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.

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.

Handling our ups and downs

We have so enjoyed our week "off" from chemo.  Caleb's hair grows fast, and now we can see the red showing through again!  I wonder if it will last?  I feel like his cheeks down-sized as well, with more time off from steroids.  He's always had a round head :) but steroids have really added puffy cheeks!  It's interesting to look at pictures from a few weeks ago and look at him, well, Monday and notice the difference.  He started steroids again on Tuesday and I felt like already at bedtime on Tuesday I could notice rounder cheeks.  Steroids cause fluid retention, contributing to very round cheeks!  It is quite possible to look at a child going through chemo and tell exactly what stage they are at based on the roundness of their cheeks. 

It's steroids week, and we are a day and a half in.  This is the week that I enter with dread.  Dread isn't a good way to do things, though, so I'm working hard to figure out why I dread this week so that I can hopefully handle it a little better.  We have to do this many many more times over the next 2 years and so I must find a way to get through. 

My perspective is where I begin.  I must remember to take things one day at a time and one experience at a time.  Standing at the beginning of the week and wondering how we'll make it to the end is not really a good place to begin :).  It's bound to be overwhelming.  Can I do this moment?  Yes.  Then I'll take the next one when it comes.

I also know that steroids make me afraid and anxious.  I'm learning that this has a lot to do with how we discovered Caleb's leukemia in the first place.  During the weeks leading up to his diagnosis, he was quiet and moody.  He'd get out of bed in the morning and play a bit, but then sit on the couch and say he was tired or cold.  He does the same thing when he's on steroids.  My mind and heart immediately fear that something is wrong, that something else is going on.  But really, he's just on steroids and he feels really crummy.  So long as I can remind myself of that, I think maybe I can keep my own anxiety down. 

Steroids make Caleb want to be alone, except in the company of me.  I've blogged about this before, and I'm entering this week with new energy as to how we'll manage that.  We have learned a lot already about what works, things like lego kits and headphones.  This week we have built a fort in our living room.  The kids were begging me to make a fort; they're still too young to do much more than pile up the couch cushions against the couch or coffee table.  Yesterday we rearranged the living room to make a fort complete with a roof.  I'm hopeful that our fort can be a retreat for whomever needs the time away from everyone else; a place to be away without leaving the safety of other's company.  I fit in it too.  :)

Our week off

We're adjusting to giving needles at home.  This morning we had our first home care visit; a nurse came to give Caleb his needle.  I wondered if I would appreciate this, because my strongly independent nature would prefer to do things on my own if I can.  So far, one visit in, it's a great help.  I like the reassurance of someone else coming in to make sure that what we're doing is okay.  Giving my child a needle is not a comfortable experience, but I'm guessing that eventually it will seem quite normal.  For now, I like having someone else to come and help us. 

We had an extremely long day at the hospital yesterday, all 3 kids at clinic for what was intended to be a much shorter time.  We were there all day!  I was once again so thankful for my sister Rhoda who could slip away from work for a short time to hang out with my kids and give me relief.  And give me cash so I could buy hotdogs for the kids when we had to skip our picnic lunch.  We're working hard to preserve our children's childhood in and amongst hospital trips and medicine.  Sometimes it's harder than others.  I battled this in my own mind yesterday--my frustration with how long things take and having to abandon birthday picnic plans with friends versus a desire to help my kids be kids and not be as grumpy and frustrated as I feel.  I'm not sure that sentence made sense, but hopefully it somehow conveys the idea that I want to learn to embrace our hospital time as a part of my kids' childhood as much as an outdoor picnic is.  That means making the hospital fun.  Fortunately, our clinic and McMaster Children's Hospital is trying to do the same thing.  I'm so glad that they allow us to ride our tricycles and make lots of noise. 

Today we are staying home.  We've been building lego and making balloon animals (no, I don't know how, but Tim does), eating pancakes and dancing to music.  Here's to making childhood the best we can for our kids. 

NOT steroids week

More favourite photos. 

Today was a long day.  Today should have been the beginning of "week 1" of another round of chemo, meaning Caleb would get Vincristine, his leg needle, and begin steroids and 6mp.  His counts were too low today, however, to begin again.  We are delayed for a week in the hopes that he'll be back up again next week.  I'm quite sure he will be.  I don't really know why they're so low, except that I know this last round hit him harder than other rounds have.  He was so totally wiped out 3 weeks ago, week 1 of the last round, that it's less suprising that he's so low now.  With the venogram and sedation last week, I think that perhaps his body didn't have the restful recuperating week that he needed and so he's still low.  Let's pray that this week things improve.  I must admit that I am not entirely unhappy that we're postponing dex (steroid) for a week; it is one of my least favourite parts of his chemo treatment.

We got results from Caleb's venogram today too.  There is still a clot (I really dislike the word, but there aren't many other good words to use--thrombus isn't much better) around the tip of where his port line enters his blood stream.  The TPA that we used before probably helped to open it up some, because it's "non-occlusive," which means that it doesn't block the port line.  This means the port is still functional, and is good.  Caleb has started blood thinners--which don't actually thin the blood, but they do prevent the clot from further developing so that his body has the opportunity to break it down.  The drug asparaginase, Caleb's leg needles, can hinder his body's ability to break down the clot.  For the duration of asparaginase treatment, Caleb will be on blood thinners.  Asparaginase goes until April or May.  We're delayed this week, and could be delayed again, so it could be April, but possibly May. 

Blood thinners are really not a fun thing.  I learned today how to give subcutaneous (subQ) injections, reluctantly but willingly, as we do everything in cancer treatment.  For the first few needles, except for the one he gets at midnight tonight, a home care nurse will come to administer.  After a while, it will be me, and possibly Tim.  We ice the site, and then do the injection.  We use the same type of needle that people with diabetes are familiar with, and inject it into his belly, lots of flesh there!  I shudder to think about doing this morning and night for 30 weeks.  Thankfully, I have already had a few conversations with parents who have had to do this type of journey when their children were diagnosed with diabetes.  I know that people have gone before me and will go after me.  This really helps.

Caleb was so not happy about this change.  It was heartbreaking to stop him as he wheeled around the empty waiting room on his scooter--we were last seen today, well into the afternoon because we needed special attention from the doctor.  He burst into tears at the thought of needles, and wept with grief.  We were, and I suppose are, very sad.  Somehow it was a blessing, though, to watch the nurses--most of them done for the day--who were standing around and watching.  There were not many dry eyes around.  This helps, somehow.  The pain and sadness of a child as he handles bad news should never be taken lightly.  I'm comforted by their sorrow.  I am now reminded of the phrase "grief shared is grief divided" and its companion "joy shared is joy multiplied."  Knowing that they recognize Caleb as a brave soldier, that his tears are real, gave me courage to keep going. 

It's hard right now.  Right now it feels like blow after blow.  We remain hopeful, and thankful for a joyful 4 year old, 3 year old, and 2 year old.  Many laughs at home tonight, over supper and before bed.  Things are hard, and God is good.  This too shall pass.    Thank you for your prayers and encouragement.

Family Photos

Our friends Jen and Tim deVries took family photos for us last week.  We are sharing a few of our favourites here.  There will be more to come.

Passing the Time

We are very thankful this Friday evening, because we still have not received a phone call from Mac with test results. We were reminded by one of our doctors, on Thursday, that the longer it takes to receive word, the better it usually is. As my cousin Elly says, we're hoping for results that are so insignificant they almost forget to tell us. It's hard being in the space between not knowing and knowing, but glad that as time passes, our anxiety should actually go down. I guess it's another strange place to be in.  We had a lot of waiting yesterday, so we thought we'd share pictures of how we pass the time. 

 

Funny glasses can help ease tension almost anywhere.  Caleb's eyes are closed because this picture is taken minutes before his procedure.  He was incredibly unhappy, and having a really hard time knowing what to do.  One of the hardest things for him was having to put on surgical pajamas.  He hasn't worn them since his port surgery, the surgery from which he awoke in the PCCU.  We had a brief chance to talk about that, which I suppose is healthy, but it was hard and sad.  We don't like thinking about those early days very much.

Eating Halloween candy in the discharge room in the evening.  Before the procedure, Caleb needed to fast for 12 hours--from about midnight Wednesday until whenever the procedure's done.  So Wednesday evening I plunked the bowl of halloween candy on the coffee table and told him to eat as much as he wanted, and to pack a container with treats for after the procedure.  This seemed to work out as an effective way to get him through such a long period of fasting! 

Tim and I upgraded our cell phone plans during the first few weeks of hospital trips, in an effort to maintain our communication and manage our family's needs between hospital trips and overnight stays.  Our kids are quickly learning about texting, and a favourite way for Caleb to spend wait times is texting either Daddy, Aunt Rhoda, or Aunt Sara.  111122223333444fffffcccccccaaaaaaalllllll to you too.

 

John Deere.  Caleb taught the nurses about balers and tractors.  He also taught them about portacaths and how to be de-accessed.  And how to ride away from a venogram sedation on a tricycle and how to keep smiling.