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

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