Juniper – Retinoblastoma, and Prosthetic eye

ArtificialEye

Where do I even begin? Juniper had cancer. I have to say it in a matter of fact fashion like that to prevent the overwhelming emotions from bubbling up again or I’ll never get through this showcase story…

It was a Thursday. Juniper was having an awful time sleeping. She was up every hour. She was just wailing in pain & despite our best efforts, nothing was consoling her. Maybe gas? Maybe teething? Maybe those darn two year old molars were trying to peak through? It wouldn’t be until morning until we could get to the drug store for teething tablets to help her sleep. And she slept. She slept through the entire day actually. Normally I can’t shovel food in her beak fast enough – but today she fell asleep face first into her plate. Normally I can’t keep her active big sister quiet enough for her to nap despite being in another room on the other side of the apartment – but today she slept in the same room with her sister poking & proding at her. Normally I can barely keep up with her as she has two speed modes: run & run faster! But today she could barely crawl before giving up & falling back asleep. Maybe exhaustion from the night before? Maybe she was coming down with a stomach bug? I assumed she’d sleep it off & we’d be in for another loooong night that night. And we were. I just didn’t expect it would be in the ER.

Bed time came & Juniper still wouldn’t wake up. Mommy instincts kicked into overdrive & we rushed to the ER. “Lethargic baby” is what we were admitted with. I don’t remember much beyond being terrified Ember (her 4yo rowdy big sister) might of shoved her a little too hard & she was suffering from a concussion. I never thought it’d be the OTHER “C” word. The team sent her back for a CT scan. The wait for results seemed to take forever…

The nurse returned & asked if the doctor had been in to speak with us. He hadn’t & her expression went from concerned to “I-can’t-break-the-news”. She retrieved him & the conversation went something like:

“Well, the CT scan doesn’t show any indication of a concussion. But has anyone ever expressed any concerns about your daughters eyes?”

Her eyes? How can her eyes make her this drowsy?

“Your daughter has calcium deposits in the back of her eye”

“What does that mean?”

“Calcium deposits are a sign of retinoblastoma”

The doctor could probably tell by my expression that I was not putting two & two together.

“Retinoblastoma is a cancer of the eye”

Cancer. The big red flag. People die from cancer. I spent years watching our dear family friend we participate in Relay for Life for deteriorate & finally succumb to his cancer at the tender age of 14. We lost Grandpa Ouellette to brain cancer just two months before Juniper was born. People lose their hair & throw up a lot & have to practically live in a sanitize bubble! MY KID CANNOT HAVE CANCER!

One ambulance ride from the ER to Children’s Hospital in Seattle, two eye exams (one under sedatives which she still fought through & another under full anesetheia), three days in the cancer care ward, one MRI & numerous nurses & doctors & meeting with everyone from nutrionist to social workers… We had a diagnosis of unilateral retinoblastoma on July 12, 2013.

She was 8 days shy of turning two years old.

We were home for less than 48 hours before we had to return to Children’s for another overnight stay; this time for surgery. I remember being told that retinoblastoma cases range from A to E. A is the most hopeful. It would require some heavy chemo to kill the tumors & stop any spread – but her vision would be savable. Based on the eye exams, they weren’t hopeful for an “A” case. In fact, her eye had been crushed by glaucoma & there was no vision to be saved. An “E” case would be the hardest & she would lose her eye & tissue around the eye was most likely effected.

The good news was it didn’t look like the tumors had broken out beyond the eye. And her right eye didn’t show any sign of being infected at all. We were dealing with unilateral retinoblastoma, not bilateral which is the hereditary version & effects both eyes. Her cancer was literally a freak accident, luck of a bad draw & nothing could of been done to prevent it. The bad news was her case was a pretty bad “D” case.

“Leaving the eye would of put her at greater risk than taking it”, we were told.

Juniper lost her eye 2 days before her 2nd birthday.

AfterEnucleation

Retinoblastoma is pretty rare, despite Wikipedia telling me it’s the most common eye cancer in children. Only less than 3% of cancer diagnosis are retinoblastoma. Seattle Children’s Hospital saw 12 new cases last year. 12 in a year — when a classroom of children are diagnosed with cancer a day. Juniper’s case became even more complicated a week later. We received a call from the oncologist about her pathology diagnosis. Under the microscope, the tumors hadn’t spread — but they were covered in pus. They were infected, which is not normal. Aside from not being normal, it left a lot of variables & unknowns. Did the cancer spread elsewhere? We don’t know. On a micro level, it’s possible tumor-pus deposited elsewhere in the body & is waiting to fester into another tumor later. Or it might not of happened. They don’t now.

We are half way through our chemotherapy treatments now. Juniper will finish chemo a few days before Christmas & we’ll continue with follow ups through February to verify her blood counts return to normal. We’ll go in often for check ups that she is tumorless in her left eye & visit our ocularist often to have her prosthetic maintained while she grows. And even when we get the green light that she officially has made “Survivor” status… we’ll visit regularly to volunteer & donate to the amazing departments who have helped us through this & to help other families cope with their own diagnosis. We plan on continuing our support of Everett Relay for Life Team Remembering KK, while also supporting Alex’s Lemonade Stand & pushing for more research into specialized treatment for cancers that effect kids. Out of all the funding the government grants, only 4% is dedicated to childhood cancer. Of the drugs Juniper endures, the newest was FDA-approved in 1989 (most being as old as the 1960s!). In a world where our smart phones are out of date a week after we bought them, this isn’t right we are still using adult hand-me-down treatments rather than more effective, less toxic treatment for smaller bodies.

Chemo EyePowerShirt

Chemo

“I’m a lover, not a fighter”… Juniper is both. She loves those who have joined in her fight — & continues to fight for those she loves. It has been through the wonderful support of others that she & the rest of our family have been able to overcome this devastating change & try to proceed with life as normal.

If you’d like to stay updated on her progress, I post regular updates on Juniper’s Journey on Facebook along with tidbits on childhood cancer, how we’re giving back & lots of great photos.

WithBigSisterEmber

 

JuniperByCaySPhotography

Here is Juniper with her new eye!

NewEYE

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