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The Bubble, Part 3: My Story – Surviving The Bubble

The Bubble, Part 3

It happened.  On my 10th birthday, it happened.  All my hair fell out.

At first, I would run my fingers through it and get out small chunks at a time.  As the days went on, I started waking up to my pillow covered in tons of short brown hair.  Then, on March 9th, my 10th birthday, I woke with a pillow full of hair, and none on my head.

The funny thing about being bald in a hospital is that most people don’t seem to be too bothered by it.  Most of the kids in this ward of the hospital were in fact bald, so it becomes a pretty normal thing to see.  I feel blessed that I was able to get used to it in the hospital environment surrounded by other kids that looked just like me, before being sent into the real world.  That, after all, is a completely different reality all together. 

My appearance was starting to change drastically.  I was mostly bald, with little tufts of hair here and there.  No one was allowed to shave my head for fear of nicking my scalp and causing extra bleeding that I didn’t need at the time.  My teeth were almost purple because of my diet and lack of an actual toothbrush to use every day.  I was very pale, and starting to get very skinny.

My diet consisted of only a few things.  Spaghettios, tomato soup and grape juice.  These were the only foods that I was able to keep down, when I was able.  The weeks following my birthday, the chemotherapy was finally taking it’s toll.  The doctors had to start me on TPN (intravenous nutrition/feeding) once I was unable to keep anything down.  This was the only form of nutrition I was getting and they kept me monitored to make sure I was getting enough.

I was very lethargic.  I had less and less energy and most days just wanted to stay in bed and watch TV. The nurses or my mom would come into the room and give me sponge baths in the  makeshift tub.  The tub was not allowed to be filled higher than a couple inches so that I would not get my Hickman catheter wet.  The tubes came out of a hole that was in my chest, and I was not allowed to get water anywhere near the site. 

These baths were the most humiliating thing that I had to endure in my “bubble room”.  There was a curtain that could be pulled in front of my vinyl wall for a little privacy, but people always seemed to disregard it and open it anyways.  I was not comfortable being in a big open room, with no clothes on and having other people bathe me.  Even at 10 years old, I had a strict sense of modesty and wanted to be covered up at all times. 

The week after my birthday was a week that none of us will ever forget.  The doctors had come in to do a routine spinal tap on my bed in the room.  As soon as they were done, I couldn’t move without crying out in excruciating pain.  The doctors determined that a nerve may have been damaged in the procedure and they needed to keep my immobile and monitored closely.

I laid in that bed for the next 6 days unable to sit up without an extreme amount of work.  My mom sat by my side as often as she could and, with my nurses, tried to help me sit up to use the bed pan. The pain was in the lower part of my spine and would shoot down through my legs and up into my head whenever I tried to move.  It would take a good 45-60 minutes just to sit up and use the bed pan, and then the same amount of time just to lie back down. 

I thought I was going to be paralyzed and confined to a bed for the rest of my life.  Those nights were the loneliest and the hardest.  Those were the nights I prayed the hardest for my magical stuffed animals to come alive and play with me. Then, we had a miracle. One morning, after 6 days of being trapped in that hospital bed, I was able to move and get up without extreme pain.  Whatever nerve the procedure had hit, had recovered and I was able to move around freely again.

It was about this time that we received a couple more miracles.  I WAS IN REMISSION!  The Leukemia that was most likely supposed to take my life, was not showing up in any of my tests or scans!!! The treatments I had been receiving were working. For a cancer patient, this is the news you long for.  The news you wait painstakingly for days or weeks or months to hear.  I was recovering.

Remission does not mean a cure, nor does it mean that treatment ceases.  The doctors need to stay proactive and on top of this remission and make sure that it doesn’t come back.  I was to continue a couple more doses of chemotherapy in the “bubble room” and then prepare for a bone marrow transplant. 

Therein lies our third miracle. My four year old brother, Aaron was tested and found to be a perfect match for me for a bone marrow transplant.  The doctors hope for a family member to be a match and test all family members that they can.  Siblings are found to be more likely matches, but this is not the case for each situation.  Some people, unfortunately, wait months and even sometimes past the point of help on the marrow registry lists.  We were very blessed.

Now all we had to do was get through the next couple of months and after the transplant, we’d be home free!