremely careful to keep Oliver out of the sun and he was not allowed to touch dirt for a year after transplant (until December 2019). This year we are still careful with sunscreen but let Oliver play outside as much as we can. He is able to hike and play in the dirt like a regular 2-year-old boy. It is so good for him and for us! Happy hiking!

We found a frog!

No Spend January!

For the first time ever, Seth and I decided to do a “no spend” month this January. We did it for a few reasons – January is a good time for a reset after Christmas spending. I LOVE Christmas and buying presents, especially this year when our family got to be home instead of living in the hospital, but I always have to stop myself from buying too many things! We also had gotten in a habit of ordering things on Amazon Prime without spending enough time thinking about if we really wanted/needed them. That one-click ordering will get you!

Seth has a pile of student loan debt still (I don’t want to get too specific with numbers here, but it is going to take us awhile to plow through it). One of our goals this year is to try to aggressively tackle Seth’s student loans.

We have budgeted every single month since 2016 and I’ve listened to some Dave Ramsey podcasts here and there as well as reading The Total Money Makeover. If you are struggling with debt or overwhelmed at making a budget, I would totally recommend checking out his podcast or books. With that being said, we definitely do not do all of the things he recommends. We still use credit cards (getting that cash back!) and pay them off at the end of every month.

We also aren’t going quite as crazy at paying off debt as Dave Ramsey recommends because over the last couple years we have realized how fragile life is, and how quickly it can change. Personally, we are trying to prioritize family time together rather than having Seth deliver pizzas or something on the weekends to try to pay off student loans faster.

January meal plan!

What we did for no-spend month:

  1. We were allowed to use any cash we already had in our wallets and our venmo/cash apps.
  2. For groceries, we tried to eat what was already in the house and paid cash for what we really needed to buy like milk & eggs.
  3. I unsubscribed from marketing emails which I think actually made a pretty big difference! I also tried to minimize watching any social media influencers.

Did we actually save money? I think we did a little bit, but we also had some “catching up” to do after January. We did a huge Costco run on the evening of January 29 to restock everything we were almost completely out of. More than saving money, I think it was just a good exercise in realizing how often we are buying things and trying to take a step back to re-evaluate what our goals are.  We want to be good stewards and try to plan ahead in case life suddenly changes again. I think it is a good thing we might try every January.

I know I’ve talked about this before, but we were SO generously given financial assistance from so many of you when our kids were diagnosed. All money given to us from the GoFundMe or in other ways has only ever been used directly for medical expenses, gas, food in Seattle, and the allergy-free carpet for Oliver’s bedroom and playroom. I’ve also had people say we don’t have to explain, but it makes me feel more comfortable when I do! We are so incredibly thankful and so humbled from how we are so surrounded and loved. It has changed our perspective on generosity and giving for the rest of our lives.  

Costco feast on January 29!

Five Tips for Towing Toddlers Biking

Biking is a great outdoor activity for families! It was one of the few things we could safely do with Oliver soon after being discharged from the hospital since it was germ-free and protected from sun! Eliza has low core muscle tone from her NF1 (but she has gotten SO much stronger in the past year!) so she still isn’t quite coordinated enough to go on her strider bike very long. Because of this, we do lots of family bike rides towing the kids! Eliza is almost 4 and Oliver is 2.

One disclaimer is that Seth is the true biker in our family, not me. He does ALL of the work hooking up the trailer, loading it, and hauling it. He bikes 5 miles to work and 5 miles back each day so he is in significantly better shape than I am. I just see if I can keep up with my bike while he hauls 70 pounds of kids and stuff no problem.

Just like with camping, we have had a few learn-by-failing-first moments with the bike trailer. Here are a couple things we have learned!

  1. Invest in a quality bike trailer! The In-Step (around $100) or similar bike trailers are fine if you don’t use them often or for very long. We had an In-Step one until Eliza turned 2 then upgraded to a MEC Bike trailer. (MEC is Canada’s version of REI). The MEC trailer has bucket seats that keep the kids from tipping in to each other. Similar trailers are the Burley or Thule. The only bummer is these trailers are pretty spendy ($300 – $700). We bought our MEC trailer used on Craigslist in Canada for under $100.


Puffy coats and puffy blanket to keep them warm!

2. Keep them warm! I don’t know why it takes us a couple fails to figure this out on any activity we do but if the kids are cold they will cry! We bundle them in their packable down coats and put a packable down blanket on their legs. We also bundle them in hats and gloves. When we are biking as adults it is easy to stay warm and forget how cold you can get being towed in the wind! Obviously, this is less of an issue during the summer months but even in the summer evenings it can get chilly in the trailer.


Othello Tunnels

3. Bring snacks, water, and diapers. I guess this one should be obvious too, but we have learned by failing on this! We bring the little Munchkin snack cups and fill them with animal crackers or goldfish crackers. Each kid gets their Contigo water bottle to have in their side pouch.


Stanley Park Seawall

4. Bike somewhere fun! We have biked around the Seawall at Stanley Park in Canada, on cross country mountain biking trails in Whistler, on the North Lake Whatcom trail, to Woods Coffee, to ice cream, and many other places. If the kids have something to look forward to when they get out it helps keep them excited to go again and again!


Biking soon after Oliver was out of the hospital!

5. Start them young(ish)! Most owners manuals say not to tow your child until they are 12 months old for safety reasons. We had Eliza in the trailer a little earlier than that but strapped her in her infant car seat. Maybe this was wise, maybe it wasn’t, but both kids are past the infant stage now! After age one, the more you take them out, the more used to going out they will get!

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Biking in Seattle before Oliver was admitted for transplant

By far our favorite places to bike are NOT on roads! The Seawall in Stanley Park was awesome for biking with no cars! We also biked through the Othello Tunnels in Canada which is a crushed-gravel trail. We are excited for when our kids can ride their own bikes but it looks like that will be a while so Seth will keep getting his towing workout in for now!

Our Homeschool Preschool Plan

Eliza is 3, turning 4 in December. We decided to homeschool for preschool for a couple of reasons:

  1. The main reason is that Eliza and I were apart for most of 6 months during Oliver’s treatment in Seattle. We were together on weekends but I felt like I missed out on daily life – meal times, bedtime routines, etc. Having this extra time with her will not be taken for granted!
  2. The doctors also recommended that we keep Eliza out of preschool/daycare/Sunday School situations as long as Oliver is on immune suppression drugs since so many kids get sick in those places. We do not want Eliza to get sick and need to go to the emergency room for a fever and we especially do not want Oliver to get sick and need to be admitted to the hospital for a fever.



We plan to homeschool for this year and next year. Kindergarten is still undecided but Eliza will most likely head into full-time “normal school” for first grade. She may require some extra support at school due to being blind in one eye, but we will figure that out when we get there. As far as we know she has no learning or social delays related to NF1 or her chemo treatment. Her only NF1 related delay that we know of is gross motor skills (like running, jumping, balance). She is in gymnastics and that has helped her strength and coordination quite a bit!

I bought the curriculum Playing Preschool which introduces the alphabet and foundational skills that kids will need for entering kindergarten through play-based activities. I am also supplementing a little bit with a Bible curriculum called Bible ABC.


We do school on Tuesday, Thursday, and Friday. Mondays are Children’s Hospital days and I work Wednesdays. Our routine typically goes: Calendar time, song & poem, picture book, craft/activity. This routine typically takes between 30 minutes to 2 hours depending on what the craft is and how much attention span we have to work with that day!

After a chaotic year I am really looking forward to spending time with both Eliza and Oliver learning and playing at home!


Roc Solid Foundation Playground Surprise!

Each cancer diagnosis at Seattle Children’s is paired with a social worker to help navigate housing, FMLA documents, etc. In June, our wonderful social worker emailed me and said an organization reached out to her offering to build a play set for Oliver and Eliza in our back yard! We said we were definitely interested, especially since Oliver is not supposed to be around crowds or public places (like park playgrounds) for a year after transplant!

Seth and Eliza measuring the yard

Roc Solid Foundation emailed me and set up “build day” to be August 9. I did not fully understand what a big coordinated project it was until the day arrived! They told us they would pick us up in the morning with a limo, build the play set in about 4 hours, then bring us back to reveal it!

Roc Solid sent us this box a few weeks before the build.

Volunteers flew in from all over, including California and Virginia. There were local volunteers helping too (including a motorcycle gang called the No Name Riders!). The build was sponsored by Wienerschnitzel so they had representatives fly from Los Angeles! The group showed up at our house around 8:00 a.m. the morning of August 9. A limo picked us up (along with my mom-in-law, sister-in-law, my two sisters, two nieces, and nephew) at 8:30am and took us to breakfast! We ate breakfast, then the kids got to pick out a toy at Walmart, followed by playing at a park for a little bit. Nothing like taking a limo to Walmart!

Founder Eric sending us off in the limo.

The whole day was so surreal. It was the BEST DAY EVER for our kids and we hadn’t even gotten home to see the playground yet! At 12:30 they took us home and met us at the front of our house, giving the kids blindfolds. We walked the kids to our back yard where we took off their blindfolds and showed them their new play set as the volunteers cheered!

Breakfast while they build

The kids were excited to see their playground and a little overwhelmed! They warmed up to it quickly and were nonstop playing almost right away. They have spent hours playing on it already and will use it for years and years to come. Wienerschnitzel served a lunch to the volunteers, friends, and neighbors that came to celebrate.

Taking off their blindfolds! (PC: Matthew Roland, BBJ)

The founder of Roc Solid Foundation, Eric, is a pediatric cancer survivor. He presented us with a framed picture that read: “What Cancer Cannot Do: Eat away peace, corrode faith, destroy confidence, shatter hope, kill friendship, silence courage, reduce eternal life, shut out memories, cripple love, conquer the spirit. Cancer is so limited.” I couldn’t hold it together as Eric said that Oliver and Eliza could grow up like he grew up to make a difference for other people. It was such a special day and a huge bright spot after some really hard times this year.

Cheering for the kids!

King 5 News from Seattle did a story on the playground build. I linked the video here. One strange thing is they used a picture of a girl that was NOT Eliza, but they said she was Eliza. The girl in picture they used was completely bald and had a feeding tube…Eliza never had a feeding tube and she also never went completely bald, just lost her long hair. She must not have looked sick enough for their news story, which is so bizarre.

So excited! (PC: Matthew Roland, BBJ)

It was so humbling to see a group of complete strangers come together and volunteer their time and effort to give this gift to our family. This past year we have seen some of our scariest, loneliest days of our lives so far; but we have also seen outpourings of love and generosity like this. We have felt love and support beyond anything we ever could have imagined in a situation like this. We have seen answers to prayers and miracles. There are a lot of really, really hard things in this broken world but we also get to see glimpses of grace and we are so incredibly thankful.

The AMAZING group of volunteers! (PC: Matthew Roland, BBJ)

What is a Bone Marrow Transplant?

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!

Oliver during his induction chemo before his transplant admission

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 after one of his pre-admission bone marrow biopsies

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.

Oliver’s actual transplant that flew from Europe!

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.

Oliver was hooked up to this IV pole 23.5 hours per 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.

Oliver and Eliza were not allowed in the same room for over a month because of isolation rules.

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!

Oliver’s feeding tube and central line

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.

HOME after Oliver and me living in Seattle for 6 months!

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.

One of many clinic appointments post-transplant

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.

Look how GREAT Oliver looks today!