Amazing!

Made by: Uncle Francis

I want to start off by saying how incredibly lucky I am.  Even though I might be a bit down in my luck in the illness department, I am rich in amazing, and supportive friends and family.  I consider myself so lucky to be surrounding by such a strong group of people that can pull together and hold my hand through this insane roller coaster I seem to be on. 

Five and a half years ago, I was lucky enough to meet some fabulous women, all with children the same age as Carter.  We all bonded over the insanity and beauty of what motherhood is, and happy to say these lovely ladies are still my friends.  Since Brinley's diagnosis, each of them has rallied around me and has given me amazing strength to keep this fight up for my baby.  March 5th they are holding a silent auction to raise funds for Brinley and our family. 

I'm also moved by the amount of people who have approached me to find out what they can do to help, or what they can donate for the silent auction. Simply lost for words, stunned by all of it. 

This is the first time I have been excited in a LOOONG time. Which brings me to wonder, "how can I pay this forward?" I wonder what people do when they do not have the amazing support I have? Is there a committee of people that dedicate their time to organize events to raise money such as this?  I know there are foundations for hospitals etc...but what about the families?  Hmmmmmm food for thought.

On a side note, I am happy to report that Brinley and I danced our heads off today.  Just hung out and danced. It was an awesome moment, and made this week SOOO much more better.

too much

Lately I've been feeling overwhelmed, stressed out, and frustrated.  Not so much with cancer, well OK a little, but I'm getting ahead of myself here.  Blake started work in august for a company called matrikon, matrikon was bought out by Honeywell in June, and the take over started in January.  With that comes a whole new ball of wax of expectations, goals that need to be met, and some of those goals seem absolutely unobtainable. I worry about the stability of my family which is so important and precious to us right now, I worry about my husband being stressed out over his job, and working himself stupid about business deals, and sales. I can only guess what will happen if these goals are not met, which scares the crap out of me.

Brinley getting her dose of chemo through her IVAD

Brinley has her good days and bad days, I've noticed more and more of her hair falling out as the days go on.  Her eye lashes and eye brows are falling out, and the little hairs on the back of her neck that I use to love to blow on to watch her squirm are no longer there.  There are times where she is wired with energy and there are times where her legs are so wobbly and weak that she has to crawl around the house, or be carried.  I watch her go up the stairs and she's unsteady and requires the help of an adult, or the railing, there are times where she loses muscle control and falls to the ground.  Unlike a trip, or a stumble, it's as if her legs have turned to gel and she just crumbles.  Her appetite is another thing I worry about, she is now 32 lbs, and doesn't eat much of anything.  Next Monday we will meet with a nutritionist to see what we can do about keeping her weight stable, so she can stop losing so much.  She will also have another heavy dose of chemo, 50g higher than the last dose.  This weekend while taking her antibiotic she projected all over the couch, I called the doctor and he told me to hold off on it until he seen us again.  He said there was another method, it involved daily doses instead of the, Friday, Saturday, and Sunday dose.  Typically with septra, there is no way around the taste of the need to vomit, the medication is very hard on the stomach, leaving the toughest adult doubled over sick to their stomach.

Needless to say I'm a wreck this week. In a constant state of "what if". Maybe I just need a good night sleep, maybe I need something more.

tiny dancer

This week I miss my little Brin.  Since her last doctor appointment she has had more energy, but that kind of energy is usually met with a huge crash at the end.  Some days she does well, and is full of life, and there are some days where instead of articulating what she wants, she screams in rage if you guess wrong.  I find myself playing the guessing game more and more as the days tick down, and the more we play, the more furious she is with me for not knowing what she wants.  It can be something like wanting food, which starts off as, "I'm hungry" I ask what she would like and she screams at me, so I offer her a variety of snack ideas, all things I know she loves, and she screams at every suggestion.  I eventually have to just walk away, and let her calm down enough to tell me what she wants, and in most cases she's worked herself up so much that she feels sick and her appetite dissipates. This seems to be the ebb and flow of most of my day that leaves me scrambling around the house for the correct toy, or the perfect snack.  There are times that it has nothing to do with an object, sometimes Brinley is just miserable because someone looked at her wrong, or Carter was being "mean" trying to resolve this is also a task because she won't tell me exactly what happened, or what was said, again, she screams.

I can only imagine what is must feel like, in her little body, all those chemicals floating around, all of her organs feeling strange with the medication.  I know how I feel when I have a common cold, or a flu bug, you just feel off your game, and strange all over.  So I cannot fathom what she's experiencing, her whole body must feel like an intruder.  The kicker is that we're only 2 months into a 2 and a half year struggle now. 2 and a half years, we haven't even put a dent in it yet, we're still newbies at this.  I miss my little girl.

Monday night she found her ballet bag, everything was still in it from the last class she attended in late October.  She spread out her slippers, tights, wrap sweater, and bun nets all out on the floor in front of her and said, "when I get better, I'm going to dance and dance and dance forever, and nobody will stop me"

...no, no one can stop you baby.

...Lets be clear on a few things.

This week has been slightly insane, intense, and frustrating.  Not because Brinley under went another lumbar puncture that resulted in headaches, and vomiting, and not even because we had a dump of snow, and now face 7ft snow banks and an unplowed road.  But because an article was written in the Williams lake tribune that made me feel, uncomfortable, and quite frankly, pissed off (for lack of a better word)

My mom wrote a lovely story for the local news paper, of the town I grew up in.  It was a story about Brinley, and it was told from an adoring grandmother's heart.  She explained how her granddaughter was prior to cancer, and what it means for the next 3 years of Brinley's young life to have cancer.  My mom submitted the story and was then told that they would have to call me to confirm the story and to get permission to put it in the paper.

I received a phone call from the tribune and was asked a variety of questions, not once did they inquire what kind of child Brinley was, instead she was treated like an object, not a child battling a life threatening illness.  The editor, Robyn asked me about financials, and the golden question, "how has this changed your life?"  Well gee...how does it change my life?! It alters my universe, it changes who we are as people, it will forever alter my daughters path.  Ask a survivor of cancer how it has changed their life, ask person who has lost someone they love to this disease, "how has it changed your life?"  I despise this question, it's so impersonal, and lacks sensitivity.  It's quite simple, cancer changes your life in ways you cannot articulate, you're whole world turns upside down, and no solid foundation, the best you can do is grasp at straws and hope you can find 5 mins out of your day that will bring you a moment of peace.

Back to the article.  It was written poorly to say the least, it made my family look as if we were expecting hand outs, which is not the case at all.  My family will make it through this, we will remain in tact and we will BE FINE. We will struggle along the way, but we're strong, my daughter is strong and we will beat this.  The article made Brinley look as if she was an object, just a "thing" they never explained what kind of little girl she was before this, or the amazing little girl she is today.  I told Robyn if she needed more information about my family, and how we feel, and cope day to day to read my blog.  Obviously she didn't go in that direction, obviously reporting a touching, heart filled story was not important to her.  So why do it at all?  To fill needed space? I'm disgusted either way, my daughter is not a pawn, she is a person. She is an alive, living, breathing, surviving, 4 year old human being, and when you report on such a topic approach it with a little bit of humility and compassion, do your research and try not to upset the mother of a child with cancer.


That's all I've got for now.

Changes

It's taken me a few days to sit down and write, yet again, seems that every time I try to make time, I get pulled away.  Not today friends! 


My boys with their shaved heads



This week has been particularly hard on all of us, unfortunately we had to say goodbye to our two kitties.  Blake and I have had them for years and years, heck, they could have been considered our first babies!  But due to Brinley being sick, and at risk of neutropenia (unable to fight off infections) it was for the best.  Not just for us, but the cats have been acting out for a while now, and started using my dining room carpet as their own personal litter box.  After using every trick in the book to prevent them, we eventually had to rip up the carpet and replace it.  That being done we thought that the cats would stop...nope they found a new place.  So after sitting down and talking about it, Blake and I both concluded that the cats were obviously unhappy and they needed to find a happy home.  On Saturday I loaded them into the back of my jeep and took them to the SPCA for adoption. I cried my eyes out, it was much harder than I had anticipated, but I had to suck it up, and move forward.  It seems to be a familiar feeling. Keep calm and carry on. 

I called my mom crying because, honestly how much more can I take?

This Thursday Brinley had her lumbar puncture, and it went very well. My Thursdays usually start off at 6am. I get myself ready, brew some coffee, fill out Brinley's charts (her medication doses/times/reactions/bowl movements) everything is documented in case there is a hidden red flag, the doctors and myself have a reference.  Then I get Brinley and Carter ready for the day, pack Carter's school snack, and make sure his homework reading sheet is filled out. Brinley is usually a train wreck in the morning.  She cries about being poked and having to have her lumbar puncture, which she refers to as her "big sleep"  it also means no food. I put her "magic cream" (numbing cream used over the IVAD to avoid any discomfort) And away we go! Last Thursday my friend was able to watch Carter in the AM and take him to school, then Carter took the bus home because Blake was home.  Thank goodness for friends!

We arrive at the hospital at 8am and the nurses access her IVAD, flush it with saline (which according to Brinley "taste yuck"), and draw blood then they send it off to the lab.  Around 9am we see our Dr. and go over the weeks events (this is where my charts come in handy). Then we wait for the LP...usually scheduled at noon. It's a long day, thank goodness "the beach" is there to pass time or else Brinley would be going stir crazy.  It even seems longer if Brinley isn't well, and then all she wants is to cuddle and sleep. Usually her LP's go very well, but I have seen my daughter go under anesthetic 8 times and it doesn't get any easier. My heart just aches watching her little body go limp and they shoo me out of the room.  The LP takes about 40 mins, enough time for me to grab lunch, read a few chapters in my book then head back up to oncology before she arrives back. After ALL of that she's usually good to go home, they check her vitals, and de-access her IVAD. Then we go home.  This week I was happy that her personality didn't, she was still bubbly, fun and very old diva Brinley.



This was taken the day Brinley went into the hospital for being "sick"
before she was diagnosed.

 On a side note I'm noticing Brinley is becoming more and more familiar with her illness.  She reminds me before bed, every night, "momma, don't forget my chemo at night time", or "all of my hair is falling out because I have chemo all the time, and when my chemo is over my hair will come back".  She also knows what oncology means, and that she has cancer...these are all words I wish she never had to learn, words, and phrases I wish were not part of her vocabulary, and she was still ignorant to.  But they are, and she's not...and this is our life, this is her life now.  I'm sure it will make her a stronger person, I'm sure we're all getting stronger day by day, I just wish it wasn't so hard.

Holiday Joy

Now that the holiday insanity is over, I finally have a moment to compile my thoughts into yet another blog.  This year was great, even with everything going on around us, I am happy to report that it was better than I had expected.  The kids were thrilled to see their grandparents, they absolutely love their gramma and papa.  I also am thankful for them, through this they have been the best support system I could have asked for.  I realize that it must be killing them inside to watch Brinley go through this.  The last time they seen her she was out of the hospital, and happy to be home, but this time around we had to deal with migraines, vomiting, and grouchiness.  It's particularly hard to my dad I think, he's a light hearted joker, who bounces freely around the kids making them laugh their heads off.  Brinley was more or less irritated with it this time, and I felt bad for him because I know deep down all he wants to do it make her happy and smile, even at a time where it's impossible to do so.  I love my dad for that.  For the strength and determination he shows even when I know it's not what he feels inside.  I am incredibly grateful for my mother.  She bares a lot of the brunt, particularly from my frustration with this whole situation and I become short with her when it's unwarranted.  She never lets it get to her....if it does, she never lets me see it.  She's been a huge strength source for myself and Blake as well, and even though I can't verbally say it (in fear of getting completely choked up) I love her for everything she does.

So mom, dad, I love you.

I am also thankful for my beautiful lovely friends, and family.  You all have been so wonderful to our family and our little girl, and I appreciate every kind word, and gesture you do for us. 

Alrighty moving on. 

This Christmas both kids were thrilled, they had selected only a few toys each and wouldn't you know it, Santa got them every single one! Even some they didn't know they wanted, as Carter puts it.  I was also happy that my bestest friend from elementary school came to visit us, I always love it when the Isnardy family comes to see us. It brings me back to easier times, and it allows me to really laugh and step out of myself for a moment and look back at the "older times"  It was the best present ever this year.

Brinley has been doing great, she is still deflating and I notice it more and more everyday.  She had a few complications over the holidays due to her last lumbar puncture.  Because she had leaked spinal fluid during the last procedure, she had a weeks worth of painful migraines, fluctuating temperatures, and of course, vomiting. I spoke to the oncologist on call a few times and he suggested giving her coke, and codeine...interesting, but it helped ease the pain and pressure from time to time.  On Thursday after a whole week of a sore head, she didn't have a headache, but of course, being Thursday, and Thursdays are our days at the hospital, we had to take her in for another LP.  Lucky for us, because of the headaches caused from the last LP, they gave her the week off, and adjusted her protocol by a week...so yay! no LP! and no headaches!!!  They said it wouldn't hurt because her blood work was good, and there was no risk, especially since she has oral chemo once a day. 

I'm happy to report that she is now playing much much more, usually in her room with her ponies and barbies, but she's happy to sit up there and play for hours by herself, I think it's peaceful for her, and I'm all for peaceful at this point.

Well that is all I have to report today, I hope everyone had a great time ringing in the new year, and saying goodbye to 2010...I know I did.