Winter Season

We went for a winter hike at the RBG (Royal Botanical Gardens) last week.  It was bitter cold, but beautiful. We took a few pictures and we'd like to share them. 

 Getting ready to slide down the hill.

Aleah enjoys being pulled in the sled.

Caleb enjoys pulling the sled.

We spent last week away from home, avoiding the flu.  Tim got sick on Tuesday morning, and so on Tuesday morning the three kids and I packed up and went to live at our friends' home.  It was steroids week, and my understanding is that it would be easier for Caleb to "catch" whatever is going around.  We don't want him catching the 'flu!  We lived away from home for three days, and seemed to have made it through without getting sick, hurray!  This is flu number 2 for us, and again it didn't spread to anyone else in our house.  We're pretty happy about that. 

Once again, steroids week was milder than what we've been used to.  It wasn't quite as nice as the last round, but nothing like what it's been in the past.  So strange, we'll never understand.  They increased Caleb's dose of Dex because his weight has increased, but that didn't seem to make a big difference in overall side effects, for which we're thankful.  We have so much to be thankful for. 

We've heard from the nurses that there is a good possibility that when Caleb finishes his leg needles we will also be finished with tummy needles (blood thinners).  This is what we're praying for, so please join us!  Our lives will change quite a bit when Caleb finishes leg needles: we will only have one clinic trip per week and the visits will not be as long because the drugs are less complicated.  Apparently, his counts will also likely become more stable once we're done leg needles.  Sounds like it may be a good time to think about going to school, like we didn't do in September.  We've been talking about it a lot at home and, Lord willing, Caleb will begin JK this Spring.  Caleb really wants to go, and we really want him to have this opportunity.  This is another thing you can join us in praying for.

Thank you again, everyone, for your support and your prayers.  We are continually aware of answers to your prayers as evidenced in Caleb's life and the life of our family.  Tonight at supper we were talking about Jesus' healing, and then we asked where else we see healing today.  Caleb pointed to himself as someone who is being healed.  We are thankful for the gift of medical research and dedicated men and women who work to preserve the lives of our precious ones.  Praise God for the gift of healing.  Remember those who suffer with chronic pain and hardship. 

Peace.

 
J

Speaking of Hair

This morning when getting dressed, Caleb selected his Crown Point Youth Soccer shirt.  He was on the navy blue team.  Soccer began the first week of June.  We had two nights of soccer before we ended up at Mac that week that changed our lives.  The first week of soccer, Caleb sat in the arms of Joanne, wrapped in a blanket.  The second week of soccer, Caleb didn't even want to go.  The third week of soccer, we were living in room 13 of McMaster's Children's Hospital Oncology ward, and soccer continued without us.  Caleb made it back for one night at the end of the summer, picture night.  Soccer had a profound effect on our family.  That's a longer story.

Caleb choosing this shirt today made me think about, of all things, his hair.  We have been through such a journey together, Caleb and I, through our hospital experiences.  There were times when I would look at him and wonder if he was still the same little boy that I carried into the hospital on June 21.  There were times when he looked at himself and wondered if he was the same Caleb--he told me so in July.  As he lost his hair, it became more difficult to put all of the pieces of Caleb together into the son I know.  Of course, I always knew it was him, and there were many times when he did distinctly Caleb things that showed me he was still there.  But it was painful that I had a hard time reconciling the boy in front of me with the boy from before leukemia.  Life had just changed so much.  Caleb's appearance seemed to have a symbolic quality.

Today when Caleb put on his shirt, with his hair growing as much as it is, I realized just how far we've come and who Caleb is now.  Of course, we knew that all along.  But today I realized it.  He is the same boy, through the hell of the summer and the valleys of the fall.  Today, as we played soccer in our dining room, I was able to put together my whole Caleb.  Praise God for healing.

Here are Caleb and nurse Mike, June 22.  Caleb had received several units of blood and platelets to make him so much happier and more energetic.

Here are Caleb and Anna, that last time at soccer.

Here are Caleb and Nella in front of the goal posts at home. 

Short Update

We learned that Caleb's clot has shrunk by half.  This is good news.  It definitely does not mean stopping blood thinners--I felt really naive today when I asked--but it does mean they're helping Caleb's body break down the clot. 

We also counted out how many leg needles Caleb has left, and there are eight.  22 out of 30 done!  Our clinic time is significantly reduced once we finish asparaginase (the leg needles).  Hurray for that.  We'll be back at clinic again for routine chemo. 

And, check out the Hirsute Challenge on the sidebar.  Click on Hans' picture and watch his hair wave in the wind like a field of grain... 

No News is Good News

It has been over a week since we last posted, and we try to keep our posts to at least once a week.  As we hear in the hospital, "no news is good news."  Things have been going smoothly here.  We had an incredible last round of steroids.  We had two packs of bacon precooked and waiting to be eaten during cravings, and eight pre-filled syringes of codeine prepared for leg pain on withdrawal day.  I properly cleaned and disinfected the microwave for multiple microwavings of magic bags, and arranged our schedule to accomodate for steroids.

Caleb experienced NO leg pain, he only ate bacon once a day, and he had upswings in his moods, not just downswings.  This was SO unusual!!  We're still kind of reeling from it.  It is such a puzzle that he had a completely different experience this time round.  He craved foods, but this time his cravings included strawberries, bananas, cucumbers, carrots, and guacamole.  Not just bacon, peanut butter, and tuna.  On withdrawal day (the day he stops taking the Dex), I kept waiting for the pain to set in, and it never did.

More of a lesson that we never know what to expect.  It was great, a blessing!  We'll take it!  We don't know what we'll experience next time.  As in most things with parenting, it's helpful for me to set my expectation low and then hopefully I'll be pleasantly surprised! 

We've been doing a lot of talking with our church about pain and lament.  I'm coming to understand how all of our experiences, particularly our difficult ones, are never left in our past.  We can never "get over" an experience.  We learn how to incorporate our experiences into who we are now, and hopefully we can keep moving on.  Kind of like a snowball, picking up the snow as it rolls on.  Our hardships become us, as much as our successes and joys.  Our challenge is to make all of this fit into one person. 

While we've been talking about this with our church, I'm also struck by how the task of absorbing this pain is not possibly done on our own.  And I suppose then I'm struck by how necessary it is to help people connect with others when they experience pain and hardship, so that it neither is ignored nor does it become solely who we are.  Somehow in the sharing of our experiences, we can together make a more complete picture of what we might call the Kingdom of God.  It doesn't do to isolate those who experience pain or hardship, and it doesn't do to isolate yourself when you experience the same.  Thankfully, we don't have to be alone. 

Thank you for helping us to not feel alone.  In sharing of your hardships, we divide the burden.  In sharing your joys, we multiply our happiness. 

I've been reading about Baby Molly, across the country, going through chemo for leukemia at one month of age.  Check out their story.  Pray for Molly and her family. 

Here in Hamilton, we have clinic tomorrow.  Hopefully routine.  I'm hoping to get results from Caleb's echocardiogram that we had a few weeks ago.  I'd really love his clot to be gone.  No new is good news, and so I kind of think that maybe there was nothing significant to report.  This could mean no change, or it could mean it's gone.  At some point I'll post a picture of all of the needled syringes that we've used since he started the blood thinners.  I'm waiting for a celebration picture, when we're all done the needles.  Suffice to say the pile is growing. 

The weather forecast is calling for an east wind.  Here in Hamilton, that means snow.  I hope we get some more!  Skiing calls. 

Peace.

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!