Childhood Cancer is Different from Adult Cancer. Lexi's Diagnosis Week.
Reality: childhood cancer is different from cancer that occurs in adults.
While many adult cancers can be diagnosed early, in 80% of kids, the cancer has already spread all over their body by the time it is found. .
Unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors, but are rather often the result of DNA changes in cells that take place very early in life, sometimes even before birth.
Lexi's Story: Diagnosis Week
The morning after our arrival at CHLA, we began the week-long series of scans and tests that were required to make an official diagnosis of neuroblastoma. First up, we had a CT scan to get a better picture of the mass we knew was there. While we waited for the machine, I tried to entertain her by showing her the pictures of animals on the walls. She didn't appear to enjoy them. When we got back to the room, I noticed that she was keeping her head down, not making eye contact with me like normal. I put my hand in front of her face; she didn't flinch. I called the nurse immediately, freaking out; "I don't think she can see!"
They ordered a CT of her head and then our new Oncologist, Dr. Shahab Asgharzadeh, came in to deliver the news that she had additional tumors in her skull behind her eyes and nose, which were causing the black eye and the vision impairment. He asked me all sorts of questions; when did I notice that she couldn't see? Just this morning...I think. Could she see yesterday? I think so; she made eye contact with her pediatrician who we saw yesterday. This was very important to figure out because we didn't have all of the tests needed to confirm neuroblastoma (only a biopsy of the tumor and looking at the cells under the microscope could make that confirmation, which would take days), and yet, we need to start shrinking the tumors asap if we were going to have any chance of saving her vision. Dr. Asgharzadeh weighed the pros and cons of starting a standard chemo treatment without the official diagnosis, and we all decided to go for it. Lexi got her first chemo that night; about 30 hours after we found out that she even had cancer to begin with.
After the chemo, our task was to monitor the bruise on her eye to see if it was healing. If it was healing, the chemo was working. The bruise did improve, but her vision did not return. The Ophthalmologist came and looked at her optic nerves; they saw injury, but not complete damage. But they explained that nerve injury can take weeks after an injury to be visible on the nerve, so they would look at the nerves again in 4-6 weeks. In the meantime, we continued our week of 4 nights of chemo, abdominal surgery to take a biopsy of the tumor, surgery to place a central line, bone marrow aspiration to look for cancer cells in the bone marrow, an MRI to get a better look at the tumors in her head, and an MIBG scan. In the MIBG scan, a radioactive dye is injected into the body and the neuroblastoma cells "eat it up"; wherever the dye lights up on the scan is where neuroblastoma cells are in the body.
At the end of the week, Dr. Asgharzadeh sat us down to tell us the official diagnosis and treatment plan. Stage 4, high-risk neuroblastoma. 50% chance of survival. 18 months of treatment.
Our lives were forever changed. When we saw the Ophthalmologist a few weeks later, he confirmed that Lexi's vision would never return. We were devastated. But I will always remember the words he said to me: "the only limitations she will ever have are the ones that adults place on her." This statement could not be more true. Lexi's lack of vision never held her back and only made her stronger. She was verbal at a very young age and was independent as heck. In fact, the fact that she was blind hardly ever occurred to me.
I used to wonder if the outcome would have been different if we had brought her in to her pediatrician sooner - at the first sign of the black eye that we saw more than a month before we actually brought her in. The neuroblastoma diagnosis would have been the same because the cancer had already spread from the abdomen to the eye, thus causing the black eye; stage 4. But we may have been able to save her vision. However, I actually believe that her blindness improved her experience living so much of her life in cancer treatment; in the hospital. She didn't have to see anything scary; she lived her life listening and feeling, connecting with people in conversation (yes, conversation at the age of 2-3!), listening to music and singing, commenting and laughing at every "silly" noise, including the IV pump beeps, feeling the funny "arm hug" of the blood pressure cuff, joining in playful banter with nurses and doctors and even looking forward to her beloved anesthesia "naps". She truly enjoyed her life and everyone in it, no matter where she was. She was happy, she was fulfilled, and she inspired all of us along the way.
Love Like Lexi Foundation
Diagnosis week in the hospital for neuroblastoma patients is intense. They may or may not have known that they would be spending a week away from their home and in the hospital setting. They watch their child go through surgeries, tests, scans, being poked, and going under anesthesia. They fear for their child's prognosis and try to wrap their heads around how their life is completely changed. The Love Like Lexi Foundation will wrap our arms of love around kids and families during this difficult time. We will work with hospital social workers to provide families with whatever comfort is needed, whether it be fun activities for the kiddo, extra clothes and toiletries for parents, food deliveries to the hospital, resources about neuroblastoma, parking passes, a person to talk to, etc.