BLASTED!

This is the second time we've named a blog post with the title "Blasted!"  The first time was July 2010, when Caleb was in the middle of hard chemo.  Now, we can say it again, but this time the medicine is done! We just learned the results today from Tuesday's bone marrow aspiration: there are no more blasts in Caleb's bone marrow!  Caleb is in remission!  Praise God for healing! 

Give thanks with us!

We're Done!!!

This is Caleb, with one day left to go before last chemo!  What's awesome about this is that he gets it.  Caleb understands now that he will be done!  I remember early in treatment when Caleb asked me about what Isaac did when he had leukemia, and I realized that for Caleb, leukemia was so normal that every kid must have it at some point.  It was hard to explain to him that no, not everyone has this, and not every one will get it.  Somehow that made taking him into hospital for treatment that much more difficult for me, as he started to understand how he is different.  And it's strange how that makes one feel: like somehow I wish more kids had it so that it would be more normal, and at the same time shuddering that I would even think those kinds of thoughts.  I wouldn't wish this on anyone, absolutely.  But cancer does strange things to us, to our families, to our thoughts, to our spirits. 

We are celebrating.  We've just returned from a 9 day camping trip--our longest time away in 2 years.  We stubbornly stayed away over a Monday and a Tuesday, because Monday and Tuesdays have been clinic days.  We didn't have to be at Mac for those days at all this week!  And usually, after a return from any holiday, the next day meant an early rise trip to clinic.  No need for that this week!  Hurray! 

But, at the risk of sounding ungrateful or unthankful, I have to admit that it feels mostly surreal.  These next weeks will be adjusting to a new normal, and I can already feel myself beginning to process and re-process all that has happened in the last two  years.  Could that all have really happened?  Was that really us?  Caleb was that sick?  And we're really finished treatment?  It feels like the longest journey and the shortest ride all in one.  The grace of God will get us through this time, just as he has so far.

Caleb has a bone marrow aspiration scheduled for August 14th, the same test that he's had repeatedly throughout treatment, the same test that confirmed the diagnosis of ALL in the first place.  This is the first "off-treatment" bone marrow, and we will undoubtedly wait anxiously for the results.  We have waited this way every time, and this time will be that much more important.  Two years ago the heavy chemo kicked his body into remission, and these last two years of chemo have served to ensure that his body stays in remission.  Now, without the drugs in his system, they will test to see if Caleb's body stays cancer free without chemo.  Again, the grace of God will carry us through this time of waiting.

I asked Caleb if he feels any different now that chemo is done.  He didn't have much to say.  I'd have expected him to say that he feels less tired, or have more energy, or something like that.  In true 6 year old fashion, he responded that he feels like he didn't have to go to clinic on Monday or Tuesday.  Very practical.  I don't know if he'll notice the difference, but I'm certain we are beginning to see signs of him having more energy.  No more nausea on Mondays.  No more achy legs on steroids.  I wonder what else we'll see...

 With one of our nurses, receiving the last chemo.  The trick has been to try and keep Caleb so distracted that he doesn't notice the medicine, or taste it.  His taste buds, and gag reflex, are affected by the medicines moving through his circulatory system.  Here the nurse is telling us, very excitedly and animatedly about the drive from the 400 to Killbear Park, and how long the road is.  She did a great job.  He still felt nauseous, but no throw up!  Good finish!

Done.



Done!

No more chemo!!!

Last Dose of Dex!

Could it really be?  No more steroids weeks?  No more tired, achy bones?  No more crazy food benders: mashed potates & gravy, bacon, cold pizza, pickles, tuna?  No more hollow, sunken eyes?  No more 6 year old in a depression?  Really?  Really?

Yes!  Caleb had his last dose of dexamethasone last night at suppertime.  No more.  No more.  That ends 2 1/2 years of steroids, from prednisone to dexamethesone.  Thank you God that we don't need to take them anymore.  One less chemo drug.  In the next two weeks we will also gradually say "goodbye" to 6MP, methotrexate, and vincristine, and their helper, ondanzetron.  The countdown is on. 

at the quarry

Our family was invited by neighbours to visit the Flamborough Quarry.  The kids were entertained by the big trucks, and we were educated in mining rocks.  Caleb would like to share some pictures.

This is a GIANT dUmp truck Dumping rocks.

this is a tire  DIGGER  than my bad

this  is  the dumper

this truck had teeth

this is mcmaster's cement truck.  that's my hospital.

This is Aleah laughing.  (it's her reflection in the tire hub cap)

This is me driving the pay loader. 

I liked the quarry. 

caleb brand

2 months have passed!

This is the longest we've gone without posting to the blog.  I think we can be thankful about that.  I've looked back over the history of our blog, and watched the posting frequency change as the immediacy of our situation has eased.  We can give thanks for that.

Not that we haven't been busy, or that life hasn't changed much over the past two months.  Since our "sushi post," as friends have come to refer to it, Caleb has turned 6, we have ripped out the interior walls of our main floor, applied insulation, and installed a new kitchen.  And torn down a wall, replacing it with a beam.  It's been dusty.

We took advantage of the Home Energy Grants offered by the government--before they quickly and quietly ended the program--and did a Home Energy Audit.  Being a 1920's home, I think we got an F in efficiency.  No insulation makes a big difference.  As does an oil burning furnace.  Much has changed in two months. 

Most of the work took place over a week in February.  Tim and I planned it that I would take a week's vacation to get the kids out of the house, and he would stay at home and work each day.  Somehow we thought a week was enough time for him to get this done.  Why do we think things like that? 

Thankfully, we are not alone.  The community of our church, New Hope, came to our rescue and carried us through the week.  On demo day, February 18, Tim had approximately 15 different people come to help him for either the whole day or part of the day.  We are speechless at the offering of time that people have given.  Another few friends came each day during the week to help Tim, giving of their free time to slave away on insulation and kitchen installation.  People would come for a stage in the process, offering their particular area of strength, and then someone else would come for a different part.  It was never planned, just somehow it all worked.  We even had a few meals dropped off at just the right moments.  Hanging drywall, mudding, sanding, assembling cabinets, hanging cabinets, building glass block windows--all of this was done with the help of our community.

My sister has referred to their new Sprinter van as "Everybody's Van."  Our kitchen, our house, feel like "Everybody's House" through the gift of time and talents given here.  My hope is that we can honour everyone's gift to us by using it to bless people in turn as we have been so blessed. 

Our kitchen, with it's 1920's charm.

Demolition Day

Dusty!  The flash reflects of the plaster dust in the air.  Good thing one person wore a mask.

Nella wishes we had left the walls purple.

Assembling cabinets

Ta-da!  Finishing touches still waiting to be done, but we have a new kitchen!

The kids love the new kitchen, especially all the extra counterspace.

In other news, we now have our "last chemo" date.  July 23 is to be the final dose of chemo for Caleb!  It can't come soon enough!  Caleb has been having a harder time with chemo lately, experiencing nausea and achiness like he has not had before.  We have some new meds for him to help him cope with this, which seem to help.  The new med tastes gross, though, nearly making him throw up just to take it.  Ah, the contradictions of cancer and chemotherapy continue.  We are thankful that each test continues to confirm that he is cancer-free, and we pray for these same results to continue past his chemo.  It's hard to imagine what it will be like when we don't have weekly visits.  I think it might be difficult at first, although we'll be happy chemo is done, we'll be out of the regular routine of testing.  I think that may increase our anxiety for a bit.  However, family after family have done this before us, so we can do it too. 

My Uncle Jerry (my Dad's brother) is scheduled to go for a stem cell transplant this Wednesday.  Uncle Jerry's been struggling with MDS--sometimes called a "pre-leukemia"--for some time now.  We are praying that the transplant will go ahead without any more delays for illness, and that his body will readily accept the donor cells. 

I ran into a relative at the 3F clinic a few weeks back as well, also on my dad's side.  His name is Austin Huinink.  Austin's family have started looking for a bone marrow donor for Austin as he's living with Aplastic Anemia that has worsened recently.  I don't see them often, because we don't have the same chemo day, but if you think of it, pray for them too.

I don't get a lot of time to think these days, between working full time, housing renovations, and pouring as much as I can into my family.  It's hard to have time to process.  A window into my head?.... I've been thinking lately about how we stand in the face of darkness, of bleakness, and looming despair.  Something in me gets angry when I see how we struggle with cancer, and with loneliness, and with addictions, and loss, and uncertainty.  It's an anger that makes me want to shout light into its depth and stubbornly refuse the darkness.  I will not give up hope.  The light shines into the darkness, and the darkness has not overcome it.   I hope we can feel those standing with us, and experience the strength God can give us to stand and shout.  Sometimes I swear, sometimes I sing.  And it gets easier, and louder, when we can do that together.

Thank you. You help make it easier.

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.