Part 1: The Leukemia Diagnosis

The Subtle Clues

The summer of 2017 was like any other summer. We had the privilege of hosting Jay's grandmother for the summer. She enjoyed taking her grandkids on walks throughout our small town. 

We took a trip to Arches National Park. Jay climbed all over the trails and rocks. She was enjoying spending all that time with her grandmother. We had no idea that cancer was just on the horizon.

Two weeks before school started, Jay started to feel lousy. She started getting minor nosebleeds. Not a gushing nosebleed, but definitely more than she had ever had in the past. 

She didn't feel like doing much. All she wanted to do was lay around the house. I kept checking her temperature, but it was always normal. 

Her symptoms would come and go enough that I didn't feel comfortable taking her into the clinic. All they say if there isn't a fever is that it must be a virus that has to run its course. I didn't want to waste my money for an answer like that.

The Big Change

On the first day of kindergarten, I woke Jay up for school. 

She wasn't excited and didn't really want to go. I thought she was just nervous. 

I encouraged her and took her to school. I had a hard time leaving her at school because she was my little baby. I'll admit, I shed a tear or two.

I went on about my day, until the school called. They said that Jay was not feeling very well and asked that I come pick her up. 

Jay was picked up from school and just looked as miserable as any five year old could be. She was pale and had a fever. 

I called the local clinic to get a doctor's appointment for her. They were able to get her in just before the clinic closed.

Confused Doctors

At the clinic, the doctor could tell that she obviously looked sick, but he had no idea what could be wrong. 

He asked another doctor to come in and give his opinion. Both doctors were stumped. 

Since it was the end of the day, they wanted us to bring her in first thing the next morning for some tests.

Blood Work

My husband took her to the clinic the next morning because I had to go be at work. 

They drew some blood from Jay and discovered that her blood levels were critically low. The doctor admitted her to the hospital immediately. 

I hurried from work and joined them in the ER. The attending doctor was not a professional to brag about. 

She felt along Jay's abdomen and announced that she didn't think that it was Leukemia. I was pretty clueless and didn't think much about that.

Admission to the Local ER

Jay was taken to a room and given at least two units of blood overnight. During that time her condition deteriorated. 

Her fever climbed to 104 F. The nurses worked all night trying to control her temperature. They alternated Ibuprofen and Tylenol. 

Jay's pain climbed to the point that she couldn't get herself to the bathroom or move much at all. When I picked her up to take her to the bathroom, she was screaming in pain. 

I couldn't fathom what was wrong with my little five year old girl.

Waiting on Doctors

The next morning, we waited for the doctor to come in and do something. She never came and never came. 

Finally, by the afternoon another doctor stepped in and took over Jay's care. He looked at her blood levels and immediately called the hematology specialists at Primary Children's Hospital. 

They put him in touch with their oncology department. (I had no idea what that was at the time.) 

The doctors there wanted Jay taken to Primary Children's immediately. They discarded the idea of having an ambulance transport her the five hour trip and sent their own flight crew instead. 

You can imagine the panic that sets in when you find out that your daughter is in such a critical stage of care that she needs to be flown to a specialist.

The Flight to Primary Children's Hospital

Then the mad dash started. I drove home to pack a bag with a few clothes, toiletries, and other miscellaneous items. 

When I got back to the hospital, the ambulance and the flight crew were getting Jay ready for transport. 

The EMT's loaded her onto a gurney and took her to the ambulance. We rode to the airport and boarded the plane. 

The plane took off for Salt Lake City and Primary Children's Hospital.

I still had no idea what was going on. The flight nurses must have been able to tell that I was pretty clueless because I wasn't a crying mess on the floor of the plane. 

I asked them if they could tell me what they thought was wrong with her. The nurse said that they think she has cancer. I turned into a blubbery mess once I heard the word "cancer."

We landed at some random airport in Salt Lake and took another ambulance ride to Primary Children's. 

The same flight nurses took us all the way to the fourth floor of the hospital where we entered the oncology section. 

I finally put the word "oncology" and cancer together.

The Diagnosis

The flight nurses transferred Jay's care to the unit nurses. Jay was taken to a room. 

Nurses and doctors swarmed all over her. They hooked her up to IV lines, machines, took blood, and started her on antibiotics to try to combat the fever. 

A team was assigned to Jay. I met a caseworker, social worker, fellows, nurses, and anyone else who happened to be in the area. 

The fellow asked if I was ready to hear their thoughts on Jays diagnosis, but I wanted to wait till my husband and father arrived. 

As soon as Jay left the local hospital, they had loaded into a car and drove the five hours to Primary Children's.

Leukemia

Once they arrived, we were taken to a different room where the fellow broke the news to us. She said that they think Jay has cancer, specifically, Leukemia. 

She said that they needed to conduct a spinal tap on Jay and draw some bone marrow just to be sure of the type of Leukemia. I broke down, again. 

This was the hardest thing for me to hear. I kept thinking about what I might have done wrong with raising Jay or what she might have been exposed to to cause it.

The fellow told me that they have not figured out what causes Leukemia yet. They know that it isn't genetic or environmental. She assured me that it was not anything that I did or didn't do. 

The good news was, there was a 95% cure rate with Leukemia. Although no one knew what causes Leukemia, they have figured out how to treat it.

I had a million thoughts rushing through my mind. We lived five hours from the place where Jay was going to get her treatment. 

People moved and switched jobs for life events like this. Would we need to move and get different jobs so we could make sure Jay got the treatment that she needed? How would Jay be able to go to school? What were the long term effects on her health? And most of all, how were we going to pay for everything?

This was a life changing event for Jay, for us, for the community we lived in, and for our extended family. We were going to figure this out. We were going to make sure Jay got the treatment she needed. And we were going to figure out, somehow, how to pay for everything.


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