On Saturday we packed up the kids and took them up to go sledding at Mt. Baker! We never know if at any time we will be heading back to Seattle Children’s so we are trying to take advantage of all the available time we have home with the kids (especially knowing Oliver’s stem cell infusion was coming up on Monday). We looked at the ski report before we left (the ski area is not open yet) and it looked like there was enough snow for sledding. As we got closer and closer to the top we started to get nervous because there was hardly any snow on the ground. Thankfully at the very top there was about 6” of snow!
Family snow gear brought to you by Costco haha
Once again we learned the lesson the hard way about making sure that we have the right equipment for the kids. Eliza had snow boots for the season but we hadn’t gotten Oliver snow boots yet. We put wool socks on him and shoved his feet in his size 6 rain boots. (The kids are getting new rain boots for Christmas because Oliver is really in size 9 shoe now). Oliver had a total meltdown and was saying, “Ouch, feet!” We ended up trading shoes with Eliza (who has smaller feet than Oliver) and the kids were happy as could be the rest of the time! I went and bought snow boots for Oliver from a thrift store for $7 as soon as we got home.
Eliza thought this sled was a little too fast.
We got a new sled from Costco this year which was really fast! We also got both kids snow suits from Costco this year which have been really nice even just for going on the playground at night with to stay warm. Eliza kept asking if she could go on the “slow sled” because she was scared of the Costco one. We had an old cheap plastic sled along too that we have used the past few years.
The parking lot was surprisingly full for this early in the season! There were quite a few snowshoers, some sledders, and some people hiking up with skis and skins. It was a great day for sledding because it was clear and 31 degrees so we weren’t too cold. Even with the busyness of the parking lot, we were able to walk about 100 yards away from the parking lot and have a perfect sledding hill completely to ourselves!
Seth figuring out that Oliver’s shoes are way too small.
If you are wanting to go sledding I would totally recommend going now before it gets too crazy busy on the weekends at the ski area! It feels so good to get the kids outside seeing the mountains, feeling the different textures, and using their muscles for play!
We are getting so close to being a year post-transplant for Oliver. Once the year was up, his cancer was never supposed to come back. We were going to be free to go back in public with him again. We could move on from cancer and try to never think about it again…but then we got test results showing that Oliver’s transplant was unexpectedly failing. He doesn’t have cancer right now, but he is at high risk for relapse. Relapse would mean a second transplant and just typing that out makes me want to throw up. A second transplant would mean that the year we just had was the easy year. It would mean living apart again. It would mean months of isolation and loneliness in the hospital. It would mean a significantly lower chance of survival and a significantly more damaged body on the other side.
I picked up Lysa Terkeurst’s book It’s Not Supposed to Be This Way yesterday and I finished reading it in 2 days. While I wouldn’t say it was the best book I have ever read, there were several parts that seemed like they were talking straight to me. We live in a broken world between two gardens and our souls long for and expect things to be right and perfect now.
I want people to know that I’m not any different than anyone
else. I don’t have some crazy extra dose of endurance or optimism or special
ability to be ok with my child having cancer. People sometimes say “you are so
strong” or “I don’t know how you do it.” You just do it. You go to the next
appointment and you wait for the next test results and pray. We were just a
really normal family and were 100% blindsided with cancer.
“If we keep walking around, thinking that God won’t give us more than we can handle, we set ourselves up to be suspicious of God. We know we are facing things that are too much for us. We are bombarded with burdens. We are weighted down with wondering. And we are all trying to make sense of things that don’t make sense. Before we can move forward in a healthy way, we must first acknowledge the truth about our insufficiency. Cancer is more than I can handle…on my own.” (p112)
Lysa Terkeurst, It’s Not Supposed to Be This Way
I do believe Jesus can perform a miracle for Oliver…I believe he already has! Oliver’s pediatrician catching his cancer before he was symptomatic, getting a 10/10 match for his transplant, Seth having Mondays off to be able to take Eliza to her chemo every week for a year, Oliver’s body doing SO well through transplant that one doctor said he is in the top 10% of kids that ever go through transplant, Oliver getting his feeding tube out way earlier than expected, living so close to one of the top transplant hospitals in the country, etc. All of these were miracles and mercies from God.
I pray with every fiber of my being that Oliver gets back to 100% donor cells and is cured and becomes a walking, talking miracle that proclaims the gospel for his entire long life.
I also know that prayers aren’t always answered as yes. Our
family has had a front row seat the past two years to families that have had their
prayers answered as no and it is gut-wrenching and heart breaking. It isn’t a
matter of that they didn’t pray hard enough or didn’t trust enough…this world
is just plain broken and NOT the way it is supposed to be. Almost daily we have
thrown in our faces that this world is NOT our home. This world is full of
sickness, sin, and brokenness. We are longing for someday when “He will wipe
away every tear from their eyes, and death shall be no more, neither shall
there be mourning, nor crying, nor pain anymore, for the former things have
passed away” Revelation 21:4. What a glorious day that will be!
Some days I grieve deeply over what I was hoping for my life. I love being a wife and mom. LOVE it. When I had kids I knew it would be hard and exhausting and fun and rewarding. What I did not expect was to cry as I folded size 3T laundry and wonder if my son will get to wear the next size up. I did not expect to wake up at night with nightmares of a medical procedure gone wrong. I did not expect to spend months away from one child while I took care of another one. I did not expect to tell my daughter that even though her chemo was over, her “dark eye” would never be light again.
I’m human – I get jealous of people’s lives that look easy,
whose kids don’t have cancer and the things they worry about seem
inconsequential. On the other hand, I know there are so many families who would
love to be in our position, to have treatment options, to have both our kids
alive and home. It is so unhelpful to play the comparison game. There is always
someone who has it easier and there is always someone who has it worse. Suffering
is suffering and hard is hard.
We have SO many things to be thankful for today. Right now,
our family is together. Right now, Oliver is feeling the best he has felt in
over a year. Right now, we have an amazing and encouraging network of support
of friends and family around us. We have doctors that have a plan for Oliver.
We have frozen cells that they can try to use. We have seen so many of God’s
mercies and glimpses of him over the past year.
Lysa also wrote:
“You live in a broken world where broken things happen. In a sin-soaked world horrible things happen. They just do. And you will hurt deeply because of these things. You, dear girl, will also watch others hurt. You will hear human answers that try to tie bows around the big blows of life. These sound good in a sermon but never hold up in real life. And that’s when you will see what a gift it is that you’ve been entrusted with enough hurt to keep you humane. You’ll offer the only real answer available: ‘The Lord helped me survive and He’ll help you too. I’ll hold your hand while you find your way to him.’
Lysa Terkerst, It’s Not Supposed to Be This Way
I don’t know what is going to happen. (Honestly none of us do, but it just seems a whole lot more flung in your face when you are waiting for a specific lab result or test). I probably will never know on this side of Heaven why our family, why Oliver, why suffering. It has brought me comfort to remind myself that God has all of Oliver’s days planned out. He knows and will be with us all every step of the way.
We also appreciate every. single. person. that has prayed
for Oliver and our family and that continues to do so. A few people have said
to me “I wish I could do more than pray” or “I know it is just words, but I am
praying for you.” IT IS NOT JUST WORDS. Please keep praying. I know the fact
that I am still able to peacefully sleep through almost every night is because
of people praying for me. I know the fact that Seth and I still have a strong
marriage on the other side of this year is because of people praying. We can
never ever thank you enough for praying and for letting us know that you are
praying.
“Though we can’t predict or control or demand the outcome of our circumstances, we can know with great certainty we will be okay. Better than okay. Better than normal. We will be victorious because Jesus is victorious (1 Corinthians 15:57). And victorious people were never meant to settle for normal.”
We have been wanting to visit Golden Ears Provincial Park for a while and yesterday it wasn’t raining, we didn’t have to go to Seattle on a Monday for once, and we packed up the kids and went! Ideally we are hoping to camp there sometime, but we wanted to scope it out first.
It was Veteran’s Day/Remembrance Day so the park was probably quite a bit busier for a Monday in November than normal, but we still had no trouble finding parking. I read online that sometimes during the peak summer months it can be really difficult to find parking for day use.
The park gates are open 8am – 5:30pm in the winter
Golden Ears Provincial Park is in British Columbia, Canada – pretty much straight north of Bellingham/Lynden. We took the Pacific/truck crossing border and it took us about an hour and a half to get there. We have Nexus passes (which I 100% recommend if you live near the border!) so the border crossing was really fast, even for a holiday! The entrance to the park AND parking is totally free at Golden Ears Park! I saw a sign that said camping is $5/person/night.
We got the kids some sweet new wool socks from Amazon – totally recommend!
We did two shorter hikes with the kids and had a blast! First we hiked the Lower Falls Trail which was 2.7km (1.6 miles) each way. The path was really wide and mostly flat packed gravel. I was wishing we had our Bob stroller with us because that would have been much easier than carrying the kids since it was so flat and wide! I wouldn’t go so far as to say it was wheelchair accessible though, because it did get a little bit hilly. Dogs are allowed in the park as long as they stay on a leash. The path followed along Gold Creek and ended at Gold Creek Falls.
The park has some massive tree stumps from old-growth trees!
We still had some daylight when we got back to the car so we decided to do the short (1km each way) North Beach Trail to Alouette Lake. The water in Gold Creek was a beautiful blue-green and we were so glad we were able to see Alouette Lake because it was gorgeous! We definitely want to come back and camp! We would take bikes and our inflatable raft for the lake next time.
Alouette Lake
The kids did great the whole time! They loved sitting next to the creek tossing rocks in the water. We brought snacks and their water bottles. Oliver’s one meltdown was solved with a dry diaper. Both kids happily walked extraordinarily slow for about 1/2km of the Lower Falls Trail then were happily carried the rest of the way!
We LOVE being able to get outside and explore with the kids when we can! It is so refreshing to be outside of hospital walls, letting the kids breathe fresh air and discover nature! We also only barely scratched the surface of what there is to see at Golden Ears Provincial Park! We can’t wait to go back!
I have never been a huge Halloween person but I wanted to celebrate this one because of how different it was from Halloween 2018!
Halloween 2018 was spent in the hospital with Oliver. He was admitted for his round of induction chemo and stayed until his blood cell counts recovered. He was inpatient 4 weeks straight. He was also in isolation because of a cold so he was not allowed to leave his room to walk around the halls. Even a cold can turn life-threatening for some phases of cancer treatment so the hospital is very strict about keeping sick kids away from other children in the cancer unit.
Oliver (13 months) dressed up as a Nebraska Football player during his first inpatient stay in October, 2018
Oliver still can’t be out in public because he is immune compromised from transplant, but he was able to dress up and spend some time with his cousins! I wasn’t able to be with Eliza last year on Halloween since she only came down to Seattle on the weekends so this year was extra special since I could see how excited she was to Trick-or-Treat!
Eliza and Oliver both dressed up like bumblebees. Eliza decided to switch costumes with Oliver last minute so he ended up with the more girly looking costume. We went downtown Lynden with Eliza for trick-or-treating which was CRAZY busy! Eliza had a blast though! She was exhausted by the end and even said “Mom, I think I got enough candy, can we go back to the car so I don’t have to walk any more?” (Side note: Eliza does seem to have more energy after finishing chemo – she dropped her afternoon nap about a week after finishing her last chemo treatment!)
Woods Coffee was giving away free kids hot chocolates on Halloween!
At night we were not planning on going around our neighborhood for trick-or-treating but we have a perfect neighborhood for it so after dinner we bundled up the kids and went to about 5 houses. We pulled Oliver in the wagon to watch and let Eliza go up to the doors to knock. Eliza was so excited that the neighbors were giving out treats! When we got home she asked, “Will tomorrow be Halloween too?”
Things are still so uncertain right now with Oliver but we are trying to fully take advantage of every family moment we have at home together! I would say Halloween 2019 was 1000x better than Halloween 2018!
Last weekend (Saturday…the day before Oliver was taken to Seattle via ambulance and Eliza was taken to the ER the next morning) Seth planned a “date day” for us! I thought it would be fun to share what we did on our date! My wonderful mom-in-law offered to babysit so we could get out without kids!
We dropped the kids off around 3:30pm and Seth took me wine tasting at Vartanyan Estate Winery off of Noon Rd in Bellingham. The tasting room is set up really cute. The owner was serving the wine and was very knowledgeable about each wine we tasted. Tasting is $7 per person and is waived if you buy a bottle. We were able to taste 6 different wines. I’m usually not a big red wine fan but the red wines they had were good and the white wines I loved! If you are local to Whatcom County this is definitely a fun date place to check out!
We forgot to take a picture inside the winery…so here is a picture of the sign from the car!
Next Seth took me to Vital Climbing Gym in Bellingham! We were gifted free passes from some friends to try it out since it was our first time visiting the gym! A day pass normally would be $17 per person. They also sell memberships for people that have more free time than we do (haha). I used to boulder quite a bit when I worked at the rec center at Western and Seth did some top roping in Nebraska at their rec center gym. Seth and I both own climbing shoes and chalk bags but we hadn’t used them in a long time! We had a blast bouldering for about 2 hours and were really sore for a few days after!
After climbing for about two hours we were really hungry and ended our date at Busara Thai Cuisine (our favorite restaurant in Bellingham!) I ordered Panang Gai Curry and Seth ordered Pad See Ew. Busara is really reasonably priced and has a great atmosphere! We had never been there on a weekend though and did have to wait about an hour for a table! Weeknights you usually don’t have to wait long for a table! We got back home just in time for Oliver’s 9pm medicine dose!
It was a really fun way to spend a longer date together! Over this last year we have learned that we really need to take advantage of every opportunity we have…literally the next day Seth was riding in the ambulance with Oliver to Seattle. Thankfully Oliver has recovered from his fever, but it just seems from one day to the next we don’t have a ton of opportunity to plan ahead for things. This past year has had some stressful moments and we spent a lot of time apart – it was such a fun day to just hang out and have fun together!
Eliza completed her chemo regimen for bilateral optic gliomas after having chemo nearly every week for over a year! She had her first chemo treatment at age 2.5 on September 7, 2018. Her last chemo treatment was age 3.5 on October 14, 2019.
Overall, Eliza’s treatment was relatively straightforward. She had several ER trips for fevers but never had to be admitted to the hospital overnight! She had an allergic reaction to her chemo drug about 2/3 of the way through treatment, but they were able to switch the type of chemo to complete treatment.
Eliza’s doctor and one of her two AMAZING nurse practitioners. There are no words to describe how AMAZING Seattle Children’s Oncology is…they are the kindest, smartest, most compassionate people I have ever met in my life.
Her tumors overall shrunk during treatment. At the beginning, they told us there was a 33% chance they would shrink, a 33% chance they would stay the same, and a 33% chance they would grow. Eliza’s tumors both shrunk but the one on her right optic nerve is still there. It most likely will stay there her whole life. She is completely blind in her right eye and will also stay that way. We think she is maybe able to see some light and dark but nothing else. She has 20/20 vision in her left eye currently.
An ER visit before Eliza lost her hair
We had our “End of Treatment” appointment on the same day as her last chemo dose. She will get her port taken out with a surgery next Thursday. Eliza’s follow up care will look like this:
First Year After Treatment: MRI every 3 months along with ophthalmology visits to check for tumor growth/vision changes.
Second and Third Years: MRI every 6 months with ophthalmology visits to check for tumor growth/vision changes.
Fourth to Tenth Year: MRI yearly with ophthalmology visit to check for tumor growth/vision changes.
Eliza napping during one of her 3 hour chemo infusions
No more MRIs after that as long as everything is stable! The type of tumors she had grow again about 33% of the time, but that means there is a 67% chance they will never grow again! We are SO excited to have Eliza’s hair grow back, to not have her blood cell counts memorized each week, to see her energy come back fully, and to see her grow and thrive!
Our family spent the weekend in Whistler after getting the news about Oliver not being 100% donor cells anymore on Wednesday. We had an amazing time as a family! On our way home on Monday we were planning on going to an interpretive forest near Squamish, BC, but it was dumping rain and about 45 degrees.
Instead we last-minute decided to go to Lynn Canyon Park in North Vancouver! We had never been to Capilano Suspension Bridge or Lynn Canyon, but Lynn Canyon is free and Capilano Suspension Bridge is $54 Canadian PER PERSON! (I’m sure it is cool too and maybe we will do it someday, but we were in the mood for free). Lynn Canyon is located in North Vancouver (about an hour and a half north from Bellingham) and was more or less on the way home from Whistler.
Lynn Canyon Park is incredible! It was a rainy Monday so there were very few people there. I’m sure it gets totally packed with people on sunny weekends in the summer! The suspension bridge itself is 90 feet above the ground and was safely enclosed so our kids could even walk by themselves!
The best part about the park by far was the boardwalk trail (part of the Baden-Powell Trail) along the side of Lynn Creek. We crossed the suspension bridge, walked along the boardwalk, crossed back across Twin Falls Bridge, and looped back to our car. It was about a 1 mile loop but included quite a few stairs (not stroller friendly!). Our kids were able to do most of it themselves!
The park also has a small free nature museum, nice public bathrooms, and a café. We totally want to go back when we are more prepared with water/kid carrier backpacks/snacks and hike more of the trails! 10/10 would recommend!
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!
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!
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!
Eliza is 3, turning 4 in December. We decided to homeschool for preschool for a couple of reasons:
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!
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!
I can’t believe Oliver is two. I know every parent says that on their kid’s birthday but I didn’t know if he would get to turn two, and here he is. What a miracle and a blessing. We are going to have a Nebraska/Dinosaur themed party next week to celebrate.
Oliver was born on September 17, 2017. He was perfect…life was perfect! We had a perfect girl and boy, 21 months apart. Oliver was an easy baby and really snuggly. He always fell asleep on me when we snuggled on the couch. He was also really laid back. He was diagnosed just a little before his first birthday – and has now been living longer WITH his diagnosis than without it.
Snuggly little happy baby!
He has undergone so much in his life already:
Surgery for Hickman line placement and removal
Extremely intense chemo and transplant
40+ days straight of throwing up and diarrhea and IV morphine for pain
Countless medications by mouth
Feeding tubes placed down his nose and throat
Weekly lab draw pokes in the arm and several IV placements
Being hooked up to an IV pole for days and days straight
Needing to hold still for countless x-rays, ultrasounds, and other procedures
Being woken up a minimum of every 4 hours, 24 hours a day while in the hospital
Hours and hours and hours of waiting in doctor offices and waiting rooms
Being unable to play in the dirt, sand, or sun and being mostly isolated (sometimes even from Eliza)
The list could go on and on
During isolation when Oliver and Eliza could not be in the same room
Oliver has stayed a sweet, joyful little boy. By a miracle he is not terrified of doctors, he is not scared of strangers, and he does not cry when he sees the lab draw nurses. Instead he smiles and waves.
Oliver learned how to eat again after not eating by mouth for several months.
He is a normal little boy that loves trucks and dinosaurs. He loves having books read to him and playing with Eliza. He is so smart and is learning new words every day. He has grown taller and stronger in the last year.
I hope he doesn’t remember a lot of what he has been through. I hope he is able to understand someday the difficult choices we had to make about long-term side-effects in order to save his life. I pray he sees his life as a miracle despite any challenges he may face. He is so loved and so prayed-for by so many. We thank God for every day of Oliver’s life. We are celebrating him like crazy today. Happy second birthday little Bub!
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