My family is perfectly imperfect and not a day goes by without humour, tears or tantrums. Blogging is the modern version of keeping a diary so feel free to read along while I share the good the bad and the ugly aspects of being me!

Monday, 25 April 2011

A Conservative and Traditional Mom's Secret


By all outward appearances from what I have been told I come across as conservative with my style.
I am an avid lover of button up sweaters, potted hydrangeas, aprons in the kitchen and the June Cleaver type homemaker. When my hair is long enough I generally wear it in a bun or pulled away from my face with a head band. My nails when done are fashioned in a french manicure and my jewelry while large is simple. My lips are rosy from cherry chap stick and my perfume is understated and called lovely.
My husband makes fun of me for saying things like "Oh My" and "Good Lord" and the general style of my home is family friendly and traditional.
There is a part of me though that is not conservitive and traditional - I love tattoo's.
Over the years they have helped me cope with some of the challanges that I have faced. Perhaps they give me a sense of control, or a visual reminder of what has made me the woman that I am.
All of them tell a story and all of them are about my kids.
Yesterday I got my fourth tattoo completed and it seemed to be done on a fitting date, Nick was born on Easter Sunday and I got the tattoo in support of him on Easter Sunday.
I also went against my "rules" and got it on a place that is not always covered ... on the side of my leg above my ankle.

While getting it done, the artist asked about Nick's cancer, treatment and outlook and expressed his sadness about how unfair life can be but also said how fun it was to do something that was so symbolic and full of color.
My friend Heather created the design, she listened to what I wanted and made something beautiful, The "N" is Nick's initial, the lavender ribbon is for Hodgkins lymphoma and the color and whirling & twirling vine style is to symbolize life and continuing to grow.
I am pleased with it and despite Nick jokingly threatening to "kick me in the tattoo" I know that he is pleased too.

Wednesday, 20 April 2011

CANCER according to a little brother with autism

As told by Kurt who is seven years old.

My brother Nick has a sick called enemy cancer, that means that his bad enemy cells are going crazy and they are fighting his good power cells. Fighting isnt nice and I think I could fight back for my brother cause I have lots of power cells.
Nick has to go to the hospital and have lots of needles and pills and when he comes home he pukes all the time in his puke bucket.
I saw on TV that some people go to heaven when they have enemy cancer but my mom said the doctors are helping Nick so he doesnt have to go there, he wont like it there, I need him to stay here with me.
Our house is destroyed and I want it back to normal cause I don't like Maxwell's dresser and diapers in mine and Riddick's room.
Sometimes my mom has to sleep at the hospital with Nick so that he isn't scared and so strangers don't steal him or take his hat. I miss my mom when she's not home and I want her to only be gone for one sleep not lots of sleeps.
When my mom's gone my Dad plays playstation with me but I want him to go back to the store and get the Spiderman game, I get mad at my mom and dad when they make me turn the volume down so I dont hear the cuss words, I wont say them I promise.
My dad is sometimes a good cook and can make eggs and Bonnie and Miranda come to our house so Maxwell isn't by himself cause knives are sharp and he could hurt himself.
Nick had hair before but Dad put it in the sink and now Nick has no hair, I want Nick to get a heart tattoo on his head like an airbender cause then it will make his enemy cancer go away and his sick go away too.
I don't like enemy cancer and I don't want to talk about it anymore.

Friday, 15 April 2011

Fear Knocked At The Door - And Faith Answered

In each of us there is greatness but there are also flaws. While I know that I have ample positive characteristics (I wouldnt have as many people that love me if I didnt) I also know that I have some traits that arent so great and trust is one of them.
There is something within me that refuses to put faith in anyone. This has made many things in my life more difficult then they need to be. It at times has created bumps in my marriage and it has caused friendships to fall by the wayside. I dont know why I have this problem but its there and despite my logical reasoning it doesnt seem to be in any hurry to leave.
My trust issues are more exaggerated when it comes to my children, I trust no one with them and my worries are always through the roof where they are concerned.
Today my faith was tested and I had no choice but to breathe through the panic and allow another to take the lead in the care of my child.
Today has not been a great day for Nick and its clear that with cancer the mood and physical aspects can vary from day to day.
The results from Nick's morning blood work showed that he is now neutropenic which means that he no longer has the ability to fend off infection and getting one can be dangerous. He also has some sores in his mouth that are common to cancer patients and are very painful, he has been given narcotics to help with the pain but that makes him sick ... it seems like he always needs a pill to combat the effects of another pill  and multiple times a day he is taking pills by the handful.
After informing us of this the oncologist then said that after meeting with the "team" she believes that they are perhaps treating Nick too aggressively and they want to try removing one medication from his protocol. Doing this would change his protocol from six cycles to four cycles and could remove the need for radiation.
In theory this is great news but right away my mom senses went into overdrive, what if he NEEDS this medication, what if removing it is the difference between remission and a fate I dont even want to imagine?
Perhaps it was my deer in the headlights look or the fact that my racing heartbeat was loud enough to be heard across the room but the doctor was quick to tell me that by repeating his tests and scans every two cycles they will quickly see if the medication needs to be reintroduced. Nick was of course happy, removing this medication means that he can now eat beef jerky and have more then one serving of chocolate a day (not that any of that will happen with mouth sores but at least he has the option).
My child's life is in the hands of someone else, a woman with an extensive education yet cant manage to evenly pluck her eye brows ... how can I rest at night knowing that I have no choice but to trust that things will be ok.
This was one of those times where fear knocked at the door and I had no choice but to let faith answer. 

Wednesday, 13 April 2011

No Processing - Just Doing

It seems as though just as I start to find a new rhythm in life things pop up and complicate things for me.
Last weekend what I thought was stress turned out to be a nasty attack of kidney stones.
I have delivered a baby the size of a bag of potatoes without a drug in my body but at the hospital Saturday night I was beyond thankful for morphine.
It was impossible to get comfortable and its as if my body arched uncontrollably from the pain and I'm not sure if the vomiting was from the stones themselves or the pain that they caused.
The entire time I kept thinking I dont have time for this but at that moment it was out of my control and that seems to be something that I am just going to have to get used to.
Where Nick is concerned life seems to be trucking along. He starts each morning with the same question What do we have to do today - unfortunately there seems to be something on our agenda each day, the calendar is not often blank.
Today we met for the first time with the home care nurse and again I feel very lucky to be dealing with such genuinely nice people.
She helped me calculate the dosage of the very important (and VERY expensive) G-CSF medication that will help boost Nick's white blood count and help him fend off infection and she watched as I gave the first of many daily injections. Nick's counts are dropping quite quickly and I now must be extra cautious about germs and infection control, we knew that this was the normal course but sometimes it feels like life is changing so quickly. There is really no time to process there is only time to do. The nurse commented about how organized I was and about how that makes dealing with things so much easier, the fact is that we are going to be meeting with many different people in many different places and having a binder with all the info is ideal.
Tonight instead of clipping coupons I highlighted levels on his blood count chart and refilled the weeks medication dosette. I remembered for a moment that my life is so different but I quickly felt relief at the thought that although what is happening right now is HORRIBLE it wont last forever and I think that all of us will grow and morph into more appreciative, compassionate and empathetic individuals and I know that we will be closer as a family then we ever have before. I think that this disease has made us take note of whats important and let go of who and what is not. It has shown us that there is more kindness in the world then we ever could have known and that some strangers really are simply friends that we havent met yet.
Nick has been given a Wish and for the last week I have watched him dream. His instructions were to dream big .... oh the things that I imagined him wishing for.
In the end he decided that he wants to go to San Antonio Texas to visit the amusement parks, attractions, a Spurs game and eat a steak cooked on the BBQ by a real cowboy.
Now getting birth certificates and passports is on my to-do list - I'm pretty sure that I will need to wish for a vacation to recover from Nick's wish.
As I sit here now, Nick just finished a plate of lemon sole and has now decided that he needs french toast with berries as dessert, Its late but his appitite and taste buds have changed and so I just go with it, I've always been a short order cook but now my kitchen stays open later.
The other day Nick received a package in the mail from his brother Kurt (with the help of his teacher), it contained a letter, scribbled artwork, and a business card for our mechanic that is generally kept in his treasure chest (why I dont know).
It was heart warming to see my child with autism expressing his feelings despite it being because of something that I wish none of us needed to experience.
This disease really is changing us all.

Saturday, 9 April 2011

Ok Ok I Get It

Today set out to be a pretty good day, The sun was shining, the breeze was warm and I was going to lunch and for a pedicure with my mom.
Afterward with my pretty lavender toes exposed for the world to see I headed for the grocery store to stock up for the week. Within a few minutes I started to feel hot and dizzy and it wasnt long before I was puking in the giant stone garbage can by the cart return.
I managed to drive myself home and simply yelled to Dom "groceries are in the trunk" before racing for the bathroom again.
The entire time I was praying for the sickness to be some sort of food poisoning because the flu would not be good at all.
My husband offered his own thoughts as to why I could be sick but made sure to say it from a distance because generally that particular comment would evoke a serious tongue lashing. 
I stumbled to my bed where I napped for a few hours which is something that I dont normally do but I woke up feeling fine.
Later in the evening Nick expressed that he was worried that if I was sick he would have to go to the hospital alone and that I would be too sick to take care of him. Clearly he has more anxiety then he lets on.
Pretty much the consensus is that I need to take better care of myself, I thought that I was taking care of myself but I guess not well enough considering my body today basically said nah ah sista we're taking a nap and that is final!
Maybe getting everything accomplished isnt the same as taking care of myself.
Although I have never flown, the concept of why the parent uses the oxygen mask before their children makes sense to me, if you are not ok then how can you take care of them.
This past week was rough, Nick did his first chemo cycle, Maxwell had his MRI and I went to present in front of the school board's expert panel to get Kurt the best possible placement since he is being discharged from IBI. Everything ended positively, Nick is doing ok, Maxwell's MRI went as expected and I rocked the IPRC meeting and got exactly what I wanted (with the help of Kurt's fantastic teacher).
Maybe it was just too much to cram into 5 days, maybe the lack of sleep, excessive walking, hospital food and copious amounts of coffee caught up to me.
I have never been one that accepts help and over the last few weeks I have gotten LOTS of emails asking if there is anything that would my life easier or if there is anything that would help Nick etc and aside from a fantastic ipad and accessories (that was a surprise from the most amazing group of women I know) I have always declined any offers .... I simply dont know what to say. I know that people want to help from the goodness of their hearts but in all reality there is nothing that Nick or I need and I dont want this to be viewed as a handout. I thought about it today and the next time someone asks I will say "restaurant gift cards" ... while he doesnt eat much at a time he tends to eat often and multiple times during the day and night I am running to where ever his taste buds send me (try finding shrimp at 11pm - its not an easy task lol).
With the doctors recommendation that Nick should consume more calories it seems like the more sensible suggestion then anything else (but it still feels strange)
Tomorrow is a new day and I will do my best to make healthy choices and take care of myself because I certainly got the message loud and clear today.

Thursday, 7 April 2011

Happy Birthday -How Many Candles?

 It feels to me like I have been a mom forever, as if my entire life has been devoted to a child.
My path to parenthood wasnt ideal, in all honesty what fourteen year old decides that instead of parties they would rather change diapers. 
Although I knew that I had options I also knew that the baby I was carrying felt special (but I imagine most parents feel that way). I was determined that he would have only the best, I put him above the rest of the world and my entire life revolved around a dark haired boy. I had ample examples around me of the teen parent that I did not want to be and although it was hard and challenging at times I never allowed myself to fail. To this day I still feel my heart skip a beat when someone says the word social worker (often times much to the amusement of my mother). This is really quite foolish actually when you consider that to become a mom to my middle children it involved working with a lot of social workers, but as a teen mom my biggest fear was messing up, ruining his life and losing him to the system. Even as recent as two weeks ago in the hospital when the doctor said "I've made arrangements for the social worker to come see you" I immediately defensively demanded to know why ... um hello Einstein, your kid was just diagnosed with cancer, perhaps they want to make sure that your not losing your mind completely (this is clearly a childhood fear that I must work on lol)
In a way Nick and I grew up together, I celebrated my sweet sixteen with my two year old and at six Nick walked me down the aisle and "agreed to share me" at my wedding (giving me away was aggressively opposed).
I joked a few days ago that I am going to have a button made that says "I am the mother" because I am growing tired of answering the "and you are....." question each day at the hospital which is almost always followed up with the "I thought you were his sister" comment.
Recently I have been experiencing an odd sensation, the other day as I watched Nick vomit for the millionth time my eyes no longer saw pimples and chin whiskers and instead saw the plump cheeks and dimples of the toddler that existed long ago. Instead of hearing "mom please help me" in the pubescent voice that delivered it I instead heard the high pitched sound of a stuttering toddler.
My mind knows his age but my heart simply doesn't care.
Today is Nicks birthday and his age can be calculated in so many different ways ~ 15 years ~180 months ~780 weeks ~ 5,475 days ~ 131,475 hours ~ 7,889,231 minutes or 473,353,980 seconds but somehow in my heart he has never aged .... he was then and still is now .... my baby.

Tuesday, 5 April 2011

Ding Ding ... Round #1

On Monday Nick started his first round of chemo, we had been told that often times there are no side effects seen during the first cycle so we were rather surprised to see the rapid onset of not wanted symptoms.
I sat for hours and watched my child vomit so violently that his entire body heaved, the first anti nausea medication did nothing, then the second as well, thankfully the third medication that we added to his cocktail seemed to take the edge off.
The list of medications that he takes is long, so long indeed that I couldnt count them on my fingers and toes, so long that the hospital pharmacist booked two appointments with me because there was just too much info to cover in one sitting.
I am thankful that Dom decided to stay at UPS instead of leaving for a job opportunity that paid more hourly, the benefits that his employment provides are essential. Despite being covered for 75% of the medication it is still going to cost us thousands of dollars over and above what Manulife will provide.
I cant even imagine the strain and stress that a family with less financial means would be enduring over and above the emotional aspect.
Today we got to meet a very nice woman named Maria, she is a "child life specialist" here in the hospital and she is someone that is specifically here to help Nick cope.
One of the things that they did today is start his collection of "Bravery Beads",
These specially designed beads are given for each and every procedure that he will have done over the entire length of his treatment... a visual and tangible object for him to keep not as a memory of the dark and painful time but as a memory of the strength, courage and survival that he will one day appreciate and be proud of.
At first I didnt think that he would agree to collect these beads as my need to photograph had been met with less then a pleasant reception; he said that this wasnt something that he wanted to remember, but this afternoon after I had strung his beads and then began to read a book I noticed him quietly pick up the rope, run his fingers slowly over each bead and simply gaze at it before putting it on the tray next to his bed.

The beads in this picture are what he has "earned" over the last few weeks, when he is finished this journey I am sure that his rope will be long enough to drag on the floor but it will represent so much more then a tacky childish craft and I am very proud that he is brave enough to acknowledge it in the physical form.

Smiley Face: Help A Child Smile Logo
Dark Blue: Admission
Maroon: Needle Pokes
Purple: Bone Marrow Aspiration
Pink: Surgery
Green: Chemotherapy
Orange: Tests/Scans
Flower: Port Insertion
White: Dressing Change
Lightening Bolt: ER visit
Heart: Echo
Faces: Steroids
Lime Green: Sedation
Gone Fishing: Home Pass

Saturday, 2 April 2011

Finding The New Normal

Its now 11:03pm and I'm sitting on the most uncomfortable pull out chair known to man. Every third week I will be trading in my king sized pillow top bed for this terrible contraption.
Three feet away Nick lays in his hospital bed watching some disgusting "Beyond Survival" tv show and is taking mental notes about how to skin large game in the arctic.
Its uneasily quiet, there are no children sneaking out of bed, dogs barking, phones ringing or babies crying for more milk. Occasionally a page for a nurse or an IV alarm will break the silence.
One would think that this would be the ideal location for your mind to wander, to sit and ponder about the future and to revisit the past but oddly enough for the most part those thoughts dont come.
Here there is a strange sense of normal, at first it made me uncomfortable and quite honestly I didnt understand.
How could someone casually lean against the kitchen counter and discuss their childs cancer and treatment so easily and emotionless. I didnt think that I would fit in, I didnt think that I could be that type of mom, I dont want this to be normal and I dont want to talk about cancer with the same tone that I would talk about a shoe sale at payless. But something happens here, its hard to keep to yourself, to wallow in your own fears and pretend that none of this is happening.
Somehow here tears, smiles and laughter go together like peanut butter and jelly.
Right now I am the new kid, the mom that often looks lost but I am a smart cookie and I will soon navigate this place like the back of my hand. I will understand the cancer lingo and I will know nurses by name instead of hairstyles.
Its a sad thought really because this is not the normal that I wanted or thought that I would have.
Only two weeks ago normal for me was trying to be everything to everyone all at the same time and now that just isnt possible no matter how much I may want it to be. I am learning a hard lesson in letting go of control and am learning to allow others to help me which is something that I have never ever been ok with doing.
I am also learning that my hugs and kisses dont fix all boo boo's. I can hug my child while he cries about the thought of losing all of his hair, the fear of being sick, the panic of the "what if" or the reality that he will eat birthday cake at the same time he is getting chemo treatments but in the end while my embrace may take the edge off, the tears still come. I am still trying to learn that my childs tears are ok and that I dont need to fix them, I just need to listen to them and acknowledge that they are normal... They are his new normal.
The old me is gone and I doubt that she will return, there is no place for her and her ways in this new world. There simply isnt room for the old Cass and Cancer too.
The new normal wasnt invited or even welcomed but it is what it is and I have no choice but to accept it ... with a smile and some laughter whenever possible.