Squeezing the Juice

I talked with my Aunt Marie on the phone a few weeks ago about the importance of the weeks between steroid weeks.  We try to enjoy every moment to it's fullest.  Aunt Marie so aptly called it "squeezing the juice" out of each day.   

Caleb had a lumbar puncture and a bone marrow aspiration yesterday--we usually refer to these as lp's and bone marrows, or "procedures".  We're supposed to be at the hospital for around 8:30 for procedures, but we woke up at 8:15.  Oh well.  So it goes.  We were last in line for procedures, but Dr. Barr has been doing these for 25 years and things went quickly and smoothly!  We packed strawberries and sunchips (yes, Aunt Jaci, Caleb likes sunchips again. We never can tell what he'll like) for after procedure, and we were home again by 3.  It always amazes me what can transpire in a few short hours.  Sedation?  Chemo drugs into your spinal fluid?  Yep, that's done, now I'm going to go play with my John Deeres. 

A few highlights from the past few weeks as we squeeze the juice:

Caleb's friend Kristin came with us to clinic.  Nancy, our Child Life Specialist, set the kids up with medical play.  Kristin had a great time delivering medicine to her doll!  The two kids made many people smile that morning, holding hands as they walked through the halls.

Caleb and baby cousin Hart are playing trucks together.  Hart is similarly taken in with tractors and trucks, although we think he may end up preferring red tractors to green ones.  Only time will tell.  Something to notice in this picture is Hart and Caleb's hair.  It's the same length!  Caleb's hair has actually grown quite a bit in the last few weeks.  We get a lot of comments at clinic now about the red that is beginning to show through.  Caleb's red hair used to be a distinct trade mark.  His hair really began to grow the week that chemo was delayed, and it hasn't stopped!  We'll see what happens as the weeks progress.  Every child's body responds differently to the chemo drugs.

We enjoyed a short visit on Christmas eve from Dave and Jodi and their 3 kids.  All 5 kids (not baby Julia) had a fun (loud) time jumping on the couch and playing together.  Here Caleb and Aaron are jamming on their guitars.     

We have had a special time with Shelley and her family.  Swimming in the pool has been a real treat for me and the kids, and now that it is winter time, her family has built a backyard ice rink.  And it turns out that Shelley's girls are great at teaching kids how to skate!

Aleah on her bob-skates





Nella and Caleb just got "new" skates. 





And what is skating without hockey?

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.