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. 

Transportation Day

This is me on my train ride, on my first train ride.  I had fun.  It was great because I could see two tracks.

It was fun at Union Station because we got to ride on the subway after we took pictures.  We got to go to the bathroom before we went on the subway. 

This is when I saw the bugs!  This is the "see-bigger" thing for the dog-bane beetles.

This is where we saw the plants, the Dog-Strangling Vine plants.  It was fun because we got to see three places in Aunt Rhoda's school: the greenhouse, the see-things bigger room, and outside waiting for the streetcar. 

This is me on the double-decker GO bus.  Aunt Sara took the picture outside and I was worried that the bus would leave on her and she'd have to go on a different bus.  It was fun because we could see the sights from the top.  It was a good day because we went on all different kinds of transportation.

This is the waterfall where we were playing.  

T.O.

We've been waiting for Caleb to blog about this, but he's just been too busy being a kid to sit at the computer and blog with me.  So... 

My little guy in Union Station

A few weeks ago, Caleb had the chance to go with my sister Sara and two of her girls to Toronto, to meet my sister Rhoda.  Rhoda is studying insects--beetles, actually--in a lab in the forestry department at the U of Toronto.  We dropped Caleb off with Aunt Rhoda and her beetles at the GO bus stop in Hamilton on Thursday, Aug 4.  Far from being nervous for a trip on a big bus, to a big city, without his mom, Caleb couldn't wait for us to leave him alone so he could wait for the bus with Aunt Rhoda! 

 



Caleb got to use a microscope for the first time to check out a dog-bane beetle up close.  Thrilling. 

And they investigated the greenhouses too.  It was a day of adventures, with a train ride, a streetcar ride, and a ride on the double-decker GO bus to St. Catharines.  What a day!  Hopefully he'll get a chance to give his version of the story soon.

We've been enjoying August.  Cooler evenings mixed with the warm days makes for good bike-riding weather.  We've had some smaller weekend camping trips, but otherwise we're hanging in at home.  We're just finishing another steroids week; we're all happy about that.  Steroids weeks haven't been like they used to be--week long cravings for bacon mixed with monotone conversation and grumpiness.  Caleb still struggles with his emotions during steroids weeks, but its not like it used to be.  He craves foods, usually potatoes and gravy, which we're more willing to oblige than when he craved bacon.  We continue to take things a day at a time, as much as we can. 

We recently found this picture from our camping trip--it was on Caleb's camera because it's waterproof and thus very helpful when swimming in waterfalls.  We are still revelling in the good times we had at Arrowhead. 

Arrowhead Provincial Park

We just came back from a family holiday to Arrowhead Provincial Park.  We had never been to this park, but it came recommended by friends (Thanks, Deb!) and we thought we'd give it a try.  We had a fabulous time and can't wait to go back! 

A highlight of our trip were being able to use our canoe.  This is the canoe that I learned to paddle in, and that my siblings and I used to tip, submerge, play teeter-totter in the water generally just mess around with in/under the water.  It was rewarding to enjoy time with our kids in the canoe.  Many memories for me, and many new ones in the making.  Thankfully, our kids seem to have picked up a love for canoeing too.  Aleah calls the canoe "my canoeing." 

A favourite thing to do in Arrowhead Park was a canoe trip down the Little East River to Stubbs Water Fall.  It took about an hour paddling slowly down the river, scraping bottom here and there and dodging many felled and submerged trees.  People passing by reported seeing beaver, but with 3 noisy children and 1 very interested dog, we didn't see much wildlife beyond damsel flies and water striders! 

It was refreshing to be in the Canadian Shield again.  The kids are old enough to do some climbing on rocks and they appreciate the enormous-ness (enormousity?) of the rock formations.  They had a lot of fun scrambling up and down and figuring out what they could climb themselves and what they needed help with.  I had a lot of fun doing that too.

We all loved bobbing in the lake.  We love our puddle-jumpers (swim floaty things)!  The water at Arrowhead is a coppery colour because of the tannins in decomposing material there, which made us feel a little like we were swimming in tea, but in the heat, that didn't matter!  

We got good use out of our camping trailer this trip.  The kids really enjoy helping to set it up.  They take their job of winding down the stabilizer jacks very seriously.  We had two campsites on this trip, because we couldn't find a site that would be continuously available.  We booked one site for the week, and a different site for the weekend.  Initially I wasn't so happy to have to move, but in the end it was fun to have two sites--almost like two different camping trips.  The kids said that both sites were their favourite.

It was refreshing to have time away together as a family.  We did a lot each day, between hiking, biking, exporing, swimming, and canoeing.  Relaxing in a different way--good for the soul.  We can't wait until we can go again. 

The Real Thing

Tim and I got to experience our first U2 concert on Monday, along with 56 000 of our closest friends.  A massive crowd--I'm not sure I've ever seen that many people in one place, let alone that many people in one place singing the same song.  And, they're the same songs that I've sung countless times on my own as I hit rewind over and over (and more recently, hit repeat).  It's a small taste of heaven. 

The concert was somewhat redemptive for us, and a reminder of the ways that Grace is given.  The tickets for the concert were from last year.  In Fall of 2009, Tim had purchased U2 tickets for me as a surprise birthday present--the concert was scheduled for July 3.  News reports in Spring 2010 carried stories of cancelled/postponed U2 concerts because Bono was having back problems.  As the Spring wore on, we realized that our concert would be postponed as well.  Initially this was disappointing because we really wanted to go!  Shortly after, though, we were in hospital with Caleb.  I will not forget the moment that I realized how things had worked out, in this case, for our good.  We were standing in the OR waiting room with Caleb, ready for his port surgery, June 24.  I looked across the waiting room and saw an old Coca-cola pop machine--remember the line "The Real Thing"?  That always makes me think of the U2 line "even better than the real thing", and as is usual for me, I sang the line out loud.  At that moment I realized that we wouldn't have been able to use our tickets for this concert even if it had gone ahead as planned, because our lives were currently upside-down.  Because of Bono's back problems, we'd be able to go to the concert, whenever it would be (which ended up July 11 of this year--Happy Anniversary, Dad & Linda!). 

It may seem insignificant to some, but to me, as a well, BIG fan, for my first U2 concert, I'm so thankful that things worked out so that we could go.  Think of it how you will, but I experience that as another bit of Grace.  I may be misquoting here, but Philip Yancey talks about "Grace Notes," the notes in a piece of music that add flourish to whatever is played--God works elements of Grace, like these Grace Notes, into our lives.  This is one of those Grace Notes--maybe just fortuitous timing, maybe just luck, but I'm quite sure that there's design in this experience.
 

And the SkyDome is pretty cool too--I guess it's the building formerly known as the SkyDome.  Rogers' Centre.  Here is one section of the roof, as they were opening it up early in the evening.

And here's the guy who's pushing it open:

And the picture that caught our kids attention:

"Forklifts?!  They had forklifts there?!!"

This week

We had soccer last night, and Caleb and Nella are on the same team.  It's steroids week, and at the end of the soccer evening I asked Caleb what was his favourite part of soccer.  He replied, "The sitting off the field and taking a break part."  I set him up for that one!  

Aside from that comment, the kids are having a great time playing soccer.  Another favourite activity, more so than soccer, is bike riding.  Caleb has mastered hills now, he told me today, and he just got a kick-stand for his bike.  He couldn't be happier!  Tonight we rode through Gage Park, while neighbourhood kids played baseball and their parents sat in the shade and watched.  One of those parents is from a family who we connected with last summer, whose child had ALL when he was 18 months.  (He's now 12).  "How are you?" she called out to us as we wheeled past.  "Good, really good!" I managed to shout back.  A short exchange that meant far more than anyone sitting nearby could have known!

Caleb had a lumbar puncture on Tuesday of this week.  We had a mix-up in our schedule, so we ended up going to clinic twice this week because they forgot to tell us about the lumbar puncture.  LP's are only done on Tuesdays.  Oh well.  It meant both Tim and I got to go with Caleb this week.  LP's aren't a nice experience no matter what, although we do get a little accustomed to it.  This week reminded me though, that there really is no normal.  LP's are a sedated procedure, and Caleb has typically woken up just fine from sedation.  This week he had a really hard time waking up, it was a little frightening, because it was different.  He was groggier than usual, his eyes were blood shot, and it took him quite some time to get his wits about him enough to stand up and walk.  Not usual for him.  Once he was awake enough to leave, he wanted to ride his scooter.  He rode his scooter up to the hospital, but he couldn't manage riding it back.  He ended up sitting on the sidewalk and saying "I don't feel very well."  He was sick for some of the rest of the day. 

We know that this kind of experience can happen sometimes.  For some it happens every time.  By supper time Caleb felt much better, although he looked pale.  We're glad he pulled out of it okay, but it was just not a nice time.  A reminder that chemo drugs and all of these procedures really do have an impact on his little body.  He's so tough, though.  By Wednesday morning you'd never know what went on the day before. 

By Wednesday night he was out on the soccer pitch, playing and wrestling with his buddy Jonathan.  Oh, and kicking the ball a little bit.  Thank God for healing.

Can I say it enough?  Carpe Diem.

Sand, anyone?

We celebrated LIFE this weekend at Pinery Park.  Last year at this time, we were hoping and praying that Caleb's chest tube would be removed and we could be released from the PCCU.  It's a different story this year.  This weekend I was more concerned with how to deal with talking back, disobedience, and bedtimes.  Sigh.  Typical 5 year old problems.  One part of me gives thanks that he can be so difficult (because I know an alternative), and then the parent part of me takes over--I've got to deal with this behaviour.  As a friend said to me today, he spent this past year getting the snot kicked out of him, and now he's ready to fight back.  I know he's a tough little boy.  

But, other 5 year olds (hopefully) don't have their parents blogging in public about their behaviour, so I won't belabour the issue.  Suffice to say, Caleb is normal. 

We're happy to be a year away from what we experienced last year, and to know that our "normal" doesn't include frequent hospital stays and Caleb feeling sickly.  The unfortunate part is that we aren't even half way into treatment.  We still have over a year left to go before we can say goodbye to chemo.  We still have over a year of our weekly clinic visits, steroids weeks, flu season, etc.  Caleb seems to be more tired of it (and thus, so are we).  As he gets older, he's beginning to notice differences between himself and other kids his age.  Again, typical 5 year old behaviour, but with a twist.  Other kids don't have ports to take care of.  Other kids don't go to the hospital so often.  Other kids don't (but should) wash their hands so regularly.  Other kids don't wear a hat all the time at school or have to be so concerned that they may get a sunburn (treatment slows his cell replacement, and last summer's drugs impede his ability to heal from sun exposure).  Other kids don't take a shower after going to the beach (we're actually not supposed to let him go in the water at all, but we've made a quality of life decision.  I have no idea what kind of accountability we have to the hospital on that kind of thing, but we've decided we'll do this, exercising caution).  The list is long.  I repeat, typical 5 year old behaviour, but with a twist for our own story.  Daily reminders that although things appear "normal," our reality is that we are still fighting Caleb's leukemia.

I don't mean to gripe, but I do mean to give a bit of an idea of how things are going.  People often ask, and it's really hard to answer.  On the whole, we have so much to be thankful for.  We'd never choose this path, but since we're on it, I do suppose things are good.  A lot has changed since last year.  But there are still many low times, and times of high stress, and times of grief, amidst the joy.  But we know, and we stubbornly say, that we have much to celebrate.

Speaking of celebrate, Caleb received his gift from the Children's Wish Foundation last week.  After all of his memorable camping experiences last year in Aunt Sara & Uncle Ralph's trailer, Caleb gave his wish for a camping trailer.  Some people have commended Tim and I for planting such a good idea in Caleb, but I'll maintain that this was his idea!  We're pretty happy about it, but we would have wished for a basement renovation instead (Caleb, don't you want a playroom in the basement?)  We're very happy with the new trailer, though.  The timing of receiving the gift was perfect, a year after diagnosis.  We were really able to get out and enjoy the fresh air this past weekend.  We invited family to come and join us as we celebrated Caleb's health at this stage in the journey.  It was a great time. 

Here's Caleb, the Wednesday morning that we picked up the trailer.  He's about to take his first steps inside.  We have a lot of great memories to keep from this weekend.

 (learning about trailer setup can be quite boring, particularly when there is a spectacular mud puddle nearby)

A dry trailer on a wet morning,

Caleb and cousin Luke got to share Caleb's bed in the "pop-out" on the side of the trailer, 

enjoying the bike trails,

Aleah playing in the sand,

cousin Allison contemplating Lake Huron,

taking a march through the dunes with Uncle Darren,

...and a snack at the end of a hike on the Pine Trail.

Blessings to all.  Carpe Diem.