Friday, February 25, 2011

the best analogy I have come across

My mom read this to me today over the phone, and it pretty much sums everything up. So now I will share it with you all...

The Strength of an Egg by Juliet Freitag

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle will break . The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That is where parents of children with cancer (or other serious conditions) are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.

Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer (or other serious conditions) will pick themselves up and put themselves back together again.

Thursday, February 24, 2011

When chemo rears it's ugly head

hanging out before her appointment
being measured
Yesterday was Brinley's 10th time going under anesthetic, and what better to kick off such a milestone by waking up in the middle of her lumbar puncture.  Oh yes, according to the anesthesiologist, and our nurse practitioner, Brinley sat straight up on the OR table and started talking. They came to me when she was in recovery saying that they've always had a hard time keeping Brinley under, and that her body metabolizes medication very quickly. This is the first time I've heard any of this.  I did however know something was wrong because as I was leaving the OR, she started fighting and freaking out, but by that time the nurse had closed the doors, leaving me in the hallway with a sinking feeling.  Needless to say, once Brinley was out of the surgery, she was very dopey due to the amount of anesthetic it took them to keep her under, she came home and crashed on the couch for a little while, then went up to bed. 

This morning I woke up to her vomiting, complaining of pain, headaches, and a sore tummy to boot.  I gave her a dose of ondansetron, and it came right back up.  I called the hospital to see if maybe I could give her a gravol suppository, but apparently gravol, and methotrexate don't mix well, so that was a big no.  They did express concern that she hasn't eaten since 6:30 Tuesday night, and she's not keeping anything down, so now I'm pushing fluids to avoid going back to Children's for an IV, I need to keep dehydration away so I'm grasping at straws and hoping she won't puke.

They did warn me that this phase of treatment is usually the worst of it...and if we are so lucky to have 30 uncomfortable days, out of 2 1/2 years, I'll take it.

Once again, we have our game face on.
Having her IVAD accessed, she always makes this face
she says it doesn't hurt though.

watching the nurse set up chemo

and there it is, methotrexate

Monday, February 21, 2011

Her frustration, my heartache

47 - chemo doses/treatments
10 - anesthetics

Wednesday will be the 10th time I have had to hold my daughters hand,  and kiss her cheek as she slips under anesthetic for another surgery.  I doesn't get any easier each time I watch her body go limp and they rush me out the door so they can get the procedure done and move on to the next child in waiting.  I'm still finding new ways to cope with the fear, anger and the sadness.  I've sat more hours in a waiting room that I'd like to recall, and I've absorbed more information that I ever gave myself credit for.  In the beginning, I said there was no way I would be able to remember blood counts, temperatures, and medication doses off the top of my head without having it written down. Now I am a vault of cancer knowledge and the vault is only getting larger. 

Friday was our 4th month into treatment.  4 down, 27 (ish) left.  I can't wait for the day when Brinley is off treatment.  Her strength is slipping away, and when I say strength I'm not referring to her will power.  Her legs are the biggest hurdle, and now her hands don't grip quite as well as they did before, she drops a lot of objects because her hands don't work as well as they use to.  My biggest heartache comes from her frustration with all of this.  She gets upset and angry that she can't do the things she use to, and she doesn't quite understand why.  Brinley understands that she is sick, she understands that the countless "big sleeps" and needle pokes are to help her get better, but she has a hard time understand that the inability to function normally stems from her cancer treatments.  I try to explain it to her but there is always a challenge breaking down cancer to a 4 year old.

losing her hair in the back
Saturday was my first day of witnessing a significant hair loss while bathing her.  She was complaining how itchy her head was, so I figured it needed a good scrub and every time I pulled my hand away there was more soap and hair stuck to it.  She doesn't seem to care, she knows it's coming, but I know once she's bald it's going to really effect her. Part of me wishes we could rip the band aid off and get it done and over with so we can move on, and then theres part of me that hopes maybe it won't all fall out...

I'm starting to notice that Brinley is having longer recovery times after chemo.  As each dose goes up 50mg, her recovery is a few days longer.  This time it was a week, Friday to Friday, but I was thrilled to see her playing again on Friday, she even got dressed!

Friday, coloring in the sun, wearing her "Brinley bracelet"

The Brinley bracelet

Thursday, February 17, 2011

Dear: subconscious mind...

I've never realize how terrified I am of relapse until recently.  I wake up shaking, crying and in absolutely panic.  I have dreams that Brinley relapses, and there is nothing our doctors can do, and somehow it's my fault because in my dreams I forget to give her this medication that I'm completely unaware of.  Relapse has always been in the back of my mind, or so I thought, I understand it is a reality I may, or may not have to deal with.  Just one of the curves this illness throws you, it happens, and you deal with it.  But I've never really sat down and noticed how intensely I'm afraid of relapse, of failure, and letting go. 

I love hearing, "you can't think like that", "don't say things like that", yes I can say, and think things like that because this is what I could potentially face, being naive doesn't change that . And I don't dwell on it, but this is my life people, this is my reality, these are things I never dreamed of contemplating.  This is as real as it gets.

Sorry, I know it seems like a rant, and I don't mean for it to, but I'm being as open and honest as I possibley can. In doing that I can't be afraid I might offend someone views. If I do, I'm sorry.

Anyways, back to my subconscious mind -  knock it off, I hear you loud and clear.

Wednesday, February 16, 2011


After the last few days of emotionally struggling with the ups and downs of chemo backlash, it hit me like a ton of bricks.  Either I need to seek therapy, or find an outlet.  Talking does wonders, but it can only go so far, many people I speak to are amazing at listening, and giving me strength but sometimes I need more.  That being said, nobody can fully grasp the turmoil that is my life other than another parent going through the same ordeal. Ding! Ding! Ding! we have a winner!  I found myself an online support group.  Why I haven't looked into this months ago is beyond me, many of these people have either been through this, or are going through this, all at different stages of treatment.  They understand completely how sometimes this disease can steal your voice, how you feel like you're falling down the rabbit hole the way Alice did. Eureka they get it! 

Brinley has been struggling this week.  She's been nauseated, and sore from the vincristine.  I can no longer give her codeine because she vomits it back up with vengeance.  I've spoken to her doctor at the clinic concerning her pain medication and they have other options...morphine, or Oxycontin.  I'm hoping that maybe Brinley will be willing to try pills instead, that way we can stick to the codeine, and not have to be so aggressive.  I hate seeing her in so much pain.

In other news, I've had some issues with Carter being bullied at school.  Well not school exactly, on the bus.  Lately he's been a target for some nasty comments and mean jokes, one child went as far as wrapping a rope around his neck.  I've been very aggressive in taking this to the school, I have enough to worry about as is, I don't need my son coming home in tears because the kids are mean, or hurt him.  I'm happy to report that his teacher handled business today, and Carter came home very happy and upbeat, claiming "no bullies on the bus today".  Thank goodness for that!

Sunday, February 13, 2011

80 beads and counting

So many things to write about today.  First I would like to start off with the journal entries, or more like the notes I kept in the beginning of all of this.  Before diagnosis, mid October.  I found the book I had written everything in the other day while looking for my handbag, and here is what it says.

October 19th
-sore arms
-limited range of motion
-can't be picked up under arms
...lasted about 1 week

Brinley and I at the "Beach" We're looking a little tired.
November 7th
-sore legs
-crying in pain
-ate 1 cup of apple sauce
-in and out of sleep all day

November 8th
-sore legs
-crying in pain
-fever 102
-fever drops to 99.9 under Advil administration and goes back up on hour 3

November 9th
-wakes up says it hurts to breath
-sore legs and arms
-take her to the misericordia hospital, they say she has a cold, give her more Advil.
-no blood work, no exam
-take her the Stollery, they say give her a few days to see if it's septic arthritis

November 10th
-not eating

November 11th/12th
-fever up and down all day with Advil and Tylenol
-sore body
-can no longer walk/crawls

November 13th
-fever 104
-sore body
-fever will not drop, take her back to the stollery

From that point on they never sent her home until after Brinley was diagnosed on the 18th, and had her first chemo treatment.  She left the hospital on 25th of November.  I'm glad I wrote all of this down, because it helps me recall how we got to where we are.  This blog helps as well.  I hope years down the road, I can look back at this and say, "wow we made it through."

Brinley's beaded journey to date.

This week has been a big one for us.  We proudly took part in the Hair MassaCURE on Friday, and Brinley was treated like VIP gold.  The hair massaCURE is a way to raise funds for the Ronald McDonald House, Make A Wish Foundation, and The Stollery Children's Hospital.  Basically, you dye your hair pink, and pay $25 to have it shaved off.  Ok and when I say "we" I mean Blake, he was the only one that shaved it off for cancer, but I did my part and got the kids t-shirts.  Friday was also a special day because Blake took Brinley to her chemo appointment for the first time, and now she wants daddy, every time. Brinley also got her beads from child life...all 80 of them.  80 beads, 80 procedures, it's crazy to think about, even crazier to look at. On that note, Brin is doing alright, her blood work was the same as last week, treading the lines of "ok" and "below average" but nothing the doctors are worried about  She's taking her dapsone very well, and it doesn't seem to bother her much that she has to have it everyday.  However I've had a struggle giving her codeine, the idea of it makes her gag before I even have it in the syringe. But she also knows that it takes the edge off of her pain, and she's able to move around a bit more when she has it.  Always a catch 22.

Dancing on stage at the hair massaCURE. 3 Hours after chemo.
 In other news, Carter is now on the afternoon bus TO and from school.  This is HUGE news in our house because there were days he would have to miss school because Blake had to work from home, and I had to take Brin to her appointments, and since we're down to one car, it made shuttling Carter to school not possible.  But now he boards the bus right at our driveway! It's also a blessing for the days Brinley stays in bed sleeping all day.  I no longer have to get her out of bed, bundle her up and put her in the car.  It's the little things people!

We've also welcomed 3 new family members, Luna, Sunflower, and Squeegee (cleaner fish) I find them to be therapeutic in a way.  Brin will sit there, nose pressed to the fish bow, watching them swim around, I think it calms her on the bad days.

Brinley's new bracelet

Brinley has also become fixated on her "wish" lately.  So far she has it all mapped out.  She wants to go to disneyworld, with not only mom, dad and Carter, but with papa and gramma too.  She wants everyone to bring their swimsuits and they will go swimming at the water park, and papa will throw her up in the air in the pool.  She will eat lots of hot dogs, and pizza, and have a tea party with the princesses. She wants to buy a beautiful Belle princess dress to wear,  and has even set aside her princess heels for the occasion. I will say it again, it's the little things in life!
Luna and Sunflower

Tuesday, February 8, 2011

He loves me

So to avoid sounding like a broken record, and in the words of Monty python, now for something completely different!

I have an awesome husband.  I have had the luxury of watching my husband grow and mature into this amazing man over the last 12 years, and he makes me insanely happy.  We were so young when we first started dating, young, immature, foolish, but in love.  Blake hasn't always had the best of times, he's been through more than I care to imagine.  He lost his dad at a young age, his dad was his mentor, someone who taught him the rules of life.  How to be strong, protective and basically the everything a man should be.  I know few will say different, but the proof is in my husband, he is amazing and it had to of come from somewhere.  Blake has made huge strides in his life to be who he is today, he has let go of a tumultuous past, that has caused him a lot of personal pain, and has become someone that will pass on his knowledge and love to our son.

Looking tanned and handsome after a day of golf

I love that I'm in love, We've been married almost 6 years and are still head over heels for each other.  Through this journey with Brinley, Blake has been outstanding (yes he's her father and he should be, but you'd be surprised how many spouses go in the opposite direction)  He's my rock and my soft place to fall.  Yes, I married one of the good ones, and for that I am lucky.

I'm always thanking those around me, and it's time I thank you.

Thank you,

I love you B.

Tuesday, February 1, 2011

The sad elephant

I stand in the laundry room, holding the door from the garage open.  I watch Brinley has she conquers one, two stairs, stumbles on the third and can barely lift her leg on the fourth. I ask her if she needs me to hold her hand and she politely declines, "I can do it myself".  After we get our winter gear off she sits down on the floor. "I'm having a bad day" she tells me, "my legs don't listen to me anymore and I tell them to lift higher and they don't, so I can't go up lots of stairs."

Lately she is weak because her hemoglobin has been down, not enough for a transfusion, but it seems to be walking the lines of "almost"  They transfuse at an 80 count, as of Monday Brinley was 81, she's almost boarder line with her neutrophil counts, .5 is dangerous, and Brinley is .6 right now.  It could have something to do with her being off of her antibiotics for 2 weeks, but it's hard to tell. They did however put her on another antibiotic to see if she can keep it down, if not she'll have to have a monthly inhalant and IV done to ward off any infection, primarily pneumonia. So her blood work was ok, not great, and it has been better, and in 10 days we will see again.

 I've had this little sad elephant sitting on my chest.  I find myself laying in bed at night, thinking about everything that's taken place since November, I try not to revisit those feelings but it's easier said than done.  I find myself taking deep breaths to keep the sad elephant at bay, but my mind wonders back to the day of diagnosis, and I tap into that moment of panic, disbelief, and pain...I can never wrap my mind around the pain I felt at that moment.  Even writing about it, I have to take a moment and look away from the computer screen, it's like my body is involuntarily saying, "get a grip, and come back to this." My heart is broken for my little girl, I find myself crying over the days before all of this. Before we became a familiar face in the Children's hospital. I miss the days of her running because she could, dancing for no other reason than walking was plain old boring, somersaulting across the field because it was more fun than walking. I'm finding it harder and harder to stay so calm and put together, I'm terrified if I get too emotional I'll lose any control that I have gained. I'm scared my husband will think I'm losing my mind. I try to let it out little bits at a time when I'm alone, but it doesn't seem to help much.  Maybe I just need to stop holding out and have a nice big long therapeutic cry.

 I hate sounding like a broken record, but I want this to be over.  I want the doctor to tell me, "we made a mistake" or, "it's a miracle she's cured!"  I know that day won't come to light for seven years, but it WILL come. It has to.