We get to go home tomorrow!
Charlotte has been looking really well. No more positive e.coli results since Saturday morning. Her kidney scans were normal. The doctor said to me today, "we might be able to drop her antibiotics down to once daily (currently three times a day). If we do, you could go home and just come in once a day to get her antibiotics until Tuesday.' Um.....YES PLEASE!
The other great news is her face has completely cleared up so we were taken off isolation. That means we got to enjoy the playroom today, and should be able to partake in some Halloween activities tomorrow before we go home.
We have our follow up with the neurologist regarding Charlotte's MRI at 11, and then should be able to home after that. Then we need to go back daily to get her dose of antibiotics.
Looking forward to our family being together at home! Happy Halloween everyone!
superhero
Wednesday, October 30, 2013
Monday, October 28, 2013
Just a little thing called E. Coli
For those in our facebook world - you are aware that Charlotte is currently in the hospital being treated for E.Coli. Here is the story so far:
Last week, there was a case of hand, foot and mouth disease at Charlotte's daycare on Monday. I kept both kids home Tuesday. Unfortunately, Charlotte developed a rash by her mouth on Wednesday. She hadn't had a fever, which usually happens before a rash develops with hand, foot and mouth, but we guessed that's what it was. On Saturday morning, Charlotte woke up at 4:30 with upset tummy. This is not that unusual for Charlotte. This usually happens at least once a month and we attribute it to her chemo or anxiety. No fever, so gave her some anti nausea medicine and tucked her back in. at 6:30 she woke again with stomach pain. Only slight fever (37.2). She was in obvious pain, so I called the oncologist on call. By the time the oncologist called back, she had hit 38, we were for sure going in to ER.
We arrived at ER and they checked her blood counts and took blood to test for cultures as per usual procedure for an oncology kid. They gave her antibiotics, and took what urine sample I could get (not much) and swabbed her mouth. While it didn't look like hand, foot and mouth (since no inside mouth sores, they were thinking a few other things), because of the other case, they agreed it might be, and possibly also a staph infection. Then we were sent home to come back the next morning for another dose of antibiotics.
We headed home and her fever spiked again at 7pm. A dose of tylenol (allowed now once she has been seen by dr. and antibiotics given) didn't bring the fever down. A call to the oncologist and we were told we could also give advil in this case, which did the trick. We were all in bed when we get a call at 10:30pm from the oncologist saying her cultures came back positive for E. Coli. We were to come back in to start a different anti-biotic as what she had been given isn't effective for E. Coli.
We didn't get a lot of info after that, but this is what I've pieced together:
We thank everyone for the amazing support we have received, yet again. You are all amazing!
Last week, there was a case of hand, foot and mouth disease at Charlotte's daycare on Monday. I kept both kids home Tuesday. Unfortunately, Charlotte developed a rash by her mouth on Wednesday. She hadn't had a fever, which usually happens before a rash develops with hand, foot and mouth, but we guessed that's what it was. On Saturday morning, Charlotte woke up at 4:30 with upset tummy. This is not that unusual for Charlotte. This usually happens at least once a month and we attribute it to her chemo or anxiety. No fever, so gave her some anti nausea medicine and tucked her back in. at 6:30 she woke again with stomach pain. Only slight fever (37.2). She was in obvious pain, so I called the oncologist on call. By the time the oncologist called back, she had hit 38, we were for sure going in to ER.
We arrived at ER and they checked her blood counts and took blood to test for cultures as per usual procedure for an oncology kid. They gave her antibiotics, and took what urine sample I could get (not much) and swabbed her mouth. While it didn't look like hand, foot and mouth (since no inside mouth sores, they were thinking a few other things), because of the other case, they agreed it might be, and possibly also a staph infection. Then we were sent home to come back the next morning for another dose of antibiotics.
We headed home and her fever spiked again at 7pm. A dose of tylenol (allowed now once she has been seen by dr. and antibiotics given) didn't bring the fever down. A call to the oncologist and we were told we could also give advil in this case, which did the trick. We were all in bed when we get a call at 10:30pm from the oncologist saying her cultures came back positive for E. Coli. We were to come back in to start a different anti-biotic as what she had been given isn't effective for E. Coli.
We didn't get a lot of info after that, but this is what I've pieced together:
- The E. Coli was most likely NOT from food since she didn't have any diarrhea or vomiting
- She had some blood in her urine (not visible, but appeared on test strip). She didn't have any pain peeing - but this still likely means she has a Urinary Tract Infection (UTI).
- The E. Coli probably came from the UTI.
- She also has a pretty sore bum, could be from the hand, foot and mouth, or just potty training in general. (while initial Dr. thought this could have been the source of the E. Coli - most likely it was the UTI.
- Hard to say how she got the UTI. She tends to hold her pee till the last possible moment. I don't think this is uncommon with 4 year olds - they don't want to stop playing to go to the potty. I always wipe her bum after the potty, but I don't think she is as co-operative with others. In general, some kids are just more susceptible to UTI's.
- We were told she would be in hospital for 10 days from her first negative test for e.coli
- Her blood culture that was taken Saturday night hasn't come back with any positive's as of yet - so we are hopeful it has been nicked already! This was kind of weird for me as the blood culture was taken before she started the new antibiotic, so not sure if first dose worked, or her own body fought it off.
- Luckily, her counts were all high, like that of a 'normal' kids - which led to other questions (like is she getting the right doses of chemo)
- Also kind of lucky that we have an oncology kid. I'm guessing if this was a 'normal' kid, this may have not been caught for a few more days.
- She will have a kidney/bladder scan some time during our stay.
- Her hand, foot and mouth rash is already looking better. Because of the hand, foot and mouth, she hasn't been able to leave her room. Hoping it clears up soon so she can go to the playroom, and participate in Halloween.
- She didn't eat Saturday/Sunday, but managed some of her favorites, hot cereal and rice today. She has been drinking and peeing normally.
- She is still taking her chemo, and started her steroids today.
- She has happily discovered xbox and that is her new favorite past time in the hospital.
- Overall, she has been in pretty good spirits. She told me today "I'm not sick anymore, I can go home now". It may be a long 10 days!
We thank everyone for the amazing support we have received, yet again. You are all amazing!
Wednesday, October 9, 2013
Relief
Stefan's MRI was stable. It's like getting another 6 month get out of jail free card.
"If the only prayer you said in your life was "thank you", that would suffice." - Meister Eckhart
"If the only prayer you said in your life was "thank you", that would suffice." - Meister Eckhart
Sunday, October 6, 2013
My baby boy turns 2
I can't believe it. My baby is 2! Where does time go? Okay - he's two tomorrow, but we celebrated today with family and chocolate cake. He was a very happy boy - and surprisingly seemed to know exactly what to do with both presents and cake. I haven't loaded birthday pics yet, but here is one of him from last week at mini rugby!
Other news:
Charlotte is back in the bubble. She had her treatment on Monday (we thankfully made it on time despite a flat tire thanks to Super Daddy) and we got the bad news of her being neutropenic (aka. bubble, ANC was 0.03 for those in the know). So she has been home from daycare all week hanging out with my mom (thank goodness for grandma's!). Will find out tomorrow if we are in the bubble for another week.
But - the good news from Monday's appointment more than made up for being back in bubble-land. We found out Charlotte will be DONE treatment in July! That's almost 6 months sooner than we were expecting. So excited she will be done before school starts - no steroid explanation needed for her Kindergarten teacher. Stefan will be turning the big 40 next September - so we will be planning for a big party in August!
Stefan's biannual MRI is Wednesday. My anxiety started early this round since there was a memorial for a friend from support group with the same tumour/treatment as Stefan, and Stefan has been tired lately. I'm sure his tiredness is more from September start up and back to work/routines - but I will be relieved to get past Wednesday. Send positive thoughts our way - and I'll send some back - please and thank you!
Other news:
Charlotte is back in the bubble. She had her treatment on Monday (we thankfully made it on time despite a flat tire thanks to Super Daddy) and we got the bad news of her being neutropenic (aka. bubble, ANC was 0.03 for those in the know). So she has been home from daycare all week hanging out with my mom (thank goodness for grandma's!). Will find out tomorrow if we are in the bubble for another week.
But - the good news from Monday's appointment more than made up for being back in bubble-land. We found out Charlotte will be DONE treatment in July! That's almost 6 months sooner than we were expecting. So excited she will be done before school starts - no steroid explanation needed for her Kindergarten teacher. Stefan will be turning the big 40 next September - so we will be planning for a big party in August!
Stefan's biannual MRI is Wednesday. My anxiety started early this round since there was a memorial for a friend from support group with the same tumour/treatment as Stefan, and Stefan has been tired lately. I'm sure his tiredness is more from September start up and back to work/routines - but I will be relieved to get past Wednesday. Send positive thoughts our way - and I'll send some back - please and thank you!
Sunday, September 15, 2013
Terry fox run
I love the Terry Fox run. The story, the memories of middle school runs, the community spirit at each run! We went to our local Port Moody run this year, which also happened to Stefan's birthday!
Stefan did the 10 km, while the kids, my sister-in-law, niece and I did the 2.5. I'm so incredibly proud of my little girl as she did pretty much the whole thing on her own; on her trike, and walking! For a typical 4 year old, no big deal, but for Charlotte it was a huge milestone! The cheerleaders from last year remembered her and we did the same photo!
Childhood Cancer fact of the week (i hate this one): two out of three cancer kids will suffer longer term side effects from their cancer related treatment - including organ toxicity, growth and hormonal deficiencies, infertility, and secondary cancers.
Wednesday, September 4, 2013
That time of year again...
I've been meaning to post for days - but life happens.
Our summer was really busy. There is something to be said for the forced hibernation of last summer. That being said, looking back at our summer, there was not one event we would have forgo-ed. We enjoyed every day! Many camping trips, catching up with friends, and relishing in our kids enjoyment of life!
I'm done with summer now though. Ready to embrace fall with open arms. Regular routine, fall baking, hot soups and chilis.
Kids are good. Charlotte had her treatment Tuesday. I think she had some anxiety though and did not sleep the night before, therefore I didn't either. Next time we will hold off on telling her till the morning of. She is now riding her trike in full force - so proud of her, and a huge milestone. We got a quick summary of her MRI results from the oncology doctor on Tuesday. She said there were a couple anomolies, but nothing alarming or urgent. Hard to tell if they were there before cancer, or a result of her treatment. We will likely need to monitor with future MRI's. I try not to read too much into this. And promised not to google all the big words in the print out I received. They will schedule a follow up with Neurology soon.
Nathan is an always happy little guy (unless he has just been scolded, or we have told him no, he can't have a cookie for breakfast).
A couple videos of their cuteness:
Stefan is currently back to his job at his new school at 40%. They have a good plan in place to get him back to full time.
And with September...comes Childhood Cancer Awareness month. A good time to start blogging again. In fact, I'll blog weekly this month with Childhood Cancer Facts.
This weeks - Did you know that childhood cancer is the leading cause of death by disease in Children?
All my fellow momcologists are going gold for September - join us. I'm happy to announce that BC Place will be lighting up gold September 21st to raise awareness. Stay tuned for details! Hope everyone is well!
Our summer was really busy. There is something to be said for the forced hibernation of last summer. That being said, looking back at our summer, there was not one event we would have forgo-ed. We enjoyed every day! Many camping trips, catching up with friends, and relishing in our kids enjoyment of life!
I'm done with summer now though. Ready to embrace fall with open arms. Regular routine, fall baking, hot soups and chilis.
Kids are good. Charlotte had her treatment Tuesday. I think she had some anxiety though and did not sleep the night before, therefore I didn't either. Next time we will hold off on telling her till the morning of. She is now riding her trike in full force - so proud of her, and a huge milestone. We got a quick summary of her MRI results from the oncology doctor on Tuesday. She said there were a couple anomolies, but nothing alarming or urgent. Hard to tell if they were there before cancer, or a result of her treatment. We will likely need to monitor with future MRI's. I try not to read too much into this. And promised not to google all the big words in the print out I received. They will schedule a follow up with Neurology soon.
Nathan is an always happy little guy (unless he has just been scolded, or we have told him no, he can't have a cookie for breakfast).
A couple videos of their cuteness:
Stefan is currently back to his job at his new school at 40%. They have a good plan in place to get him back to full time.
And with September...comes Childhood Cancer Awareness month. A good time to start blogging again. In fact, I'll blog weekly this month with Childhood Cancer Facts.
This weeks - Did you know that childhood cancer is the leading cause of death by disease in Children?
All my fellow momcologists are going gold for September - join us. I'm happy to announce that BC Place will be lighting up gold September 21st to raise awareness. Stay tuned for details! Hope everyone is well!
Thursday, July 25, 2013
10 days - Her version
Well, if you are reading this, it means I survived.
Stefan recently went on his 10 day kayaking trip in Oregon with Survive and Thrive Expeditions.
Meanwhile, I was at home with the kiddies - here is a recap of the 10 days!
Day 1 - Sunday July 7th
Our anniversary - and I'm sending Stefan off for 10 days. We won't be able to text or call each other. TEN days! Ackkkk! I don't think I had realized the full potential of how hard this would be - how much I would miss him - when I signed him up! I could just see Stefan though, relaxed, happy face, sitting back on his kayak! It will be worth it.
We had an early start - Stefan's flight was at 7am. I had my parents spend the night so I wouldn't have to bring the kids. At 4:40, we are about to head out the door - me: "you have your passport?", "ticket?", "cash and credit card?". stefan: "yes".
We are about a third of the way to the airport, when all of a sudden, Stefan FLIPS out. "I don't have my passport $%#@ $&%(#, #U$U@O@O#I@$UI##O$.........." Perhaps a small dent left in the side door. me: "okay, calm down honey" - we pull over to look, sure enough, it's not here. Phone home, and yes, it's on the couch. I get my stepdad to meet us half way. On the way back.....uh oh - flashing lights in my rear view mirror. Stefan "$#@*". Between Stefan's babbling and my clean record, we are lucky enough to get a warning. We make it to grab the passport and to the airport (doing the speed limit!) by about 5:45. Luckily I had checked Stefan in the night before. He made it - with 14 minutes to spare!
A few more texts when he arrives safe - and he's cut off!
Meanwhile - back at home, I've got two very cranky kids. I guess the heat and their colds and the previous night was a late night for them. My parents take pity on me and hang with me for the day. I feed them well with a nice BBQ dinner. Whew - day one done.
Day 2 - Monday July 8th
Hospital day for Charlotte. Since she has to fast - I wake up early with Nathan so I can try to get him fed before getting Charlotte from bed as I don't want her to see him eating. We manage to get out of the house by about 7:30 and go to pick up my Mom who will help us out. We arrive at the hospital for her 8:30 appointment. Because both kids are sick - we are confined to a room - no problem - Nathan uses the IPAD while Charlotte plays. She get's her lumbar puncture and her hour long lay down with plenty of snacks. We make it out by 10:30 and drop off my mom before heading home for naps. We even manage to make it out for the evening - Whitespot for dinner and the library after for some quite time. All in all a pretty good day.
Day 3 - Tuesday July 9th
I work - a break from the regular home routine. I'm all excited because I found a bouncy castle on Craigs List for the kids. The guy comes by after work to set it up. It inflates. It smells a bit musty - first time he opened it this year. My warning bells are ringing - but I feel all bad that the guy came to my house AND set it up for me. 5 minutes after he leaves - I'm kicking myself as it's pretty moldy. I do try to return it - but I get "it's a craigs list sale - are you absurd?". I scrub it down with vinegar and hope the sun will 'kill' the mold. I'm grumpy from my rip-off purchase. Missing my hubby like crazy.
Day 4 - Wednesday July 10th
Charlotte's worst 'steroid' day. She's pretty emotional and wants lots of cuddles. Normally this is just fine, but if Nathan needs something, all hell breaks loose. I hear news of an adorable little oncology kid earning her angel wings. Two pediatric oncology kid deaths in one week. Not easy.
We brave a quick trip to the mall as Nathan is desperate for some shoes (his are giving him blisters). My mom joins us, and her and Charlotte 'build a bear'. We hit target - no luck with shoes. We suffer a few tantrums from both kids and lots of dirty looks (really wishing Charlotte had a "I have cancer and am on steroids - be patient with me" button. Back home for lunch.
My sink is clogged after I cleared out the fridge in the morning (note to self - don't overuse garborator). I phone a good friend of Stefans who comes to help save the day. After 5 hours of working on it, and replacing all the piping under the sink - still not working, and a leak. Go sinkless for the night/day. Do dishes in the bathroom.
I have a massage booked that night - but it gets cancelled. I'm missing Stefan terribly and thinking "how am I going to do 10 days!"
Since I have a sitter already lined up - I cease the opportunity to head to River Rock to visit my bestie, Michelle, who is only there for the night on her way to a wedding in Victoria. Get a visit in, AND win $160 at the casino - feeling a bit better.
Day 5 - Thursday July 11th
Another work day. News of one more oncology kid earning angel wings. Three in one week. I have an after work event I had been all prepared to go to. My parents were going to watch the kids. But I'm feeling a bit in a funk, and tired (and hadn't put out Charlotte medicine for the night, and feeling anxious about the lack of kitchen sink). I head home instead and have nice evening with my kidlets. My step dad replaces the drain which stops the leak, we try drano on the clog. It works! I have a sink again! My mom stays and we have a couple glasses of wine and play some cards.
Day 6 - Friday July 12th
My Mom stayed the night so joins us for the day. We make a trip to Suter Brook in Port Moody so Charlotte can get a cinnamon bun and we can try to find shoes for Nathan again. The kids shop is completely out of shoes - no luck again. Kids are doing a lot better - Charlotte has adjusted to her steroids. We are getting into the swing of things!
Find out that Charlotte's MRI has been scheduled for Monday. Manage to get lots of cleaning up done at home. We go to Rocky Point for an evening ice cream after dinner. Try for the park, but Charlotte sees someone eating french fries, and wants some....NOW. Back home for fries. Only 4 more days - we can do this!
Day 7 - Saturday July 13th
Charlotte's last dose of steroids. I really need shoes for Nathan - can only think of 'The Shoe Box' on Granville Island as the place to go - know I can't do that on my own with the kids! A few texts to my friend who lives near there - and we have a plan! Meet my friend, 'Aunty Dana', and we head to Granville Island. Nathan has a tantrum on the walk there (the whole way there!!!!). We get to the water park and Charlotte runs around. Nathan is still upset. In transitioning him from swimsuit back to clothes - he is finally happy when nude. Leave him in his diaper and he is now the happiest baby on the island! Note to self - naked kid = happy kid! Hit the kids market - Charlotte has a blast with Dana while I finally find shoes! Nathan needs the widest shoes in the store - glad we came here as selection is great! We hit the market for lunch. Nathan chases the pigeons and dances. My kid is so cute, the tourists are taking pictures (hmmm, or they just don't have baby nudists where they come from?)! Charlotte is really great and is loving Aunty Dana. Head home for late naps and a lazy evening.
Day 8 - Sunday July 14th
When friends offered help after my 'woe is me' facebook post on rough day #4, I said 'help us stay busy'. So we made plans with friends in North Van on Sunday. We hit 'Party on the Pier' in Lonsdale Key for some fun - bouncy castle, crafts, face painting. Charlotte had a blast, although her favorite part was 'Jude and Ewan's house and the marble tower with Heather'.
We went straight from there to dinner at my mom's with my brother and cousin. Yummy dinner and distracted kids for a whole day - success!
Day 9 - Monday July 15th
Charlotte's MRI isn't scheduled until 1:30 - a lot of planning goes into making it a smooth day. I wake Charlotte up to have breakfast in mommy's bed at 6. Take her food away at 6:30 as she has to fast the rest of the day. I get some food into Nathan early on. Charlotte has some frozen apple juice slush at 9. I have the babysitter come at 9:30 and take Charlotte out for distractions - to the toy store. We entertain ourselves in Toys R us until 11:30, off to the hospital. My kid is awesome! She only asks for food twice and is very understanding when I explain to her she can't until she has had the pictures of her brain done. She gets in around 2. I have a nervous wait until 3 (I thought it was only going to be 20 minutes) until I'm called in to the recovery room to see my girl. She is anxious to get home - and we leave as soon as possible!
Head home for her requested macaroni and cheese - anything you want my girl! I clean the house in preparation for Stefan's return tomorrow! Get a late night email 'I'm still alive' from Stefan.
Day 10 - Tuesday July 16th - Last Day!
We made it! Stefan's flight is set to arrive at 11:30. We spend the morning making a "We love daddy" sign for the airport and pick up some superman balloons! I can not tell you how excited the kids were to see Stefan - especially Nathan who proceeded to dance and clap! Soooooo happy to have him home! Would I do it again? For sure - Stefan had an amazing trip, and I'm so happy for him and the amazing opportunity he had! (plus, now I guess I get a turn right?!)
Stefan recently went on his 10 day kayaking trip in Oregon with Survive and Thrive Expeditions.
Meanwhile, I was at home with the kiddies - here is a recap of the 10 days!
Day 1 - Sunday July 7th
Our anniversary - and I'm sending Stefan off for 10 days. We won't be able to text or call each other. TEN days! Ackkkk! I don't think I had realized the full potential of how hard this would be - how much I would miss him - when I signed him up! I could just see Stefan though, relaxed, happy face, sitting back on his kayak! It will be worth it.
We had an early start - Stefan's flight was at 7am. I had my parents spend the night so I wouldn't have to bring the kids. At 4:40, we are about to head out the door - me: "you have your passport?", "ticket?", "cash and credit card?". stefan: "yes".
We are about a third of the way to the airport, when all of a sudden, Stefan FLIPS out. "I don't have my passport $%#@ $&%(#, #U$U@O@O#I@$UI##O$.........." Perhaps a small dent left in the side door. me: "okay, calm down honey" - we pull over to look, sure enough, it's not here. Phone home, and yes, it's on the couch. I get my stepdad to meet us half way. On the way back.....uh oh - flashing lights in my rear view mirror. Stefan "$#@*". Between Stefan's babbling and my clean record, we are lucky enough to get a warning. We make it to grab the passport and to the airport (doing the speed limit!) by about 5:45. Luckily I had checked Stefan in the night before. He made it - with 14 minutes to spare!
A few more texts when he arrives safe - and he's cut off!
Meanwhile - back at home, I've got two very cranky kids. I guess the heat and their colds and the previous night was a late night for them. My parents take pity on me and hang with me for the day. I feed them well with a nice BBQ dinner. Whew - day one done.
Day 2 - Monday July 8th
Hospital day for Charlotte. Since she has to fast - I wake up early with Nathan so I can try to get him fed before getting Charlotte from bed as I don't want her to see him eating. We manage to get out of the house by about 7:30 and go to pick up my Mom who will help us out. We arrive at the hospital for her 8:30 appointment. Because both kids are sick - we are confined to a room - no problem - Nathan uses the IPAD while Charlotte plays. She get's her lumbar puncture and her hour long lay down with plenty of snacks. We make it out by 10:30 and drop off my mom before heading home for naps. We even manage to make it out for the evening - Whitespot for dinner and the library after for some quite time. All in all a pretty good day.
Day 3 - Tuesday July 9th
I work - a break from the regular home routine. I'm all excited because I found a bouncy castle on Craigs List for the kids. The guy comes by after work to set it up. It inflates. It smells a bit musty - first time he opened it this year. My warning bells are ringing - but I feel all bad that the guy came to my house AND set it up for me. 5 minutes after he leaves - I'm kicking myself as it's pretty moldy. I do try to return it - but I get "it's a craigs list sale - are you absurd?". I scrub it down with vinegar and hope the sun will 'kill' the mold. I'm grumpy from my
Day 4 - Wednesday July 10th
Charlotte's worst 'steroid' day. She's pretty emotional and wants lots of cuddles. Normally this is just fine, but if Nathan needs something, all hell breaks loose. I hear news of an adorable little oncology kid earning her angel wings. Two pediatric oncology kid deaths in one week. Not easy.
We brave a quick trip to the mall as Nathan is desperate for some shoes (his are giving him blisters). My mom joins us, and her and Charlotte 'build a bear'. We hit target - no luck with shoes. We suffer a few tantrums from both kids and lots of dirty looks (really wishing Charlotte had a "I have cancer and am on steroids - be patient with me" button. Back home for lunch.
My sink is clogged after I cleared out the fridge in the morning (note to self - don't overuse garborator). I phone a good friend of Stefans who comes to help save the day. After 5 hours of working on it, and replacing all the piping under the sink - still not working, and a leak. Go sinkless for the night/day. Do dishes in the bathroom.
I have a massage booked that night - but it gets cancelled. I'm missing Stefan terribly and thinking "how am I going to do 10 days!"
Since I have a sitter already lined up - I cease the opportunity to head to River Rock to visit my bestie, Michelle, who is only there for the night on her way to a wedding in Victoria. Get a visit in, AND win $160 at the casino - feeling a bit better.
Day 5 - Thursday July 11th
Another work day. News of one more oncology kid earning angel wings. Three in one week. I have an after work event I had been all prepared to go to. My parents were going to watch the kids. But I'm feeling a bit in a funk, and tired (and hadn't put out Charlotte medicine for the night, and feeling anxious about the lack of kitchen sink). I head home instead and have nice evening with my kidlets. My step dad replaces the drain which stops the leak, we try drano on the clog. It works! I have a sink again! My mom stays and we have a couple glasses of wine and play some cards.
Day 6 - Friday July 12th
My Mom stayed the night so joins us for the day. We make a trip to Suter Brook in Port Moody so Charlotte can get a cinnamon bun and we can try to find shoes for Nathan again. The kids shop is completely out of shoes - no luck again. Kids are doing a lot better - Charlotte has adjusted to her steroids. We are getting into the swing of things!
Find out that Charlotte's MRI has been scheduled for Monday. Manage to get lots of cleaning up done at home. We go to Rocky Point for an evening ice cream after dinner. Try for the park, but Charlotte sees someone eating french fries, and wants some....NOW. Back home for fries. Only 4 more days - we can do this!
Day 7 - Saturday July 13th
Charlotte's last dose of steroids. I really need shoes for Nathan - can only think of 'The Shoe Box' on Granville Island as the place to go - know I can't do that on my own with the kids! A few texts to my friend who lives near there - and we have a plan! Meet my friend, 'Aunty Dana', and we head to Granville Island. Nathan has a tantrum on the walk there (the whole way there!!!!). We get to the water park and Charlotte runs around. Nathan is still upset. In transitioning him from swimsuit back to clothes - he is finally happy when nude. Leave him in his diaper and he is now the happiest baby on the island! Note to self - naked kid = happy kid! Hit the kids market - Charlotte has a blast with Dana while I finally find shoes! Nathan needs the widest shoes in the store - glad we came here as selection is great! We hit the market for lunch. Nathan chases the pigeons and dances. My kid is so cute, the tourists are taking pictures (hmmm, or they just don't have baby nudists where they come from?)! Charlotte is really great and is loving Aunty Dana. Head home for late naps and a lazy evening.
Day 8 - Sunday July 14th
When friends offered help after my 'woe is me' facebook post on rough day #4, I said 'help us stay busy'. So we made plans with friends in North Van on Sunday. We hit 'Party on the Pier' in Lonsdale Key for some fun - bouncy castle, crafts, face painting. Charlotte had a blast, although her favorite part was 'Jude and Ewan's house and the marble tower with Heather'.
We went straight from there to dinner at my mom's with my brother and cousin. Yummy dinner and distracted kids for a whole day - success!
Day 9 - Monday July 15th
Head home for her requested macaroni and cheese - anything you want my girl! I clean the house in preparation for Stefan's return tomorrow! Get a late night email 'I'm still alive' from Stefan.
Day 10 - Tuesday July 16th - Last Day!
We made it! Stefan's flight is set to arrive at 11:30. We spend the morning making a "We love daddy" sign for the airport and pick up some superman balloons! I can not tell you how excited the kids were to see Stefan - especially Nathan who proceeded to dance and clap! Soooooo happy to have him home! Would I do it again? For sure - Stefan had an amazing trip, and I'm so happy for him and the amazing opportunity he had! (plus, now I guess I get a turn right?!)
10 days - his version
Name of the trip: Survive and Thrive
I was very lucky to have Taleen set up a trip for me with other cancer supporters and survivors. All participants were under the age of forty. All were looking to do a new physical challenge. All were looking to see how others had done in the post treatment era. Strong support physically, mentally and emotionally together.
Physically the trip was awesome. (Huge thanks to VOBOC, Voyaging Out Beyond Our Cancer, for sponsoring my trip for me, and the gifts to my family!) The water level was low. It was slow in calm areas which required much paddle work. It was intense in rapid areas, especially when rocks were a plenty in the low water. We usually started kayaking between 8:30 and 9:00 am and finished around 6:00 pm.
Mentally it tested how well we could communicate, improve and/or adapt to natural conditions. The equipment we used was limited. Each of us was responsible for transporting two whole group meals and equipment for campsites. We were responsible for taking all garbage/left overs/poop with us on the way out. We were allowed to pee in the river. Poop was to be stored similarily to how we pick up after a pet dog. The enviroment was a priority - No one was to take away from its beauty.
I really found this mental testing valuable as there were many last minute kayaking changes that tested communication skills and patience. It showed how important it was to be prepared in the mornings, properly discuss approaches to river and camp concerns (nothing like thinking about rattle snakes), and ensure the team members had each others back.
Emotionally, I found this strengthening. Our morning and evening discussions about developing personal inner thoughts strength was enlightening. We were also given a full 24 hours to reflect on life - completely in an isolated area and completely alone. It was rewarding experience.
Someone from our group put together this beautiful 20 minute video of our trip.
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| 72 km kayaking trip on the Owhyee River in Oregan. Great group of people, amazing experience. |
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| A no impact trip, which meant EVERYTHING was packed up - these are 'poop' tubes. |
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| Beautiful scenery |
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| There were 10 cancer effected participants (survivors and family supporters) and four guides. |
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| Water levels were low, trip was at risk of being cancelled. |
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| My 'solo' place. We had 24 hours of being on our own to reflect, come up with a mission. Received letters from home this day. |
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| Tackling some rapids. The trip was a physical challenge. |
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| petroglyphs |
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| Sunset! Amazing trip! Missed my family - but would do it again in a heartbeat! |
Wednesday, July 17, 2013
Camping Lessons
This post is a little late. We did our first camping trip of the season on the July long weekend. Since we had two successful overnight camping trips last summer with our then 3 year old and 6 month old - we thought we were pros.
We were quickly put in our place after our first 24 hours!
We went to the Shuswap for our first annual SFU Rugby Old Girls Camping trip. There were 7 of us and our families (many hubbies were Rugby alumni as well). 10 little ones in all! Despite a few hiccups the little bit - we had a blast!
Camping Lesson one - ALWAYS prepare for rain. Even if the forecast is clear skies. Not packing rain gear is the equivalent of killing a dozen spiders. Just pack it!
Camping Lesson two - if you don't pack for rain - at least have a sister or friends near by you can arrange to visit (ahem - get them to play with yours kids and eat their food all while staying dry!)
We arrived late Friday night as Stefan had to work. That meant the kids didn't get to sleep until 11pm. Unfortunately, Nathan was up early at 4:30am and decided it was time to party. When we made it out of the tent at 7:30 to prepare coffee - all of a sudden - thunder! It started to rain, and we packed up into the car (since we didn't have rain gear!). The moment Nathan was in his car seat - he was out - there was no way we were stopping. So we crashed my sisters in Salmon Arm for a visit, and then to friends in Vernon for lunch. By the time we were back at camp - we didn't see another drop of rain our whole stay.
Nathan slept much better after the first night - his usual 11-12 hours! And we were all 'happy campers' from then on out!
We had an amazing time with our big group! Dirty happy kids running around, campfire singing, smores, and beach time! We are already planning year 2!
We were quickly put in our place after our first 24 hours!
We went to the Shuswap for our first annual SFU Rugby Old Girls Camping trip. There were 7 of us and our families (many hubbies were Rugby alumni as well). 10 little ones in all! Despite a few hiccups the little bit - we had a blast!
Camping Lesson one - ALWAYS prepare for rain. Even if the forecast is clear skies. Not packing rain gear is the equivalent of killing a dozen spiders. Just pack it!
Camping Lesson two - if you don't pack for rain - at least have a sister or friends near by you can arrange to visit (ahem - get them to play with yours kids and eat their food all while staying dry!)
We arrived late Friday night as Stefan had to work. That meant the kids didn't get to sleep until 11pm. Unfortunately, Nathan was up early at 4:30am and decided it was time to party. When we made it out of the tent at 7:30 to prepare coffee - all of a sudden - thunder! It started to rain, and we packed up into the car (since we didn't have rain gear!). The moment Nathan was in his car seat - he was out - there was no way we were stopping. So we crashed my sisters in Salmon Arm for a visit, and then to friends in Vernon for lunch. By the time we were back at camp - we didn't see another drop of rain our whole stay.
Nathan slept much better after the first night - his usual 11-12 hours! And we were all 'happy campers' from then on out!
We had an amazing time with our big group! Dirty happy kids running around, campfire singing, smores, and beach time! We are already planning year 2!
Monday, June 17, 2013
I did it!
Yep - I did it. And my title is multi-tasking today, because not only did I complete the 240km Ride To Conquer Cancer Benefiting the BC Cancer Foundation, I also married the most amazing man in the world. Details below. Warning: some mushiness included.
On Saturday I embarked on the ride. That meant getting up at 5:15 to be at the starting point for 6:30. I was a little worried as the kids cold seemed to hit me on Friday. I left work early to catch a little nap in hope to ward the thing off. I managed! At least it was only a sore throat cold, so I could breath unlike one of my poor team mates.
We left the starting point around 7:30 and arrived at the border at 8:30 (17.5 km in) for a long wait. We were joined by our amazing Captain, Zuri Scrivens to the border. She had just finished chemo on Thursday - awesome of her to join us, and inspiring for our whole team. Once we got going again, it was a very scenic ride (and one more pit stop) to our lunch stop in Bellingham at km 71.6. And who was there waiting for me? My hubby and two adorable kids. I had told Stefan I thought he was crazy for trying to take a road trip with snotty nosed Nathan and Steroid-ed up Charlotte, but he insisted. It sure was nice to see them there as I rolled into lunch.
After lunch, a never-ending hill, one more pit stop at km 99.5 and we arrive at Camp in Mt. Vernon at km 123! The pit stops are fantastic, tons of yummy food, water, Gatorade, sunscreen, etc. Camp was also great, a tent city, music, more yummy food and massages.
Day two was another early start. I managed to sleep pretty well, but a few of my team mates weren't as lucky! There was a train near by, and lots of zippering of tents as people were hydrating/emptying bladders! Music started at 5am, but somehow I managed another hour of sleep before getting up at 6. We were all ready to get going at 7, but needed to wait for a team mate who we thought we were meeting at 7:30. We left shortly before 8 without our team mate. (We were getting very worried about him - but it was a miscommunication as he thought we were meeting at 8 - he rolled in not too far behind us at the finish line).
The first 21.5 km went by like a breeze. As everyone has heard, there was a tragic accident at km 40. Heartbreaking. It happened about 15 minutes before I got there. They had stopped the riders and we were waiting for a bit until they got the permission from an owner of the field next to the road that we could walk through. So I (and hundreds of riders) walked past while they were doing CPR. The mood for sure shifted. The rest of the ride everyone was even more careful and courteous then usual (I have to say rider etiquette and safety is high already on the ride). We carried on to a quieter lunch by the lake at km 69.4.
There was a good hill before lunch, and a number after. They were tough - but at least you could see the end of each one unlike the never ending one on day one. I thought I might have to walk the last one - but I made it. The last pit stop was at km 108.2, only 6.6 km from the end where teams congregate so they can cross the finish line together. Zuri joined us again for the final ride in. Crossing the finish line was the highlight of the trip as Charlotte and Stefan appeared in a video on the big screen above the line.....I started bawling like a baby! They were at the finish line to greet me with big hugs!
Yes - my awesome hubby drove down to Seattle with our girl just to see me at the finish line! He rocks! He also sent me flowers today at work. He makes it very easy for me to love him.
So - was it hard? It certainly wasn't easy! But it wasn't as hard as battling cancer, watching your loved one get diagnosed with cancer, brain surgery, or dealing with a kid on steroids! Would I do it again - you betcha! I encourage everyone to think about joining - you do not have to be fit or an experienced rider - hey, I did it! Join us here Nothing Butt Class. I haven't signed up....yet.....still waiting to be able to feel my bum again. ;)
Thank you to everyone who donated. Thank you to my amazing team, Nothing Butt Class, and my friend Kelly for joining us on the ride. Thank you to our inspirational captain Zuri Scrivens for staying so damn strong and positive. And, last but not least, especially big thanks to my wonderful husband. While I rode for him and Charlotte. It was a lot of extra work for him. Not just this weekend. But the extra household jobs he has done while I trained. I love you Stefan Lageston! I love how supportive you are, the amazing father and man that you are, and I love making you proud!
On Saturday I embarked on the ride. That meant getting up at 5:15 to be at the starting point for 6:30. I was a little worried as the kids cold seemed to hit me on Friday. I left work early to catch a little nap in hope to ward the thing off. I managed! At least it was only a sore throat cold, so I could breath unlike one of my poor team mates.
We left the starting point around 7:30 and arrived at the border at 8:30 (17.5 km in) for a long wait. We were joined by our amazing Captain, Zuri Scrivens to the border. She had just finished chemo on Thursday - awesome of her to join us, and inspiring for our whole team. Once we got going again, it was a very scenic ride (and one more pit stop) to our lunch stop in Bellingham at km 71.6. And who was there waiting for me? My hubby and two adorable kids. I had told Stefan I thought he was crazy for trying to take a road trip with snotty nosed Nathan and Steroid-ed up Charlotte, but he insisted. It sure was nice to see them there as I rolled into lunch.
After lunch, a never-ending hill, one more pit stop at km 99.5 and we arrive at Camp in Mt. Vernon at km 123! The pit stops are fantastic, tons of yummy food, water, Gatorade, sunscreen, etc. Camp was also great, a tent city, music, more yummy food and massages.
Day two was another early start. I managed to sleep pretty well, but a few of my team mates weren't as lucky! There was a train near by, and lots of zippering of tents as people were hydrating/emptying bladders! Music started at 5am, but somehow I managed another hour of sleep before getting up at 6. We were all ready to get going at 7, but needed to wait for a team mate who we thought we were meeting at 7:30. We left shortly before 8 without our team mate. (We were getting very worried about him - but it was a miscommunication as he thought we were meeting at 8 - he rolled in not too far behind us at the finish line).
The first 21.5 km went by like a breeze. As everyone has heard, there was a tragic accident at km 40. Heartbreaking. It happened about 15 minutes before I got there. They had stopped the riders and we were waiting for a bit until they got the permission from an owner of the field next to the road that we could walk through. So I (and hundreds of riders) walked past while they were doing CPR. The mood for sure shifted. The rest of the ride everyone was even more careful and courteous then usual (I have to say rider etiquette and safety is high already on the ride). We carried on to a quieter lunch by the lake at km 69.4.
There was a good hill before lunch, and a number after. They were tough - but at least you could see the end of each one unlike the never ending one on day one. I thought I might have to walk the last one - but I made it. The last pit stop was at km 108.2, only 6.6 km from the end where teams congregate so they can cross the finish line together. Zuri joined us again for the final ride in. Crossing the finish line was the highlight of the trip as Charlotte and Stefan appeared in a video on the big screen above the line.....I started bawling like a baby! They were at the finish line to greet me with big hugs!
Yes - my awesome hubby drove down to Seattle with our girl just to see me at the finish line! He rocks! He also sent me flowers today at work. He makes it very easy for me to love him.
So - was it hard? It certainly wasn't easy! But it wasn't as hard as battling cancer, watching your loved one get diagnosed with cancer, brain surgery, or dealing with a kid on steroids! Would I do it again - you betcha! I encourage everyone to think about joining - you do not have to be fit or an experienced rider - hey, I did it! Join us here Nothing Butt Class. I haven't signed up....yet.....still waiting to be able to feel my bum again. ;)
Thank you to everyone who donated. Thank you to my amazing team, Nothing Butt Class, and my friend Kelly for joining us on the ride. Thank you to our inspirational captain Zuri Scrivens for staying so damn strong and positive. And, last but not least, especially big thanks to my wonderful husband. While I rode for him and Charlotte. It was a lot of extra work for him. Not just this weekend. But the extra household jobs he has done while I trained. I love you Stefan Lageston! I love how supportive you are, the amazing father and man that you are, and I love making you proud!
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| being greeted by family as I roll into lunch on day 1 |
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| Me with Kelly on start of day two |
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| Day 2 pit stop |
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| Team photo part 1 (Bryn, Kim, Barbara, Steve, Zuri and I) |
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| Team photo part 2 (Tom, Kim, me and Zuri) |
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| Who I rode for! |
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| my flowers - card says "to the best mom and wife, for making the "Ride to Conquer Cancer"! |
Sunday, May 26, 2013
We have a life!
We have been busy! So busy, that it's best I resort to bullet points to summarize what we have been up to, and what's coming up!
Whew - I'm tuckered out just reading this list! We are happy, tired and thankful here in the Lageston house! Take care all!
- Stefan and I went to Vegas. Without the kids. Just the two of us, shopping, sun, a show, and a bit of gambling. We had such a great time, and didn't even worry about the kids (we worried about my parents getting tuckered out watching said kids - but they managed just fine - thanks Mom and Gerald!!)
- Nathan is addicted to the wiggles.
- Any free time I have lately has been used playing with my kids, and riding my bike - hence the lack of blog posts.
- Stefan's work is going well, he is pretty much at full hours, and while tired, he is managing. He will be starting at a new school come July. Not sure if that means he will be still on long term disability, or partially on it, only time will tell.
- We were on TV! CTV (and
Jason Pires, who is fantastic) did a segment on my little family and my
participation in the Ride to Conquer Cancer. It was fun to film, and
they did a great job!
link to CTV Clip - Charlotte is back in the bubble, and has been now for 2 weeks as her counts are low. We haven't noticed too much though since we have someone come to the house to watch the kids. You would not be able to tell, as she remains her happy energetic self. She is off for bloodwork again tomorrow to see if we can resume her chemo.
- Charlotte turned 4
with a princess birthday party! She had a great time with her 3
cousins, and a few of her favorite people (Tootoo, Grandpa, Alex, and
her Aunties and Uncles). She dolled herself up with her new princess
gear and gave us some lovely poses and "I'm sooooo beautiful". I don't
think I have ever seen her as happy as at her party!
- We did our 3rd Brain Tumour Foundation Spring Sprint. It was actually my first time running it as I was pregnant the first year, and home with Charlotte the second year. Thanks to all on our team for coming out! Next weekend we will be participating in the Child Run!
- We had a great date night at a fundraiser for the Gaby Davis Foundation! A trolley ride to Gastown and Stanley Park with fabulous dinner and drinks!
- We went to Stefan's absolutely favorite event of the year - the Eat Vancouver show. We went to the show just after Stefan, Rebecca and Abbey met up with/watched a rugby game of the SFU Old Boys in Kitsilano
- We are making plans for the summer, which include: Camp Goodtimes, Stefan taking an 8 day kayaking trip with Survive and Thrive Expeditions, a couple camping trips, and a trip to the Okanagan!
Whew - I'm tuckered out just reading this list! We are happy, tired and thankful here in the Lageston house! Take care all!
Tuesday, May 7, 2013
Knock Knock
We are doing great! Charlotte has just entered the 'knock knock' joke phase. Tonight I participated in an over an hour of...
Charlotte: knock knock
me: who's there
Charlotte: {insert any word here} {example, chair, slide, mommy, sand, bird, etc}
me: {word} who
Charlotte: hysterical giggles
repeat
I did teach her the only two knock knock jokes I know - "boo who", and the "banana/banana/oranged you glad I didn't say banana" combo.
I am loving this age!
Nathan is going to give me a heart attack. Climbing chairs, tables, etc. He never looks where he's going, and will run head on into walls. Aside from needing to have him start wear a helmet, he loves to chat, give kisses, and feed mommy mud pies.
Charlotte is also more mobile these days. Not quite running yet, but able to jump, and is now climbing ladders. A couple weeks ago was the first time I was able to take the kids to the park and not need to hover over either of them - both were able and capable to climb around by themselves! Heaven!
Also new is the 'sibling' love. They are at the age now where they can 'play'. Mostly tickling or chasing each other. Charlotte tells me "I love my brother", and when I asked her who her best friend in the whole world was tonight, she said "Nathan". LOVE!
Stefan is doing well with work and is up to a 30 hour work week. I have been getting ready for the ride to conquer cancer and am really enjoying my bike rides! I'm sure everyone is enjoying the weather as much as us!
You know what's awesome? Besides all of you lovely readers? Not blogging about cancer, and just about how wonderful my little family is.
Charlotte: knock knock
me: who's there
Charlotte: {insert any word here} {example, chair, slide, mommy, sand, bird, etc}
me: {word} who
Charlotte: hysterical giggles
repeat
I did teach her the only two knock knock jokes I know - "boo who", and the "banana/banana/oranged you glad I didn't say banana" combo.
I am loving this age!
Nathan is going to give me a heart attack. Climbing chairs, tables, etc. He never looks where he's going, and will run head on into walls. Aside from needing to have him start wear a helmet, he loves to chat, give kisses, and feed mommy mud pies.
Charlotte is also more mobile these days. Not quite running yet, but able to jump, and is now climbing ladders. A couple weeks ago was the first time I was able to take the kids to the park and not need to hover over either of them - both were able and capable to climb around by themselves! Heaven!
Also new is the 'sibling' love. They are at the age now where they can 'play'. Mostly tickling or chasing each other. Charlotte tells me "I love my brother", and when I asked her who her best friend in the whole world was tonight, she said "Nathan". LOVE!
Stefan is doing well with work and is up to a 30 hour work week. I have been getting ready for the ride to conquer cancer and am really enjoying my bike rides! I'm sure everyone is enjoying the weather as much as us!
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| Sunday: healthy enough to put them to work washing the patio furniture! |
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| Today: "knock knock" |
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| Today: Mr. Dangerous (messy shirt) boy! |
You know what's awesome? Besides all of you lovely readers? Not blogging about cancer, and just about how wonderful my little family is.
Thursday, April 11, 2013
Bliss
Life has been good. Beyond good. I have been delaying posting because I didn't want to jinx things, but this week we got the great news that Stefan's MRI was "no growth"! Life feels so normal lately.
Some highlights:
- we have been making summer plans, without taking into consideration the proximity to Children's hospital. Yes, we still have to plan around Charlotte's treatment days and steroid week, but we are really looking forward to some little get aways this summer!
- the kids have been going to birthday parties, and are currently in a gymnastics class together.... with other (sometimes snotty nosed) kids!
- work has been good.
- Stefan's work and his occupational therapist have been great. Stefan is enjoying being back, has had some hard (very tiring) days, but I feel like they are keeping a close eye on him. They will keep him at his current schedule (24-28 hours a week) for the rest of the school year.
- I love my kids. They are very entertaining and have me laughing every day. With these beautiful sunny days we have been having, it's hard not to love life right now.
We have signed up for the child run June 2nd, we hope you will join us on Charlotte's Army! Sign up before Monday to get in on team t-shirts and get the early bird registration! Sign up or Donate to Charlotte's Army
On May 26th - we'll also be doing the Spring Spring.
Some highlights:
- we have been making summer plans, without taking into consideration the proximity to Children's hospital. Yes, we still have to plan around Charlotte's treatment days and steroid week, but we are really looking forward to some little get aways this summer!
- the kids have been going to birthday parties, and are currently in a gymnastics class together.... with other (sometimes snotty nosed) kids!
- work has been good.
- Stefan's work and his occupational therapist have been great. Stefan is enjoying being back, has had some hard (very tiring) days, but I feel like they are keeping a close eye on him. They will keep him at his current schedule (24-28 hours a week) for the rest of the school year.
- I love my kids. They are very entertaining and have me laughing every day. With these beautiful sunny days we have been having, it's hard not to love life right now.
We have signed up for the child run June 2nd, we hope you will join us on Charlotte's Army! Sign up before Monday to get in on team t-shirts and get the early bird registration! Sign up or Donate to Charlotte's Army
On May 26th - we'll also be doing the Spring Spring.
Sunday, March 17, 2013
like clockwork
We have been battling colds along with adjusting to life as a family of two working parents, a baby (cause we often forget that Nathan is not quite a toddler), and a kid with cancer.
We are back in for lumbar puncture and start our week of steroids again tomorrow. Our monthly cycle is like clockwork, and we are getting pretty good at planning around Charlottes (predictable) moods, or at least lowering our expectations.
The first week of each cyle Charlotte is recovering from her lumbar puncture, and depressed and clingy as a result of the prednisone. I will take this over the dexamethoasone. Many other leukemia protocols (treatment plan) have kids on Dexamethasone instead of prednisone. On Dex, Charlotte was a
rage-a-holoic. Always angry and screaming for food. Not that I like depressed, but at least I feel like I can offer her something - countless cuddles. I swear, during those weeks, if I had a zipper, Charlotte would wear me as a jacket - she can't seem to get enough cuddles.
The second week is retraining Charlotte, as she gets away with a lot more whining during prednisone week.
Then we have about 1.5 to 2 weeks of 'good' weeks with our charming delightful little girl.
So, since tomorrow we start again, a weekend of no plans was well spent. On Saturday, Charlotte and I made a last minute plan to attend a fundraiser for Children's Wish - a princess tea. It was pretty magical! Nothing cuter then 50+ excited little princesses. About every two minutes, Charlotte would comment "look mommy, a princess". There was a little spa where the girls could get makeup, tattoos, manicures, etc. A craft area, and of course tea, cookies, and fancy sandwiches. Cinderella, Snow White and Rapunzel along with a couple pirates and a magician made there day! I was in heaven watching her delighted face!
Today we went for a walk in the beautiful weather, played, and had a yummy roast chicken dinner (with green mashed potatoes of course)! My attempt to fill Charlotte's belly for fasting till her LP. My day was made when Charlotte gave me a totally unprovoked "thank you for the delicious dinner mommy". Stefan is off for the next two weeks for Spring Break, and I'll be taking a few days off too. I'm taking Charlotte in tomorrow which I haven't done since November. Charlotte is very excited to go (I know - crazy girl). When I told her today we were going to 'her' hospital tomorrow - she wanted to go NOW! Happy St. Patty's day all!
We are back in for lumbar puncture and start our week of steroids again tomorrow. Our monthly cycle is like clockwork, and we are getting pretty good at planning around Charlottes (predictable) moods, or at least lowering our expectations.
The first week of each cyle Charlotte is recovering from her lumbar puncture, and depressed and clingy as a result of the prednisone. I will take this over the dexamethoasone. Many other leukemia protocols (treatment plan) have kids on Dexamethasone instead of prednisone. On Dex, Charlotte was a
rage-a-holoic. Always angry and screaming for food. Not that I like depressed, but at least I feel like I can offer her something - countless cuddles. I swear, during those weeks, if I had a zipper, Charlotte would wear me as a jacket - she can't seem to get enough cuddles.
The second week is retraining Charlotte, as she gets away with a lot more whining during prednisone week.
Then we have about 1.5 to 2 weeks of 'good' weeks with our charming delightful little girl.
So, since tomorrow we start again, a weekend of no plans was well spent. On Saturday, Charlotte and I made a last minute plan to attend a fundraiser for Children's Wish - a princess tea. It was pretty magical! Nothing cuter then 50+ excited little princesses. About every two minutes, Charlotte would comment "look mommy, a princess". There was a little spa where the girls could get makeup, tattoos, manicures, etc. A craft area, and of course tea, cookies, and fancy sandwiches. Cinderella, Snow White and Rapunzel along with a couple pirates and a magician made there day! I was in heaven watching her delighted face!
Today we went for a walk in the beautiful weather, played, and had a yummy roast chicken dinner (with green mashed potatoes of course)! My attempt to fill Charlotte's belly for fasting till her LP. My day was made when Charlotte gave me a totally unprovoked "thank you for the delicious dinner mommy". Stefan is off for the next two weeks for Spring Break, and I'll be taking a few days off too. I'm taking Charlotte in tomorrow which I haven't done since November. Charlotte is very excited to go (I know - crazy girl). When I told her today we were going to 'her' hospital tomorrow - she wanted to go NOW! Happy St. Patty's day all!
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| Sleeping Princess |
Friday, March 8, 2013
an anniversary
2 years ago today, I was 8 weeks pregnant, pacing
the halls of Vancouver General Hospital, waiting for Stefan to come out of surgery and wondering if he
would be able to speak.
1 year ago today, my little family of 4 was cramped into an emergency room at BC Children's Hospital for the longest and most unreal day of our lives. A blur of 'indicates cancer, will be a long few years, blood transfusion, surgery, biopsy, lumbar puncture, chemotherapy' as we did our best to comfort our very sick little girl and our 5 month old baby boy....while choking back the tears.
Today:
.
Okay, I totally cheated, these photos are actually from 5 days ago. My plans for a family dinner out tonight and photo shot were thwarted by our broken cable, and the cable guy showing up 2 hours late. Charlotte had her heart set out going out - so it turned into a mother daughter date - which was kind of nice (the poor boys were stuck at home)! All in all, things are looking up for the Lageston family!
1 year ago today, my little family of 4 was cramped into an emergency room at BC Children's Hospital for the longest and most unreal day of our lives. A blur of 'indicates cancer, will be a long few years, blood transfusion, surgery, biopsy, lumbar puncture, chemotherapy' as we did our best to comfort our very sick little girl and our 5 month old baby boy....while choking back the tears.
Today:
Okay, I totally cheated, these photos are actually from 5 days ago. My plans for a family dinner out tonight and photo shot were thwarted by our broken cable, and the cable guy showing up 2 hours late. Charlotte had her heart set out going out - so it turned into a mother daughter date - which was kind of nice (the poor boys were stuck at home)! All in all, things are looking up for the Lageston family!
"Every storm runs out of rain, just like every dark night turns into day, every heartache will fade away...."
Saturday, February 16, 2013
a day in the life of me
I know I haven't been good at blogging lately - which is probably a good sign. So, for interested readers, I thought I would regale you with 'a day in the life of'. Here is a detailed rundown of my day yesterday!
I love my day off - I'm working 4 days a week - and relish that day off with my kidlets. I woke up around 7:20 and proceeded downstairs to start breakfast for the kids to find a cup of tim hortons coffee that my wonderful hubby had brought for me after his trip to the gym - can I love him anymore. I put on the 'hot cereal', as Charlotte calls it, to cook - Bob's 12 grain cereal. I fetched Charlotte who settled down to watch her morning cartoons, and luckily requested 'hot cereal'. I then fetched Nathan. Stefan had picked up croissants on a Costco trip the day before. I ripped one in half and gave half to Nathan. He proceeded to through this on the floor and kick up a stink - why? Because he wanted the whole croissant, or at least the other half too for his other hand. Knowing my son, I interpreted well, and he was soon a happy camper, leaving a trail of crumbs all through the kitchen and living room. Soon, the kids were fed and happy and ready to play. After getting everyone dressed - it was time to get out of the house - a trip to my moms (Tootoos, as kids call her) for a visit. Some playtime at her place, and then off to the park for some swinging, sliding and hide and seek. Nathan is trying to count now, which is pretty adorable!
Now it was just about 11 o'clock, which meant it was time to head back home for lunch and naps. Lunch was rice, carrots, broccoli and parmesan cheese for the kids. For me, I had the leftover valentines dinner Stefan had made the night before - pasta with seafood alfredo sauce (scallops, shrimp and crab) - yum! I managed to squeeze in making two loafs of my favorite pumpkin cinnamon swirl bread before we all settled down for a nap.
Stefan was home by the time we all awoke from our naps at around 4pm. After some playtime and dinner, the night was still young and we thought we could do another outing. We settled on a trip to Chapters where I picked up a few bargain books and the kids played in the kids area. Then it was off to Marble Slab creamery for some ice cream! A catchy song came on and Charlotte requested to dance - so, an impromptu dance party in Marble Slab for mommy, daddy and Charlotte, while Nathan was content to spin in circles and then dizzily bump into walls!
Home to bed, and Stefan and I caught up on Glee with a slice of the fresh bread and our sleepy time tea.
A Good day! Blog worthy, probably not. Memorable - you bet!
I love my day off - I'm working 4 days a week - and relish that day off with my kidlets. I woke up around 7:20 and proceeded downstairs to start breakfast for the kids to find a cup of tim hortons coffee that my wonderful hubby had brought for me after his trip to the gym - can I love him anymore. I put on the 'hot cereal', as Charlotte calls it, to cook - Bob's 12 grain cereal. I fetched Charlotte who settled down to watch her morning cartoons, and luckily requested 'hot cereal'. I then fetched Nathan. Stefan had picked up croissants on a Costco trip the day before. I ripped one in half and gave half to Nathan. He proceeded to through this on the floor and kick up a stink - why? Because he wanted the whole croissant, or at least the other half too for his other hand. Knowing my son, I interpreted well, and he was soon a happy camper, leaving a trail of crumbs all through the kitchen and living room. Soon, the kids were fed and happy and ready to play. After getting everyone dressed - it was time to get out of the house - a trip to my moms (Tootoos, as kids call her) for a visit. Some playtime at her place, and then off to the park for some swinging, sliding and hide and seek. Nathan is trying to count now, which is pretty adorable!
Now it was just about 11 o'clock, which meant it was time to head back home for lunch and naps. Lunch was rice, carrots, broccoli and parmesan cheese for the kids. For me, I had the leftover valentines dinner Stefan had made the night before - pasta with seafood alfredo sauce (scallops, shrimp and crab) - yum! I managed to squeeze in making two loafs of my favorite pumpkin cinnamon swirl bread before we all settled down for a nap.
Stefan was home by the time we all awoke from our naps at around 4pm. After some playtime and dinner, the night was still young and we thought we could do another outing. We settled on a trip to Chapters where I picked up a few bargain books and the kids played in the kids area. Then it was off to Marble Slab creamery for some ice cream! A catchy song came on and Charlotte requested to dance - so, an impromptu dance party in Marble Slab for mommy, daddy and Charlotte, while Nathan was content to spin in circles and then dizzily bump into walls!
Home to bed, and Stefan and I caught up on Glee with a slice of the fresh bread and our sleepy time tea.
A Good day! Blog worthy, probably not. Memorable - you bet!
Monday, February 11, 2013
Back to 'normal'
After a two week break from Charlotte's chemo and a stay in the bubble, we are back to 'normal'. On Friday we took Charlotte for her blood work and got confirmation that her immune system was back, and we could resume her chemo, albeit at half her previous dose. It was good timing so we could bring the kids to my Grandpa's wake on Saturday night. Stefan and I attended my grandpa's service during the day. It was a beautiful service for this adored man who lived an amazing 97 years. He will be missed. He adored his great grandkids and had a particular soft spot for Charlotte! It was a nice weekend visiting with family who we don't get to see often enough.
Stefan's return to work has been going well. He was very tired this past week though, so next week they won't increase the hours, it will be the same as last week.
With Charlotte's return to good health, she has experienced a growth spurt and is a super sweet little princess (ok, 90% of the time anyway). Both kids have been really great for who ever has been taking care of them (grandma's or nanny). We were surprised to hear that Grandma offered for Charlotte to watch a tv show while she got lunch ready - Charlotte's response was "I'm not allowed to watch too much tv". Of course, I'm sure this answer was because Charlotte wasn't ready to quit 'playing' with Grandma!
We are loving watching the kids play with each other and make each other laugh! Charlotte's imagination has been running wild these days, and Nathan has just been running wild!
Here is our nightly routine to administer Charlotte's chemo. It has to be on an empty stomach. If Charlotte has a bedtime snack, I will usually give her the chemo just before I go to bed (around 10). She is so good about being woken up for her 'cancer' medicine.
Stefan's return to work has been going well. He was very tired this past week though, so next week they won't increase the hours, it will be the same as last week.
With Charlotte's return to good health, she has experienced a growth spurt and is a super sweet little princess (ok, 90% of the time anyway). Both kids have been really great for who ever has been taking care of them (grandma's or nanny). We were surprised to hear that Grandma offered for Charlotte to watch a tv show while she got lunch ready - Charlotte's response was "I'm not allowed to watch too much tv". Of course, I'm sure this answer was because Charlotte wasn't ready to quit 'playing' with Grandma!
We are loving watching the kids play with each other and make each other laugh! Charlotte's imagination has been running wild these days, and Nathan has just been running wild!
Here is our nightly routine to administer Charlotte's chemo. It has to be on an empty stomach. If Charlotte has a bedtime snack, I will usually give her the chemo just before I go to bed (around 10). She is so good about being woken up for her 'cancer' medicine.
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| Double checking dose/medicine... |
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| crushing the pill... |
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| adding it to water... |
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| put it into the syringe... |
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| and voila - chemo ready for my sweet little girl. |
Tuesday, January 29, 2013
Back to the bubble
I guess I spoke to soon....
When Charlotte went in for her treatment and lumbar puncture last Monday, her counts were on the low side. I believe her platelets were 33, hemoglobin was 87, and neutrophils were .67. So not low enough to warrant a transfusion, and while we weren't in a bubble, we were 'careful'. We weren't too surprised just because she had been sick with this stupid flu/cold.
The doctor wanted to give her body a break, so we were to hold off on her daily chemo for a week and do blood work on the 28th. Well, yesterday's numbers were platelets of 13, hemoglobin of 79 and neutrophils of .2! We were pretty surprised since she seemed so well, feeling much better, and just her happy self! So, off to children's hospital we went today for two blood transfusions (platelets and red blood cells. for those who are counting, that makes 18 total transfusions now, 8 platelet and 10 red blood cells)). And, we are back in the bubble.
It's pretty normal for the neutrophils to fluctuate in the early stages of maintenance until they get the chemo dose just right. BUT, the platelets and hemoglobin, not so much, it's pretty rare to need blood transfusions in maintenance. Why did her numbers plummet so much? Not sure, it's likely tied to this horrible cold she has had and that she is super sensitive to her chemo. I asked "as long as it doesn't mean the cancer is back?". No, it's not that! When she does resume her regular chemo, it will probably be at a lower dose.
So, 6.5 hours at the hospital, but Charlotte was amazing, despite being stuck in a room and not being able to go the playroom due to the cold. I was pretty happy to have a day with my girl since Stefan has done the last two hospital visits with her. A little flem induced puke on the way home, and I hear "it's ok, it's just a little puke mommy". What a trooper!
When Charlotte went in for her treatment and lumbar puncture last Monday, her counts were on the low side. I believe her platelets were 33, hemoglobin was 87, and neutrophils were .67. So not low enough to warrant a transfusion, and while we weren't in a bubble, we were 'careful'. We weren't too surprised just because she had been sick with this stupid flu/cold.
The doctor wanted to give her body a break, so we were to hold off on her daily chemo for a week and do blood work on the 28th. Well, yesterday's numbers were platelets of 13, hemoglobin of 79 and neutrophils of .2! We were pretty surprised since she seemed so well, feeling much better, and just her happy self! So, off to children's hospital we went today for two blood transfusions (platelets and red blood cells. for those who are counting, that makes 18 total transfusions now, 8 platelet and 10 red blood cells)). And, we are back in the bubble.
It's pretty normal for the neutrophils to fluctuate in the early stages of maintenance until they get the chemo dose just right. BUT, the platelets and hemoglobin, not so much, it's pretty rare to need blood transfusions in maintenance. Why did her numbers plummet so much? Not sure, it's likely tied to this horrible cold she has had and that she is super sensitive to her chemo. I asked "as long as it doesn't mean the cancer is back?". No, it's not that! When she does resume her regular chemo, it will probably be at a lower dose.
So, 6.5 hours at the hospital, but Charlotte was amazing, despite being stuck in a room and not being able to go the playroom due to the cold. I was pretty happy to have a day with my girl since Stefan has done the last two hospital visits with her. A little flem induced puke on the way home, and I hear "it's ok, it's just a little puke mommy". What a trooper!
Sunday, January 20, 2013
life in maintenance
Life in maintenance has been good - definitely better then the craziness of 2012. It's not perfect. But better.
Some highlights/lowlights of the past few weeks:
Some highlights/lowlights of the past few weeks:
- We signed Charlotte and Nathan up for a couple classes at the recreation center. They were signed up for a music class together, but Stefan took them to the wrong class by accident - creative dance. Charlotte loved the other class so much - we decided to keep her in it! She is also in a ballet class and absolutely loves it. It is such a treat to be able to have her in these classes...with other kids! It's so normal!
- I'm back to work. I'm back 4 days a week and last week was my first week of a full return. It wasn't too bad. The kids have been fine at home with Daddy, but must miss me as I haven't been able to eat dinner all week without Charlotte on my lap. I have heard many joyful "Mommy, your home!" from Charlotte - even on my days off!
- Stefan starts back next week! He'll start in the classroom teaching. He's just in three days this week, for 3 hours each day. Excited to see how he does.
- We have a rugby girl (Jessica) who will be helping out with the kids - and they love her! They will be in the dayhome they were at before Charlotte got sick on Mondays, and Jessica will help us the other days.
- The kids and I have come down with this awful flu (you know the one, runny nose, wet cough that just won't go away). It's into it's 4th week now. Nathan and I even had the flu shot, but it hasn't seemed to have done any good. Luckily Charlotte hasn't had any fever so no trips to the ER were needed.
- The following story is gross - but a picture of how our normal is. We went out to Whitespot on Friday for dinner. Charlotte was eating really well (which she hasn't been doing lately), and then started coughing (this awful flu). This was accompanied by a small puking session (which has been pretty regular for her lately - not sure if it's just her, or this flu). Our little lady was quite discreet though, and we managed to clean it up - still in the process of cleaning - she dives back into eating. That's our little trooper. Luckily I don't think anyone in the restaurant noticed.
- Charlotte had blood work done in early January, and both her platelet and hemoglobin levels were low, but not low enough to warrant a transfusion. As a result, she is covered in bruises - poor little thing. (the low platelets cause bruises to appear quite easily and they tend to not go away as quickly)
- Charlotte's hair is growing back - looks like it will be a similar color to Nathans, light brown. A sad goodbye to the dark brown locks of pre-cancer.
- She is back in for treatment tomorrow, lumbar puncture and vincristine.
- My brother and his family came over for a belated Christmas get together. They were great company. The grandparents bravely took on all 4 kids so we could have an adult dinner out - a first for us together so we had a great visit! I also got some great game playing time in with my brother (thank you to our super duper spouses for letting us). Dominion has been our game of choice of late, and we managed to get in about 6 games!
- I've started spin classes and thinking up some fundraising ideas in preparation for getting my butt in gear for ride to conquer cancer!
- We have been thinking about a future trip. Possibly up to Whitehorse, or maybe even just Stefan and I to Vegas. But when it comes down to details - I get a little anxiety and panic. All in good time though I think - maybe by the summer we will all feel comfortable with a trip! Right now I'm very content with being able to go to Superstore as a family and date nights at IKEA! That's what 9 months in a bubble will do to you!
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| Family! |
Friday, January 4, 2013
Go On
One of Stefan and I's favorite new television
shows is Go On with Matthew Perry. It's about a support group. I
think one of the reasons we love it so much is we can relate due to our
support group experience. Stefan still attends the brain tumour support
group monthly. I haven't been able to attend in a while - been a
bit busy with something else. It's probably just as well though.
There is another person in the group with the same tumour as Stefan,
the same treatment path, but a year or two ahead of us. There tumour
started growing again and now they are doing chemo. Hits a bit too
close to home. I'm kind of glad I haven't been attending as I'm not
sure I could handle hearing it. It's bad enough getting updates as
it is. For the past year - I have done my best to ignore Stefan's
little problem so I can focus on Charlotte. But hearing about this
other person, as well as the disappointing news of a good friends cancer
returning - it makes me want to hug my family a little closer, celebrate
big the smallest of milestones, and run out and do Charlotte`s make-a-wish
trip NOW instead of postponing a year.
Anyway - this post has turned a bit depressing - so go watch Go On - it will make you laugh!
(PS. I get the irony of my post, with an underlying theme of embracing life, while at the same time, telling you to go sit on the couch to watch a sitcom for half an hour!)
Anyway - this post has turned a bit depressing - so go watch Go On - it will make you laugh!
(PS. I get the irony of my post, with an underlying theme of embracing life, while at the same time, telling you to go sit on the couch to watch a sitcom for half an hour!)
Tuesday, January 1, 2013
New Years
For New Years, we took the kids to the Keg where they did fantastic,
and we made it through the whole dinner without the help of any
electronic devices! Woot woot! Our princess Charlotte has developed
expensive taste and had lobster!
When we got home, we took a family photo, which has become a bit of a tradition for us. After about 30 shots, I think we got one....
For new year's day, we went down to Rocky Point for the Penguin Plunge which Stefan partook in. We figured maybe a dip in the cold water can help drive that remaining tumour away!
We are hopeful for a happy and healthy 2013, and wish everyone the same!
Thank you to everyone for all your wonderful outpouring of love and support through our second challenging year. We couldn't have made it without you. I thought the following quote fitting, as we certainly have many bright shining stars in our lives! We are thankful for all the blessings in our life, our love, our beautiful children, Stefan's 'no growth' mri's, and our wonderful family and friends!
When we got home, we took a family photo, which has become a bit of a tradition for us. After about 30 shots, I think we got one....
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| Stefan - "Naaaathan" while attempting to restrain him. |
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| let's sneak in a kiss |
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| maybe if we tickle him we can get a smile |
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| Nathan - "look at the camera" |
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| round #4 - let's try singing 'if you are happy and you know it' |
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| whew....this one will have to do! |
For new year's day, we went down to Rocky Point for the Penguin Plunge which Stefan partook in. We figured maybe a dip in the cold water can help drive that remaining tumour away!
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| Today at the Penguin Plunge - Stefan is still dry! |
We are hopeful for a happy and healthy 2013, and wish everyone the same!
Thank you to everyone for all your wonderful outpouring of love and support through our second challenging year. We couldn't have made it without you. I thought the following quote fitting, as we certainly have many bright shining stars in our lives! We are thankful for all the blessings in our life, our love, our beautiful children, Stefan's 'no growth' mri's, and our wonderful family and friends!
When it is dark enough, you can see the stars.
~Ralph Waldo Emerson
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