Last post I spoke about Kali's last hairloss and how this initiated the creation of the Massacure.
I've been thinking about her battle a fair bit lately, as this reminds me to try to push glitches and fatigue aside for a moment and reflect on why we fundraise.
Running an event of this magnitude in your child's name is no walk in the park. It's hugely taxing on myself (as the operator) and the entire family. Aside from the exhaustion of it all, the emotional component is at the forefront. Reliving our story is extremely painful, leaving no opportunity to rest from it's memory. It's a continual rub of salt into an old wound, and I don't believe the child or their family completely heals from that. In Kali's case she has blocked most of these memories, and I hope for her sake that she can remain in the dark, but somehow I don't think it works that way. Eventually they will resurface.
I rarely do this, but divine intervention has again messaged me to share a bit more of her story.
In Sept of 2000, we were up in Lac La Biche (Plamondon) visiting my dad. It was the yearly local celebration that ran over the long weekend. Kali was playing at the park with Kyrsti and she fell with her sister landing on top of her. As I consoled her, I noticed she looked quite unwell.
As I drove back to Dads house, I looked back at her in her car seat and noticed blood trickling down her neck. It was coming from her mouth.
Further investigation showed the blood to be coming from her gums. It stopped quite quickly so we believed she has sliced a piece on the gum, but over the next two days Kali became lethargic and grey, unable to walk. Kali miraculously got an appointment the next morning with our doctor (whom is a good 4-6 week wait). That morning her little body was covered in little red dots. I had never seen those before. Petechiae is what they are called, a symptom of extremely low platelets (hence the bleeding gums). I sensed her doctor knew just looking at her and sent us for bloodwork immediately. I felt a chill go up my spine. The docs body language and the fact that she told me to go straight to the lab at the hospital and not to stop for coffee gave it away. It took 30 minutes to get blood from our daughter. Her veins had collapsed and she was fighting the nurses. It took 3 of them to hold her down. I went to my moms in ST.Albert directly from the lab and waited. I knew it was going to be bad - but honestly not as bad as what I was told. Within 30 minutes I received a phone call from our doctor telling me to bring Kali to the Stollery to the oncology ward. Leukaemia. Gord came immediately and we took our child in, still believing this was sounding and feeling much worse that it was going to be. After all, Kali nursed for 16 months, ate organic food, and lived in a chemical free home. With my background in the wholistic field, the unspeakable could not be possible.
Then reality hit. A nice young doctor explained to us that we needed to prepare to be there for the next month, and once the pathology report was sent, it would take 12 days to determine what type of Leukaemia she had. I was still just trying to get me head around the fact the we were not leaving, but literally moving in. Still, must have been a mistake. Couldn't be cancer. That happens to children who's parents smoke around them, only feed them junk food, and fail to nurture (was my perception at the time).
A technician came in to take Kali's blood. Not the warmest or the gentlest soul you would ever meet. Not a good representation of the amazing staff we later experienced at the Stollery.
2 1/2 hours and 4 people (including Gord) to hold down our panic stricken little girl while this heartless robot pursued with the torture. I couldn't do it. I broke down while Kali begged her dad to make them stop. I desperately wanted to hit the technician, harder than I've ever executed a punch in my many years of karate. I don't know how Gord resisted the same temptation, but deep down he knew this had to be done.
Her 4 extremities looked like hamburger from the many attempts to put in an IV. Later the nice young doctor was heard tearing a strip off of this technician. Our daughter was soaked with sweat and shaking from the fear and pain of it all.
Parents are supposed to be there for their child, protecting them from harms way. Knowing that our baby begged repetitively during the course of her treatment, for protection from her parents, while we continued to be involved in the acts of force is heartbreaking. The look of hurt and confusion in her face each time we assisted in holding her down for procedures have scarred us forever. Many a time Kali cracked syringes and spit the chemo back in the nurses faces. She was a feisty girl back then. Eventually her spirit left her and she just became weakened and complacent. This continued for many years after, developing as the shy person she became for so long. (thank God that's changing).
The first month of aggressive treatment was to hopefully get Kali into remission. It was shaky and there were many prayer chains for her. Upon arrival her white cell count was at 99% cancer, her red cell count was at 45 (that explained the crash cart next to her bed), and platelet count at 13 (should be a 450). Cardiac arrest and bleeding internally and were prioritized. The nurse later told us that had we waited any longer that day to bring her in she would not have made it. It was many blood and platelet transfusions that first week that saved her.
That month was simply a nightmare (but not that last). There was 33 of them, chemotherapy everyday. Kali's frail little body ballooned up, gaining 10 pounds in 3 weeks from steroids. It seemed that the ongoing morphine could not touch the pain. Sleep only found her (and us) for moments at a time between pain and ongoing IV alarms. Kali's body was continually soaked with sweat that smelled like chemo. We would wrap her up tight in blankets as she had chills and could not seem to warm up. We changed those little striped jammies 3-4 times a day, but within moments - soaked again.
At the time there was only 2 rocking chairs (out of 14 rooms). (We later donated 12 chairs from our first headshave). We would fight for a chair as this seemed to be the one thing that took the edge off, even though she continually moaned non stop. We never left our daughters side through her entire treatment.
This resulted in the immediate loss of my job and the collapse of Gord's thriving business. In no time, we were left with no resources. We watched parents leave their children without a thought to it. A 4 year old boy died with my friend Claire and a nurse at his side because his parents couldn't be bothered to be parents. There was quite a lot of that. Even in emerg, parents would drop off their children on the way to work and pick them up after. I was a real eye opener. It was also eye opening to realize how many of our closest loved ones ditched when we we in our darkest moments.
Kyrsti missed her little sister desperately, and likewise. She celebrated her 4th birthday in the hospital with her best friend who was too sick to help her blow out her candles. Kali only managed a smile when she saw her "Kirtsi". During the really rough spell, Kyrsti felt that Kali went away for a while and this "other Kali" was not really her. Meagan being 14, was in charge for the next 3 years and took care of Mandy and Kyrsti. She was already a responsible helpful kid so this was not too much out of her element. The girls became closer I feel as a result of this trauma in our lives. They were hurting so bad that they could not bring themselves to talk about it with anyone.
Kali's hair started to fall out in chunks. Much like the other kids, it's heartbreaking to watch. One little girl we roomed with (who is on 2 of our videos - who shaved, mom is crying and holding her) lost her hair in hours. Woke up from a nap and half stayed on the pillow. The rest gone by the end of the day.
Kali's took one week. She had only a few sprouts left and I knew I needed to clean it up (it looked awful). I had a friend walk me though the process of shaving over the phone. It took all the strength I could muster to shave my daughters head. Tears were falling down both of our faces as the few remaining wisps hit the sheets. Kali did not understand what was happening to her, much like everything else. She believed for years that it was my fault that she was bald. We had carefully hid the hair from her and with no access to a mirror, she did not know. It's interesting but to this day the sound of the clippers brings me back.
You can imagine what we went through when Kali chose to shave in 06. Despite our desperate attempts to talk her out of it - we endured it all over again. (It amazes us that she wanted to and enjoyed the experience so much, she did it again the following year).
The next 33 months were mostly difficult with a few perks along the way. I will elaborate more in posts throughout my blog. Make-A-Wish was one (that I will also include sometime).
For now, I can no longer continue.
For the record, we run this event because it's the right thing to do. I don't want to come today across as though we get nothing back. We do. There have been many great and wonderful things along the way to offset the difficulties.
Thanks for reading our story.
