You Only Live Once

I guess you could say I went from "0 to 100",  literally.

The IVIG had worked its magic on me, turning me into a new person.  My counts went from 1 (1000) to closer to 100 (100 000).  Of course, I couldn't wait to tell all my friends about my experience in the hospital. I made a mental list just so I didn't forget the cute boy in the playroom, or the cool cartoon that came on way past my bedtime.  I was beginning to think that this whole hospital thing wasn't so bad.  But my stay came to an end and back to the real world I went.

Grade 5 was both intimidating and exhilarating.  Despite us being the wide-eyed, new kids that had troubles remembering what boot rack was ours or the grade 6 students', I'd like to think we turned out okay.  Some of us got pelted with dodgeballs thrown by the "big" grade 9 kids and some of us were taken under their wings.  At this point in my life, we had no idea if my ITP would be chronic and due to that, I am extremely thankful that I wasn't the one getting pelted with dodgeballs.

I often get asked, "Do you feel like you missed out on anything?" and it always makes me think.

Yes and no.

Of course, it would be nice to be able to play Grounders on the monkey bars without the fear of falling and getting a bruise. It would be awesome to run full speed, jump onto a crazy carpet and slide down the Pasquia Park hill without having to know my counts beforehand.  But at the same time, I thought I was a pretty cool kid. I had been to the hospital, got an IV, stayed up past my bedtime, and got to eat ice cream for breakfast (on occasion). My nine-year-old-self was content.  This was my life, and soon I forgot that I even had a previous life, different to the one I was living. 

Life went on.  I had my 10th birthday.  My family went to Disney World for Christmas.  We traded our minivan in for an Equinox (I have just started to accept the fact that the Equinox is not just a trial run before we got the van back).  I made it through my first year of high school. Life carried on as if my incident with ITP was just an accident that wasn't even meant to be in my life.

Disney World 2010

Once I got to grade 7, I was thrilled. Finally, I could play sports.  It felt like I had been waiting forever.  I joined volleyball, basketball, badminton, and track & field. My schedule began to fill up fast and I fell in love with being busy.  As years went on, I joined more sports and clubs throughout the school and community.  I was finding the love for sports on my own.  

I was in grade 8 at the time.  My coach, Ms Arnst, had loaded up the Junior 'A' Volleyball team into the 15-passenger van and we were on our way to some intense games of volleyball in Bjorkdale.  Everything was going as planned and I was getting quite excited to hit the court.  Little did I know, I would hit the court way harder, in a way more painful way than I EVER could have imagined. 

It was warmups and we must have won the coin toss because we were hitting first while Tisdale was warming up behind us.  It was my turn to spike the ball and Sam set me up beautifully. That's all I remember prior to landing on the ground, having my left hip hit first before I yelled, "OUCH!"

A volleyball had rolled from the team's warm-up occurring behind me.  After completing my approach and attack, both of my feet landed directly on the volleyball, causing me to crash down onto the cold, hard gymnasium floor.  My left hip caught most of my body weight and my wrists were next to hit the ground.  At that moment I couldn't recall anything that was more painful or embarrassing.

To all of you volleyball players, it is WAY more important than you might think to yell, "BALL!" when your volleyball has rolled from your area to another team's.  I am forever wishing someone would have alerted our team before this accident happened.

This was the bruise on my hip after my fall

To this day, we don't know if my platelets were low to begin with, causing me to bruise SO badly after that fall or if the bruise itself attracted my platelets, caused them to drop.  We will never know.  All we knew at the time was that I hit the ground and low platelets or not, there was going to be a nasty bruise.

On the bright side, according to my mom and teammates, I had a "beautiful" hit!

Club Volleyball Photo (best one I could find)

There was a family wedding the next weekend in Saskatoon.  My mom, auntie Sari, Janay, Mackenzie (cousin), Brennan (cousin), and I got dressed up, piled into auntie Sari's new, shiny black Ford truck, and drove to the city for an exciting day.  After the wedding ceremony, I began to notice more speckles on my ankles.  At this point in my life, it was almost exactly three years since my first ITP incident.  I was hesitant at first but then I decided that it would be best if I showed my mom.  Because my mom never really saw what I looked like the first time my platelets dropped, we allowed Janay to make the call on whether I should get looked at or whether it could wait.  

"We need to go to the hospital," she stated, calmly (in true Janay-fashion)

So that was that.  We found a Superstore walk-in clinic to see a doctor.  The doctor, Dr Dangor,  ordered a CBC, insisting that bloodwork was necessary before taking me to the hospital.  I remember the waiting room at the lab being so full that we couldn't find a place to sit so we asked if it would be okay if we could sit out in the hall.  They agreed but reminded us that we had to be watching for when our number was called.  No big deal.  So we waited and waited before mom stuck her head back in the waiting room to check what number.  It was on the one right after ours.  We missed it.  So mom, as pleasant as she really is, went to the counter and said a few "nice" things that convinced them to let us go in, despite missing our number and being prompted to take a new number.  Finally, I got my bloodwork done and we were sent on our way, assured that if there were any flags we would get a call immediately. 

Once we were all settled in at the hotel, getting ready for the wedding dance, my mom received a call from Dr Angel (no, I am not making these names up). Dr Angel told us that my platelets had dropped to 16 and he wanted us to go to the Pediatric Emergency Room at RUH to get assessed and monitored.  Mom and I are convinced that Dr Dangor may have passed away due to old age before getting my results which would explain why a different doctor called us.  As soon as mom got off the phone, I knew exactly what was next.  Then the flashback came: needles. Then the tears started flowing.

All I could think was, "they don't know how to give needles and dad isn't here to save me"

Fortunately, I didn't need an IVIG treatment this time but I did need bloodwork periodically during my two hours of being monitored.  To our surprise, my hematologist who was out of the country as a guest speaker, called the RUH Pediatric ER to make sure things were running smoothly and offer her expertise if anyone needed.  I needed her more than ever.  Although my counts hovered at about 16 while I was being watched, Dr Sinha and the hospital staff believed that I would be safe to go.  After this ordeal, I realized that I was so caught up in my own fears and worries to even notice that my mom had only finished curling HALF of her hair!

Let me tell ya, the hospital has never been something to stop me from having fun! As soon as I got out of there, I insisted on going to the wedding dance.  I can assure you that I made the biggest fashion statement: green and purple fuzzy pyjama pants with a bright green bunnyhug that had "YOLO" printed on the front although mom was a close second with her wild hair!

Photo of the YOLO bunnyhug 

Prior to the follow-up appointment with Dr Sinha, I was told to come up with as many questions I could think of to ask her.  When the time came, there was only one, major question floating around in my head:

"Dr Sinha... can I still play volleyball?"
"I guess so, as long as you wear your helmet!"

I don't know if I was more amused that she thought that volleyball players needed a helmet or thrilled because I could still play my favourite sport.  To this day, Dr Sinha is one of my biggest inspirations.  She taught me SO much about ITP and different aspects of health while I taught her about sports and the proper equipment.  I will forever be thankful for all that she has done for me.


Of course, we learned a few more things from this experience:

1. Needles don't hurt as bad as the aftermath of landing on a volleyball with both feet
2. RUH nurses are much better at giving needles 
3. Dr Dangor's life may have been in more danger than my own.. but we'll never know
4. Mom is really good at talking her way out of more than just speeding tickets..
5. It doesn't matter what you wear to a wedding, you can still have fun
6. We are the most high maintenance crew to travel with
7. Although mom is capable of driving a brand new truck without crashing, she is very capable of getting us lost... more than once
8. You Only Live Once (YOLO)

This was the second time my platelets dropped to another critically low level.  Personally, 16 isn't too scary for me but it causes quite a scare for most people.  As a rule, under the expert advice of Dr Sinha, I wasn't to be treated unless I dropped to less than 10 platelets (10 000).  Still, we do not know what is causing my platelets to drop but we are anxiously waiting for somebody to find an answer. 

Your fragile friend, Tianna

The Beginning

It's hard to believe that someone's life can be changed, altered, or flipped in just one day.  Little did I know that when I got my diagnosis, I wouldn't just be on the next page or chapter.. my life became a different genre, foreign to what I had ever known before.  If you know me well, you'd know that I HATE change.  Due to that, I have the same bedding on my bed from when I was just a toddler.  Still, to this day, nothing is more comforting than my white blanket covered in purple lilacs.  My mom would tell me that it's time to replace it because it's getting old and has nail polish stains on it... Personally, I think Janay's artwork builds character and gives it a unique look. With that one, minor example of a major part of my personality, you can imagine how clueless I would have been when I was experiencing "a weird rash" and "lots of bruising" that has never happened prior to this.  That was just the beginning.

The last of the bright, colourful leaves were hitting the ground in the final few days of fall.  My dad was busy with his 6-man football team as he held practices every morning before school, preparing them for the provincial run of the season.  His love of football radiated and became contagious.  I completely blame him for my obsession and love for the game.  According to my baby books, I had been to a provincial final in nearly all the sports before I was a year old.  I likely had no idea what was going on in any of those sports aside from football.  I was the pudgy baby on the sidelines that would raise her hands and cheer as soon as the Carrot River Wildcats would get a touchdown.. which was something my dad took pride in because his coaching skills were working on the field.. and off the field. 

It was late October when my dad was holding down the fort while my mom, who is a Registered Nurse, was away at a Diabetes conference in Montreal, Quebec.  Of course, as a nine-year-old, my biggest concerns were how on earth dad was going to do my hair (because it wasn't wacky hair day this time..) and what I was going to be for Halloween.  Those worries became the least of my problems.  I was new to the high school as a grade five student at the time when I noticed this really weird rash so I called my mom.  

"Is it bumpy?" No.

"Is it itchy?" No.

"Is it on top of your skin?" No.

She was puzzled and encouraged me to go to the doctor.  Although I had this "rash" and more bruising than normal, neither my dad nor myself were too terribly concerned because I didn't feel or look sick.  We actually decided that it was kind of interesting how my skin was becoming full of speckles.  That's when my little sister, Janay, decided to state her opinion on the matter. 

"Daddy, Tianna needs to go to the doctor.  Something is wrong." 

Of course, we knew it wasn't normal but we did not see the urgency until Janay, seven-years-old at the time, seemed so convinced and set on what the next steps needed to be.  Finally, we went to the doctor. My "rash" got the name petechia.  Basically, I had tiny blood vessels breaking under my skin. If you imagine dotting yourself with a red pen, that is what my petechia looked like.  My doctor ordered an urgent CBC (Complete Blood Count).  My results had the letters "LL" beside one of the counts...

LL - Platelets - 1

This meant that my platelet count was dangerously low and I was at an extreme risk of a potentially fatal bleed.  Most people don't even know what platelets are; I know that I didn't at the time.  Basically, the blood is made up of white blood cells, red blood cells, plasma, and platelets.  Platelets are what help our bodies clot.  They help to heal bruises and cuts.  When someone's platelet counts are low, they are at a higher risk for bleeding.  I didn't understand what the big deal was at the time because everybody will bleed if they cut their finger or pull out a tooth.  I learned that the biggest concern is not the external bleeding so much as the internal bleeding.  

Platelets are measured in thousands.  A normal person has 150 000 - 400 000 platelets (150-400).  I was at 1000 platelets (1).  This meant that a sneeze or a headache could cause my brain to bleed.  Fortunately, my doctors knew exactly what to do and how to treat me.  

Once we received those results, the game plan was made quickly.  No matter how many times the X's and O's got rearranged, this game plan did not make sense to dad, or anybody except the doctors.  Dad called my mom to tell her what was going on. 

"Tianna's templates are low"

"Templates??"

"Yeah... like she could bleed to death"

"OH! Platelets! Her platelets are low!"

Needless to say, my mom has a much better understanding and wider vocabulary when it comes to the medical field.  Dad and I packed a bag with some clothes, toys, and homework before we hopped into the little green car that was named "Old Pam".  The car got us from Carrot River to the Prince Albert Hospital.  Dad grabbed my bags and placed his hand gently on the small of my back.  I cannot emphasize enough just how gentle he was.  Honestly, I don't recall him even having his hand there because he was so gentle yet there was a bruise on my back, exactly where he had his hand, in the shape of his hand.  Hopefully, that will give you an idea of just how fragile I really was. 

I remember all the nurses and doctors busying around with other patients, weird noises, beeps on machines, children crying... just about everything you'd expect to see in the pediatric ward of a hospital. Then it was my turn.  The staff turned their attention to me and it was time for my IV (intravenous).  I had only had flu shots and immunizations prior to the bloodwork earlier in the day.  I didn't think anything of another needle because I had never had any issues.  Boy was I wrong. 

The nurses tried and tried and tried and tried to get an IV in me but nobody could get it.  I have a pretty high pain tolerance but by this point, I was hysterical.  I still have marks on my arms and hands from where they poked me that day.  Dad kicked everybody out of my room because he knew how much pain I was in and how scared I had become.  I recently learned that my dad had a similar experience when he needed surgery on his shoulder which explains why he acted the way he did.  About an hour later, the staff came back to try again.  As soon as I realized, I hopped up off the bed and ran into the bathroom in the room and locked the door.  There was no way I was getting poked again, I thought. 

Eventually, a nurse named Cagey got my IV into my right forearm.  I named my teddy bear after her. At the time, she was my hero (next to my dad who tried to save me from them). 

The rest of my stay at that hospital was kind of a blur.  I remember how difficult it was to do my homework because I couldn't use my dominant right hand.  Believe it or not, my dad wouldn't do it for me even though his dominant left hand worked perfectly fine! My sister and grandparents came to visit the next day.  Janay made sure that she found my DS and a bunch of games so that I wouldn't be too bored.  The best part about my hospital stay though was the ice cream they gave me at every meal.  Hospital food is "wannabe" regular food, in my mind, but ice cream is good no matter where you are or what time it is.  My mom came home from her conference and stayed the second night with me in the hospital, allowing dad to get a better sleep in a much comfier bed.

Bloodwork the final day showed that my platelets had responded to the IVIG treatment (Intravenous Immunoglobulin) and I was free to be discharged.  Although my platelets returned to the "safe" zone, I never reached the low end of normal and I am still yet to do that.  

After this episode, we learned a few things:

1. The body does not have anything called a template
2. The football team will survive if Coach Schmaltz leaves an intern and the drama teacher to coach a game
3. "Old Pam" can safely travel 179 km to Prince Albert.. and 179 km back home
4. Dad should focus on sports, mom can focus on health-related issues
5. Needles suck but being sick sucks more
6. Ice cream is the best medicine (I already knew that.. just proving my point)

Enjoying my ice cream!

I was diagnosed with ITP (Idiopathic Thrombocytopenia Purpura) and I am quite sure my response was, "English please??". 

Never in a million years would I have thought that the best way to describe me would be as "fragile".  

ITP is an autoimmune disease that has become chronic for me. Basically, my immune system is attacking my platelets because something has tricked it into believing that my platelets are foreign invaders. Nobody knows the why behind it. 

I am planning on writing about my experiences, what it's like to live with an autoimmune disease, and how ITP has impacted me as a way of sharing something that is kept in the dark and as a way of coping.

-Your fragile friend, Tianna