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!