Ariana was born healthy, happy and on time in March of 2013. Bringing nothing but joy and love into my life. All of her developmental milestones were met on time and she was always in great spirits. Her pediatrician did all the routine blood tests and shots and nothing ever led us to believe anything could be wrong with her. So it comes at no surprise, when I heard the emergency room doctor utter the words leukemia cancer, my world was turned upside down.
It was in late July of 2014 that Ariana had her first ear infection. As soon as she tugged on her ear I ran to the doctor’s office and had her checked. She indeed had an ear infection and was put on antibiotics. Like all babies who are sick she was fussy, wanted to be held all day and her appetite had decreased tremendously. When she was finished with the course of antibiotics, I noticed she was still not acting like her normal happy self. We went into the doctor’s office again and I was told toddlers typically experience a decreased appetite, not to worry she would bounce back. Something in me did not feel satisfied with that response but I figured I would let a few days pass and see how she progressed. Ariana’s appetite seemed to be on the rise in mid August and she seemed to be happier, although not her usual self.
She had an appointment scheduled in late August for vaccinations. I took her in so the doctor could ensure she no longer had an ear infection and also so he could do the finger prick test to check her hemoglobin. I asked to postpone the vaccinations until our next visit, thank GOD I did. The hemoglobin result was 14 and we were asked to come back in two weeks for the vaccinations. The next day, Ariana and I were playing in our front yard and she decided to play with some seeds on an unknown plant. We came in, washed our hands, ate lunch and she was off to take her nap. When she woke up, her eyelid was bright red. Needless to say I freaked out and immediately took pictures and emailed her doctor. The doctor did not deem it necessary for us to come in as the plant was not venomous and it was more than likely just an allergy.
Give her some benadryl and apply a little hydrocortisone and we will see you in two weeks.
The next morning her eyelid went from red to purple…I could not understand how an allergy could cause this to happen. Again, I emailed a picture to the doctor and he assured me I had nothing to worry about. The next two days I noticed she was sitting more than standing and wanted to be alone in her play room. Her eyelid seemed to be back to normal but she was off.
The next week her face started to look different to me…I could not pin point what exactly was happening but she looked different. My mom came over and asked me what had happened to the area in between her eyebrows. BINGO! That area was swollen and it looked like a colorless bruise. I called her doctors office and emailed the doctor and he assured me she had probably just bumped her head and would be fine. I found myself uneasy at night and stressed to the point I broke out in hives. I went to the dermatologist the next morning with Ariana and the dermatologist was more concerned about my daughters face than my hives. FINALLY someone who validated all my concerns and advised I go to an ENT to examine what could be going on. As soon as I got into my car I phoned our ENT. To my luck, someone had canceled for the next day (which happened to be my birthday) first thing in the morning. The following morning we saw the ENT and she believed that it could be a dermoid cyst that had formed. She requested a sedated MRI and told me that in order to remove the cyst she would need to make an incision at the eyebrow. I thought my world was over when I heard sedation and surgery. I left the office with a knot in my throat and a heavy heart. When I called to schedule the MRI I was told the soonest they could see me would be a month out. ONE MONTH?! I simply could not wait another month so I got on the phone with the ENT. She knew how concerned I was and she did all in her power to get me an appointment ASAP. Seven days later we were at the hospital were Ariana would have the first of her many IV’s set up. That night, the ENT called me with the results from the radiologist. I still remember sitting in my kitchen seeing her number on my phone and hearing her voice of concern on the other end. The mass was not a cyst and furthermore they needed a biopsy of the area in order to provide a diagnosis. As far as the radiologist could see, this was abnormal tissue and it was NOT GOOD. I broke down in tears as the ENT assured me she would help me find out what was going on with Ariana. We hung up and I felt like I could not breath and tears had never poured out of my eyes the way they did that night. An hour later, the ENT was calling me again. She was calling to tell me she had a good friend who was the head of the dept of Neurology at a prestigious hospital nearby and that she had spoke with him, scheduled an appointment for us and all we had to do was take the MRI disc and Ariana first thing Monday morning.
Monday could not come fast enough. Over the weekend Ariana’s forehead had gotten worse and she was starting to look like a completely different person. When we arrived at the hospital we immediately were seen and the neurologist reviewed the MRI disc. He could not say for sure that this was a tumor but it did look like it could be and it was attached to the cranium. He got on the phone and scheduled an appointment with the craniologist in the next building 4 hours from that point in time. It is incredible what knowing people and having an angel watching over us can do. We saw the craniologist and were given the worst possible diagnosis. They needed a ctscan and biopsy, if the biopsy confirmed their suspicion they would need to remove the part of her cranium in between her eyebrows and reconstruct her face with a metal plate so her face would not dip in. I was also warned that there could be a spinal leak and she could lose mobility and or her sight. The doctor left the room and I tried to remain as calm as possible. When he came back into the room he told me to go downstairs and have the CT scan done, he had called and they were expecting us.
Wait for my call tomorrow afternoon.
My phone rang the next day and the doctor sounded confused and concerned.
Unfortunately, the CT scan is not confirming our diagnosis and we need a biopsy done ASAP. I have a hunch your daughter could have lymphoma.
Lymphoma? What the hell is that? I have always been the type of person who googles everything and anything but for some reason I did not google lymphoma. My phone rang again and it was the ENT. She had scheduled a biopsy at the end of the week and she was going to have the pathologist on site so he could take the tissue and give us preliminary findings that same day. The night before the biopsy I met with the ENT and we went over the MRI, CT scan and as she looked at all the images she sighed and said
It might just be lymphoma.
She kept saying to herself she didn’t understand why lymphoma in that site but that we would soon know.
The morning of the biopsy I was calm and collected. Ariana went in with the doctor and we patiently waited for the procedure to be over. When we were called to go to the back to see Ariana, the doctor advised us that she had bled more than the usual patient and that she had to use extra magic glue to get her to stop bleeding. She looked at me with eyes I will never forget and commended me on being such an amazing strong mom as her eyes filled with tears. I now believe she knew deep down that my daughters diagnosis was not a good one. Ariana was extremely pale, bruised, and very swollen but able to go home. Again, I was told that in one hour I would receive a call. We drove home, my husband was in the kitchen cooking breakfast and putting the coffee to make, while my daughter was sitting in her high chair, when my phone rang. I took the call in my room and I will never forget that day.
It is what we thought it was…. Lymphoma… the preliminary findings show cancer. I have called Children’s Hospital and they are waiting for you guys to come down. Pack enough things for at least two weeks. I am so sorry this is happening, but this is the better diagnosis than a tumor.
She proceeded to give me doctor’s names and directions on how to get to the emergency room and I took note of everything in my notebook and then had to deliver the news to my husband. Today, I can say that I do not remember how I delivered the information to my husband, how I packed bags for all of us and how we got to the hospital. The next thing I know my daughter has an IV started, blood drawn and the ER doctor asking
why we failed to inform her that Ariana had leukemia.
This was news to us and now another diagnosis.