Colton has smiled through everything. I mean everything! He loves to be a boy and play with animals and even in the dirt. He loves to play hide and seek. He absolutely loves the water. He also loves our family dog Gunner. My son sees any dogs and wants to take them home. He also loves fish, toy cars and bouncy balls. He’s the average 2 year old, tough and fearless!
I knew there was a chance he might have Retinoblastoma due to family history. Before diagnosis he had a lazy eye and watery eyes. Because I had cancer as a kid, we were told he might inherit it. So he was checked shortly after birth.He was diagnosed at 11 weeks old on July 10th 2015.
Colton has gone through systemic chemotherapy and laser therapy with ICG dye (green dye) to add pigment to his tumors for a better laser response. His first year of life he received laser ever 2-3 weeks. When he was two, it was every 3-4 weeks. As of June, he is now down to every 3 months.
The biggest struggle, aside from financial, would have to be my son’s allergy to the “go to” chemotherapy drug for his cancer. His tumors were also so light in pigment that the laser was not being absorbed well. The stress of feeling alone and having little support was also hard. With my son’s type of cancer we don’t see clinic much. It’s always surgery for eye exams and treatment. So meeting other cancer families is almost impossible. Needless to say the beginning of our journey was very very lonely.
I have two other children at home and during diagnosis there were times I would go weeks without seeing them. Since finding out Colton is finally stable after 2 years, we have tried to rebuild our bonds with our kids and finally have a sense of “normal”.
Colton has strolled though his life not knowing anything else. He has grown through infancy to toddler stage with the same hospital staff. Many of the staff members know him by name as soon as they see him. Some nurses have seen him grow up and my son loves them. Colton is the bravest kid I know!
Maya was diagnosed the day after her 5th Birthday on March 16, 2015. On her Birthday, we had a party at a Bounce House place where she was running, climbing, jumping, playing – enjoying her party. She had been tired the week before, but seemed energized by the party. After the party, we noticed she was breathing heavy – but we figured she was tired from the big day. It only lasted a few minutes and then she seemed fine. The next morning – she woke pale, tired, but determined to go to school. She did not feel great at pick-up, so we decided to head to urgent care to get her checked out. We were only at Urgent Care a few minutes, before we were told to drive directly to the ER at the Children’s Hospital. Once at the ER, we discovered she had a collapsed Lung! and her counts were all over the place. She was put on Oxygen and arrangements were made to move her to the PICU. During all of this – we were told that she had Leukemia and everything would begin the next morning once we were in the PICU.
The next morning in the PICU – they went to do a chest tube, PICC line, Bone Marrow Aspirate and spinal tap, but she crashed almost right away and couldn’t handle the “sleepy meds” (as Maya calls them). They decided to do all of it only using local with her awake! She did great – in the middle of the chest tube procedure she started talking to the surgeon. He wasn’t listening (not usual for patients to talk to him) – so she started yelling “Excuse Me – I didn’t Order this!”. It was the first true glimpse at how she would handle everything. She would have a voice, would want to know what what going on and do it all with a smiles and sense of humor.
Her first 15 months of treatment were tough – with over 140 nights inpatient, plus endless days sitting in the Day Hospital getting transfusions and chemo. We tried to make it fun – calling our time in the hospital “sleep-overs” and looking forward to going to the playroom each afternoon. We looked for ways to make the long days fun – with interesting games on the iPad, getting to watch fun movies and the Disney Channel on the Hospital TVs and building tons of Legos. The second half of treatment was very smooth, she was able to attend 1st Grade, after missing all but 6 weeks of Kindergarten. For a kid who loves school – it was a welcome distraction.
We feel truly lucky that she was able to come out of treatment relatively the same – with some additional physical and emotional scars. She has a big heart, is super smart (reading 2 grade levels above, even after 2.5 years of chemo) and always has a smile and hug. Our family was changed – our son was only 2 when she was diagnosed – which has changed him in good and not so good ways. He is so loving and empathetic, but he carries lots of anxiety and worry around in his now 5 year old body. It is wonderful that our kids have a fierce love for each other, but we hope the emotional scars will begin to heal over time.
The hope for our family is that this experience will change us for the good – that we can learn how to be effective advocates for others going through similar situations. That we can help spread awareness the kids get cancer too.
Rina loves reading, swimming skiing biking hiking and her puppy Jupiter. Rina is artistic and loves to sing. She also enjoys reading any chance she gets including comic books. She has a special love super hero little brother Patrick who saved her life.
On May 10, 2013 we heard the heartbreaking news “Your child has Leukemia.” Rina immediately started chemo 5/13/13. On 5/21/13, she received a diagnosis is Philadelphia Chromosome – ALL, a rare and aggressive form of ALL of which only 5% of kids have this subtype of ALL. The treatment has been intense: many rounds of chemo, radiation and a bone marrow transplant (from her brother, Patrick). Rina has been extremely brave and her resiliency has shown us what a fighter she is. We had so much hope and determination in the midst of the unknown. We feel blessed with a great support system of family and friends and are proud to say she is has been cancer free for 4 years!
We are so happy to be shining the photographer spotlight on Laura Lynn Photography. Laura is a San Clemente photographer who strives to capture the emotional connection of the people in front of her lens. It’s not about the “sit and smile pretty”, it’s about the real, the honest. It’s about capturing who you are, deep inside. Her goal is for her images to make you feel something. As a natural light photographer, she loves love a good backlit, golden moment of honesty. Each family is different, and she strives to capture their unique bond and love for one another. It’s about capturing a moment in a memory through the smallest details to last a lifetime.
What made you want to join tghp as a volunteer? Cancer already sucks. It never affects just the person battling the disease, it affects all those who love that person as well. I feel it’s even worse when it’s a child. Childhood cancer research is so poorly underfunded, I loved that The Gold Hope Project wants to help bring attention and awareness to this monster.
What is your favorite thing about being a TGHP photographer? Getting to meet these amazing fighters. Their strength and resilience is inspiring.
Has working with children with cancer changed anything in your life? Absolutely. It reminds you to be positive through the tough times. These kids, although going through something terrible, are still happy and they just want to play and have fun, and live. It’s a reminder I think we all need from time to time. Live in the moment and enjoy everything you possibly can about it!
What is one thing you hope the families you photograph for the project can take away from this experience? Their bond. Often times, as active participants in our own lives, we miss the little details. That’s why photography is so important, and why I do what I do. I want to show them their bond, their uniqueness, their love for one another through my eyes. When you’re with your kids everyday, you may not really see the way they look at you, with love and admiration. But I’m looking through a window into their lives, and I get to show them what I see. I always want love to shine through.
How would you describe your photography?I do my best to focus on the emotional connection. My photography has often been described as honest, emotional, and natural.
You know when your kiddo has the flu and you’ve sent the group text to your friends warning them of their own imminent puke fests, and there’s that one friend that always responds with, “how can I help?” or “what do you need?” and then a few hours later you find Lysol and Gatorade at your front door? That’s the best. Just that tiny little gift of thought and support, the gift of knowing you’re cared about, is enough to make the hours and hours of back rubbing and toilet cleaning a little easier to stomach.
Imagine for a minute if your child never got better from the stomach flu. What if you were told that your life was going to be nothing but the worst of the stomach flu until either a bunch of super expensive and dangerous medicines cured your child or your child dies? Can you even imagine?
I can, and unfortunately so can the thousands of parents whose kids have been diagnosed with cancer. The second that diagnosis comes in, all bets are off and normalcy becomes a nightmare of doctor speak, scans, tests, tears, discomfort, hospital bills and an actual and real fear for your baby’s life. These parents need help. They need their friends to be there for them for moral support. They need their families to advocate for them. They need their medical professionals to create miracles for them.
But, how can one person help, really help, in this horrifying situation? How can one person support, encourage and be strong for an entire family when the going gets tough?
I’ll tell you. It’s way easier than it seems.
The gift of food is always appreciated, especially for a parent or two living off of hospital cafeteria food. Being the recipient of a few gift meals, I can tell you without a doubt that even a simple home cooked meal does a heart good. In all honesty, one of the most positive memories I have of the Ronald McDonald house involved a homemade grilled chicken gift – mmmm. My soul was lifted that evening and ever since when I think about the heart that went into those few pieces of barbequed chicken.
Another way help is needed is with other children in the family. When a child has cancer, suddenly every thing else becomes background noise. The highlight of the week used to be the tball game, but now that just causes anxiety when there’s no parent available for it. Offer up your transportation services for a ball game or an appointment. While it this helps to alleviate stress in the already stressed out parents, it can boost the morale of the other kids in the family when they realize they really are still important.
Aside from the little things, friends and family of parents with a tiny cancer fighter can also help by compiling resources for the parents who most likely need help but don’t have the time to even recognize what they need let alone find out how to get it. Coupons from the Children’s Miracle Network for meals could help a family a lot – a little assistance goes a long way on the cancer treatment and recovery road.
A new partnership with YouCaring has enabled the American Childhood Cancer Organization to offer free crowdfunding and fundraising services to families with childhood cancer. Here, they charge no fees; so all monies raised are for the family – a step in the right direction for crowdfunding and assistance in general. This could be a hugely impactful way to offer your support for a family in crisis.
Having been on the receiving end of well wishes and thoughtful gifts myself, I am aware of how precious even the smallest offer of help is. Helping someone in need doesn’t have to be a big deal. A phone call, text or a quick stop by the hospital or home gives an immediate boost to those on the receiving end. Bring them a coffee or candy bar as a lasting hug after you leave. Offer to watch the other kids so they can grab a shower or walk through Target for an hour to get back to feeling “normal”. Cook them a meal in a ready to freeze pan. Bring a bag of incidentals for their house that they are most likely too busy to think about – toilet paper, paper towels, baby wipes, and paper plates. For the parents staying at a hospital, makeup remover wipes, a good book or your time is a great “thinking of you” gift.
The bottom line is, these parents are giving every single ounce of their energy to their sick child and their well children . . . what they need more than anything is for someone to look out for them. So bring a smile. A hug. An ear. Give thirty minutes of your time to listen, really listen, to what they are dealing with.
A family going through the serious illness of a child is busy, both physically and emotionally. Chances are, they may not remember the details of your kindness, but they will always remember how your little act made them feel, and that is really all that matters.
A big thanks to Rhonda Wilson, mama to to a cancer angel, for writing this blog article.
Today we are happy to shine the photographer spotlight on Kiki Blue Photography. Kristy is located in beautiful Mount Dora, Florida. She has lived in plenty of states but Florida is her favorite. She has 3 crazy little boys (each born in a different state and 2 actually on the same day 7 years apart) who have taught me how to be a master multitasker and get a smile out of anyone. She specializes in exceeding her clients expectations in a laid back but efficient, easy going professional way and loves to give back to the community.
What made you want to join tghp as a volunteer? A client-turned-good friend of mine had a little boy diagnosed with DIPG last August. His name is Cole, so they came up with the slogan ‘We Believe in MiraCOLEs’ (I thought that was so cute). I watched their journey drastically change but their faith only strengthened through it. In January of this year my friend asked me to take their last family photos as Cole’s health was deteriorating quickly. My heart sank. Right at that moment I changed the way I looked at that camera in my hands. A few weeks later in February they invited me to take pictures at his half-birthday celebration. I could write a novel about all of the incredible experiences and amazing things people have done for this family. It was a little surreal that last summer I was at that very same clubhouse taking pictures of Cole’s 7th birthday party. The half birthday celebration was just incredible, even ending with a large firework display! Less than 48 hours later Cole passed in the arms of his family. The family asked if I would take pictures to document the funeral and viewing. I didn’t even flinch at the idea even though I hadn’t been to a funeral. I have never felt the veil between heaven and earth so thin than that day, and left feeling so incredibly uplifted. The most heart wrenching thing I’ve ever been a part of, yet at the same time my heart was filled and then over flowed with even more love and a better understanding of what a tiny speck this time on earth is in our eternal life. I vowed I was going to use what gifts I had to help families with similar struggles in any way I could.
What is your favorite thing about being a photographer for The Gold Hope Project? Nothing brings us more joy in this life than serving others, so being able to do that while also using my talents is even more rewarding. Bringing even an hour of normalcy for these strong families in-between hospital visits, or frequent illness. To laugh and be silly and capture all the little details of their love for each other.
Has working with children with cancer changed anything in your life? Everything. It has changed everything. My outlook on life and perspective on my daily routine in general is totally different. How I photograph my families, brides, graduates, you name it, is different.
What is one thing you hope to families you photograph for the project can take away from this experience?That they are loved more than they can even comprehend. I know that doesn’t have anything to do with photo’s, but I just hope through having their photos taken that they are felt loved and get a glimpse of how perfectly beautiful they are despite ugly circumstances.
How would you describe your photography? Big? Haha I tend to shoot BIG pictures rather than intimate closeups.Maybe I have some kind of crop-phobia but it’s kind of a problem of mine lol. I like bright light and lots of color. There is always lots of laughing at my shoots and I LOVE outtakes.
