Written by Roxanne Gil
The Gil Family. Adam, baby Roslyn (7months), Jude (11), Olivia (2), Not pictured Elianna (20)
“It was the best of times, it was the worst of times,” this line from Charles Dickens’ classic, A Tale of Two Cities, is the closest way to describe our journey into my daughter’s cancer diagnosis. Best of times? Sounds crazy, I know, but it's the truth! I will get to that.
It was around January of this year when Olivia first showed signs of something not being quite right. She had a cold, which is harmless enough, but during that time she developed a lump on her neck behind her ear, and she stopped eating. She went on several rounds of antibiotics, and though her cold cleared up and she slowly regained her appetite, her lump remained. Her pediatrician did not seem concerned, but suggested I speak to an ENT specialist, which I did, and they, too, did not seem concerned stating that they believed it to be a common cyst and they offered to remove it whenever it was convenient for us. Fast forward a few months, and that’s when the fevers started, and our normal lives ended.
The first time we went to her pediatrician, they suspected a virus. The problem was she had no other symptoms other than the fever. They told me that she would probably develop more symptoms and just watch her for the next few days and see how she did. A few days later, we went back, with the same diagnosis and suggestion to watch her. By the end of the week, the fevers were getting worse. Saturday morning, she spiked her highest fever yet, so I took her to the pediatrician again and they said they suspected that maybe she had a urinary tract infection and sent me to Scottish Rite to get labs and antibiotics. They ran her labs and came back confused asking and me all sorts of questions. The doctor told me they had to rerun her labs because they saw some concerning markers but they wanted to be sure the labs were right. It was afternoon at this point, and I was getting frustrated. “Can't they just call me with results and send in my antibiotic?? I have stuff to do,” I thought to myself.
Maybe I was in denial, or maybe the doctor was not very clear, I am not sure which. New information was coming faster than my mind could seem to register. I remember he said that the labs indicated Leukemia and they going to admit her for more tests. I was annoyed, and I thought “My daughter does not have cancer, how ridiculous!” The nurse walked us to our room. I called my husband but could hardly say the words “they think she may have cancer,” out loud. We were not even settled in the hospital room on the general floor yet when the nurse came in and told us that they sent us to the wrong place and that we were being transferred to the Aflac floor, as if I would automatically know what that meant. As we walked up to the 5th floor, I asked her, what does “Aflac mean?,” she replied, “oh, it’s the cancer and blood disorder floor.” As we walked to our new room, I saw a small girl around Olivia’s age walking the halls with her parents and IV tower. She was pale as a ghost and had no hair. Coincidentally, her name was also Olivia. That was when it all started to sink in, I think. It was like seeing my near future walking down the hall in front of my very eyes.
Elianna and Olivia
The rest was a literal whirlwind. The next day, Sunday, the doctors confirmed her diagnosis and immediately scheduled her for surgery to insert her port, which is how they administer her chemo. By that Tuesday, she had her port and had started her treatment, and so our journey began.
So on to the best of times! Olivia’s diagnosis unfortunately was only a part of a terrible cluster of medical events that our family was experiencing at the time. I felt we were truly under attack. I felt that I was being tested. Oddly, the harder the tests became, so too, the stronger I felt in my faith, and the confidence I felt was on the rise. Now thats not to say I didn't have my moments of trying to quietly sob in the shower so no one could hear me, or crying into my pillow on the occasional night. Everyone needs moments like that, and believe me I had a few, and I am sure there will be more on the horizon. I think though it is more important how you recover from these moments, and I just give thanks to my growing faith that helps restore me.
Undoubtedly the next thing that has been a game changer for us is our tribe. Our family who showed up, our friends who never stopped calling. Strangers that contacted us asking what they could do. Random people that Adam, my husband, and I have met over the years that just dropped a line to say that they were thinking of us, and praying for us. The strength that we were able to draw from these acts was immeasurable.
In honor of Leukemia Awareness Month, I hoped to share a little bit about our experience to help others get a feel for how to get involved or help others that might be going through a similar situation. It is important to remember, not everyone has a tribe, and even those who do struggle.
I am the first to admit, I am not very good at asking for help, and I am even worse at accepting. My first suggestion would be to “not ask, just do.” Two of the main things that people did for us that we could not have survived without was monetary contributions (or gift cards), and the very underrated meal train. Meal train was especially wonderful because it took away the stress of me trying to plan grocery store trips and feeding family that was helping us- especially during the times that I was unable to leave the hospital.
Another great way to help is to take the other siblings out for short adventures. A sick child is not only hard on the parents, it is really hard on the whole family. I still struggle to ease the guilt of having to give more attention to our sick one. Luckily, my son is 11 years old now and so he understands, but again, this is not so for all families in similar situations and it does not make it that much easier. Something you may not realize is that during these treatments kids often have compromised immune systems and can’t be in many public places, even places as common as the grocery store- not very much fun for siblings to be trapped at home too! Offering to take siblings out is a huge relief and welcomed break from reality. Little things like movies, bowling, or putt putt!
Lastly, I would like to add, the small things do matter. Maybe you don’t have time to cook and deliver a meal or do have extra funds to give- that’s completely ok! Some of the most meaningful ways that people have touched our lives is just being present. Texts, and calls checking in on us, letting us know that we are loved and being thought of. People taking the time to lift us up in prayer, it's been fueling our strength to carry on with grace. Also, don't give up on us. Sometimes you may text and not hear back for a while, or ever- be persistent. Remember that we still like to be invited to family gatherings and normal outings, even if we can’t always make it. No matter the circumstance, it’s always uplifting to feel included.
If you do not know a family personally that you can help, there are definitely foundations to contribute to that can directly help families in need...
- A few foundations to consider giving to are Alex’s Lemonade Stand, Friends of Karen, or even just find a GoFundMe story that grabs at your heartstrings.
- My husband and I are fortunate enough to have Scottish Rite Children’s Hospital of Atlanta as our treatment center. Specifically, on the Aflac floor, they have a Ronald McDonald room for families where people catered food for families who are being treated on the floor. You do not realize what a blessing it is financially to not worry about paying for every single meal, all which add up quickly when you are there for weeks or even months. I highly recommend donations for this as well!
- Outside of those, I would urge you (and as many people as you know) to donate blood or platelets to your local donation centers, I use The American Red Cross. Sometimes chemo can cause low blood counts which means that kids would have to have a blood or platelet transfusion before they would be able to receive their chemo. Donations are completely free, and sometimes you can even get prizes and gifts for yourself for your donation!
- Prayer! (See Roxanne's prayer below to know how to pray specifically for children going through treatment and their families.)
No one ever expects to find themselves in the position of having their baby’s life on the line. It is easy, if you're not careful, to fall prey to the worry of what life throws at you. Even this dark valley has been such a blessing to my family. In these “best of times,” we’ve witnessed miracles of healing. We have seen the power of prayer. We’ve tested the strength of our family, and grown closer. We’ve experienced the love and impact a community can have when it comes together over a common cause. Not a day goes by I am not humbled by those who have touched our lives. This Childhood Cancer Awareness month, I ask that you step in a be present for someone, maybe even someone you will never meet. It doesn’t have to be anything grandiose, or expensive. In fact, so often, it's the small things that matter most.