Vision Therapy Update

Eliza has been doing vision therapy for about 8 months now! She started going weekly for an hour each week from January through mid-March. We took about a 3-month break during COVID, then started going every other week for 30 minutes each time.

Just a little background refresher: Eliza was diagnosed with an optic glioma (tumor on the nerve going to her right eye) in September, 2018. She did a year of weekly chemo which shrunk the tumor but left her nearly blind in her right eye. She does have some vision in that eye, however, and with vision therapy we hoped to maintain/strengthen the vision in that eye and help her with balance and coordination.

I am 100% convinced that vision therapy has helped Eliza. We saw immediate improvements in her balance, ability to color inside lines, and significant improvement in being comfortable with wearing a patch. She doesn’t have enough functional vision to be able to be patched for 3-4 hours a day because she can’t see more than a few inches in front of her, but she is able to do vision therapy exercises for 15-20 minutes each day. We’ve also noticed that doing these exercises helps keep her right eye tracking with her left eye rather than turning in towards her nose and going cross-eyed.

Vision therapy is SO fascinating! Her vision therapist was amazing, and spent a lot of time teaching both me and Eliza different red/green activities (where her left eye can see only one color and her right eye can only see one color) to force both eyes to work together. She also did balance activities, peripheral vision activities, and patched activities.

I am so much more confident in what Eliza specifically can and cannot see with her right eye because of vision therapy. Her routine 3-month eye exams at the ophthalmologist are so quick, and usually happen when Eliza is already exhausted from the drive to Seattle and multiple other appointments. Last time her eye exam was an hour after waking up from anesthesia for her MRI…you can bet that eye exam wasn’t accurate! Her ophthalmologist isn’t really supportive of vision therapy, but I’m going with my mama gut on this one and pursuing this alternative therapy to give Eliza the maximum use of her vision that she can get!

Example of a red/green activity: Eliza wears these glasses
Eliza wears the glasses and puts the tokens of the corresponding color on the squares
One eye can see the RED and the green is cancelled out by the green shade
The other eye can only see the GREEN and the red is cancelled out by the red shade!

Eliza has started getting a little bit sneaky with her red/green activities by scrunching her nose up so she can see with her left eye for a millisecond to complete the activities faster. Her vision therapist said this is REALLY common with kids doing vision therapy her age. We want to keep vision therapy as light and fun, and not something she dreads SO…

We’re taking a 4-6 month break from going to vision therapy sessions (as recommended by her vision therapist) to focus on just doing patched activities at home to try to continue to strengthen/maintain her right eye. We will continue to do 15-20 minutes every day at home!

Vision therapy is pretty expensive ($90-120 per session, not covered by insurance because it is an “alternative medicine”) and her vision therapist knows we have plenty of patched activities we can do at home (pretty much any preschool-type sorting or matching games). We will go back in a few months to see if Eliza is ready to do red-green activities again! Eliza’s vision therapist said it is very common to do a few months on/a few months off as she grows up.

We have been so happy with doing vision therapy and I’ve heard from many other moms that it helped their kids with various vision-related issues too!

I’m so happy to answer any questions about vision therapy to the best of my ability!

Not vision therapy, but Eliza’s drawing and letter forming has improved significantly since doing vision therapy!

On Anxiety

I’ve been debating about whether or not to write on this topic for months because I’m not an expert in the field of mental health or theology, but I am an expert in my own experience so I can at least write about that! I just finished reading a wonderful book about anxiety called “Raising Worry-Free Girls” by Sissy Goff which I would highly recommend to anyone who has struggled with anxiety or anyone that has kids.

I’ve never really considered myself a chronically anxious person. I’ve usually been able to sleep well, have faith in God, and feel like I’m usually level-headed. Until Oliver got leukemia. I felt like I was in fight-or-flight survival mode all through treatment. Doctors would tell us exactly what to do, exactly what appointments to go to, what medications to give. I was exhausted going through the motions of taking care of him and lost 17 pounds while living in Seattle because of the stress. Even then I never really felt chronic “anxiety.” Once we came home things changed though, especially when they told us there was a good chance Oliver could be relapsing. I worried that Eliza would go blind, that there would be no treatment options for Oliver, etc. I would wake up with nightmares that Oliver had died; sometimes I felt like it was difficult to take a full breath and felt like an elephant was sitting on my chest. I was less kind to others when I was feeling this anxiety.  

Ironically (divinely?) the Bible verse we chose for Oliver’s baby dedication way before he was diagnosed was Matthew 6:25-32:

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you.”

Oliver as a baby

The thing is, fear and anxiety are NOT from God. The Bible says over and over again not to fear, not to worry. God fills us with peace, self-control, patience, and love. Go on social media for about 2 seconds and you see fear and anxiety everywhere. Conspiracy theories abound. People are putting way too much faith and trust in an incredibly broken political system. There are never-ending reasons to worry – we are in a world full of really scary broken things. BUT we have hope. We have hope for right now and we have hope for our future!

I went and saw a counselor (who I honestly felt like wasn’t 100% helpful…he seemed really flabbergasted by our family’s whole story and then told me I needed to spend more time being sad. I DO think that counseling would be really beneficial if you find the right personality fit and I’m sure I will seek out counseling again if Oliver does end up relapsing or we spend a significant amount of time inpatient again). One thing the counselor said that was helpful though was recognizing anxiety or anxious thoughts for what they were.

We made a few changes. Seth offered to take Oliver to his monthly cancer appointments instead of me since that massively helped. I also mentioned to a friend that someone told me that sugar causes cancer so I would worry and feel guilty that maybe I was causing Oliver to relapse. That friend called me out and said “that is NOT from God. If you think you can control what happens to Oliver, then you are living with the view that you are in control, not God.” She was totally right. It helps to constantly remind myself that God has all of Oliver’s days planned out already. Of course I will still take care of him to the best of my ability and feed him healthy foods, take him to his appointments, and make the healthiest choices possible for him. But I don’t want those feelings of guilt and anxiety to creep in, because they are not from God.

Seth taking Oliver to one of his oncology appointments

The thing is, by trusting God, I’m not saying that nothing bad will happen. I know it very well could, but I’m trusting that God controls the outcomes right now and in the future. It also doesn’t mean that I don’t deeply grieve for the bad things that happen in our world, of course I do. I will never be ok with kids (or anyone) getting cancer, injustice, racism, etc. but I will have deep peace while fighting for health, justice, and peace.

The book I mentioned at the beginning had a great quote:

“As believers, we often think life is a formula, that two plus two always equals four, that following Jesus equals happiness. I would love nothing more than for that to be the case. My life has hope because I follow Jesus. However, I don’t believe that makes my life happy. Or that the happiness stays for long. I don’t believe it’s what Jesus promised either. Two plus two sometimes equals five. Your spouse dies unexpectedly just when you’re starting a family. Your career never takes off in the way you imagine. Two kind parents don’t necessarily make for a kind, easy child. Still, I believe God never makes mistakes. There is good and life and light this side of heaven. And yes, there’s also trouble.” – Sissy Goff “Raising Worry Free Girls” p. 170

Sissy Goff “Raising Worry Free Girls” p. 170

I’m not saying I will never worry or even that I don’t worry or. I have been able to have the feeling go away of an elephant sitting on my chest or thinking about what-ifs with Oliver as I’m falling asleep. I’m saying that I recognize my worry as not from God and if you are struggling with worry or anxiety, that isn’t the way our bodies or brains are meant to function. Recognize when your thoughts keep repeating what-ifs. Remember the many times we are told not to fear in the Bible. Sissy Goff’s book had some great anxiety-reducing strategies, reach out to a friend, or one of the many pastors and counselors out there that can help as well. Be kind and give grace to others because so many struggle.

Forever thankful for these blessings.

Update on Oliver: July 1, 2020

I’ve hesitated whether or not to write a post with an update on Oliver since there isn’t really anything “new” to update and things can change so quickly, BUT I’ve also had pretty close friends and family ask what is going on with Oliver right now so I’m going to write a quick summary and update!

Oliver had his bone marrow transplant December 22, 2018 (about a year and a half ago). He has done really well since then, but in October, 2019 Oliver’s labs showed that his donor bone marrow cells were going away and his old cells were coming back. Almost always with JMML or a transplant, old cells coming back means the cancer is coming back…except that isn’t what has happened with Oliver. They tried to give him “boosts” of his transplant cells to try to save the transplant, but it didn’t work. At his last check, he only had 16% of transplant cells left.

Oliver wasn’t allowed to touch sand/dirt/ocean for a year after transplant. He LOVES getting to dig his toes in the sand now.

Somehow his old cells seem to be coming back with no sign of cancer. Our doctors have told us they know of 3 other cases where this has happened – the child had old cells take over the transplant and they didn’t have cancer come back. My mind can’t fathom how rare Oliver’s case is. His type of cancer already only occurs in 1 in 1 million kids…and then to have this happen is even more rare.

He is currently getting monthly lab draws and bone marrow biopsies every 3 months. When they do the bone marrow biopsies, they send the cells to UCSF in San Francisco, California for genetic analysis to check for any cancer mutations. Our doctors tell us the longer he goes without the cancer coming back, the more likely it is that it will not come back. So far his monthly labs have looked normal.

Waiting for monthly labs

Unfortunately, because Oliver had a transplant, he is at a much higher risk of other types of leukemia and other cancers down the road. He will need regular monitoring for his whole life. If Oliver did show any sign of relapse, he would immediately head in to a second transplant.

It is such a strange place to be in…Oliver seems just like a “normal kid” right now for the most part, but we always have this shadow hanging over our heads. He only takes 1 medicine to help protect him against viruses.

Oliver and Eliza have such a special relationship

Oliver did really well through all of transplant. I follow two other children who got bone marrow transplants at Seattle Children’s right around the same time as Oliver and BOTH kids had inpatient stays this past week from massive complications from transplant. I am fully, fully aware of the huge blessing it is to have Oliver home in Bellingham with us.

We just try to live each day praising God for the gift of Oliver and hoping for the best while knowing life on Earth is often broken and imperfect. Of course I worry about Oliver – are the bruises on his legs normal toddler bruises or something else? Is he napping longer than a normal toddler? Is he eating enough? Is he eating healthy enough? Most of the time I’m able to put these thoughts away and just be thankful for Oliver. We are SO incredibly thankful that Oliver is pain-free, nearly medicine-free, tube-free, and full of so much life.

One question we get asked every so often is if Oliver is immune-compromised. He is and he isn’t…the common cold shouldn’t be deadly to him anymore like it could have been right after transplant, BUT cells do weird things sometimes after transplant and we are never 100% sure if his immune system is totally functioning normally. We still try to be fairly careful with germs (and so many other people are now too with COVID!).

We are so thankful for everyone who has faithfully prayed for Oliver and our family! I wish I could express my gratitude in a better way but I don’t know what else to say other than thank you!

Oliver in March, 2019
Oliver in June, 2020!

Eliza’s Vision Therapy

Eliza has done 5 weeks of vision therapy so far! I had never heard of vision therapy until recently so I thought I would write about what I have learned and seen so far in case it might help someone else!

Eliza had perfect vision until age 2.5 when a tumor grew around her optic nerve, cutting off the blood supply to the nerves of her right eye. When nerves have their blood supply cut off, they die. Even though her tumor significantly shrunk with over a year of chemo, according to images of Eliza’s right optic nerve, she has about 16% of the nerve remaining “alive.”  This eye is so weak that if we did not do anything about it, her brain would start only using her left eye and completely “forget” her right eye. I have heard many stories of people that live with vision in only one eye that function totally normal day-to-day BUT if there is a chance we can improve Eliza’s vision, even a little, I am willing to try!

I asked Eliza’s ophthalmologist at Seattle Children’s about vision therapy and she did not really recommend it either way. She said “you can try patching her good eye for 2 hours a day and see if there is any improvement, but if you are just forcing her to play blind for 2 hours a day it is pretty pointless.” From my research, vision therapy has been scientifically proven to help with convergence insufficiency, but there have not been as many studies that have scientifically proven vision therapy’s help in other areas.

However, since Eliza has started vision therapy:

  • She is now able to tell me how many fingers I am holding up in front of her “dark” eye when her strong eye is patched and she WAS NOT able to do that 5 weeks ago.
  • She has gotten faster (better balance) at running around our kitchen table.
  • She also has started coloring inside the lines instead of scribbling.
  • She wrote her whole name out for the FIRST time ever a couple of days ago.
  • She has gotten more comfortable walking around the house with her patch on.
Coloring inside the lines for the first time!

This could just be Eliza getting older or more confident…or it could be vision therapy. It is hard to know if it is just the placebo effect that we are noticing these changes, or if it is really making a big difference. It REALLY seems to me that it is making a big difference.

When we met with Eliza’s vision therapist for the first time, she discussed that even if we are not able to improve Eliza’s vision, doing vision therapy will help her brain recognize where “center” is so that she will be able to improve her balance, coordination, and writing skills. This is exactly what seems to be happening. I do think her vision is also improving and she has gotten significantly more comfortable with being patched.

Balancing marbles on golf tees

Eliza has been going to the vision therapist once a week. It is similar to physical therapy or occupational therapy, but she just works on vision exercises. The downsides to vision therapy are that it is expensive (similar to a physical therapist) and not covered by our insurance. The exercises are a LOT of work too. Her vision therapy is one hour each week but we do her “eye exercises” at home for 30-45 minutes each day. This has to be done during a time when she is able to focus well. There is also a 30% chance that Eliza’s tumor could grow back which could potentially erase all progress we made with vision improvement. (I see this as a 70% chance of the tumor NOT growing back though!)

A lot of the activities for Eliza specifically include sorting shapes and colors with her strong eye patched. She also does balancing exercises (jumping on a trampoline while looking at a fixed point, walking heel to toe, etc) and hand-eye coordination exercises like alternating hands when tossing a ball.

Tossing a white balloon with red/green glasses

From what I understand, we will learn quite a few different exercises from vision therapy, then stop going every week as we continue to do the exercises at home. After a few months we will go in and re-evaluate where Eliza is at, see if we need different/new exercises or glasses, then continue the exercises at home.

I don’t think Eliza will ever have normal vision in her right eye, but I want to know that we did everything we could to try to have her vision be as strong as it can be! Vision therapy is a very non-invasive way to move in the right direction! I’m not an expert on vision therapy by any means, but I would love to try to answer any questions if you have any! Or correct me if I am wrong about anything! I will hopefully update again in the future once Eliza is further along in her vision therapy sessions!

Sensory bin patched!

The Time Someone Told Me I Could Cure Oliver’s Cancer with Celery Juice

When Eliza was born, I had such high ambitions for being the perfect mom. I read an article (probably some non-scientific article on Pinterest) about how if you introduce pureed vegetables to your baby before fruit that they will LOVE vegetables for their whole life. Eliza’s first vegetable try was a disaster and she spit it out over and over…I finally tried some applesauce and of course, she loved it. It turned out I couldn’t force her to love vegetables.

Two years later Seth and I took a parenting class and the topic of eating came up. Someone made the comment, “your kids should eat what you put on the table, and if they don’t, they don’t get anything else…a toddler will never actually starve themselves.” It turns out that was a completely wrong statement. Just over a year later I had a toddler that needed a feeding tube because he literally would have starved to death without one. Oliver went to several sessions of feeding therapy to re-learn how to chew and swallow. By God’s grace he no longer needs a feeding tube BUT he still is a pretty “picky” eater. His weight is monitored very closely. We do the best we can to give him a few different options of things to eat at each meal but there is absolutely no way we can force anything.

I just love watching Oliver eat now – it is such a miracle!

These situations just served to humble me and make me realize that no one can really be a perfect parent and hopefully helped me to become less judgmental towards other parents and their food choices.

BUT then our kids were diagnosed and I started hearing more people’s opinions – I started getting messages from either strangers or barely-acquaintances like this:

If you feed Oliver only celery, his cancer will go away without any chemo.” (I’m so serious someone ACTUALLY said that to me haha)

Sugar feeds cancer so if you don’t feed your kids sugar, their cancer will go away” (Translation in my head: you gave your kids cancer from feeding them sugar)

If you rub essential oils on Oliver, his blood cell counts will be normal…I can sell you some” (This one * probably * made me the most angry)

There must be something in the environment in your house that is causing your kids to get cancer.” (Translation in my head: you gave your kids cancer by not picking “healthy” enough products in your house)

These types of messages and comments were in the minority BUT they were still there. The worst one was probably someone telling me I was committing child abuse by allowing my kids to get chemotherapy. I see messages of fear all over social media, especially regarding using “clean” products. I have spent so much time thinking about these things and have a couple thoughts about them.

  1. First of all, as far as pediatric cancer, there have been NO STUDIES that show that food, environmental factors, etc. play a role in the development of pediatric cancer. The doctors have told us many times, “This is not fair, and this is not your fault.” Oliver’s NF1 gene did predispose him to getting leukemia, BUT even then it was not directly caused by his NF1 gene, it was an additional mutation that just happened.  I can guarantee you that my 9-month-old breastfed baby boy did NOT get cancer from eating too much sugar.
  2. There is SO MUCH fear-mongering in advertising, which I have especially seen in certain multilevel marketing companies.  I see posts with quasi-science quoted and passive-aggressive phrases like “I used to think I was doing the best thing for my family, but I wasn’t and you aren’t doing the best thing for your family, but if you buy xyz you will be.” Should we make healthy food choices, product choices, and lifestyle choices? Of course, of course! BUT should we let it define who we are and allow us to feel guilt? Nope, 100% not – there is a lot that is just plain out of your control. Feeding your child a completely organic diet is just plain not going to guarantee they will not get sick.
  3. I just finished a chapter in Risen Motherhood by Emily Jensen & Laura Wifler about food choices and they had a great quote: “We can’t heal our broken bodies by feeding our children more vegetables than fruit snacks (though we are tempted to try). Only Christ’s broken body on the cross can give us true redemption and freedom from our sin…Because of Christ’s work, we don’t find our identity in special food rules or diets. We still want to be wise stewards of our bodies, but we know we are not set apart or made more godly by avoiding certain foods, nor should we feel ashamed or embarrassed by what’s in our refrigerators.” They go on to say “Bodily training, and the food that fuels it, is of some value, but let’s not act like our salvation hangs in the balance over it.”
  4. Romans 14:1-4 says “As for the one who is weak in faith, welcome him, but not to quarrel over opinions. One person believes he may eat anything, while the weak person eats only vegetables. Let not the one who eats despise the one who abstains, and let not the one who abstains pass judgement on the one who eats, for God has welcomed him. Who are you to pass judgement on the servant of another? It is before his own master that he stands or falls. And he will be upheld, for the Lord is able to make him stand.”

I’m not anti-natural products. I make all my own bread to avoid the preservatives in bread. We limit high fructose corn syrup in our house. We were actually gifted some really great natural products to help take care of Eliza and Oliver. (One was skinsoother which works really well on Oliver’s skin!) I AM pro-healthcare though. I’m going to do what the leading oncologists, feeding therapists, and other healthcare providers in the country are telling me to do to take care of my kids.

Oliver & Eliza eating their PB&J sandwiches made with homemade bread, homemade jam, and all-natural peanut butter.

What I am trying to say is that food is not a salvation issue. We want to take care of the bodies that God has given us and teach our kids to be healthy and respectful of the food that is made for them, but it shouldn’t be giving us guilt and we shouldn’t be judging the choices that others are making because we might not know the whole story there either.

Eliza eating her sugar-filled birthday cupcake!

The other thing I’m trying to say is don’t try to profit off of parents of cancer kids by selling them stuff through Facebook messenger…that is just common human decency. 😉

It’s Not Supposed to Be This Way.

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.”

Lysa Terkeurst, It’s Not Supposed to Be This Way

Eliza’s Chemo is Done! Now What?

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!

Happy Birthday Oliver Jack

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!


*Top photo taken by Segar Photography

The Financial Side of Cancer

Every person’s story is different with paying for medical expenses, but no matter what, medical care is expensive and is never a fun thing to pay for. Finances are also awkward and often secretive, but a question I thought some people may wonder about, especially since so many people have generously helped us out. I feel like there is a lot I could add to this – and maybe I’m even sharing too much? I’m not sure, but I wanted to at least try sharing about it. By God’s grace we have been able (so far) to avoid medical debt, but it was a really close call. This is the story of how we could have been in a WAY worse financial situation due to the insurance (or lack of insurance) we were on right before the kids were diagnosed!


EOB from ONE of Eliza’s chemo visits

We moved back from Nebraska in 2016 and started looking at health insurance options. Health insurance isn’t cheap! Seth’s insurance was covered through his employer but to add me and Eliza it would be around $800 a month. We looked around for cheaper alternatives and found Medishare, a Christian health-sharing company that is not officially “insurance” but qualifies as insurance for tax purposes. We only had to pay $316 a month for Medishare! (There are several other companies like this including Liberty and Samaritan’s Purse, but I’m not as familiar with these.)

Medishare does not allow pre-existing conditions, only will pay for 6 months of new prescriptions, does not pay for preventive annual appointments (except for kids), and has a lot of other strict requirements. I thought we were a very low-risk family since we had no family history of significant medical problems so it seemed like a great choice for our family. Things were going fine with Medishare and they paid exactly what they said they were going to pay for Oliver’s birth and care after he was born.

Fast forward to April, 2017. Our pediatrician recommended that Eliza go to a couple sessions of physical therapy to help her learn to walk. I got prior authorization from Medishare saying they would cover 10 sessions of PT. Eliza went to 3 sessions of physical therapy before I got a bill saying they would pay nothing. I thought for sure it was a mistake, so I called Medishare and they said “oh, gross motor delay is a psychological problem, not a medical problem so actually we will not be paying.” I explained how we got a letter in the mail saying it would be approved, etc., etc., and over and over again they said, “We are not insurance, we are not going to pay, there is no way you can appeal it.”


Eliza will have 4 MRIs per year under anesthesia for the next 2 years.

I was SO frustrated with the whole situation. We ended up paying several hundred dollars cash for Eliza’s physical therapy but I started to get very nervous about what they would and would not cover, ESPECIALLY after getting a letter in the mail saying something would be covered when it was not.

When open enrollment started, Seth and I made the decision to switch our family all on to his work plan. This meant paying over $1,000 a month for insurance instead of just $350. What a HUGE blessing this turned out to be!

Eliza was diagnosed just 8 months later, and Oliver only weeks after that. Our medical bills skyrocketed. I attached a photo above of an explanation of benefits for ONE of Eliza’s chemo visits: $11,600. Eliza gets chemo every week for a year. She also had 6 ER visits this year for fevers. I’m still not entirely sure what Oliver’s whole transplant cost, but it is in the MILLIONS of dollars. This is a picture of a bill from Oliver’s first inpatient hospital stay.


If we had been on Medishare for the cancer diagnosis, I know I would have spent hours and hours on the phone fighting bills, fighting for pre-authorization, and fighting for things to be covered. It would have added more stress to an already incredibly stressful situation. I really think God used that denial of the physical therapy (which looking back seems like such a minor thing) to direct us to switch insurance.

We also had very kind friends who started a Gofundme for us once Oliver was diagnosed. This was a huge blessing and helped us pay our $7,000 deductible for our insurance which became due very quickly. It will also help us pay our deductible this coming January. We will most likely max out our insurance deductibles every year with the long-term follow up for our kids for the rest of them growing up. The Gofundme money also helped so much with gas for 100+ trips to Seattle, meals at the hospital, getting new carpet for Oliver’s bedroom that did not have pet dander in it, and helping adjust to me suddenly not working for 6 months. It also helped us pay for SPF 50 long-sleeve swimsuits, some over-the-counter medications, SCCA parking garage fees, and so many other treatment-related things. We are forever thankful and grateful for every single person that so generously supported us. Thankfully Seth was able to miss minimal work, but this is not the case for many families going through pediatric cancer treatment.


We also bought big quantities of Clorox wipes, hand sanitizer, and other cleaning supplies

I know people (including my parents!) that are still on Medishare and are very happy with it. I’m not trying to bash them, I know for some people it is great…I just 100% believe it was God’s grace that pushed us to switch. We are hoping and praying that they never change the rules about pre-existing conditions for our kids. Our healthcare system is so expensive and at times can be so complicated but we are SO incredibly thankful for Seattle Children’s Hospital and the extraordinary care they have provided for our children. They have been so kind and compassionate towards our family and have helped us out in so many ways. We have also been extremely blessed that we have not had to fight for medications or services to be covered by our insurance (so far).

I never thought our family would actually really truly need to rely on insurance, but I am forever thankful we have it!