William had his first MRI August 9, 2024 at 10 months old. We asked for an MRI to confirm the diagnosis of “congenital nystagmus”. He had eye “shaking” since he was 4 months old.
The radiology report stated, “significant dilation of optic nerve C7 tortuosity of optic nerves”. The differential diagnosis includes optic nerve sheath glioma, lymphoproliferative disorder, such as lymphoma or leukemia versus sarcoid or demyelinating disorder.
August 21st we met with Children’s Wisconsin Hospital in Milwaukee. They showed us his MRI, explained his tumors and how there’s no possibility of a biopsy due to the risks. They said we “watch and wait” which consists of every 3 month follow up MRIs and eye exams.
Knowing we can’t help fix our son’s vision or the cancerous tumors in his brain I did as much research as I possibly could. Knowing this is going to be a life long battle for him not just with cancer in his brain but his eye sight decreasing every day he grows.
“[Our Navigator] was the most informative person in our whole process of learning our son’s diagnosis and what changes in life we could expect to be happening for us.”
Felicia, parent
As I was researching, I came across the Brain Tumor Network in September. On the 23rd we came in contact with our Navigator. We were able to have a phone call to go over what we ourselves know about this cancer and the course it takes. Our Navigator was the most informative person in our whole progress in learning our sons diagnosis and what change of life was going to be happening for us.
As a mother and knowing we can’t do that magical kiss, put a bandaid on it and say it’s all better is the hardest. Having the “life long battle” of this for our 1-year-old was the most devastating. Financials is all I thought about for the future for William. I’m worried about when the time comes that we’re not able to be here fighting with him that he’s going to be working his butt off just to live. I want him to be able to have a job so he enjoys his beautiful life and not have to worry about the constant bills. Our Navigator had sent a huge long list of financial resources that we we’re able to reach out for help with our travel costs and bills!
Our Navigator even was a part of one of our appointments with William’s oncologist! I had typed up many many questions and concerns. Our Navigator had me call her and she sat on the phone, forever, during this appointment. I had asked so many questions! At the end of it all, she typed up every answer William’s oncologist gave us. I never knew how much detail we actually missed hearing. Having these questions and answers right in front of us meant so very much!
“As a mother and knowing we can’t do that magical kiss, put a band aid on it and say ‘it’s all better’ is the hardest“
Felicia, parent
In November, William’s Ophthalmologist (eye specialist) saw an increase in atrophy on his eye nerves (increase in dying nerves). He told us we needed to start treatment right away to help preserve what eye sight he has left. William’s Oncologist called and went over treatment options later that week. We were so terrified not knowing which course of treatment to take. We had reached back out to our Navigator to let her know the options we were given. Of course she sent as much information she could on the options we were given along with what her personal experiences were that she has heard/seen of. She kept reassuring us that any symptoms he would have William’s team will be able to help and there’s many different solutions to all the side effects. With that information we were able to make a decision and William started targeted therapy MEK Inhibitor Mekinist December 7th.
William’s 3-month scan showed significant growth with all tumors causing fluid and pressure build up. He had emergency shunt placement in the middle and right side of his brain that drains down his neck into his stomach which is permanent. His updated diagnosis is “bilateral optic pathway gliomas and gliomas of the Hypothalamus and Thalamus”.
March 8th William experienced left hand/foot/leg weakness. We were told to go to the ER, where he was admitted. His next MRI showed all tumors growing more then the scan on the 28th- in 1 week’s time!! The tumors on the right and middle side of his brain are so big that they are pushing into the left side of his brain. His Oncologist came in and went over the change in treatment plan. William had surgery to put a port in his chest.
March 11th William got his first chemotherapy IV infusion of Carboplatin and Vincristine. Treatment plan is once-a-week infusions in Milwaukee, which is 2.5 hours away from home for 2 years. We really wanted a second opinion from a different Neurosurgeon. When I reached out to my BTN Navigator with this, she didn’t hesitate and got all of William’s medical records sent over to him. We are beyond grateful for her helping us get this done!
William is only at the beginning of his 2 year treatment. This is the beginning to a long bumpy, curved road that can lead in many different directions. Without our Navigator and the Brain Tumor Network I don’t know where we would be. She will check in just to make sure we’re hanging in there, asks how William is doing with his treatments, and how his MRI scans went! She will somehow bring a calm into her emails when she knows there is stress, anxiousness, and worry.
There’s so much uncertainty of knowing if we’re doing the right thing, but having our BTN Navigator as an ace up our sleeve, we feel more at peace with what information she gives us! Our Navigator is a God sent angel who shows so much comfort and empathy! We cannot thank her enough for all of her help and emotional support during these life changing moments! I will always reach out to her for her input, help, or just to even vent. She will always reply with whole heartedness!
Thank you to our Navigator and the Brain Tumor Network for having such a supportive system for us!
We love you!
Team William the Little Warrior