Childhood Cancer is NOT Rare. Lexi's Diagnosis Story (Part 1).
September is childhood cancer awareness month. The purpose of the Love Like Lexi blog this month will be to: 1) raise awareness of the brutal reality of childhood cancer, 2) share Lexi's story as it relates to living out this reality, and 3) preview how the Love Like Lexi Foundation plans to intervene to change this reality for current and future kids.
Reality: childhood cancer is not rare.
A child is diagnosed with cancer every 2 minutes, worldwide.
10,500 children in the United States under the age of 15 will be diagnosed with cancer in 2021
1in 285 children in the United States will be diagnosed with cancer by the time they are 20 years old.
Lexi's Story: Diagnosis Part 1
In May 2018, 7-month old Lexi got a bruise on her eyelid that looked like a black eye. We thought she had bonked herself in the eye with a rattle because she was so active, happy and playful. I did think it was strange that the bruise started out yellow at first, then darkened to green, then blue, then black; I thought bruises usually occurred in the opposite color progression with yellow at the end. I googled it, but nothing came up; oh well, I was probably just being a paranoid mom.
A few weeks went by and the bruise went away. We were glad it had healed just in time for a trip we had to make to the East Coast for work and to see family. The month prior, my mom had passed away after a long battle with health issues. We were headed to Vermont for her memorial service and celebration of life with our long-distance family. On the way, we stopped in Boston for a few days for a work function I had. While in Boston, Lexi developed a fever and was throwing up. I took her to Boston Children's Hospital late one night, and they diagnosed her with a urinary tract infection and sent us home with antibiotics. Phew, nothing major. She seemed to have recovered, but we noticed that she was more fussy on the antibiotics.
We got to Vermont and were looking forward to spending time with family as we celebrated the life of my mom. The first couple of days, Lexi enjoyed meeting everyone and let aunts, uncles and cousins hold her and play with her.
We visited my mom's grave site and had a beautiful celebration of her life. The next day, Lexi suddenly did not want anyone to hold her besides her dad or I, and she most certainly did not want us to set her down. She would tolerate Auntie Audrey holding her as long as she was able to clutch my hair in her hand in order to keep me close by. She became more and more fussy as the week went on; we blamed the antibiotics and the stimulation of being around so many people in a new environment.
On the plane ride back home to California, we forgot to pack Lexi's antibiotics in ice, so they spoiled with one day to go. I made an appointment with Lexi's pediatrician the next day to see if we needed to get a new prescription for the antibiotics so that she could finish the course. While we were there, I noticed that the black eye seemed to be returning, and mentioned it to the doctor too. Dr. Tristy Shaw did an exam on Lexi, felt her belly, and told us to not worry about the antibiotics, but she wanted us to head the the ER to get an ultrasound on her belly. She said "There is a rare type of tumor that can cause black eyes. I want you to get an ultrasound so that we can rule that out." I was a little scared, but the word "rare" comforted me; the odds would be low that this would be anything to worry about. I called my husband and told him we were heading to the ER to get the ultrasound.
In the ER, we got the ultrasound; I tried to look at the screen and read the face of the Tech to see if I could tell if it was good or bad; I got nothing. We waited. Finally the ER doctor came in and said words I will never forget. "We see a mass in her abdomen, and it is rather large." I felt shocked, frozen. I called my husband and told him "there is something wrong with Lexi." He rushed to be there with us. The ER doctor continued to say that they were thinking it might be "neuroblastoma" because of the mass in the abdomen plus the expression of the black eye. I had heard the word "neuroblastoma" before on Grey's Anatomy, but I didn't really know what it meant. I googled, read this page, and didn't really know what to think other than the basic realization that "Lexi has cancer." This sweet, happy, baby that came out of my tummy just 8 months ago, has cancer. The ER doctor informed us that we would be transferred to Children's Hospital of Los Angeles, where we would get more information. I rode with Lexi in the ambulance from Torrance to Los Angeles and we spent our first of many in-patient nights at CHLA. We did not sleep much, but waited for morning to come so that we could meet with the CHLA doctors and figure out exactly what was going on.
Love Like Lexi Foundation
Lexi's diagnosis story is not typical, and we were fortunate in a couple of ways.
Most families do not have a pediatrician as amazing as Dr. Shaw, who was trained at CHLA and was able to recognize neuroblastoma immediately. Many parents bring their children in with symptoms and the parent instinct that something is wrong, but are turned away, and have to continue to push and advocate until the diagnosis is found; this can take months in some cases.
Most families do not get immediately transferred to one of the best hospitals for neuroblastoma in the country, and have to find resources on their own, educate themselves about their options and advocate tirelessly for the best treatment for their children.
One of the initiatives of the Love Like Lexi Foundation will be to create resources that are easily digestible and translated for U.S. families at any stage of neuroblastoma treatment, including diagnosis. When newly diagnosed families google "neuroblastoma", like I did, they will find Love Like Lexi resources that easily break down and explain what neuroblastoma is, what questions to ask your doctor, in what situations to seek expert opinions, and how to get connected to support groups and resources along the way. Our resources will support families in their efforts to advocate and make the best decisions possible for their child during one of the most confusing and scary moments in their life.