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.

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.

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.

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!

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.

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.

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.

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. 😉

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!

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