Merry Christmas

At Christmas, we are reminded that Christ, whose sacrifice we celebrate at Easter, came to all of us as a small baby. Many of us can relate to the innate desire to protect and provide for children, our own or not. This Christmas, I think of the sacrifice it took to watch a baby grow, experience pain, and eventually die so that we can all live. Our Father God loves us so much that he endured the pain of life and death that we can enjoy life. In the awareness of pain we so much more experience the depth of joy that we can have in Christ. What an incredible gift, and that we can share this joy together.

We want to thank you for your gifts to us this year, as we are travelling on a journey we never wanted to take. You have been the travelling companion who offers water, brings snacks, offers comfort while we carry this burden. And you've reminded us not to look too far ahead. For Caleb, you've given Lego, celebrated his enjoyment of music, and read his blog entries! For our girls, you've given them special attention, and given what we needed to keep them in gymnastics for a whole year! You have prayed for all of us, shared your stories, and been bold in shedding tears with us. We stand in awe of the community that surrounds us. If you only all knew the extent of the grace shown to us. We thank God for you.

Merry Christmas from the Brands!

This is our Christmas note for this year.  By way of quick update, the girls had stomach flu this week, and with a lot of work and a sleepover at Aunt Rhoda and Uncle Johan's, Caleb didn't get it (yet).  Hurray!  And the girls are better now, double hurray!  We got results from Caleb's bone density, and things look good.  This is great news for winter sports like tobogganning and skating.  Caleb had an echocardiogram on Tuesday to assess his heart function and more importantly the status of the clot.  So far the good news is that we have no news.  That's great!  Caleb's chemo has been delayed next week because he has to go for a lumbar puncture--a regular 9-week procedure--and that will be Thursday.  He's delayed because there are too many kids who have to have bone marrow procedures because of new diagnosis of cancer (bone marrows happen on Tuesdays).  Our hearts break for those who know this pain.

Please think of and pray for families whose Christmas time is coloured by new cancer.

Help a Child Smile

Last Monday, Caleb, Nella, and Aleah posed in their Help a Child Smile t-shirts. They were thrilled with their shirts, even if they were afraid of the party. Nella and Aleah wore their shirts to gymnastics, prompting many new conversations about our family's journey with Caleb. It's a good way to get the word out, I suppose.

It was steroids week last week. I am tired of steroids. Today at clinic, we parents (mostly moms) sat and more or less complained about how difficult it is to endure steroids week. It is really great to talk together; we all know misery loves company! Thankfully we can laugh together. When we are trudging through steroids week, it's hard to laugh, but it's good to laugh when it's done. The change from "on steroids" to "off steroids" is stark. I know that we will be able to time when the steroids have worn off, as we adjust to our new normal. I think that Caleb, as we know him to be, returns on the Monday morning around 3 am. We'll see if that's the pattern that continues next steroids week. That will be the week leading up to the New Year. If we had not been delayed a few weeks ago, we would have been on steroids over Christmas. Thank you God for the gift of that delay.

Part of the agony of steroids is the bone pain that Caleb endures on the withdrawal day from steroids, Sunday. He begins with pain on Sunday morning and it continues until 3 am on Monday. I currently cannot give him any strong anti-inflammatory meds because he's on blood thinners. I'm hoping that will change. For now, I have tylenol and magic bags that can help take away the pain. Watching him endure that pain, and express his anger about having pain, is pain in itself. He is, once again, such a brave soldier. We've been talking more and more about why he has "zuchinia" and how that makes our life different, and what it takes to make it go away. I love hearing him explain it to me, or Nella, or friends, and am impressed with what knowledge he's gathered and retained. I grieve deeply when he talks about the things he can't do, or the pains he accepts, to get rid of leukemia. Hearing him talk, like so many other things, is a big mix of joy and pain.

All in all, we're doing well. Steroids week is over, and we're getting back to normal. It is a great and wonderful thing that Caleb wakes up as his usual self on Monday morning. He had a great time playing with his friend Anna on Monday, and today we took the sled (no, not a snowmobile, my Exeter friends) to clinic. At the hospital today an O.P.P. officer gave Caleb a lego car, and Caleb was thrilled. The officer tried to be subtle and passed me another one for later, but Caleb caught it. So now he has two lego cars. Don't hire that officer for surveillance or anything requiring sneakiness.

We haven't been as prompt with updates lately. I don't think it's because nothing is going on, but I do think we're tired. We need the Christmas break, which it truly will be. We have, out of necessity for Caleb's health, limited the number and size of Christmas get-togethers and social activities. We miss our extended families and friends very much, but we know that keeping our family healthy is priority this season. Hopefully the snow sticks around so that we can get in some good cross-country skiing and tobogganing!

From Caleb

These are my trains. We decorated them.

 

This is a puzzle. We made it with Alida.

 

this    isTUCKER.

 

 

Our fish are doing well in their fsh tank.

Typed by Caleb.

Beginning another week

Taber, Alberta.  My cousin Lane sent this picture of last week at their farm. 

This weekend we had the opportunity to go to the Help a Child Smile Christmas party.  Help a Child Smile is an organization that, as Caleb says, "Helps kids with zuchinia go places."  It was HACS that made it possible for us to go to African Lion Safari.  I suppose a grownup might say that HACS promotes and seeks to improve the quality of life of children with cancer and their family.  It is run by volunteers, all of whom have been affected in some way by cancer. 

We don't have any pictures of the event, which is all well and good because they were mostly just afraid of SantaClaus and all of the noise that was in the place!  Typical for kids four and under, I think.  It took a bit, but we managed to interest Caleb in having a balloon reindeer made for him by Fluffy the Clown, and then the kids participated in crafts.  Caleb's balloon then popped, and we had another one made, but we decided to leave early and went to get our Christmas tree instead. 

While we were driving there, I reflected on our tradition of getting a new tree each year from a tree farm.  For various reasons, I almost talked myself out of going.  But then, all three kids in snowpants, hats and mitts (but I forgot them for Tim and I), marching up and down the rows of trees searching for our tree, I remembered that I love doing that.  We found a little fir tree, cut it down, and fit it inside our van with the kids.  It's small.  Perfect for our small house and our small kids.  And now the house smells delicious.  I'm getting ready for Christmas.

The kids are excited for Christmas, although they do believe that Christmas will be here when the snow comes.  This morning we finally have snow on the ground.  I hope it's easy to explain to them that its not Christmas yet. 

It will be steroids week this week.  I'm cautiously optimistic as we learn how to manage these weeks.  Our church friends have asked how they can help.  This week my friend Jane will drop off pre-cooked bacon for us so that I don't have to smell like bacon all week long.  We went through two packs of bacon and a jar of peanut butter last steroids week.  I wonder what will happen this week.  I'm hopeful that the excitement around Christmas and snow will be able to fuel Caleb for a few days into treatment this week.

Caleb goes for a bone density test tomorrow as well.  This is routine, something they do every half-year while a child is on treatment.  It was a routine echo that found his blood clot.  I really hope there is nothing that they can find when they do this bone density test. 

 

Percy, Thomas, and Spencer are getting ready for Christmas too, thanks to crafty kids and a hot glue gun.  Caleb's Christmas tree excitement was mostly for having a train track go around the tree.  He says he saw it once.  He doesn't miss a thing.

Monday morning

We haven't given a thorough update in a while.  We're enjoying the fact that nothing unusual is going on right now.  We finished steroids week last week.  The Monday was difficult, because Caleb experienced a lot of leg pain through the night and day.  His body was responding to the lack of steroid in his system.  Stereo-oids, he calls them.  I had to keep him with me during what is usually my time with the girls, gymnastics class, but Uncle Johan stepped in and went to gymnastics with the girls.  That was a fun treat for them.  It's important to me that they feel special.  We are thankful for the support from many friends that is making gymnastics a possibility for our girls. 

Tuesday morning I held my breath and prayed through the quiet of the morning, wondering if Caleb would wake up in good spirits or not.  He was his usual self once again, shouting and singing the morning in.  That renewed life for Caleb renews my energy and tells me that we can keep going.  Stereo-oids drag him down, but once they're done, we put them behind us and enjoy what we have now.  We had two ordinary clinic trips last week.  They're still monitoring his clotting factor as we continue with leg needles, which requires them to take blood once a week, but Caleb is adjusting to this as well.  We are thankful for "ametop" cream which numbs the area being poked.  Caleb talks a lot more about his zuchinia and his pokes; I love hearing him tell friends and family members about what happens for him.  It tells me that he is processing his experience in good ways.

Yesterday we were at our church, New Hope.  Tim was playing bass (his first time playing again since Caleb's been sick).  Caleb joined Tim up at the front with his guitar, tucked right in with the band.  He had brought his own music sheets (dot-to-dots that he printed at home) and had his pick tucked into his strings.  He strummed and sang his heart out.  Indescribable joy for all of us present that morning.  Thank God for the life of children.   

Here are more family pictures.  Part of our "photo shoot" with Jen and Tim included going to Jen's dad's barn and visiting the auction animals there.  I was transported back to my days as a child, visiting my uncle Case's dairy barn.  Cows can be very scary!  Our kids were intrigued and scared, the girls more than Caleb.  I wish that somehow we could keep goats or sheep in the city...

Tim and Aleah

 

Caleb tried to pet the goat while the goat tried to eat his sleeve.

Hirsute: defn: hairy or shaggy

My friend Hans overwhelmed me with some great news this week.  Hans is beginning a Hirsute challenge in Caleb's honour.  With proceeds going to MacKids, Hans' coworkers will donate for each month that he allows his hair and beard to grow.  We are so blessed to be part of a church community made of people like Hans, and we're excited to share Hans' progression through the months.  We are so very humbled by the pouring out of love that has been shown to Caleb and our family.  The photos below are daily photos, and show his progress for this week! (To stop the slideshow loop, press stop in your browser.  In the future, check out the sidebar of our blog to view Hans' Hirsute challenge!)

From Caleb

Me and Aleah are swimming with each other.  This is Shelley's pool and we get to swim and we get to swim again.  I like swimming.

This is my baler.  Balers bale hay.  I am hiding behind the baler when we were at the hostibull.

This is my airplane I built from lego.  We got this lego in the mail from Lynn and her family.

That's me riding on the trike with Aleah.  I look like I'm sleeping.