Home

Well, we are home.  A bit stunned still, very overwhelmed, scared, but finding some relief in home.

It's been a long week, with a crash course in nursing and pharmaceuticals.  Charlotte has responded really well to the the initial chemotherapy.

We are starting to get a picture of at least what the next month will be like...

• We have an immune compromised little girl.  That means we will be living in our bubble of a house.  Ventures outside will be in the backyard or going for a walk.  No parks (unless they are virtually empty), no malls, no daycare, no birthday parties.  You get the idea
• We will really limit visitors.  For those who do come to visit, you can't even be thinking about being sick, and we will bathe you in purell on arrival.
• We will be visiting the oncology clinic at Children's hospital twice a week over the next month for chemo, blood work, lumbar punctures and bone marrow biopsy.
• I spent $310 at the pharmacy yesterday, and that doesn't include the one drug covered by the Cancer society.  Another $100 spent at the drug store on soap, purell, rubber gloves etc. (have to be worn to change diapers or deal with puke as the chemo goes through her and is toxic - especially important with me breastfeeding).  Our dining room has been turned into the Lageston pharmacy.
• A fever of 38 or higher will be an emergency for us - and trip to ER. 

Why I can't sleep at night

• the obvious - worried about my little girl
• memories - the memories of Stefan's diagnoses, surgeries and treatment are far to fresh, and have come to the surface as we go through this.  The drives back and forth to the hospital and home.  One year ago, I was spending the days with Stefan, and driving back to see my little girl.  Now it's to spend days with my little girl, and driving back to Nathan.
  For Stefan too - the memories are all to fresh.  The night we were in the ER, and the nurses were putting her IV in, Stefan passed out as the memory of the pain his IV caused before his second surgery.  Needless to say - that caused more panic that night when I realized he had passed out - and I blurt out to the nurse "he has a brain tumour".  fun fun.
• work.  luckily I'm on maternity leave and Stefan is on long term disability right now - we wouldn't have been able to do this otherwise.  Even thinking about returning to work in October stresses me out already.  Charlotte will be in the 'maintenance' phase by then, but that still means monthly trips to the clinic for chemo, and likely stays in the hospital with any infection.  I get 20 vacation days a year.  12 of those will be used for Charlotte's clinic visits, 2 for Stefan's semi annual MRI/consult.  That doesn't leave much room for hospital stays, Nathan and I.  (I can hear everyone saying - that's so far off - don't think about that yet - ok - I'll try!)

I will post again in a couple days with some info on the three stages of Charlotte's treatment.  Just wanted to give the update that we are home!

I also just want to give a BIG THANKS to everyone who has emailed, called, messaged us or sent a card or gift.  I can't tell you how much we appreciate them.  Your simple email or offer might seem small, but each and every one brings us comfort.  We have some big hills to climb, and we will certainly feel lonely living in our bubble - but so nice to see our 'Army'.

Our girl making her silly face and looking much better - shortly before 'puking' and reminding us that she is still sick!

a new chapter - a new villain

I'm having a hard time sitting down to write this post.  I have such a mix of emotions right now.  I'm pissed off.  Sad.  And at the same time, can't help but laugh at the ridiculousness of our situation.

Charlotte has leukemia.


breath.  reread.


ok - did it register.  It still hasn't quite for me. 

how?when?why?   WHAT?
We think this story started February 5 with cold symptoms - coughing/runny nose - typical cold stuff.  February 7th, she had a fever.  February 9th we went to the Dr. at the walk in clinic since she had had fever for 3 days.  Dr. said she looked healthy - just come back if 5 days of fever.  Went to our family Dr. February 12th (still fever).  (She was really really sick this whole week (not vomiting, just the fever - and no energy - if she got out of bed - was only to watch tv for about 30 minutes - then back to bed), not eating, but thankfully drinking).  Our family Dr. said there was a slight cracking in her lung, could be on set of pneumonia, lets do antibiotics to be safe.  Charlotte did look pale (her normal coloring is on the pale side).  Dr. referred to the blood work done (August?) by our pediatrician and said she's not anemic so we went home to start the antibiotics.  Fever finally went down after two days of the antibiotics and she started to get better. 

She never returned to her normal self though.  It being one of the 'worst cold/flu season's' ever, and considering how sick she was the week of fever, we thought it was just taking her longer to recover.  But this past week, she started to regress.  More tired, skin color looked even paler - and pallid.  She didn't even want to play.  So - returned to the Dr. Wednesday - result being some blood work/urine tests and we were to return Saturday.  She did the blood work Thursday at 10:30am.  Our family Dr. called us at 4:30 pm and said Charlotte needs a blood transfusion - go to Childrens Hospital.

So - the 4 of us trekked down to Children's Hospital.  It was a 4 hour wait in the waiting room.  We were in a room within the hour. 

"abnormal blood results"
"when we see this - it's a good indication of leukemia"
"there will be lots of tests done over the next day"

By 10 pm it was confirmed - our little girl has leukemia.  (it wasn't lost on us that it was one year to the day of Stefan's second surgery).

A restless night spent in the er (yes - Nathan was with us).  And the next day (yesterday) we were given a bed in the oncology ward.  She had a lumbar puncture done, some bone marrow and bone taken for testing.  As I type this she is in surgery again to have an internal line put in.  This will be used for future blood work and to administer chemotherapy over the next 2+ years.

She hasn't had the leukemia for long (less then 2 months) - it is not inherited and it is not viral.  The type is Acute Lymphoblastic Leukemia (1/3rd of all childhood cancer) - early B cell.  She's on the cusp of standard and high risk due to her white blood cells being greater than 50, but there are other factors which are still being tested.  It's 80-85% curable.  Treatment is 2.5 to 3 years.

I can't tell you how difficult it is to watch my little girl go through this.  It breaks my heart every time she is poked for blood work, or I have to say no for 3 hours to her requests for food and drink before surgery. 

I don't know what the odds are of two family members getting a non-hereditary cancer within 15 months.  Calculating that kind of thing is usually my shtick.  I'm guessing same kind of odds as winning the lottery.

I'm thinking back to every single indiscretion and thing I've done wrong in my life to warrant deserving this.

I'm trying to stay strong - Charlotte needs it. 

And trying to look at the positive.  Since it's such a common cancer, they are very good at treating it.  At least we had a bit of time to recharge our batteries before our next battle.

Charlotte starts her chemo today.  Nathan is at home with family as he has a cold so can't be here.  We will be in Childrens for the next 10 days give or take.  Then home and resuming a somewhat normal life with lots of treks to Childrens over the next couple years.

While I feel we've used our quota of food offers and help offers - I thank everyone for standing up again to offer help.  It's so appreciated knowing the army that stands beside us.

****spoiler alert for those who haven't read book # 2 of hunger games
I'm hunger games obsessed - and I can't help comparing myself to Katniss.  I'm sure this is how she felt when she found out she would have to do the hunger games again.  But we are ready to lead this rebellion!

an update....finally

Sorry for the long delay!  I hope everyone had a great Christmas and New Years!  We certainly did.  I have enjoyed my little break from the blog and all things brain tumour related! 

I was waiting to write an update until we had confirmation from the the insurance company on the recommendations for Stefan's rehabilitation - and we got that this week.

Stefan had a cognitive assessment done in December which consisted of two days of testing.  We met with the therapist the following week and he summarized what his recommendations were.  His report was submitted to the insurance company for approval.  There was a delay at the insurance company since someone left the company - and we got final confirmation this week.

The recommendations from the report (as per the occupational therapist who did the assessment) were:

• it was recommended Stefan not return to work yet, and to do so would likely end up with a failure in returning to work permanently;
• recommended a 3 month rehabilitation program that would take place a few days a week a couple hours a day - this program would include:
  - an assessment by a speech pathologist (likely to help with his word finding - "expressive aphasia")
  - stress management course
  - a work hardening program with a kinesiologist (to help with sleep)
  - working with an occupational therapist to help with memory skills
  - working with Stefan in his work environment
• After the 3 month program they will do another assessment
• Overall - Stefan's problem solving skills were great, it is communication and 'stress' that are the areas to work on. 

So - now Stefan has his first meeting with the occupational therapist Wednesday to go over the 'plan'.

Meanwhile - we had a chance to go on an actual vacation to Hawaii!  This vacation had been in the plans for a while as we had a wedding to attend.  The initial plan was for Stefan to take paternity leave for January so we could get away - so this worked out just as well.  I feel it was a well deserved vacation for all of us - and did wonders on the stress management!  Hope you are all well - and we will update again soon!

A couple pics from the trip!