A broader view...

Chemo day went relatively well.  It was only 3.5 hours this time, and it was only longer because we ended up needing to see the ear/nose/throat specialist, and it took a while to track them down.  Charlotte has had a hoarse voice (the kind that would get you a job with one of those late night commercials advertising 'friendly' chats) since Sunday.  I read it was one of the rare side effects of one of her chemo drugs so mentioned it upon arrival (along with the others - hair loss, her right ear is bothering her, and the moodiness).  So - poor Charlotte had to have a scope (teeny tiny camera) put down her nose so they could look at her vocal cords.  They were checking for paralysis - and thank goodness everything looked okay!  Our little trooper handled it quite well!

They also discussed her biopsy results from the Friday before - and said Charlotte is "almost in remission".  Her 'blasts' (blast cells are precursors (stem cells) to all immune cell lines) were 84% at the time of diagnoses.  They need to be <5% to be termed in remission.  Her blood smears from last Friday showed <5% (yeah!), but her biopsy showed 9%.  Many other hospitals just use the blood smears - and it's kind of odd the large difference.  The Dr. said could have just been a pocket - and the biopsy wouldn't differentiate those blasts that are dying.  Either way - she is almost there - and doing great!  He also said it was great that we had been home for 2 weeks with no infection!

We got a copy of the whole treatment plan - and it's a lot longer and way more intense then we had originally believed.  The maintenance phase likely won't happen until Christmas, and even in maintenance, she gets chemo pretty much every day.  We will only be into the clinic once every 28 days, but drugs will be administered at home. 

Here is a quick and dirty summary of the treatment plan:

• Induction Phase- we will finish this on Thursday, and then have a one week break before the next phase
• Consolidation Phase- 56 days.  The first two weeks we will be at the hospital 4 days a week, then once a week for 2 weeks - repeat.
• Interim maintenance Phase - 63 days which will include 4 overnight stays at the hospital.
• Delayed intensification Phase- 56 days (we didn't really talk about this phase)
• Maintenance - 2 years - in the clinic once every 28 days.
• Each phase has a mix of oral and IV drugs - so many get administered at home.

We had no puking last night - wahoo!  I don't know if we are just getting better at trying to prevent it - or if Charlotte is just adjusting to the treatment.  Her platelets were low on Friday, but instead of giving her another transfusion, we will go back on Monday to check how her blood levels are then, and get a transfusion then if needed.

My reality check of the week - there was a 5 week old baby in the clinic yesterday.  It broke my heart and I have been thinking about that poor mom ever since.  I remember the stress of newborn life - and couldn't imagine having to deal with cancer on top of that.  I am thankful every day for my blessings in life - a tough little girl, a happy little boy, the best partner I could ask for in this battle - and a frickin' fantastic army behind us!

pins and needles

To start off - Stefan's MRI was good.  'Stable' was the word the Dr. used.  Whew.  I had been on pins and needles up until the 2 pm appointment.  I don't think I could have handled any other answer.

When I met up with Stefan and his Dr., we spent a good half an hour talking about the recent news of our little girl, and ways we can reduce Stefan`s stress load.  Stefan IS one of those people who laughs at the suggestion of deep breathing.  We tossed around a bunch of other ideas though - tai chi, listening to music, etc.  Stefan has been noticeably more 'on edge' since Charlotte's diagnoses.  He also hasn't really been able to take his sleeping pills since we are both essentially on call for Charlotte right now.  This hasn't helped.  We are hoping he will be able to take a reprieve from his rehabilitation program for a couple months until Charlotte's active treatment is over. 

Well into the conversation with his Dr., I finally piped up with..."ah, how was the MRI?"  and the Dr. responded with the good news and a "I guess I should have started with that"!

All of Stefan's team was needless to say shocked about our double case of bad luck.  We are so happy this hurdle is done for now - we'll be back in September for Stefan's next check up.  We had checked with Charlotte's Dr. the last time we were in about taking her with us to Stefan's check up if we couldn't find someone to leave her with.  Of all the public places out there, the cancer agency is probably the safest.  So we tucked her up into her stroller and brought her with us. 

Charlotte has been emotional lately, and very attached.  We had a few options for having her stay home, with both our mothers and Stefan's sister ready and able to watch Charlotte so I could go to Stefan's appointment with him.  These are three of her favorite people - and with her feeling a bit better, thought it would be no problem.  But she only wanted mommy and daddy, and we just didn't feel we could leave her.  Over the past few days, she will cry out of the blue over nothing and wants lots of cuddles (Charlotte has never been a cuddle bug!).  I'm not sure if this attachment is just from all the chaos in her life right now (to be expected), or a symptom of pain.  We'll check with the Dr. tomorrow about the possibility of pain and management.  The most difficult part of this is her inability to communicate how she's feeling.  In the meantime - we are giving her extra special attention and care!

Chemo day tomorrow.  

A vampire princess, two zombies and a clown - is it halloween?

Friday night at our house had:

• our little vampire princess, who has now had 3 blood transfusions.  They do always bring some color and energy back to our little girl though;
• 2 zombies, Stefan and I had little to no sleep Thursday night and needed a caffeine IV Friday;
• Our little clown - Nathan is always full of smiles!

The weekend in detail....
Thursday night, sure enough our little girl started calling out for fishy crackers at 2:30.....having to reject her food request, I laid with her for the rest of the night.  We made it to the hospital at 7:30, and the staff at Childrens were excellent, starting work right away so our hungry girl could get her biopsy over with.  In no time, blood work had been done and analyzed, and she was sedated and done with her 10 minute procedure.  She awoke to her little buffet of snacks and started chowing down!

Her blood work did reveal she needed a transfusion of blood and platelets.  Blood has to be done over 3 hours - so this turns it into a long day - but we were kind of expecting it, so we were prepared.  Charlotte did excellent, and is quite co-operative with the nurses now for getting her temperature and blood pressure checked!  After 7 hours, we were on our way home. 

After last weekend, I stayed on top of the nausea front, ensuring she was taking her anti-nausea meds AND the gravol.  But....we were still bombarded with an exorcist style puking session at 10:30 pm.  After cleaning up, we were back in bed by 1am, and all was good for the remainder of the night.

Saturday we got out to enjoy the sunshine and took turns with some well deserved naps.  Our little clown took a first - first time in a swing!  Our little butterball is such a happy camper, all smiles - and I have to say has made this process easier for us.  He has been so good being left with others, and cheers us up everyday with his always smiling face!

Sunday we were treated with another beautiful day and a run for mommy and daddy! 

The best part of this weekend is that Charlotte has finally wanted to play!  We had several hours away from the tv to play, sing songs, read books and watch the neighbors kitty's out the window!  We had two special visitors - Charlotte's child care provider, who she was very happy to see!  And Stefan's friend from his life guarding days brought some much appreciated supplies, including some parking passes for Childrens! 

The low-light of the weekend (aside from the puking session) was when Charlotte handed me over a lock of her hair this morning saying "look mommy"....

We aren't back to Children's until Friday, and Charlotte has medication free days Tuesday,Wednesday and Thursday - a treat!

We are in to the Cancer agency Wednesday for Stefan's semi-annual MRI and Dr.'s appointment - please send prayers (all denominations accepted :)) and positive vibes to my two superheros!  Thanks!

terrible twos on steroids

Literally.

One of Charlotte's chemo drugs is dexamethasone, which is a steroid.  It's not technically a chemo - but it's used as chemo - and has been very effective in treating leukemia.  In fact, studies have been done, where only dexamethasone was used, and it had a 60% recovery rate.  It's probably the best weapon in this battle.

The side effects of dexamethasone are moodiness, irritability, sleep disturbance and increased appetite (Stefan has been a short order cook for the past week). (there are also ulcers, heartburn and aches and pains).

Now, Stefan was on this drug after both his surgeries (to reduce swelling).  I thought I had actually written a blog about it, but looked back through old ones and couldn't find any.  We actually ended up naming his alter-ego.  Picture the hulk.  That was pretty much Stefan on steroids.  So at least we had an idea of what we were in for.

Combine that with being two, and not being well, and it's made for some fun times!  It's very tricky finding that fine line between when to be firm, and catering for your sick child. 

Our daughter has quite the tv addiction right now.  After a week in hospital where it was on all day, and with her still having pretty much no energy - it's hard to find the right time to turn it off.  Baby steps.  So we have been firm on tv being off for dinner time - a fair request I think.  But this results in crying for the tv all through dinner.  Sunday's weekend puking incident was a result of this (worked herself up).  I still think we did the right thing - even if it meant puke.  We have to start somewhere - and I think mommy and daddy becoming super lenient is as scary as being poked and prodded by doctors and nurses.

So, walks and car rides are pretty much all we can do now to get a break from the telly.  We have a playroom full of toys, books, puzzles, play dough, you name it - but she has zero interest right now - chalked up to being sick and the steroids.  The Dr. said over the next couple weeks her energy should return.

We have a couple wake ups in the night asking for food and tv - we oblige with the food, but not the tv. 

Tomorrow's agenda is a bone marrow biopsy and more chemo.  This means our girl has to fast from 2am to her 8am appointment.  Not looking forward to saying no to our girls requests for food and drink starting at 2am - which will be accentuated by her steroids!  Poor thing!  We will have a lunch bag full of her favorite foods ready for when she comes out of sedation (pasta, quinoa and perogies - all with cheese!). 

At least the steroids end Saturday, it will probably be another week or two until it's out of her system.  On the bright side, it has helped add some weight to her tiny frame as preparation for the next round of treatment.  She is at an increased risk of having a feeding tube during her treatment - so we are giving her as many calories as we can.  Hoping for a non-pukey weekend!

Gettin' our groove back

We survived our first weekend home and our first clinic visit.  We passed the first test - and as a result, are feeling a bit more confident and a little bit more calm.  Our meeting with the Dr. went well today, and Charlotte is responding really well to the chemo.

Optimism and hope have returned to our household, and I am clawing my way out of my hole of self-pity.  Spending so much time in the Oncology ward and clinic gives us some perspective.  While we have this double battle, Charlotte's cancer is very curable - many others are not so lucky. 

I got a lovely card in the mail today from a friend, she said "I truly believe we are never given a challenge we can't by Gods grace overcome...if our prayers don't move mountains then they'll help us climb them... to eventually see the view of the other side".

I have started to accept what is, and have to believe that we will be stronger better people at the end of this loooooong double battle.  I don't know why we were thrown in front of the train just as we were feeling our lives starting to reach a level of normal - but I have to tell myself there is a reason, and that we'll be better because or in spite of it in the end.

I cut Charlotte's hair this weekend.  She puked while in bed yesterday.  The result being hair covered in puke.  It is very hard to wash hair while not fully submerging (we could only sponge bath for risk of getting an infection in her port).  Between that and the likely upcoming hair loss - it had to go.  Here are the pics - we think she rocks the short hair!

Before

During

After

Some Thanks
I have to give a big thanks to my mom and mother-in-law, without them I don't think we would have survived the last week and a half.
Also - big thanks to Zuri for rallying the troops that have formed Charlotte's army.  She has set up a website for soldiers here: www.charlottesarmy.com

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!