Karma and Kali's yearly test

Before I talk about Kali's appointment, I'm gonna share my Karma story.

My last post talked about my visit with my pregnant cousin (Nicole), where I picked her up with my daughters Firebird and entertained myself watching her struggle to get into the car. :)

Well... I put out my lower back in karate class the night before and so karma caught up with me when I attempted to fold in into that same car yesterday morning. Anyone who has sat in this type of car knows it sits very low and is difficult for the average person to get into. Getting out was even more challenging and very enjoyable for Kali watch on the way to her tests.

When I parked, slowlllly got out and attempted walking, it appeared that I aught to be the patient instead. Tim Conway entering a crosswalk is not favourable to those impatiently waiting in their cars. Will this teach me a lesson about finding cheap thrills in another's clumsy misfortune - likely not....

So....after all my going on and on about going to Stollery to visit Rayne and feeling all messed up for it, Kali had her yearly check up and tests in Peds Oncology (4E2) yesterday.

I hadn't slept the night before, which is rather silly considering I have no control over the situation.

Kal and I did our traditional stop-in for a tea and a breakfast sandwich (which has been tradition for the past 9 years). Used to be as a bribe for her... now its more of a bribe for me.

I was pretty much behaved in clinic this time, not saying I didn't voice any opinions - just more behaved.

I have no qualms about stating any objections in clinic, this would typically be more of a communication issue more than anything else but I am THAT mom that wants to know "why" and "how" and "when"....., a little assertive with the inquiries and opinions but hey - this is my child and I dont take cancer lightly. Gord is the same way.

I am not the kind of neurotic mom that takes her child in to see the doc for every little sniffle or cough, or even a sprain for that matter. We just manage most things at home with the many years of naturopathic medicine I practiced and studied. Chase the girls around, take down / choke hold, pour Eye of Newt down the pie hole..... fixed. When I go to the doctor its for an Oncology thing or because someone's arm is hanging by a tendon.

So... anyhoo - after Kali's check, we scooted over to visit Rayne before heading home. My guts in a twist hoping my cell would not ring asking us to return to clinic. Rayne was grumpy and I didn't blame her... so was I. I was ready to leave Stollery.

Took me 5 minutes to get into the darn car and then it died on the way home. :(

My Toyota Massacar would never have done that to me (knock head).

Thank God for my son-in-law Steven. He came to our rescue and boosted us, BUT in order to reach his cables to mine, we had to push the car to an empty area in the parking lot. Again, Kali was entertained.

Getting out of bed this morning was a full drama production.... a little opera singing, some yodelling - the kids raked me over the coals for it.

Car needed repair so I sucked it up to sorta helped (in a feeble way...L to forehead.)

Gord and Steve came over to rescue, and the car is now operating, however it is a Firebird so the next repair is right around the corner.

Cancelled all plans for the day, but no one is feeling sorry for me and it's all because of karma.

I ended my evening with a very enjoyable conversation with a good friend (Deb) who recently moved from Stollery to Sick Kids Hospital in Toronto. She is irreplaceable and very much missed.

I am going to bed expectating that tomorrow I will be back to normal, at least my kinda normal.

summer update

Today's post is meant to break up the series of the last 4, and offer something lighter.
it's 4:00 am..... I'm still up. Good time to write a blog.
Earlier this evening I visited with one of my favourite funny cousins who is now pregnant. Our plan was to go to Cheesecake Cafe and scarf down some serious calories.
I thought it would be fun to pick her up in my daughters car (a firebird). Perhaps should have thought that through.... or, nah........
Watching a very pregnant lady try to squeeeeeze herself into a low car like that was way too much fun. I was no help, it was so cute to watch and I will definitely do this again (perhaps with a towel on the seat, just in case).
Anyhow... ordered "decaf" with my traditional choice - Calebeut sundae (which I will add was my one effective perk during Kalis treatment).
I am kinda wussy when it comes to alcohol and caffeine. Doesn't take much to affect me. No coffee for this chic after 5:00 pm. Thought it might be safe to have decaf....why I never learn is beyond me. So here I am.....

As Ive mentioned earlier, summer is a weird season for me.
By far, my fav in so many ways, particularly as it represents freedom. The kids are off from school, and Massacure is resting.....this means Tammy is resting.
This is a necessary thing because my adrenal glands are spent, stress levels through the roof (they call this event exhaustion). I need this time to quiet my brain and body so I can be on my game for September when I begin seriously preparing for the next event. So, why am I off during the summer (going back to my "weird" comment)? Is it a guilt thing? I AM born and raised Catholic...
All I want to do is curl up with the girls and watch old episodes of Golden Girls, drink copious amouts of tea all rigged up with catheter. Thats what I imagine doing, however could not last too long as I get bored easily.
I picked up our 75 new plaques today will be sorting them and distributing them, also working on the 2011 promo video (which I do every summer). I've sorted through about 5,000 pics, cropped / enhanced some, selected my favs and dropped them into promo. This is very time consuming as I take this opportunity to study faces so I can recognize some of our many volunteers and participants. Thank God for our awesome photographers that come out to volunteer their time (Romy, Chantelle, Doreen, Claudine, Lynn, ) this combined with Nicki's, Kyrsti's, and my own (I take nearly 1,000 myself that day on the run).

I also cleaned out my billboard (my van known as MassaCAR). After I vacuumed all of the Kali Bear fur, and scrubbed the pink stains away on the seats and headrests, it looked pretty sweet. So much for my "non" shedding dogs..... I still use a lint brush.

I will be meeting with Gloria Meldrum (G Squared / Little Warriors) next week to go over marketing ideas. Need a bit of an improved plan for next year.

Tomorrow is Kalis check up in 4E2 at Stollery. It's that dreaded ?? over our heads and recalling various parents that took their child for their check up and didn't go home (relapse). I'm sure she will be fine. At any rate, we will visit our friend Rayne who is now back due to complications.
Keep you posted on how THAT goes.....

Summer Update

Home from the hospital

This post is a continuation from the last 3, starting with "Praying for Rayne".

Rayne is what actually triggered my memory about our first transition to and from Stollery, and it sure seems stuck in my head so I am going to continue to write about it.

My hope it that it offers insight.

On the same token .... once it's out there, I hope it's out of my head.

It's been especially difficult thinking about the past because of the initial trigger with Rayne's stay at Stollery, and now I am working on the new Hair Massacure video (promo 2011), and so this is at the forefront of my mind. In each video I select 2 songs that I feel best represent the event for that year, rifle through 5-6000 photos and select roughly 3-400 that would be appropriate for each line in each song. Some of those photos are from the past. Many are of Kali, some are of other children (survivors). THIS is the most difficult part, much like retelling the story. Today the creation of the video began. Kyrsti and I, laptop and memories. Today is a hard day... so I ate some chocolate.

Back to "Home From the Hospital"...

I think I left off last post with our arrival home from Kali's first month in 4E3. Kali's eyes lit up when we arrived at our home and she was able to see her sisters again.

The sad part of her 3 years of treatment and nearly 9 months (accumulatively) in hospital (or at the Cross Cancer Clinic) was that the kids missed each other so much. Meagan stayed home and manned the fort, looking after Kyrsti and Mandy. There was little opportunity for the girls to spend adequate time with their little sister, as we lived nearly an hour away and it was difficult to get them all together for visits.

Once we arrived home, it was nice to be back in my own bed, and have Kali back in hers. Of course, she didnt last long in hers and some point past midnight she was sleeping between the comfort of her parents. This lasted, well..... lets just say it lasted. :)

I (we) never experienced back or joint problems prior to living in the hospital, even with the many years of karate, and ongoing rennos - my body just seemed to jump back after an injury (and with karate, there were many). 3 years of sleeping on the little foam mattresses they provide in each room (dont get me wrong - we were very grateful for that), and 3 years of rocking (several hours per day) takes its toll on one's knees. I wore a knee brace for 2 years following Kali's treatment, AND replaced the rocking chair after the first year.

There were only 2 rocking chairs in 4E3 (Peds Oncology), and 1 at the Cross Cancer Clinic.

Kali was nearly unconsolable (even with the morphine). Gord and I were rather aggressive about snagging a chair as this seemed to be the only means of comforting our girl.

On a sidenote - this is the reason our first headshave provided 14 rocking chairs to 4E3 in 2003 (little late for us to benefit from).

More than half of the night and most of the day was spent in the chair, strategically positioned next to her bed and IV.

At home the rocking continued, for hours at a time, often without a break. This was very difficult to care for a 4 year old (Kyrsti) as she too had needs (to play, eat, basic parenting). We were fortunate that Kyrsti was a super baby and was the easiest and most placid child in the world to care for, so that helped. Actually she was a big help to me to comfort her sister, but often was difficult to provide lunch for her when I could not get our of the chair.

Once the girls came home, it was nice as they immediately went into rescue mode, assisting with cooking, cleaning, or rocking.

The family made Kali our #1 priority even when others didnt quite understand what we were going through. Some understood and were very supportive, while others - quite opposite. It was eye opening.

I still have the rocking chair. I keep it in another room as I cant seem to let go of it, although cant be around its reminders.

More..... another day. Thanks for reading my story.

Cheers

part 2 coming home

This post is a continuation of my last one. I have been reflecting lately about what we endured taking our child home after her first month in Peds Oncology.
Initially it was a complete shock upon her diagnosis when we were told that were we not leaving the hospital for at least a month. Learning of her Leukemia was difficult enough to comprehend, realizing that we wouldn't be going home that day to pack or prepare was a shock to the system.

We had no time to adjust to the "new plan", the day was a blur. We went from an unsuspecting doctor's appointment to emergency bloodwork to diagnosis and admission at Stollery (4E3), unsuccessful attempts to IV a 2 year old with collapsed veins, to a crash cart at her bedside, ongoing blood tranfusions and a full time nurse in a matter of a few hours. Blood 98% cancer.

If it wasnt for the gift of life (blood), she wouldnt be around today.

It seemed that after the first month we were still not accustomed to her regime which involved checking vitals, temperature, administering chemotherapy several times a day, proper hydration, more transfusions, and physio to assist with getting her up and walking.

Her diagnosis came rather abruptly, much like her release - we were unprepared that she was going home.
All I remember was being panic stricken (both Gord and I). Kali was still having difficulty swallowing the 7 pills (7 times a day). What toddler is able to swallow a pill, nevermind 7 at a time? They could not be crushed or converted to liquid so a life care worker was assigned to work with her teaching her to swallow pills. Over time, it worked, but not before we were sent home, so this was very scary.

Also Kali was not walking yet, could not bear weight on her legs, and she was back in diapers. Her broviac (a central line that hangs out of the body just below the heart) was a scary device to care for. This is where her blood work would be taken, and the majority of her chemo administered. A lot can go dangerously wrong with a Broviac. They can get infected, plugged with blood clots, or accidentally yanked out of the body. Any of these situations can cause sudden death while it all happens at home. Needless to say, we did not feel ready to take our child home. She was still on morphine unconsolable and shivering with the pain and effects from chemo, and had the appetite of my son in law (Steven) from steroids (that turned our daughter into a swollen version of the worst case of pms Ive ever seen).
We begged the doctors to keep her longer, but it was explained to us that a child (in her situation, with vitals reasonably stable) would improve faster in her home environment.
The decision had promise to improve morale, normalcy, and definItely uninterrupted sleep (which is an impossibility in a hospital environment, particularly in Peds Oncology).
We reluctantly took Kali home, scared stiff and not feeling confident with the doctors decision.
Taking off those little striped jammies she had been in for the last month, and replacing them with her favorite dress (which did not fit due to her 10 pound weight gain) was the first step in Kali's transition back home.
I'll never forget the smile on her round little face when she was greeted at the door by her sisters.
It was that point that I understood why they send them home. That night we cranked up the tunes and celebrated her "coming home".
She was happy.... We were still nervous. It was hard.

To be continued.....

Going home

My last post talked about my friend's daughter who was released from Stollery yesterday. This became a bitter sweet experience for her parents when she was released. "Going home" is thought to be good news (as one would think...), but it's very scary.

My post today is triggered by what these parents went through on her release day - it reflects my own experience (Gord too) with bringing Kali home for the first time from Peds Oncology.

Yesterday morning I received a text from Rayne's Dad reflecting his concern for her release. The concern being that she continued to have a great deal of pain following surgery. I understood the concern. She was thrashing around through the night and very irritable during the day. When I visited her, I took note of how itchy this poor girl was, to the level where she was ready to peel off her skin.

Morphine. She was cranky and irrational - Morphine. I had seen THIS a few times before between Kali's one month of Morphine and Mandy's experience with it following her kidney surgery.

It's definitely necessary to take the edge off when a person becomes riddled with pain and nearly delirious, but not without side effects.

I was happy for Rayne's sake to hear the news that she was going home, but knew how nervous her parents would be around that. It's scary taking your child home from a safe environment where

there is constant medical attention. Anything can go wrong wrong outside that environment, and that means risk. It also means another 6-9 hours in emerg, and repeating the entire process all over again.

This is exhausting both physically and emotionally for both patient and parent.

I'm thrilled to report that Rayne is back home, playing her video games and eating hamburgers. THIS is the emotional / psychological component of sending the patient home, sometimes a greater value that keeping them in that safe place.

Gord and I learned this when our daughter was released after her first month in hospital. Kali was not even walking yet - not even close to bearing weight on her weak legs when she was released from her IV tower, and careful supervision in 4E3 (Peds Oncology). I recall us both being terrified. Gord and I tryied to convince the doctors to keep her longer. Who would check her vitals every hour? No crash cart nearby. Flush and care for her broviac, draw blood, administer oral chemo when she is spitting it everywhere? What happens if she fevers? These were all valid concerns, but the closing statement remained - "She's better off at home". We did not understand this until we popped our swollen daughter into the car (in her favourite dress) and watched her little face light up as we rounded the corner to the house. She hadnt smiled in so long. Having her sisters greet her at the door of her "home" was the best thing for her broken spirit, and it was then when we realized that we would get though the glitches at home, rather than in the safe and sterile environment of the hospital. It was worth it for her to feel some normalcy again (even though our version of normal was forever changed).

Next post I will touch more on "going home". For today, this is enough.

Rayne, I'm glad you're home.

Praying for Rayne

This post is about our friend Rayne.

Rayne is the daughter of a very dear couple (and Captains for Hair Massacure).

She just celebrated her 16th birthday at Stollery, and diagnosed with gall stones and

pancreatitus on the day of her graduation. Poor kid and Mom spent the night in emerg all decked out in their dresses.

Rayne's surgery was yesterday, this kid has been through the ringer.

It has been described to me by her mother that Rayne has a rare syndrome that resembles an interesting combination of Turrets, ADHD, Downs,

and Autism. She has a learning disability that disables her from understanding what is happening to her, and why these procedures are taking place,

including fasting before surgery and a "no fat"diet after. This girl is DONE with jello after eating it for several days and just wants a good old hamburger and mashed potatoes with gravy!

The morphine is making her itchy and cranky, and her high pain threshold makes her difficult to access.

We have been to Stollery 3 times to visit, and if you have read my previous blogs, I dont do very well in there anymore as my coping skills have diminished to a near

zero as everything is a trigger for a memory of trauma related to either Kali or Mandy. I am quite embarrassed to admit this, but because i wear it on my sleeve it would be ridiculous to try to deny it.

Rayne is admitted into one of the rooms that Kali stayed in (mind you Kali has been inso many - outside of 4E3 (Peds Onclology ward).

It is very difficult to go in there, as it just brings me back. A close mutual friend of ours (Jaime) is in the same boat with her daughter (who is also my wish child), so we both understand what

each other is experiencing being up there. Her daughter too has been in this room along with many others. I sat on the guest bed and remembered how I wratched my back in the 3 years of sleeping there.

I remembered those annoying alarms on the IV poles that go off every 30 minutes, and how the rooms smelled. Surprisingly I was able to eat there (after 8 years of not being able to).

That aside, now our friend Christie is personally going through hardship and we feel for her. We can't take it away, as their journey intends it to be for them, but we can be there to offer

support and guidance and for sure a sounding board. We could also be a sounding board for Rayne but only if we are armed with rain gear and padding as she is a wee bit grumpy.

Christie, bless her heart - still maintains a sense of humour. Christie and her husband Glen have endured quite a journey with their daughter which likely explains their passion for our cause.

They will do anything to help out their peeps, so now it's time for friends to hetheirlp them. THAT is friendship, and they have some great friends. I only wish I could do more....

I hope for a successful recovery for Rayne (and for yourself and Glen). Lets not forget what the parents endure (well.... most - the ones that stick around and prioritize kids) when their children are sick.