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!
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!
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.
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.
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 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!
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.
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.
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.
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.”
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!
I’ve written in other posts about NF1 and Eliza’s optic glioma, but I wanted to write a post explaining how we discovered Eliza had an optic glioma (along with NF1), what her treatment options were, and what her long-term prognosis looks like as far as we have understood what we have been told by our care team. Maybe this will be helpful or encouraging for another NF1/optic glioma family! I know when Eliza was diagnosed I was googling like crazy other optic glioma stories!
Eliza was born completely healthy via C-section due to being
breech in December, 2015. She was a healthy baby that slept and ate great! We
moved from Nebraska to Washington when she was 7 months old. Her new
pediatrician noticed a couple café au lait spots and mentioned that she should
be tested for NF1. She also thought Eliza was delayed in her gross motor skills
and a few other things. I really dragged my feet and I even changed
pediatricians because I thought she was really going overboard with all the
referrals she gave us to go all the way to Seattle when she seemed completely
fine to me.
Our next pediatrician also mentioned seeing a pediatric
neurologist to check for NF1 and recommended that Eliza do a little bit of
physical therapy to help her learn to walk since she was not walking or
standing by 12 months old. Eliza finally learned to walk around 20 months.
Physical therapy did help quite a bit with her strength!
We spent a whole day driving to Seattle to see a pediatric
neurologist with Eliza to check for NF1 and the results were…100% inconclusive.
I was really frustrated at this point because I thought there was NO WAY Eliza
had NF1 after googling it, especially since I had the same café au lait spots
that she did and I didn’t have NF1 (spoiler alert: I do). She recommended
seeing a pediatric ophthalmologist to check for any eye symptoms and coming
back in 6 months for another evaluation.
I drug my feet even more but we finally saw the pediatric ophthalmologist
in Bellingham. They were trying to get Eliza to read an eye chart in a MIRROR
at age 2 which was almost comical. The whole appointment seemed like a waste of
time. That doctor did recommend that we go back to Seattle Children’s to see
another pediatric ophthalmologist since one of Eliza’s eye nerves looked
slightly elevated, but she also said this was normal in a lot of cases.
By this point I felt like I was just going from appointment
to appointment, referral to referral for no reason – paying $200+ for each
specialist visit with no one giving concrete info. Again, Eliza seemed
COMPLETELY normal to me. Fast forward 3 months and we were back in that
pediatric ophthalmologist’s chair being sent to Seattle Children’s ER. Turns
out the doctors were right and I was wrong.
Once Eliza’s optic glioma was diagnosed with an MRI under
general anesthesia we met with the pediatric ophthalmologists. They confirmed
NF1 and referred us to the brain tumor team at Seattle Children’s. Our doctor
said when optic gliomas are discovered, they usually just monitor them with
MRIs first before jumping right in to chemo. Because Eliza’s eye bulged out so
fast they decided to treat it with chemo right away to avoid further vision
damage. The doctor assured us this was a BENIGN tumor (meaning it would not
spread to other areas of her body) but it was growing so it could cause damage
in the area that it was growing.
The “gold standard” in treating optic gliomas caused by NF1
that has been used for years and years is a combination of Carboplatin and
Vincristine. I’ve seen on other NF1 pages that this isn’t always the first
course of treatment across the country, but that is what our providers chose.
Eliza had a port placed under general anesthesia – once her port was in we
would need to take her to the ER any time she had a fever for as long as the
port was in to rule out central line infection.
In the big scheme of the cancer world and chemo,
Carboplatin/Vincristine seems relatively mild. The major side effects that the
doctor discussed were hair loss, appetite loss and nausea, constipation, and
neuropathy (nerve pain). We did foot stretches every night to help with any
neuropathy but Eliza never really seemed to complain about nerve pain. She did
lose most of her hair, but was never completely bald. She did lose her appetite
and had to take nausea medication pretty often. She almost needed to have an NG
(feeding) tube placed in her nose but she just barely skated by without one.
There are very few long-term side effects of this chemo.
Eliza started Carboplatin/Vincristine on September 7, 2018.
She started with “induction” chemo where she got infusions over 1.5 hours every
week for 10 weeks then started 5 weeks on/2 weeks off cycles. These cycles are
numbered officially by days, not weeks. This was supposed to last for about a
year but in December her eye swelled up way worse than it had been before even
though her MRIs showed the tumor was shrinking. Her doctor switched her to 8
weeks of Avastin since they thought her eye bulging out was a result of
inflammation around the tumor area. She got Avastin infused every other week
for 8 weeks. The Avastin worked wonderfully and her eye swelling went down to
look almost normal again. It was also around this time that the ophthalmologist
said Eliza was most likely permanently blind in her right eye.
After her 2 months of Avastin, Eliza went back on her Carboplatin/Vincristine cycles. It was around this time that the rest of her long hair fell out. Unfortunately, in May she developed an allergic reaction to the Carboplatin and broke out in hives all over during her infusion. They had warned us this could happen so their plan was to premedicate her with Benadryl and steroids and run the infusion over 3 hours instead of 1.5 hours. She was able to handle this for a few weeks until she had another hives reaction despite the Benadryl and steroid premedication. If they would have kept giving her Carboplatin every week her body would continue to react more and more and eventually she would have trouble breathing so they decided to stop Carboplatin/Vincristine and switch to Vinblastine, a cousin drug that studies have shown works equally as well. She now gets Vinblastine once a week through her port IV access and it only takes about 5 minutes to administer the medicine. Vinblastine seems to have less side effects than the Carboplatin/Vincristine did for Eliza. The one side effect we did see is that the new chemo affects her white blood cell count quite a bit more so her immune system is quite a bit more compromised with her new chemo than the old one.
Eliza will finish her Vinblastine treatment in October. She
will continue to have MRIs every 3 months for two years. After 2 years she will
have MRIs every 6 months for another year. Next, she will have yearly MRIs for
2 years. If everything is stable at that point they will only do an MRI if some
symptom shows up, otherwise she will be done with MRIs!
As far as I understand, once chemo is done for Eliza, there
is a 33% chance her tumor(s) will start growing again and a 67% chance they
will stay the same/shrink on their own. Hopefully she will never need treatment
for the optic gliomas again, but if she does they will start a newer drug
called a MEK inhibitor which is just a pill. These drugs seem promising but
just have not been around for as long as the IV chemo treatments so the long-term
effects of them have not been studied quite as long.
Eliza does not seem to notice being blind in one eye. She
once even asked me which eye was my “light eye” and which eye was my “dark eye”
since she has a “light eye” and a “dark eye.”
She will continue to be seen by her NF1 doctor every year to
monitor for any other NF1 related things that could come up. She sees the ophthalmologist
every 3 months right now and that will also space out to every 6 months and
then to every year along with her MRIs. Worst case scenario, Eliza could go
blind if her tumors grow, but the doctors are extremely optimistic that her
vision will stay where it is at.
There are a lot of unknowns with NF1, but they really don’t
worry me too much…maybe they should more, but the fact that I have NF1 and have
had no issues makes me optimistic that Eliza can have a full, healthy, normal
life! Eliza has adapted to having chemo and going to the doctor incredibly! She
was so scared and would scream the first few times she had her port accessed,
but now she hops in the chair like a champ! She is a beautiful, funny, happy
little girl and I just love her so much!