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The first week, My Story Part 2 – Surviving The Bubble

My Story, Part 2: The First Week

We arrived at Children’s Hospital of Los Angeles on January 14th, and by the 19th I was receiving my first dose of chemotherapy. Several big things happened during this week. I had my first bone marrow aspiration and spinal tap procedures outside of the surgery, and my aunt cut my hair super short so that it would be easier when it started falling out. These were all monumental events to a 9 year old girl.

The first time I had a bone marrow aspiration after the surgery is a day I will never forget. A sweet, young nurse came into the room with a small homemade doll and said she was going to explain the procedure I was about to have.  She then laid the doll face down and showed me how the doctors would first numb the area of my lower back to prep it for the needle. The needle she showed me was the thickest needle I had ever seen. It had a blue handle and was probably a good three inches long. She said the needle had to be thick because the doctors needed to push it into my bone to get the marrow out and test it for the Leukemia cells.

These images are from Google, but the first shows a doctor extracting marrow from the bone while the needle is down inside of it, and the second shows the actual needle.The first needle goes into the bone and once it is in place, the second needle is then pushed down inside to draw the marrow out of the bone into a syringe for testing.

I know the sweet nurse was only doing her job, but there was nothing she could have said to prepare me for what was to come. 

I was always a pretty petite girl, which is funny considering I was 10 pounds at birth. My frame was pretty small, so an adult, male doctor should have been able to easily access the marrow in my small bones. How I wish this had been the case!

The numbing medicine was injected with a needle and I remember it burning as it punctured the surface and started to flow into my back. I was very scared, as I’m sure both of my parents were who were also in the room with me. I remember the doctors telling my parents that they would most likely have to hold me down to keep me still.  They said that I would want to get up, but that they would work as quickly as they could to get it done. As a mother now, I cannot imagine holding my child down on a table to cause her pain. The thought is almost unbearable.

When the doctor started to make the first push to get the needle down into my lower back, I remember feeling more pain than I had ever felt before.  This grown doctor had to use his entire body weight to get on top of this needle to give it enough strength to puncture the bone. This continued on both sides of my back and took several pushes on each side to get to the middle of the bone where they needed to be.  

I remember one time during a procedure my mother had to leave the room.  She told me later in life that she could still hear me screaming from down the hall.  It’s hard to truly describe the feeling of wanting to get up and run and be anywhere but at that particular place in time.  I was young, but my new life now involved adults holding me down and causing me more pain than I could before imagine, and all in the name of helping me. I remember just wishing, even that early on that I just wanted this to all be over. One way or another.

Within the next day or two, it was time for the spinal tap. Because of the amount of times I had to have each of the procedures done, I was not allowed to be put under anesthesia. There was just too much risk involved with being under it that often.

The spinal tap was very similar in the beginning.  We started in the same room in the hall of my hospital floor and I laid on the table.  With a spinal tap, they lay you on your side in fetal position and have you hug your knees as tight to your chest as you can.  I was already so scared from the bone marrow, that I’m sure I wasn’t as easy to keep still this time.  My dad had to basically hug the front of my body with my knees to my chest and hold on as tight as he could to keep me from moving.

Spinal tap procedures are necessary to check the fluid on your spinal tap and around your brain.  I would find out many years later, that they are very similar to epidurals during birth.  These are also images from google to explain the procedure visually a little better. These were not procedures anyone was whipping the camera out to capture. 

The spinal taps were much quicker than the bone marrow aspirations.  They were however a little scarier.  The doctors would remind us how important it was to hold as still as possible so that they don’t knick a nerve or damage it in any way.  The needle was inserted in the bottom part of the spinal cord in between two vertebrae.  Once they reached the spinal cord, they would then extract the cord for further testing. 

I don’t remember much of my first dose of chemotherapy other than puking constantly for a couple days in the bathroom.  My mom stayed as close to me as she could at all times.  

One of the funniest things I remember from that particular week was my nurses wheeling in the TV and VCR and putting in the movie Dirty Dancing. Apparently all the nurses and women were in love with Patrick Swayze because they would all take their breaks and come sit on my bed and watch with me.  To this day, he is one of my all time favorites and I still love that movie.  I had to quickly learn to hold onto the good moments when I could get them.  Even if that included an inappropriate movie for a 9 year old.