I don't want to re-live yesterday

Deep thoughts about life? How about deep thoughts about food. These were Caleb's words today while selecting just what he should be eating at one of his many meals through the day. "I had peanut butter on crackers yesterday. I don't want to re-live yesterday."

It's steroids week again!  This week seems much like the others: Caleb is tired, cries and is sad for little reason, loses his temper over simple tasks, and is HUNGRY yet extremely picky about food.  He's doing great.  Only one more day, and then withdrawal, and then hopefully everything can return to new normal for a while.  After the last round, with the flu and all, we're hoping for a more ordinary round this time.  We've had no more flu since the intitial bout last week, although we've had to go in isolation when we go to clinic, just in case.  Hopefully next week we can interact with our friends again!

Caleb threw up from chemo this week, which wasn't fun at all, but we realize that some people are sick every time, and multiple times.  We must count our blessings.  The nurses were not concerned, likely because they see it all the time!  Caleb also has a rash around his port, but it's not concerning either.  Except that it's frustrating to me: it's from when we removed the "sticky" that the Emerg nurses put over Caleb's port to keep him accessed.  I asked (twice) for "adhesive remover" to help pull off the very sticky window bandage but was told that alcohol wipes would be sufficient.  They weren't.  Caleb's skin is healing, and the rash doesn't bother him physically.  It just reminds me to stick to my guns a little stronger!

Big changes in Brand-land this week: I returned to full time work and Tim is settling into being a stay-at-home-dad!  Over Christmas, Tim and I realized that we needed to make a change in how we do things.  Looking at another season of long landscaping days and seasonal work was daunting, and we discovered how exhausted we both were.  After a conversation with a friend over New Year's eve, we realized that the best option for our family for right now would be for me to find work and Tim to stay home with the kids most days.  God completely opened doors for us in this circumstance; it would be hard to ignore His leading in how everything has fallen into place!  I'm working weekdays, flexible days with some evenings, and Tim is home.  The schedule for me is such that I can continue to take Caleb on clinic trips, and Tim and I can share more of the responsibility for care than we used to.  We are so thankful for this opportunity!

Oh, and if you're interested in learning more about chemo and cancer in an interactive and exciting way, click on Captain Chemo for some games!

Tis the season

Caleb spent some time at his friend Kristin's house. It was a withdrawal day from steroids, and so he was quite tired. Kristin joined him on the couch for a nap.

We're hopefully recovering from the flu, yet again, in our house. This time Caleb had it, though. We spent Monday night at Emerg at Mac with Caleb. He ran a fever on Monday night, a fever that broke on the way to the hospital. It probably all worked out the best way it could have, because we went the hospital, got Caleb's counts, did a number of other tests and an X-ray, but we did manage to go home again instead of being admitted (that took a little bit of convincing!). One of the tests was a nasal swab, which revealed that Caleb has Influenza A. It's interesting to actually know for certain whether or not you have the flu or something else. Protocol for treating kids with cancer who have the flu is to give them an anti-viral, which we started today. Anti-virals are supposed to start within the first 2 days, so I'm not sure we've taken it in time, but hopefully it's helpful. Caleb doesn't really have many symptoms, just a lingering bad cough that I hope will heal soon! He has coughed so hard he's triggered his gag reflex--do you need to know that he threw up in my shoe? I didn't have a bowl handy!

Chemo has gone ahead as scheduled, despite the flu. We've been isolated for our clinic trips--that means we wear a mask and go straight to a room and stay there until we're done. Extra precautions are taken by the nurses who care for us so that the flu isn't transferred. We missed most of our sleep on Monday night, so being isolated meant that Tuesday Caleb slept through most of clinic, and today was relatively quick, although we had to return to the hospital to get a prescription for Tamiflu (the anti-viral).

We're tired, but thankful. It's been a ride, but glad that we're all reasonably healthy. We've got great friends, 3 of whom showed up with spicy pizza for supper tonight. Tim's had a lot of work to do, clearing all of this snow. Hopefully tomorrow we can enjoy some of it!

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?