Meet Mya & Julie
“When a child gets cancer it affects the whole family.”
Tell us about you and your family
We are a family of 4. 😊 My husband and I met in 2009 and married in 2011. My husband works at OSU as a painter.
I work as a respiratory therapist at Albany General hospital. I have been in health care for over 15 years.
We have 2 daughters, Emma, who is 7 years old and Mya, who is 20 months.
We have 2 dogs and 1 cat. 😊
What illness was your child diagnosed with?
Mya has brain cancer of an unknown “type” meaning her cancer is so rare it hasn’t been classified or named. Mya was diagnosed at 4 months after becoming unresponsive at daycare.
“He just looked at me and said, ‘we will know more after we find out what kind of cancer this is.’”
What did you feel and experience learning the diagnosis?
Devastated and in total shock. It took me a few days to even get thoughts together. I stayed with Mya as much as they would let me I didn’t leave the Pediatric Intensive Care Unit (PICU) until they took her away for her brain surgery which was 48 hours after we were life flighted to the hospital. She was in surgery for 10 hours. I remember just not being able to sit still. I kept pacing and worrying. I hated not being able to see her. I am still that way every time they take her for an MRI or other testing where I can’t be present.
We didn’t learn all about Mya’s diagnosis right away. When we were first in the ER they told us she had a brain bleed and that we were going to be life flighted to Portland. Mya was placed on life support and then we were transferred to OHSU-Doernbecher. After we arrived to Portland they took Mya to MRI and then to PICU. Shortly after Mya arrived to the PICU, the Neurosurgeon told us that Mya had a 4 cm tumor on the back of her brain and that is was growing toward her brain stem. I don’t remember much after that I do remember him saying that even with surgery they weren’t going to be able to get all of the tumor and that she would need chemo and possibly radiation. I remember asking if she was going to live. He just looked at me and said, “we will know more after we find out what kind of cancer this is.”
Unfortunately, for us, we never got an answer on what kind of cancer Mya has. Three weeks after being sent home from the hospital, they hadn’t gotten anything back on any of the pathology reports. The two things they could tell us were it’s HIGH grade (aggressive) and malignant (cancer).
What surprised you along the journey?
I was surprised at how many small children got cancer (<2 yrs). While Mya was being treated inpatient there were 4-5 other babies going through treatment at the same time.
There is very little support for cancer families with babies in the hospital. There were only a few “glider” chairs for us moms who had to rock their babies. We had to purchase a walker and bouncer to use while Mya was inpatient just to have a place for her to play.
“You watch (via Facebook) your friends and family move on with life and live “normally” while you’re stuck in a little room watching your child fight for their life. ”
Mya and her big sister, Emma.
What did you struggle with along the journey?
My biggest struggle was being away from Emma. I had to rely on my best friend to care for her and that was very hard for me. Whenever someone would ask about Emma I would start crying. I missed her so much and I hated that I couldn’t care for both my children. Emma would come see me on the weekends if Mya’s [white blood cell] counts weren’t super low but it wasn’t enough.
I struggled with sleep, anxiety and loneliness. You watch (VIA Facebook) your friends and family move on with life and live “normally” while you’re stuck in a little room watching your child fight for their life.
What did you become an "unexpected expert" in along the way?
Recognizing that Mya was getting sick before her “vitals” showed it.
Learning the workflow of the hospital and who you needed to speak to about what.
You learn about the meds they are giving and the awful side effects.
What might people not understand about your experience?
People want to understand, or might think they do, but they don’t. Unfortunately, unless you have watched your child go through this you will never quite understand what it’s like.
What you learned & how you found comfort
What or who brought you comfort in your journey?
The other parents on our unit where a huge comfort, We would all walk around the unit together with our babies talking about the night or how treatment was going. Just helping each other with what we learned that works for our kiddos.
Things like:
How to give baths with a central line. Press and seal works great for covering the central line while giving a bath.
What creams work well for the blistering diaper rash caused by the chemotherapy.
Which baby carriers/wraps worked for walking around the unit with an IV pool with has several IV lines.
“Mya always wanted to be held, I had to keep her in a carrier a lot of the time just because my arms would get so tired.”
What or who brought your child comfort in their journey?
Mya was so little when we started treatment, she only wanted me. She would smile at anyone who would smile at her. She liked to be out of our room so she could look around. Mya always wanted to be held, I had to keep her in a carrier a lot of the time just because my arms would get so tired.
What support did you need that you struggled to find?
Good healthy food was a struggle. The hospital’s food wasn’t great and had limited options for someone who had food allergies. They would only supply a food tray if you were a breastfeeding mom (which I wasn’t).
How did the process allow you to see your child as a unique individual? What did you learn?
Mya’s is very unique. She never needed a feeding tube during her whole treatment. She was so strong and happy even when she was super sick. When I was struggling all she would have to do was smile or giggle at me and it was all better. Mya lights up a room and she has a way to let you know that everything is going to be OK. She is now 20 months old and still amazes me every day.
What feeling was important to you to evoke in the hospital room?
We tried to keep Mya’s room comfortable and friendly. I would decorate her room with pictures that Emma would draw and photos of the girls. I would decorate her door and window with decorations. We tried to keep things light and friendly. It’s very easy to get negative.
What small gestures brought comfort that were unexpected?
People just stopping and saying hi. Waving as they walked by. RN’s remembering Mya’s likes and dislikes.
“Mya took comfort at being close to me”
How did an infant carrier help with your hospital life?
Mya’s carrier was a huge help to me. I used it walking the halls but I also used it to free up my hands so I could do other things. If I need to clean up the room, eat lunch or just have my hands free. Mya took comfort at being close to me. The carrier also was used by my husband and Mya’s grandfather. It was large enough to fit them both comfortably.
What is your call to action for our readers?
I think knowledge is power. I think bring attention to the fact that babies are getting cancer, too. Babies are dying from cancer. I didn’t know babies got brain cancer. We need better support for families who have other children to care for. When a child gets cancer if effects the whole family.
“We need better support for families who have other children to care for.”
