Childhood Cancer Awareness

Childhood Cancer Awareness

Diana Gonzalez, a junior at Newport Harbor High School, shares her experiences with childhood cancer.

Death is not an easy thing for anyone to understand, least of all a child. That’s the thing. You just don’t expect it. When my 4 year old cousin, Justin González, was first diagnosed with Neuroblastoma- a form of pediatric cancer- I was blinded by the illusion that it would be like those St. Jude commercials: cute bald kids dancing around the hallways of the hospital. But it isn’t like that at all. Screen Shot 2016-06-04 at 4.16.28 PM

The chemotherapy caused constant vomiting, respiratory complications, and it weakened his immune system- later causing more complications, and the rounds of radiation weren’t any different. After numerous rounds of radiation and chemo, in late July of 2015, we were told that there was no evidence of disease. We couldn’t believe it; the emotion that took over is something indescribable. We were breathing again…we were no longer suffocating on the anxiety that everyday brought due to the uncertainty that accompanies people with the diagnosis of cancer. Justin was finally home and playing, he would go around kicking his soccer ball screaming “Goal!” and singing aloud to Disney songs- such as Frozen-Let it Go (his absolute favorite). A month later, when Justin was having his monthly check up, the look on the nurse’s face said it all with the discovery of an unnoticed lump. Our hearts lied heavy as Justin was rushed to the hospital for scans- we knew what was coming, but the thing is, nothing prepares you for something this heavy. And there it was. The screen lit up- and it wasn’t just one but it was numerous tumors surrounding his lungs and heart. And I wish I could say that from there things got better.

This time I promised myself that it was going to be different- I was not going to allow myself to turn away or be swayed by the delusions of what the media portrayed about cancer. Cancer isn’t just about radiation, loss of hair, and chemo; it is about desperation, complications, and hanging onto hope when things aren’t going your way, it is about being resilient when life gives you every reason to break. I was going to embrace what is and make the best of it. I was going to be there for him now more than ever- every step of the way, and that was a promise. With hesitation, I then chose to open a support page on Instagram, sharing my cousin’s story and updating those in my community about his health. Looking back, I didn’t expect his story to grow much. I was wrong though, his bravery and journey was followed worldwide. His very presence touched many. As a team- Team Justin González- we all decided on creating something of unity so I designed and ordered purple silicone bracelets that said “Team Justin Gonzalez” with a golden ribbon (the color for childhood cancer) on both ends. These bracelets are now worn worldwide, all over the United States, Germany, Chile, Canada, Africa, Spain, and many more locations. Some days there were little to no complications- these days were the best.  I would be playing by his bedside a game of bingo or we would both escape into our imagination and build silly creatures with playdoh and give them funky haircuts. Then there were days where it all went wrong. Days where his lungs would collapse and fail him, so as a result he’d have to rely on an oxygen machine and mask in order to breathe properly- the frustration and hopeless was felt throughout the entire hospital room. Days where we would be playing and he would grow silent and break into tears, and with great desperation he would say he wants to feel better. Days where he would mask the fact that he was heaving for air, holding onto his side where the tumors were located, and he would simply mumble to us that he was okay and flash us all a thumbs up. Smiling became harder for all of us as the tumors spread and the percentage of survival dropped, but with the massive growing support of those on his Instagram page and our amazing community, they managed to make him smile. His happiness became our happiness. They spoiled him with many boxes of toys, letters, drawings, and money. Every time they sent him a package he would ask us to take a picture so he can thank them, every picture he would smile- and for just that moment…everything was okay.

The smile that formed onto his face was something different. It was like watching a rose blossom or a sunset time lapse right before your eyes. It stretched from ear to ear and was accompanied by laughter of pure innocence and beauty. After seeing the joy that these boxes brought him, I was inspired. I got this crazy idea. A great idea. I want to do that. I want to be the reason why a child, who is being stripped of the many things we take for granted, would smile. So one day, with hesitation, while I was sitting by Justin’s side, his hand in mine, I told him and my family about my idea of sending caScreen Shot 2016-06-04 at 4.16.20 PMre packages to kids fighting life threatening illnesses all over the country and while my family found it complicated, his immediate smile drove me towards certainty. And in reality, that’s the only approval and motivation I needed.  So now, without any hesitation, I created a name for these packages– Golden Warrior Packages– and immediately took action. And at first I struggled getting started due to the various factors: shipping costs, costs for the toys, clothes, and supplies. However, on January 26th, I sent out my first box. The smile that formed on that little boy’s face, it was beautiful. It was pure, and it was hope. Everything seemed to be going great. I would spend most of my hours by Justin’s hospital bed, watching cartoons, reading him a book, or simply just talking to him about the many things we would do, from going to Disneyland, to playing soccer, and simply just singing our hearts out to every Disney movie out there. During my free time, I would work on gathering toys, clothes, drawings, and gathering many more items for these care packages and slowly I began sending out two care packages every two weeks. Things continued for awhile like this, and I just wish it could have been like this for just a bit more. Justin continued his radiations, but when the results came in, luck was not on our side. The tumor had spread to his entire left lung, parts of his heart, and numerous nerves around his body. Doctors said that there is only one way out, but the thing is, this other option had many risks. It was a surgery procedure to attempt to remove the tumor; the problem was that the chances for survival were less than 1%. But that 1% kept us pushing for the possibility of getting our little Justin back. It was a possibility of life and that alone is enough to continue this battle.

The day finally came, February 25th; Justin was prepared and he then entered surgery. Every minute that passed held so much desperation. Desperate for it to all be okay. After 12 long hours, Justin beat the odds. He fought like the strong boy that he was. He was moved into the recovery room, but just a few minutes after he was hooked up to the appropriate machines, things took a sudden shift. He was heaving for air, his eyes rolled back, and he was turning purple as everyone was removed from the room and Justin was rushed back into surgery. After another 12 hours, Justin was back in the recovery room. He looked different. He was swollen all over, he didn’t wake up, and he was hooked up to many more machines than before. We were told that during his surgery, things got too complicated so they had to remove his entire diaphragm and left lung. From here, things just continued to drop, slowly, agonizingly slowly. After three weeks, Justin was finally able to move, he no longer relied on an oxygen mask, and he was flashing us all a thumbs up again. Seeing this much strength, we believed it was all getting better. He continued his radiations however since the surgery, it wasn’t the same. The treatment would have him sleeping all day; I would get to the hospital and I wouldn’t be able to hear him call out my name like before. He’d be sleeping, he’d be crying, and he’d sit in silence. In April, everything was getting too hard. Doctors continuously told us there was nothing left to do, however, Justin continued with treatment. Slowly, his body was giving in. He was unable to breathe on his own, he was unable to digest, and he was unable to stay awake for more than 5 minutes. I would get to the hospital, hold his hand in tears, and he would turn to me and with the little strength he had left he would brush away my tears and say, “Be strong, we have to be strong”, not much after he would close his eyes and fall into deep sleep with heavy medication. The sight was painfully piercing, as I felt so hopeless and desperate to have him back. I felt guilty in a way, guilty for the little I could do.

On April 12th, I went to visit him in the hospital, and he could no longer open his eyes. I remember that day so clearly. I was by his bed, kissing his cheek and forehead, I held his hand in mine and cried for hours promising him that it will all be okay, we will make it out. He’s proved the impossible, possible many times. This will be another of those times. I wanted him to wake up…to open his eyes. Tell me this is a nightmare, and not our goodbyes. I began talking about all the good times, and for me they were every single day. I began to make promises, I promised him that whatever happens, I will continue to spread awareness, I will fight in his name, in his honor, I will share his story and his bravery, and whatever happens, we don’t forget any of it. When it was time to leave the hospital at 1a.m. of April 13th, my heart ached. I wish I knew then that it would be the last time I would see him with life. I wish I knew then that things weren’t going to be the same anymore. That after this day, a few hours later, I won’t be by his bedside telling him funny stories, seeing him roll his eyes and cross his arms, and that I won’t see him simply smile and say my name with such happiness. A few hours later while I was in school, I got the call. I was told that Justin had passed away. I couldn’t believe it, and I still can’t. And some may say I’m in denial, and that it’s normal. But you see it’s not his absence that I am in denial of. It’s the manner in which he was taken. I refuse to accept that Justin was taken in a way so unjustified. It was wrong, it was agonizing, painful, and it wasn’t right.

With his diagnosis, and constant hospital visits, I was exposed to the reality. The reality of children being only 3.8% of the cancer research federal funding, whereas adults receive massive federal funds. This infuriated me. Justin was so much more than 3.8%. The 4 kids that pass away every day from childhood cancer are much more than 3.8%. Everyone knows what the pink ribbon stands for. But hardly anyone understands the golden ribbon; the ribbon that holds our nations future- the generations yet to come. It’s truly sad to see a kid in a hospital; it’s no place for them. They should be outside, running, screaming, going to school, and simply living out their years of innocence. And that’s my goal. My goal is to change that. It is in my desire to help advocate for childhood cancer awareness, to honor Justin’s battle. To keep him alive through the memories and my actions of helping others who are currently undergoing or just starting their heavy journey. Now more than ever, I will send out care packages, continue to lead and create fundraisers and campaigns to help families who are struggling, and share Justin’s story so that maybe no other family has to go the undergo such a heavy loss. So that maybe no will else will have to see someone that young slowly slip away within their very presence. So that maybe one day no kid will have to die of such a monstrous illness. Every passing day now, I live through his example and I use his page to spread awareness and honor his bravery. I learned many things from life because of this. It never goes as expected and life itself is too ironic to fully understand. It takes sadness to know happiness and absence to value presence. Most importantly I learned the true definition of strength.

Every now and then, the memories knock the wind out of me. The emotions of hopelessness and guilt take over, but I somehow manage. I get back up and follow the many examples that Justin left behind. His strength to endure any obstacle inspires me to carry on with the war against childhood cancer and like Justin said, “Be Strong, we have to be strong.” And that’s exactly what I’ll be. I’ll do exactly what he did and flash a thumbs up; it will all be okay.