Happy New Year

We tried out sushi-making at home tonight.  That was a first!  A great experiment, and a "mulligan," a do-over.  In our house, a "mulligan" is a meal that we'll do-over again.  Not because we didn't get it right the first time, but because we liked it!

Nella helped to make them, and everybody enjoyed using their chopsticks to grab and munch on the sushi.  Aleah can't quite say sushi, sometimes it comes out "lucy."  "Are we having lucy tonight?" 

As Aleah gets older, we're discovering more of the challenges of left-handed living.  Tim is left-handed, and it seems Aleah is too.  We made snowflakes for our table on Sunday, and Aleah was not able to use the scissors--they wouldn't cut right for her.  This right-handed mom realized that I need to go out and buy some left-handed scissors!  Today, we discovered that the trainer chopsticks we are so happy to use are also designed for right-handed people.  Aleah found ways around it, though.

She is so proud of herself for having figured out how to pick it up! 

Things are rolling along at our house, it feels like time moves so fast.  We are already half-way through January!

This year, we look forward to being done Caleb's active treatment for leukemia.  Chemo will continue until the end of July/beginning of August.  I don't know the exact date, because right now, that's still looking too far ahead.  There's still room for change in the plans, and July is still a long way away.  No parties planned just yet. 

Caleb had a lumbar puncture and bone marrow aspiration (LP/BM) done this past Tuesday.  We've blogged about this procedure before.  It's a sedated procedure, and as time goes on, it seems to get harder on Caleb to go through it.  He's a trooper, though, as we know. 

Caleb's plan was to go through the procedure and then get back to school in time to finish off the rest of the day.  It's a contrast, for sure, the hospital environment to the school environment.  When we sit in the hospital, surrounded by the beeps, the oxygen mask, heart rate monitor, the noise of other families waiting or kids just waking up, it seems like a crazy idea to entertain going back to school in the afternoon.  Especially as Caleb sleeps on, sedated, at 11am, and I wait for him to wake up.  I think our nurse was trying not to look at me like it was a bad idea, but I'm pretty sure she thought we were a little fool-hardy to think that going to school was a good idea.  And when Caleb did wake up, groggy, ornery, and hungry, it seemed like a crazy idea to me, too.  It took a long time for him to get going, he sat up, laid back down, closed his eyes, snacked on some food, grumped at me for asking him too many questions, and insisted he was going to school.  The nurse de-accessed his port, getting him ready to go, just before he said that he felt sick.  Too late to administer any intravenous meds to help him feel better, and Caleb refused any oral meds.  I piggy-backed him out of the hospital, right up to the car in the parking garage.  Caleb threw up on the ground, got into the car, said he felt better and we went to school.  He lasted the rest of the day, and went to bed at 6:30pm.  What a tough kid.

We get results from those tests, which we try not to think about too much as we wait.  The waiting is the hardest part, right?  Definitely.  We put the test results out of our mind as we focus on how Caleb is doing and getting through the day with our family.  Wednesday morning we learned that Caleb is still in remission, thankfully.  We rejoice with these results, and celebrate that he is doing so well.  We thank you for your prayers, and ask you not to stop praying as we see those prayers answered.  We're still fighting leukemia, and still need your prayers.  God is good, and we feel your prayers.

Help a Child Smile Year 2

We attended the Help a Child Smile Christmas party again this year.  It's held every year in Hamilton (nice for us!) on a Saturday in December, for families that have children going through cancer treatment at Hamilton hospitals.  The event is busy, with constant activities going for families with kids of all ages.  The whole family gets to attend, and special treats are made for everyone in the family, not just the child with cancer.  Nella is showing off her new hat, and her balloon animal.  The party clown makes animals of all different kinds, and Nella requested a moose.  This is a moose (or to another child, it may be a reindeer).

Aleah asked for a balloon penguin, to match her new hat.  You can see all of the action at the party going on in the background.  It's fun to see all of the families out to an event like this, out of the context that we all met.  Families who's child is done treatment are also invited to come, and so it's a chance to catch up with those we haven't seen in a while.  This year we saw friends there who were there for their first time, having been diagnosed quite recently.  That's a bittersweet thing, needless to say.

I think my favourite addition to the party this year was this wall.  It's a complicated series of troughs for a golf ball to roll down.  At the end of the troughs, the ball falls onto a drum, bounces to another, to another, etc... until completing the sequence.  There were several different places to start your ball rolling, and it was so entertaining to watch!  I don't know who thought of adding this to the party, but it's a very creative idea and was a lot of fun.

Caleb, Nella, and Aleah had their first Santa experience.  They were very shy, but they surprised Tim and I by wanting to go see him.  We've never bothered too much to explain much about what you're supposed to do with Santa, when you see him.  While the kids were sitting waiting their turn, I suddenly remembered that he would ask them what they want for Christmas, and so I had to quickly prep them.  "Hey guys, I just remembered: he's going to ask you what you want for Christmas!  Do you know?"  I felt very much like a novice parent.  Fortunately, kids don't have a hard time thinking of toys they'd like.  

We also recently got our Christmas tree.  We found a great place to go: Mark's Christmas Trees on Safari Rd. in the Flamborough area.  Tromping through fields, exploring trees in a more natural environment than other tree farms we've been to in the past.  It was much like an afternoon hike through a conservation area, but with a saw.

We joked about the different trees we'd take home... large or small.  Green or gangly.

We found a simple white pine that is so light, Caleb can carry it.  Perfect for our small house.  It smells delicious standing in our house.  Caleb takes pride in lighting it up every morning by plugging in the lights.

I recently found Caleb's camera (it's easy to lose a camouflage camera that belongs to a five-year-old), with a few fun photos on it from our adventures this fall.

Hallowe'en!  We were a zoo, or a farm, as usual.  Our pumpkins, thanks to the Bootsma girls, were also animal-themed: a dog and two kitty-cats!

Caleb is living his dream, driving a battery-operated 4X4 at Cousin Aaron's place.  We ran into challenges with this one, because Caleb doesn't look behind him when he reverses... good thing he won't really drive until 16.

An idyllic fall campfire--the kids lasted about 5 minutes by the fire, and it ended with one of the kids being treated for burns to his hand.  The marshmallows were good, though!

Turn the temp down just enough, and you have a fall swimming pool for five kids under five.  What a party!

Updates

I don't post too often these days.  It's not that there's nothing going on in the life of our family, or with Caleb's treatment, but sometimes it seems like just "nothing new to report this week."  Our lives are busy with the buzz of preschoolers and kindergarteners, and we continue to travel faithfully to Mac once a week for chemo.  Sometimes I feel like anything that I might feel worth sharing here are just the significant events in the life of a family, like vacations, special trips, or illness.  The kind of things that you might share if someone asked you: "how's it going?" or "what's new?"  I don't want this blog to become a travel log, though, or a simple listing of the events of the life of the Brand family.  The intent of this blog from it's inception was to update our family, friends, broader community, and anyone else who may be looking to connect their own experiences with another.  That still remains the purpose of this blog. 

Our day to day life does not look a lot different from that of another family who is not working through leukemia treatment.  More and more, as we meet people in our neighbourhood, or waiting for the GO train (like Sunday), it's not really possible to tell that we have a child going through chemo.  Caleb handles treatment very well.  There are things that other people can't see, though.  Like the limp that Caleb develops after walking for a long period of time that I know is related to the chemo drugs he takes.  Or when he jumps on the trampoline and injures himself, and how my first thought is "What's his bone density right now?  Could it be broken?"  Or the unpredictable mood swings that go along with long term (or short term) steroid use.  Or Caleb getting teased at school for "chubby cheeks" that I know are a result of chemo drugs, but there's no way another kid could know that.  These are ways we work through treatment that others can't see, and are hard to explain without sounding or being afraid of sounding like a complainer. 

The reality that I'm even more aware of now is our hidden disabilities and struggles.  Because if we can carry through a day, living with a life threatening illness, and appear as if nothing is going on, how many others are there that are doing the same.  Something in us, in how we're designed, can compel us to hold things together.  And don't get me wrong, I know that ability can be a gift, it's something of a coping strategy that keeps us going and won't let us despair unto death.  But there's a need within us to be known, to make what is hidden transparent.  Sometimes that need is deeper and harder to find.  I find that my faith tells me that our Saviour is the one who knows us the most, and who wants us to be known to him.  And then, we've also been designed to be together, to share with others this journey.  We are not meant to be alone.  We need times on our own, to be sure, but ultimately we are not designed to keep apart from others.  I don't want to isolate those who are feeling alone, but would rather acknowledge and affirm that loneliness and also affirm that there are more than a few others out there who are longing for the same connection with others.  It may not be found where you think.

Hmmm.  I suppose I'm rambling, which is another thing that I didn't want this blog to become, a rambling of my own preaching.  This too, is all part of our experience.  Tim and I have found a deep need together to connect with other people.  Since being together, that's always been something important to us, but that desire has strengthened since experiencing leukemia in our family.  There are many people out there with untold stories.  We recognize that many of us are carrying pain that is unmentioned or unacknowledged, even in the most suprising of places.  This doesn't mean we're always compassionate (like when I missed the GO train this weekend and then there were no spots for strollers on the train that I did catch--I wasn't very compassionate then), but we are more aware and have a stronger desire to know and to be known. 

Strength to you in your journey, whatever or wherever it may be.

We visited the Royal Agricultural Winter Fair this past weekend.  Tim (and some folks from our church) was working on insulating the walls in our front hall, so we had to get out of the way!  RAWF was a fun way to spend a day.  So was the GO train!

I don't suppose I imagined that my kids' first experience of watching a cow being milked would be in Toronto at the fair, but it was.  The kids thought cow pies were funny, and were afraid of getting too close to the cows.  I was afraid of cows too, as a child.  I clearly did not grow up on a farm.

When it came time to ride on a mechanical horse, Aleah's horse went the fastest.  She kept asking for faster, faster! 

It's the Flu

Flu season has arrived.  I feel like it's early this year.  All three kids are down with it, and so am I!  It didn't take any time for it to catch on from one kid to the next.  Slowly, Nella is getting better (she was the first) and now we're waiting on the rest of us.  Caleb had clinic today, and the poor kid still had to go, despite being ill.  We wouldn't send him to school, but we'll send him to the hospital, full of kids with compromised immune systems.  It feels a little strange.  The major difference, among many others, is that when going to clinic with a fever, Caleb wears a mask, and then is put into an isolation room for the duration of the visit.  Isolation, not oscillation.  A mispelled text between us made us laugh about an oscillation room.  I feel dizzy already.

Different from other families, when we get the flu we quickly know what it is, because the hospital tests Caleb.  The upside for us is knowing quickly what the problem is.  The downside is the hospital visit and the nasal swab--a 6 inch stick shoved up his nose and down into his sinus cavity.  It does the trick but feels terrible.  He'll get good care as a result, and by extention we know how to best look after our girls, but it's not a nice procedure.  It was a rough morning for him.  Chemo made him throw up, his port had trouble bleeding back and they couldn't just let it wait until next week, and a nasal swab.  He's understandably worn out, and not just from the flu. 

So, we'll wait it out.  We'll get a call from the hospital with any medication recommendations, and otherwise do what any other family does when the kids are sick: sleep, read books, watch movies.  And do lots of laundry and run many showers. 

Here's to pedialyte and tea!  And lets hope it's not too contagious.

The wish that keeps on giving

We got more use out of our camper this past weekend.  Thanksgiving Camping is a tradition that I grew up with, and am happy to carry on with our family.  Growing up, we visited Pinery Park on Thanksgiving weekend--camping in whatever weather came our way, snow included.  This weekend we were blessed with incredible weather, this time at MacGregor Point Provincial Park.

There are certain things that I appreciate about camping in the Fall that are different from summer camping.  For instance, the cold nights make a fire much more cozy, and necessary, and make those sleeping bags useful!  We discovered that the furnace in our trailer works very well!  We also discovered that it runs on propane, after we disconnected the propane because our lantern tank ran out. 

The shorter days mean the kids get in bed earlier too, closer to their real bedtimes.  We have been quite relaxed with bedtime when we've been camping, until a few weeks ago.  One evening, after supper, Caleb was exhausted after a series of very busy days and late bedtimes, and stated that his head was spinning.  Knowing that he was just completely worn out, I got him up into bed.  While laying in bed, he said to me: "Mom, this is how I feel when we're camping too."  Hmm.  Tim and I resolved to make sure our kids get in bed on time.  This camping trip we had much happier, more patient and agreeable children, and thus an even better time as a family. 

I value the time with just our family even more so now that I'm working full-time.  Because I'm not with the kids full days anymore, the opportunity to explore and play together as a family are all the more important to me.  I want to live in to each day even more than before; it's precious time together.  We had a lot of that time together, experiencing sun-rises, sun-sets, geese preparing to fly south, feeding chickadees, 'smores by the fire, and bike hikes to explore places we've never been before.  It was an adventurous vacation.  And yes, we enjoyed having turkey dinner as well--ground turkey with stuffing, and turkey bacon in our hobo-pies cooked over the fire. 

It was a weekend of Thankfulness.  For health that we enjoy and appreciate.  For time together that is ever more special.  For a camping trailer that makes camping more simple.  For extended family who texts with us as they gathered without us.  For a new baby expected out in Victoria B.C. (Hurray, Laura and Rhodes!)  For opportunities to teach our kids about Creation and how we can care for it.  For celebrating Life. 

Our campsite

The updated version of the old tire swing

Sitting in the front seat to "help" Dad paddle

Riding on the many bike trails in the park

Conquering fears of "slippery rocks!"

Feeding Chickadees--it's pretty cool

But it can be scary if you're 3.

Peace for your week.

A year gone by...

This is a favourite picture of ours, from last year's trip to African Lion Safari with Help a Child Smile.  We had a great day there last year, and riding on this train was Caleb's favourite part.  Yesterday, we were able to go again, thanks to Help a Child Smile.  We took a train photo again.  Notice the changes?  (or maybe the similarities--Tim's wearing the same sweater!)  Caleb's head is full of hair, his face has thinned out, and his sisters are boisterously bouncing around behind.  What a difference a year makes.

2011

We had a great day.  African Lion Safari is best viewed through a child's eyes, so I'll leave that one to Caleb.  He had a busy week last week, with three days of school and our trip to the Lion Safari.   All three kids were cashed out in the van as we drove home--a beautiful sunset drive down Highway 6, into Hamilton...



...until this black smoke clouded our view!  Hamilton's beautiful (okay, beauty is in the eye of the beholder) industrial skyline was clouded with BLACK smoke.  We usually only have WHITE (or maybe slightly grey) smoke!  There was an industrial fire somewhere in the east end--with a nice East wind blowing the smoke cloud right over our neighbourhood.  The picture below contrasts our white smoke with the fire's smoke.  It's a blurry picture because I didn't want to open the van's window.

We decided to avoid our home for a little while until we either figured out what the fire was (making sure it wasn't too toxic) or the fire was put out and the smoke cleared.  But, we snapped a few pictures first.  It turns out the fire was in a scrap metal yard.  Several fire crews were called out, and they extinguished the fire within the hour, and the smoke drifted slowly over the mountain, landing on unsuspecting mountain-dwellers.  We returned home with little incident, after a nice quiet drive with sleeping kids.

 



In praise of sisters...

This is Nella Mae, one of the "SuperSibs" in our family.  Aleah is the other SuperSib, but she doesn't really know it yet--she's a bit too young to understand the idea.  SuperSibs is an organization that recognizes and celebrates the role of a cancer patient's siblings.  Nella has endured, and continues to endure, quite a bit at the mercy of our family's situation.  Nella has been dropped off at friend's houses without notice, puts up with an emotionally unpredictable brother, vies for any attention with her brother's need for medical attention, and deals with disappointment when her brother's health concerns trump our family's activities.   Nella is truly a SuperSib.  I cried when we got her trophy in the mail.  Nella dances with her trophy, hugs her trophy, and sings about how she is a SuperSib.  She truly is. 

Nella recently experienced one of the best weeks of her life.  I say that with "dark humour," please take this in the way it is intended.  Nella truly did have a wonderful week, but the things that made it wonderful are not what might typically be called wonderful.  It most definitely made me reflect on what is going on in my little SuperSib's heart and head.

Monday: Nella presents with hives at 11 in the morning.  Dad makes a special trip with Nella and others in tow to visit Mom at work to investigate the hives and determine what to do next.  Nella requires special medicine (Benadryl) and Mom and Dad pay close attention to her.  Nella continues with hives throughout the day, becoming itchier each time the Benadryl wears off.  Nella needs medicine three times.  Nella talks extensively about how she needs special medicine.

Tuesday: Nella, still with minor hives, has an appointment (totally unrelated to the hives) with Mom all by herself at the McMaster Psychology Department to participate in a study.  The Psych Dept at Mac is right beside Caleb's hostibull.  Very Important.  Nella sorts some shapes, answers some questions, and then picks a treat out of the treat box.  Just like at Caleb's clinic.  Nella arrives home and dances around her siblings with her special treat.

Wednesday: A trip to the eye doctor.  Caleb and Aleah check out just fine, but Nella needs special attention: her eye sight is poor.  Nella needs to meet with the doctors several times to get an accurate prescription, and then has to sit with Mom while trying on new "sunglasses" (glasses).  Nella is praised for looking "just like Emily."  Caleb stomps his foot and clearly shows his frustration at the amount of time he has to wait for his sister; Mom and Dad tell him he has to be patient and wait for Nella's appointment to finish.  Nella dances around and sings about getting new sunglasses.

Thursday:  Nella receives a phone call from our dentist's office: Nella has one the "No Cavity Club" for July, and needs to come in for a picture and to receive a gift card to Toys R Us.  Nella dances around with her card, singing about what she will do with her card.  Caleb suggests that she buy a crane for him, to compliment the bulldozer he bought when he received a gift card.  Nella says she'd like to buy a "girl" (a barbie). 

What a week.  It is something special to take pride in Nella's joys, even if they are slightly unusual.  I don't know the long term effects of growing up as a sibling of a child with cancer, but am fascinated (and occasionally: sad, frustrated, worried, amused) by Nella's responses to medical attention of any kind.  She has been deeply affected, that is certain.  As a parent I weep inside for the loss and uncertainty she experiences.  Outwardly and inwardly, I am so deeply PROUD of her for all she has endured and achieved in this last year.  She truly is a SuperSib.

...And speaking of praising my sisters--I am celebrating along with mine as the Appeal for Wheels fundraising goal is smashed!  Check out the link.  It is a gift, and what a blessing.  Thank you everyone for your support for them.