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
superhero
Friday, July 27, 2012
Thursday, July 26, 2012
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
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!
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
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| "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!
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| Charlotte with her smore - this is the look we get when we say "smile" |
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| 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!
Tuesday, July 24, 2012
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!
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!
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