tears of the day

I came across this quote while reading an old British Columbia Childhood Cancer Parents' Association newsletter.  I couldn't even finish reading it without breaking down for a cry....

“A person that loses a partner is called a widow. A child who loses a parent is called an orphan. But there is no word to describe a parent that loses a child, because the loss is like no other…” - J. Neugeboren

Camping

Our first camping trip was a success!  We called it our test run, to see how the kids did, it was a mere 18 hours long, and we were less then 10km from home, but they did great, so future trips will be done!

The rundown:

3:30 pm - the truck is packed, the kids are dressed and appropriately sun screened, we roll out of the driveway with tim hortons as the first destination so the adults can caffeinate up.
3:35 pm - on route we realize we have forgotten three things, a garbage bag, the crib board and chairs
3:45 pm - coffee's in hand, we head back home for the forgotten items
3:55 pm - once again, rolling out of the drive way
4:05 pm - arrive at the Anmore camp ground and pick out our spot
4:10 pm - set up camp

"I've got this lounging thing down"

 

5:00 pm - Stefan breaks in his new camp stove (his fathers day present) 

5:20 pm - Charlotte collects sticks for the fire; Nathan chews on sticks; Stefan starts the fire

5:30 pm - Nathan has his dinner

5:59 pm - one very excited little girl

6:10 pm - we eat our lovely dinner of sausages and beans, gotta love camping!

6:40 pm - Nathan gets his bottle, some cuddles and ready for bed; Charlotte practices her ballerina moves around the camp.

  

6:50 pm - smores time!  We discovered these 'campfire' marshmallows which are about 3 times the size of a regular marshmallow and are perfect for smores!  Charlotte, not being a big sweets girl, was content with just roasting them!

Charlotte with her smore - this is the look we get when we say "smile"

Nathan helps!

7:00 pm - Nathan goes down to bed.  He sleeps in his tent within the tent.  He had 2 wake ups before we were all in the tents where we had to go in and lay him back down and soothe him a bit - but he did spectacular!

7:50 pm - Charlotte gets cleaned up, takes her medicine (just glutamine right now to help prevent mouth sores), and ready for bed.

8:00 pm - While reading Charlotte her bedtime stories we notice her nose is bleeding.

8:01 pm - Quick call to the oncologist on call to discuss the nose bleed, by the time we are off, her nose has stopped bleeding.

8:10 pm - Tuck Charlotte into bed

8:20 pm - Stefan and I enjoy a baileys with hot water (a Michelle tip - don't knock it till you try it!) and Mr. 'half a brain' beats me at two games of crib.  We enjoy the chatter of our little girl from her tent, and the more dramatic chatter of the neighboring camp site (see 10:30 pm).

9:30 pm - I check on Charlotte who is still awake (and I can't blame her with the noisy neighbors).  She's quite a happy girl and asks to come out - I oblige, after all, we're camping!  She joins in on the card playing.

10:00 pm -  Charlotte and Daddy take a walk to look at the moon.

10:10 pm - Load up the car.

10:20 pm - We all crawl into our tents.  We have Charlotte and I in the 'girls' tent and Daddy with Nathan in the 'boys' tent.  Charlotte reads me a story (she has pretty much memorized 'Chicka Chika Boom Boom').

10:30 pm - Listening in on the neighbors; one has an amazing lawyer who can get them out of any DUI charge, one has a 'blow' habit, one describes everything as f$*@ing A!  I lay looking forward to 'quite time' at 11.

10:40 pm - Surprisingly (I usually have a very difficult time falling asleep) I drift off to sleep while watching my sleeping girl.  This is a treat for me as my kiddies are so well sleep trained I never get to cuddle my girl to sleep (I should clarify - they weren't 'trained', we just kind of lucked out with good sleepers).  If I attempt to lay down with her for a bit at home, she orders me out of her room.......

5:15 am - I hear Stefan up with Nathan (a typical wake up time for him), I drift back to sleep and am glad I'm in the girls tent!

7:00 am - I get up, and think about how I can quietly open the zipper to get out without waking Charlotte

7:10 am - I wake up Charlotte with the zipper.

7:15 am - Stefan greets me with a coffee (can I love him any more) and he says he was up till midnight listening to the 'entertainment', he was up again at 2am, but he's well caffeinated at this point.

7:20 am - we cheers each other with our coffee at the success of our kids with camping!

7:40am - I start making us french toast.

7:58 am - Charlotte has her morning cartoons (she is NOT a morning person) and breakfast.  What did parents do before IPhones and IPads?

 

8:30 am - we clean up camp 

9:00 am - Charlotte plays with string

 

9:30 am - we leave camp

9:38 am - we pull up to our drive way to this.

Yep, that is our house, and that is a neighbors car on top of one of the trees that we had just 2 weeks ago trimmed.  It happened minutes before we got home.  Luckily no one was hurt (except the tree).  What is the world trying to tell us?  A couple years ago, something like this would have stressed us out - but now - we say "it's just a tree, and no one was hurt" and can't help but laugh.  Anyone have any landscaping ideas to replace the missing tree?

Despite the surprise when we came home, we are pretty happy with the camping trip and we all had a great time.  Looking forward to another trip soon!

Jiggity Jig

Home again, home again!

We are pretty excited to be home.  We managed to leave the hospital around 5:30 pm last night, and were home for a sushi dinner!  It was so nice to be able to sleep in our own beds.

Overall Charlotte handled the start of this phase really well.  As our discharge summary says, "She tolerated high-dose methotrexate well and cleared rapidly".  We add on the 'high dose' in front to differentiate it from the intrathecal methotrexate, which is what Charlotte gets every time she gets a lumbar puncture.

Despite having been changing Charlotte's diapers every 2 hours (or less), she still ended up with a very sore bum.  The chemo is so toxic, and very hard on the skin.  She had a bit of diarrhea in the hospital as well which didn't help.  We've been given a cream and we are doing our best to keep her bum clean, and dry and adding in lots of naked time.  Hoping it clears up soon.

Just tonight while brushing her teeth, we noticed a bit of bleeding gums which is a sign of mouth sores.  Mouth sores are usually at their worst 5-7 days after chemo starts so I guess we are right on target.  She hasn't seemed to have lost her appetite though and doesn't seem in a lot of pain (with her mouth, the bum is another story) so that is good.  

If you were to see Charlotte (and she wasn't having her bottom changed) you would smile - she is a pretty happy girl right now - and you would not believe she had heavy duty chemo a few days ago.

The positive part of all this is that Charlotte's ANC was 0.83 when we were discharged and the chemo she received this round doesn't have ongoing decreasing effects on her counts - so - we are out of the bubble (albeit with hand sanitizer in our pocket)!  With the ANC still below 1, we won't be hitting the ball pit at Ikea, but we can venture out as long as we are good with hand washing and staying clear of obviously sick people.  The 3 nights in the hospital to have 10 days out of the bubble is almost a fair trade off.  It may take a little longer for the methotrexate to clear on future visits (ie. we might be 4 nights in the hospital), but otherwise this should be pretty typical of the next 2 months.  We may even try to plan a couple short trips. 

We are planning on a close to home camping trip for tomorrow night - wish us luck!  We have never been with the kids, and the last time Stefan and I camped was probably back in 2004 when we did the West Coast Trail.  Charlotte is super excited to sleep in a tent and roast marshmallows; we are excited to watch our happy girl experience something new!  Stay tuned for our camping experience!

Interim Maintenance Phase

We started the interim maintenance phase yesterday.  We started the day off with a lumbar puncture at around 10:45 am.  Charlotte had to fast beforehand.  She had a banana at 2 am, and we could give her some water at 7 am.  She managed pretty well, asking for food a few times, but I managed to distract her. 

She just gets one new chemo drug this phase (along with a few others she has had before).  The new one she received is called high dose Methotrexate.  Even though it's called high dose, Charlotte's dose isn't too bad, some other patients can get more then double what Charlotte gets.  This chemo can be quite hard on the kidneys so it's given over 24 hours along with LOTS of fluids and she is closely monitored.  We are changing her soaked diapers every 2 hours which does not make for a good night sleep for Stefan, who does the night shifts.  The nurse described the Methotrexate to me as being like Raid.  Cancer cells LOVE folic acid, so this methotrexate disguises itself as folic acid and then basically nukes the cancer cells once they go after it - kinda cool for the science geeks out there. 

We don't know how long we will be in the hospital for - we have heard everything from 2 nights (Sunday) to Tuesday - your guess is as good as mine.  We will get to go home once the methotrexate is out of her system.  The phase calls for admittance to the hospital every 2 weeks for her chemo, but it's actually count dependent on when we come back in, so this phase could get stretched out to be quite a bit longer then the scheduled 63 days.

I'm a pretty proud mom - Charlotte is amazing - a very patient little trooper.  Last night as we left the clinic to head up to the ward - she started to get upset that we weren't going to the car, but calmed down and accepted the 'sleep over' at the hospital.  She's doing pretty good so far, the nausea probably won't hit her for another day or so.  The main side effect we have to be watchful for this phase is mouth sores which are very common with the methotrexate.

It's hard being back in the hospital.  The last time we were here was when she was diagnosed and it was a bit of a whirlwind.  I wasn't expecting it to be this hard, I guess a flashback to that week.  I'm looking forward to getting home.

A perfect day

Recipe for a perfect day:

 1. Great company and a waffle breakfast - My brother Jimmy and his lovely wife Danielle came over for a night from the Island.  It was really great to see them!  They are such down to earth thoughtful people, and my brother has a special skill with cheering us up (not that we needed it this week)!  The kids love them of course - Charlotte loves Uncle Jimmy's silliness, and Nathan loves to flirt with his beautiful Aunt!  We had a really nice evening with them, and a waffle brunch this morning before we had to say our good bye.

2. Letter from ICBC - We got a letter from ICBC today saying the deductible has been waived and repair to the car will be fully covered.  We weren't surprised as the accident was without a doubt not our fault - but it was nice to have the official word.  For those who are wondering, I didn't put the full details in the previous post as the other driver hadn't even called in yet.  What had happened was we were driving down a lane, and the other driver came out of their driveway and hit us pretty much head on.  Like I said before though, everyone was okay, and the other driver was a nice guy and apologetic.

3. Park and picnic with more great company - We finished up the day with a fish and chips picnic and some park time with our good friends Kelly and Mick and their two little boys.  Charlotte had a blast following her friend Owen around and Nathan enjoyed exploring the water park.

We are back to the lab tomorrow for blood work, and if Charlotte's levels are okay, we start the new phase Friday.  Hoping we will have some more perfect days in the next phase.

Marital Influences

In the 8.5 years that Stefan and I have been together, we have both managed to influence each other with 2 of our favorite hobbies.

I managed to convert my husband into a gambler a number of years ago (really it was a requirement of marrying me!).  It was no easy task as my conservative, virgo husband would cringe at the idea of losing one of his hard earned dollars.  But I have a special skill at corrupting teaching casino games.  If you want to learn - just meet me at the craps table.  Now one of our favorite date nights involves a trip to the casino.

Stefan's influence on me is much more admirable.  He's recently turned me into a runner!  For those who don't know me - that might seem like no big deal - and for those who know me as Stefan's wife probably just assumed I was a runner to be with Stefan.  I can hear my rugby girlfriends choking on their water reading this.  You see, I'm not actually the athletic type.  In fact, when I first joined rugby - I didn't even own a sports bra.  One of my first work out sessions with the girls, they had me do a squat press (with no weights on the bar) and had a good laugh when I complained "this really works your shoulders".

After Charlotte was diagnosed - our couple time turned into runs.  Stefan would push the kiddies in the stroller while I did my best to keep up with him.  Stefan was awesome and encouraged me every step of the way.  I started with 1.5 km, and have worked my way up to 10 km.  I've been trying to get out almost every day for some type of exercise, usually it's a quick 4 or 5km run. 

I think we can officially call me a runner and congratulate Stefan on a job well done!

Ouch

Charlotte's ANC count was still not high enough to start but it's at least starting to climb, it was at 0.30 and it needs to be 0.75 to start.  We are scheduled in for next Friday at 9:30am.  She'll have to fast that morning - 9:30 is the latest start we have ever had to do with fasting - not looking forward to trying to distract her from food and drink for that long - hoping it's not a scorcher like it's been.

We have been enjoying the sunny weather and trying not to overheat!  The past couple days we have all been a bit irritable at times, a combination of being sick for Charlotte and the heat and constraints of the bubble for the rest of us. 

Wednesday we went up to Belcarra Park for a dinner picnic.  Charlotte is all about the picnic these days!  We had a lovely meal and a little playtime in the park.

Nathan is everywhere.  I need to find him some knee pads as he is managing to scratch up his legs pretty good with his adventuring!  Here is my little daredevil climbing a slide....  Yep - my 9 month old - climbing slides!

After the picnic we did a little driving to explore beautiful Belcarra as we weren't quite ready to take our babies back home to the (hot) bubble......

Unfortunately this happened - ouch!

We are all okay (or seem it so far).  The kids were pretty scared at first but were able to be calmed down after a couple minutes.  Hopefully it won't be too much trouble to get everything sorted out.  Our car will be in the shop for at least a couple weeks.  We have already been given a rental car, and tomorrow we'll hit costco to replace our car seats.

We have a couple fun things planned over the next week to help us get through another week in the bubble.  We will try to hit Buntzen one day to cool off a bit as well (literally and figuratively).  Hope everyone is getting to enjoy the beautiful weather!

PS - big thanks to Scott Rickard for helping us out with clearing out and trimming of some of the trees in our front yard!

Anniversary (and update)

Charlotte's ANC was less then 0.1, basically as low as it can go, so Charlotte is not ready for the next phase yet.  Right now we are scheduled to start next Friday, but I'm guessing she won't be a go then either.  While she's been pretty good, she hasn't been quite herself, cranky and nausea spells.  Similar to where she was at just over a month ago. 

We are thankful for a bit of a delay with this gorgeous weather.  And, it's our 5 year wedding anniversary today - so we will be able to go out for dinner once the kids are in bed - a bit better then the dinner we were planning to have in Charlotte's hospital room!

Yep - 5 years!  We were one of those couples who married on 777 - July 7, 2007.

In 5 years we have gone from this....

 To this.

Stefan always hits it out of the park with anniversary presents.  I don't how he does it.  The 5 year theme is wood - I woke up to this lovely basket! 

 My favorite items were the wood picture frame with our kiddies and the beautiful bracelet!

Happy 5 years to the best hubbie ever!

Canada Day Update

Happy Canada Day!  We got out of the house and went to the Port Moody Firefighters pancake breakfast and spent an hour at Rocky Point Park to hit up the petting zoo.  Charlotte has no immune system right now - but since it was all outside - we ventured out!

We finished up the consolidation phase on Wednesday.  We are scheduled to start the interim maintenance phase on Friday but this will be count dependent again.  Her platelets have to be 75 and her ANC has to be 0.75.  Since we were delayed an extra 2 weeks at the midway point of this last phase - I have low expectations that we will actually start on Friday.  We will be getting blood work done on Thursday and will know that afternoon.  This next phase is roughly 2 months, with 2-3 night overnight hospital visits every 2 weeks.  She'll be getting a new chemo drug called High Dose Methotrexate (along with a few others) and we will be staying in the hospital until it's out of her system (typically 2 nights but could be a bit longer).  I'll get more info on the first day of the phase on the side effects, what to expect, etc.  I'll share once we know more.

Some pics from today....