We last spoke in October, when Juniper was about half-way through her treatments. Can you recap what’s occurred over the last 6 months?
We finished up chemotherapy in December just in time for Christmas. We had a lot of celebrate! In January, we had her last eye exam under anesthesia (EUA) as well as a last hearing test as one of the chemo drugs she was on can cause damage in that department. She passed both with flying colors. Her port-a-cath was removed in January & our car broke down on the freeway on the way! It was definitely a day of ups & downs for us. We also received results of her blood work to look for chromosomal deletions which would tell us the likelihood of reoccurrence & if there is a hereditary link she would pass on to her children in the future. We couldn’t be more thrilled to of received the news there is absolutely no deletions and no hereditary links. Juniper’s chance of reoccurrence in her remaining eye is less than 1% & those are the same odds of her children having retinoblastoma “passed” on to them. We just had our 3-month follow up & her vision eye is still clear of tumors & the socket of her prosthetic eye is healed completely & settled in. She is CANCER-FREE & THRIVING!!
|Photo by CayS Photography.|
You compared Juniper’s Journey to running a marathon. What was it like to cross that finish line knowing it was a successful “race”? Does Juniper understand that it’s ‘over’? How excited is she?
Now that the hereditary tests are back & we know she is not at much risk of reoccurrence, our eye-exams under anesthesia will move to every 4-months until mid-2015, then every 6-months until mid-2016 & then we will have one more in 2017 before we are deemed truly DONE with this cancer journey & she will be considered a survivor.
She will continue to visit her ocularist for work on her prosthetic every 6-months as well as a good cleaning to remove built up protein deposits.
She won’t go through any vision therapy. She does have a little bit of balancing issues & gets dizzier easier. Her Big Sister (& obviously other kids she meets out in public) don’t fully grasp she does not have vision in her prosthetic eye & so it’s often a struggle when all those little bodies are running & romping & having a good time — but Juniper gets knocked over because someone came at her from her “blind side’ (particularly her rough & tumble big sister). So, as she grows older, we will continue to work with her on turning her head to expand her view. But right now at her age, she is easily distracted & there’s always something new & interesting to see… So it’ll be a process as she continues to grow & learn how to maintain herself out in the world & interacting with others. This is definitely something we will have to address as she begins learning to read & write as her right eye isn’t there – & she is right handed. Driving when she hits that magical age of 16 will also have to be handled more carefully. We will have to make sure her car of choice has as few blind spots as possible, includes fish eye mirrors on her side-view mirrors & a wider rear-view mirror. And definitely working on protecting her vision eye! She isn’t too peachy keen on keeping her glasses on currently, but we hope it’ll become easier in the future when she realizes sand, dirt, dust particles can all bug her vision eye leaving her – literally – in the dark. We’ve also been discussing sports as her Big Sister prepares to start soccer this fall. While we would never stop her from doing what she feels confident in doing, I really hope she’ll choose something like swimming, tennis or track; an individual sport that doesn’t require too much potential of collisions like basketball or soccer would.
How is Juniper doing? Hair growing back? Energy levels picked up? Allowed to go out and be around others more often? Are you all getting back into a ‘normal’ home-life routine?
The routine is… slowly coming back. It’s difficult. She became so accustomed to sleeping in our bed, she now just comes into our bed while we’re sleeping to crawl in with us. Luckily for her, I don’t mind co-sleeping so much but boy she is a bed hog! She is having some difficulties with potty training due to the effects of the chemo on her digestive system but we continue to work on it & let her go at her own pace — something we will probably do all of her life. Her prosthetic is currently far too small & more round than it needs to be, so we are constantly having to rotate it the right way before leaving the house or having visitors or anything like that. She still isn’t comfortable with that & cries & fights every single time. I personally am suffering from a lot of anxiety & physical symptoms that range from chronic pain to full blown panic attacks — & sometimes that means dinner is sandwiches & the house isn’t always ready to be featured on Better Homes & Gardens because priorities have to come into play. It’s a process. A very slow, very trial & error, play-it-by-ear, take-it-one-day-at-a-time process. When your world has been shaken up so badly for half a year, cannot expect anything but at the very least a half a year to rebuild.
It’s also been hard to get back into the normal life routine when we have so many great friends & family members who have been so patient & so understanding about Juniper’s restrictions during treatment. We’ve met so many awesome people & other families going through their own cancer battles, retinoblastoma & otherwise. We are constantly on the go to playdates, events & soaking up every ounce of living we can daily.
We still maintain the Juniper’s Journey :: A Retinoblastoma Fight Facebook page with updates about Juniper & what we are doing to give back. I’ve had a few people reach out to me regarding concerns they have of family members or friends who they think they might of seen “the glow”, that reflection of camera flash off the tumor, in photographs. And recently there was a story that ran on the news about a family who experienced a “glow” photo, so awareness is spreading!!
Going through a cancer fight takes you to a new level of understanding for others & remind you that everyone is fighting a battle you know absolutely nothing about. We aren’t just supporting cancer-researching & funds & family… This month we raised funds for & walked in the Million March Against Child Abuse in honor of a relative who was a victim. We are currently raising funds for March of Dimes in honor of all the premature babies we’ve known. We’ll be visiting the Hoh Rainforest on the Washington Peninsula & so, we’ll be raising money for rainforest conversation during that time. And we are always happy to spread great pages of other little fighters on Juniper’s page, like Violet Brielle who is another RB fighter & whose amazing mom knits hats that can be purchased or sponsored to be donated to a child fighting cancer or Support for Zac, who is fighting moebius syndrome & making loom bracelets to raise money for a trip to Disney because his condition, while very difficult to live with & expensive to support, is not considered life threatening so he does not qualify for Make a Wish & A Princess with a Purpose, probably THE absolute most inspiring fundraising family for leukemia & support of Mary Bridges Hospital & Make a Wish Alaska-Washington.
There is truly so many amazing people out there doing so many amazing things to create awareness & spread joy to these families. We love to support them in their efforts because no one should have to fight cancer alone. It just makes us feel good & like what Juniper went through was not in vain to see so many banding together to lift others up in support.
Thanks to Make A Wish, you’re headed to Disneyland!! Tell us what each of you are most excited for…
We met with our volunteers, Jan & Mellissa, who are both just really sweet & genuinely eager to help get us to Disney. When asked what Juniper wishes for, it was without a doubt to see Minnie Mouse. So, I imagine that’ll be the highlight for her: getting to hug Minnie Mouse & probably the fireworks as that’s a favorite of hers on the Disney Vacation Planning video.
Juni’s Big Sister, Ember, is without a doubt most excited for Radiator Springs Racers & visiting CarsLand. She’ll also tell you for hours how she can’t wait to go swimming in the big pool with the really cool slide. And both girls are absolutely going nuts over Frozen right now, so I imagine the Elsa and Anna Meet & Greet will be a huge hit with them as well.
I’ve always been a huge Nightmare Before Christmas fan & that has naturally passed on to my girls. They love Jack Skellington & so I’m pretty excited to take them through the Haunted Mansion Holiday & to see Jack MC for the Halloween Fireworks. We are huge Halloween fans in general in this house – so trick or treating at Disneyland will be a highlight of their lives, I’m sure.
My husband is simple… food. He’s excited to see there are many a blogs dedicated just to the food at Disney.
It’s definitely going to be a much needed & much deserved chance to relax, reconnect & celebrate life together. We can’t wait!