Wednesday, January 18, 2017

January 18th

In January 2014 I had taken Gracie to her pediatrician because of her bruises. They were small spots on her forehead. She had just turned four. A few weeks later I noticed larger bruises on her legs and arms. It didn't feel right but the doctor said she was fine, that she was really active. 

Finally she got a gigantic bruise across her side that looked like I had thrown a brick at her. The doctor did some blood work and sent us home. I wish I had listened to friend who told me to take her to the ER but I was too afraid. I didn't listen to my mother's instincts. To this day I am deeply wounded by this memory and angry at that doctor.

I remember lying on the couch with her while Luke napped. She never cuddled before, she was too active. We played the "what if" game. What if cats could swim? What if broccoli was made out of ice cream? What if we could fly? I remember knowing then something was wrong. Even still I waited for the doctor to call.

It was three years ago today that they called. It was a Saturday. I had just put both kids down for a nap, Grace had only started napping again the week before. She was tired all the time.

"I'm sorry to tell you this on the phone, but Grace has every sign of Leukemia. You need to take her to the ER immediately."

I thought I was being prepared to pack a suitcase, thinking we might be there for a day or two. I called my parents Deva and Steve who came to babysit Luke. It was the first time, but not the last time, he would wake up with his mom and sister gone for weeks. To this day he panics if he wakes up and I'm not home for any reason.

We went to ER and Grace was poked again for blood work. My mother-in-law Judi met us there. We were there until 1am when we were transferred by ambulance to Children's Hospital Los Angeles. Grace chatted with the EMTs, telling them she was a ninja and that she practiced every day. That's why we called her the Ninja Princess, because of that first night.

Grace was so tired. She had been awake the entire time. At the end of the ambulance ride she fell asleep. They admitted us immediately the CHLA's 4th floor. The oncology floor. I remember seeing the playground toys in the hospital hallways. That's when I started to realize what was happening.

They woke her up again. More blood work. That was traumatic for her, though the nurses were so caring and even had a new toy, an Ella Barbie, for her. Chad slept on the parent bed (mat) and I slept in bed with Grace. We would be there for over a week that first stay.

On January 21, 2014, her doctor confirmed Leukemia. A few days later she had a raging infection and fever. Had she not been diagnosed in time, we would have been at home and I would have given her a Tylenol and sent her to bed. Who knows if she would have woken up. Her cancer made infections deadly. I thank God for getting us there in time to have immediate access to antibiotics.

We soon found out Grace had a very rare sub-type of ALL, the +PH chromosome mutation, that gave her a 20% chance of survival. That same day her doctors helped us get her on a clinical trial that saved her life.

Cancer life started quickly. Grace was four. We had to teach her that wearing masks everywhere was fun (it's not). We got her used to her PICC line they soon gave her, and taught her not to pull the line out of her arm. She learned to swallow pills that first week. We taught her that even though Daddy and Luke couldn't stay with her every night at the hospital, that they still loved her, and that eventually she could sleep in her own bed again. She had to start wearing diapers again at night. She had to get used to anesthesia and to always pulling her "tower" with her medicines and blood transfusions with her. We learned hospital protocol and got used to being woken up all night and napping through the day. We prepped her that her hair was about to all fall out and that the kids on the floor without hair were nice and not scary. We had to teach her words to express her emotions and pain scale.

All of this at four years old.

January 18th is hard to remember, literally. Everything happened so quickly. All our fears were kept hidden, because we didn't want to scare Gracie. We wanted her to be brave.

I remember feeling God's peace, although there was no peace from the situation. I felt his peace so strongly that I was able to survive. Chad and I both recall that feeling, very strongly, that God was with us those terrifying first days.

It's hard to think back to the beginning. Now that her cancer is gone, it's hard to want to remember. I am still healing. Our family is still healing. But we have so much to be thankful for, especially for all the CHLA doctors and nurses and child life and everyone else at CHLA, for all the strangers who donated blood, for our family who helped us, for our many friends who supported us financially and with meals, for our new cancer-tribe that understand us and love us so well.

We have been so blessed, though God used a tragedy to bring us this blessing. Most of all we are thankful for Grace, that she is still cancer free and that the 18th is nothing more than a hard memory, and not a tragic one.

1 comment:

  1. Brought me to tears as I read through. I have a 5 year old daughter currently undergoing chemo for a tumor that has her orbital socket full. It is so difficult to watch our children go through this. A per son doesn't truly know the pain and sorrow in this world until they have a very sick child in which they are helpless to.