Many people want to know how we found out that our Riker had this awful disease. Here is the story:
Riker had always been a fussy baby and was diagnosed with "colic" very early. We have no idea if this has anything to do with her cancer; however, I was very used to her crying nearly all day by the time she was really sick. She had some bruising on her ankles from diaper changes but a friend had assured me this was normal - her son had them as well.
Earlier in the week, Valentine had an awful cough that she shared with her sister. Riker was coughing occasionally but didn't seem overly uncomfortable or more fussy than normal.
On Thursday, June 2, 2011, I went to my breastfeeding support group. Riker seemed fine and I was praised for her big fat belly. Later, I found out that her liver and spleen were enlarged with cancer cells causing the big belly. I asked about the bruising and was told it wasn't really normal and I should have it checked out. She had a 4 month well baby appointment coming up and I figured it could wait.
On Friday, June 3, 2011, Riker had the best day I ever remember her having. I worked from home that day and she slept a lot which I assumed was due to a growth spurt. When she was awake, she was full of smiles and quietly talked to her toys while I worked. I went out to lunch with my best friend, Mina, and she was the center of attention.
On Saturday, June 4, 2011, Riker had an awful day. Her cough had gotten worse and she was fussy and crying when she wasn't sleeping. I assumed her cold had just taken a turn but that she was fine. I considered going to the doctor's office or ER to check for an ear infection but didn't want to be a paranoid mother. We left for our vaction in Bethel this day hoping that a good night's rest would help her.
When we arrived at the condo in Bethel, she was inconsolable. I was worried and considered calling her pediatrician's on call service but again, didn't want to be overly paranoid. After she ate she puked most of it up which was normal for her because she had GERD and often spit up. After she spit up she started heaving and crying between heaves. I have never seen such a small infant do that - only older children and adults. It was at that point that I decided to call the doctor.
By the time they called back, I was again questioning whether I should bring her to the ER. I was upset because we had just started our vacation and were supposed to go to Santa's Village the next day. Of course, the nurse who called back said she needed to be seen so we drove the 40 minutes to Stephen's Memorial Hospital in Norway.
When they saw her they immediately asked if she was always so pale. Riker is extremely fair skinned so I said, yes... The also asked me if her belly was always so distended. I also said, yes... We were brought into a room pretty quickly. As typical for us, Jon and I joked and he took a picture of a sign on the wall. We didn't think we had anything to worry about - some antibiotics for an ear infection and we'd be on our way.
The doctor arrived pretty quickly and we undressed her for a weight check and examination. At this point, we say that her legs were covered in awful bruises. Everywhere I had touched her, horrible finger prints could be seen and her knees looked like she had been running into walls. In my horror, I assumed that they'd be calling in a social worker and accusing me of abuse. I have never laid a hand on that precious baby - I could not understand why she looked like that. The doctor indicated that he wanted to do a blood test that he'd send off to my pediatrician. He indicated that there might be a blood sugar problem or something similar. He did not indicate how worried he really was.
When the doctor returned, Riker and I were sleeping on the exam table and Jon had fallen asleep in the chair. The doctor said that the news was not good and I immediately sat up. He explained he was pretty sure that the diagnosis was leukemia and that she should be taken to Maine Medial as soon as possible. He assured me that most leukemia was cured at a rate of nearly 90%. He said she was very sick but stable and we could wait for them to send up a pediatric ambulance. I was horrified by the entire experience, drained, exhausted but I had no idea how bad it would get.