Meet Juniper. Also known as Juni, “JuneBug” or even “Love Bug.” A sweet two year old who, in this past year, has been given a diagnosis of Retinoblastoma (cancer of the eye), went through surgical remove of her eye, and is currently undergoing Chemotherapy.
|Photo Courtesy of CayS Photography|
We met Danielle (Juniper’s mother) back in August, as she was the winner of our contest sponsored by Coco & Gigi’s Boutique. We didn’t have any idea of what this family was currently dealing with, but how happy Ambria and I were to find out that a very deserving family was about to receive a little bit of pixie dust! Throughout this article you’ll see a few pictures of Juniper, and her sister Emberlynn, modeling their prizes won from Ambria of Coco & Gigi’s Boutique.
|Last Photo ever taken of Juniper
while she still had both eyes.
How was Juniper’s retinoblastoma discovered? What were her symptoms?
Retinoblastoma isn’t the easiest cancer to diagnosis. You really have to know what you’re looking for or as a doctor, be highly trained to even be able to diagnosis it. Most children are diagnosed between 18months & age 5, when dilating pupils during eye exams isn’t common. Months of well child checks, Juni’s regular pediatrician wasn’t even able to pick it up. For most of her life, Juniper had a “lazy-eye.” While this is common with retinoblastoma cases, it’s also fairly common in young children period as their eye muscles are still strengthening up. The diagnosis came when she was having a horrible time falling and staying asleep one Thursday night a few weeks before her 2nd birthday. We assumed she was having teething pains. After a very long night, she spent the entire next day sleeping. We assumed she was just exhausted from the previous night’s fight. She slept through meals. She slept through her regular nap time. She slept through TV shows or her big sister running through the house which is fairly uncommon for our normal light-sleeper. When bed time rolled around and she still refused to wake, Mommy instinct kicked in and I knew something was wrong.
We took her to the emergency room where they did a CT scan. While we waited, the doctor asked, “How long has her eye been swollen?” In our haste to get out the door and in sheer worry what news we’d get, we hadn’t even noticed the muscles around her eye were swelling. Only about 3% of retinoblastoma cases involve swelling. We were reassured it wasn’t a concussion — but there were calcium deposits on the back of her eye.
I’m sure the look on my face gave it away to the on duty doctor that I had no idea what that meant. “Calcium deposits on the eye is an indicator of retinoblastoma” — Again, that look on my face could probably tell him I wasn’t putting two & two together. “Retinoblastoma is a cancer of the eye.” He was very cold, very matter-of-the-fact about it. I’m sure it was just his own defense mechanism kicking in. If doctors didn’t stick to the science and the facts, their own emotions would come out and strike even more panic in the patient (or in this case, parent of the patient).
Our Ophthalmologist (eye surgeon) informed of us “the glow.” “The glow” is often one of the first signs a parent will get of retinoblastoma and unfortunately, won’t have any idea what it is — or might overlook it if they didn’t know they were looking for it to begin with. We are very accustomed to “red-eye” in humans & “white-eye” in pet photography. But when you see a white glow on a human (particularly a younger one), you need to get it checked. After this news, I looked back at every photo of Juniper since birth, zoomed in as far as I could get it. There was evidence of “the glow” in a few photos, some dating back as far as late 2012. But it’s not common knowledge. Had I even noticed without looking, I wouldn’t of known what it meant. Now that I do… I want other parents to know.
|Notice the white glow in Juni’s right eye (her right eye) similar to
red-eye… this is actually a top warning sign of retinoblastoma.
What were the next steps following diagnosis?
Juniper after surgery with her Minnie Mouse
given to her by Jarrod’s Joy Cart.
We waited a week before we would hear back from her oncologist (cancer doctor). Retinoblastoma only accounts for about 2.6% of the childhood cancer patient population. Juniper’s case involved the facial swelling which only appears as a symptom in about 3% of cases. Juniper’s cancer had become even more odd & unique after the pathologist were able to look at the cells under a microscope. While we received the good news Juniper’s tumors had not broken through the eye casing, risking the other eye to cancer — the tumors were covered in pus. The cancer tumors were infected. This left a lot of unknowns. On the molecular level, it’s quite possible cancer cells could of been picked up with pus and spread somewhere else in the body. Or they may not have. They didn’t know. And there was no way of knowing. Our options were: wait and see if later in life she develops a secondary cancer — or start chemo immediately to prevent any cells that could of escape from incubating to be discovered later.
She went into surgery again to have a port-a-cath inserted under her skin where her chemo drugs would be administered as well as weekly blood draws performed.
As of her chemo treatments on September 26th & 27th, we are half way done!!
Juniper under goes two days of chemotherapy every 28 days. She gets three drugs along with two anti-nausea medicines through her port. The chemo infusion takes three hours total, not including the hour of nausea drug administration. Her second day is a 90 minute treatment that involves the anti-nausea drugs again as well as one chemo drug. Weekly, she goes to Children’s Hospital for a blood draw to check her blood cell counts. Depending what those numbers tell us if she can do kid things: go to the park or library toddler story time — or if we have to stay home watching Mickey Mouse Clubhouse and quietly coloring. Ever tried to get a 2 year old to not jump, not run, not wrestle her big sister? On low-blood count weeks, Juniper is susceptible to bruising easily as well as nose bleeds, concussions & infections.
Our last chemotherapy treatment will be December 20th. Our low blood count weeks are forecasted for the week of Halloween… the week of Thanksgiving… and the week of Christmas/New Years Eve. Following our last treatment, we will still go into our weekly blood draws for another two months to make sure her numbers do come back up to a normal level. After that, we will be visiting Children’s one a month for blood draws and overall check ups. Additionally, every 3 months we’ll be back to see our eye surgeon to be put under sedation and have a dilated eye exam to verify the cancer still has not claimed the good eye. On top of that, we are now working with Erickson Labs for Juniper’s prosthetic eye. We’ll be visiting them bi-annually for fitting & cleaning purposes after our first initial month of visits to have it painted, clear-coated and more fitting purposes.
While chemo saves lives, it also affects quality of life. Chemotherapy can and does put recipients at risk of a secondary cancer later in life. It can and does affect growth in children as well as causing cognitive learning disadvantages. Of course, there is the fact Juniper will always be without the vision of two eyes. My husband’s biggest concern is she won’t be able to see 3D movies. (He is such a geek). While I concern over things more pertaining to normal everyday life: learning to drive, dating, the tortures of middle school social awkwardness.
Juniper’s nickname is “JuneBug,” but often times I refer to her as my “Love Bug” (no Herby reference ;)) because she really is such a lover. If you need a friend, Juniper will be your friend. She has been caught on more than one occasion hugging a complete stranger at the grocery store! She’ll hold hands with kids at the park she has never met or say “hi” to everyone walking down the halls of the hospital. It’s been through this love and light that she has been so strong through her fight, as well as spread hope amongst her family and friends.
She knows she is different now. She refers to her missing eye as her “owie eye” and she’ll rub her bald head constantly and tell people she got her “hair cut.” But she is still Juniper. Her energy and her smile is still contagious. She still is the best hugger I’ve ever known and is generous to deal them out on whim. And more than anything, we are excited to share with the world her love and her strength.
|Juniper modeling her necklace and headband,
compliments of Coco & Gigi’s Boutique.
Photo by: CayS Photography.
As parents, how difficult has this been?
We’ve been told “cancer treatment is like a marathon.” I couldn’t agree more. We are half-way through treatment now and it certainly feels like I’m at mile 13 out of the 26 I need to get through. I often think of marathoners while we’re sitting infusion treatment wondering, “How do they do it? How can they know they’ve come so far — yet still have so far to go?” Well, luckily for runners they train. They train long & hard and know what they’re getting themselves into. Most cancer parents don’t. Some may have seen family or friends go through treatment; but for most this is their first experience with cancer and to have it be someone so small and with so much life still left to live…. it makes that last stretch of treatment all that much harder.
What gets me through is knowing she is in the best hands with our oncology team at Children’s Hospital. Seeing so many other kids, some younger, some older who are having to go through such worse treatments more often… It really puts things in perspective. At first, I spent a large chunk of my time mourning the possibilities & the “what ifs”. Now, I think how I can help other parents & other kids. Once my time isn’t consumed by our own fight, I plan on volunteer as a parent-to-parent mentor to help other parents in their coping. This year, we’ve already started collecting toys to donate to the kids who will be in the hospital still & the siblings who are also majorly effective yet not always given as much attention as the little hero. I’m working with a group of friends to provide needed pantry items for Ronald McDonald House which houses families whom have children staying at Children’s Hospital for longer stretches of time and I’ll be continuing my support of Team Remembering KK, a Relay for Life team I started in 2011 after losing our dear friend Kelton Little to cancer at the age of 14.
I think more difficult than Juniper’s diagnosis in general is how upsetting it is to see the lack of support for childhood cancers. Year after year, science researchers are given tons of money from the government, from private agencies, from the pharmaceutical industry & often times while any research into cancer is good research, it’s directed towards adult-cancers. Two out of three of Juniper’s chemo drugs were approved in the 1960’s while the newest one being approved in 1989. No money is to be made in childhood cancer research, so money that is funneled there is often through private donations. There is a meme going around the internet right now, “Why is it in October EVERYTHING is pink but in September there is hardly any gold for childhood cancer awareness?” While snarky, it rings with truth. When time and funds permit, I’d love to push more of my efforts to raising awareness, putting pressure on the authority figures to pursue cancer treatments geared towards the tiny bodies of children rather than giving them adult-treatment-hand-me-downs & of course, supporting research.
While it hurts to see my daughter going through this, you find strength when you have to & try to find the silver lining. My silver lining going into this was, “She’ll be the cutest Mike Wazowski for Halloween” and now that our journey is half over it’s “Cancer took your eye, but it won’t take our spirit. Cancer pushed us and we’re going to push back.”
Funny story actually… While in the hospital after her eye enucleation (removal), Jarrod’s Joy Cart came through the wing of the hospital we were staying in. Jarrod’s Joy Cart was started to offer toys to children in the hospital after Jarrod was at Children’s. While still semi-under anesthesia, the Joy Cart stopped at our room and explained who they are and what they do. I told them how thankful I was for organizations like theirs and the volunteers to commit themselves to these kids. The cart attendant said, “I don’t really have anything tremendously exciting left. How old if she? She’s 2? Oh.. Hmm… This one seems a little babyish for her age. Play doh might get messy…” — Juniper sat up, hearing the commotion pointed and said “Mi-ee Mow.” This is Juniper-speak for Minnie Mouse, by the way. On the back of the cart, hardly visible from the hospital bed was a plush Minnie & Mickey Mouse. That Minnie Mouse has now been her best friend through most of her treatments & during much needed nap time.
She is growing increasingly impatient having to sit for three hour stints of time for chemo & Mickey Mouse Clubhouse has been our salvation in getting her to sit still so she doesn’t accidentally rip the IV out of her port. She also loves the Cars guys, “Rella” (Cinderella) is her favorite princess & what kid can resist finding the “Nemo” in the fish tanks that all doctor’s hospitals have felt so inclined to add to their aquariums. Her birthday party this year was themed Monster University & her & her sister will be dressing like Mike & Sully next Halloween which we’ll hopefully be spending at Mickey’s Not So Scary Halloween party.
|Emberlynn & Juniper modeling their
prizes from Coco & Gigi’s Boutique.
Photo by: CayS Photography.
What’s the best way to receive support in times like this?
People often ask me “is there anything I can do?” For a cancer parent, some of us are modest and will say “Oh no. But thank-you.” Others might offer a few suggestions. Most of the time, these offers come when the diagnosis first comes but things dwindle off the further into treatment you go. Unfortunately, parents still need that support & those offers. Parents of cancer patients are susceptible to post-traumatic stress disorder, depression, anxiety and obviously all the ailments that take over any immune system when we don’t eat, don’t sleep & are in a constant state of stress. Being a cancer patient is also very alienating. Someone asked me recently, “Do you meet other parents at the hospital?” Sometimes, but for the most part it’s just a one-time encounter. While some parent support groups are offered, often times there’s conflicting schedules. This weekend alone we are missing out on two birthday parties because Juniper is experiencing her low-blood-count week and isn’t able to attend events because her immune system isn’t up to par. Try to understand this if your friend has to decline going out or having you over. Technology is a GREAT thing. A simple phone call or a well though out email do wonders for a parent to not feel so alone. Home cooked meals are a God send & if other siblings are involved, taking them for a couple hours so Mom can sleep or take a shower will do wonders for the spirit.
Update: April 16, 2014… now that it’s been 6 months, check out Juniper’s good news!!