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. 





Today's Test

It was a long day, but we're all home safe.  The kids are all sleeping, exhausted from such a busy time.  I won't post much, but I do want to give a quick update as an answer to prayer.  We're home, and that's the least we ask.  Many downs and ups today.  We'll find results of today's test within the next week.  Finding out earlier usually means that they've found something.  If we don't hear until next week, that probably means there was not much of concern.  We're glad that there wasn't enough of a concern to keep us there overnight.  That in itself is something to be thankful for. 

Peace to all.

Learning to Ride

Caleb is learning to balance on his bicycle. Thanks to Sid at the New Hope Bike Co-op, Caleb's bicycle pedals have been removed and he's learning to balance his bike all by himself! I tried to put up a video of Caleb rolling down the hill, "wheeeee"ing all the way (except when he ran into Aleah) but I am so far unsuccessful at video posting. He's so proud of his new skill! We are too!

We're mid-week, we had clinic yesterday and we have clinic tomorrow. The unusual schedule (instead of Tues & Weds) is because of Caleb's venogram tomorrow. Yesterday we were able to have a tour of the radiology room where the test will take place, and Caleb has a picture of the room with him here at home so we can look at and talk about it. He'd love to show you, if you see him. All of this is aimed at reducing Caleb's anxiety and helping him handle his treatment in the most positive way possible. He seems to be handling it pretty well, much better than his preparation for the echo-cardiogram a few weeks ago. I'm learning better ways to navigate the hospital with a small child.

The hospital is beginning a switch from being a general purpose hospital to becoming a children's hospital. Some areas of the hospital are better prepared for this than others, to be honest. I am so thankful for our clinic and ward, which have learned a lot over the years of treating cancer in children and it shows. I think a lot of energy is put in to helping children and their families survive treatment as a whole person, not just a body with cancer. I believe that we all can fight disease better if we are treated as a whole person. It's hard to have to go for tests outside of our "safe zone" of our clinic, and I get nervous about it. I feel like we've done a good job introducing ourselves and Caleb to the radiology area, and hopefully this makes tomorrow go that much more smoothly.

Pray for peace for us. We're receiving it. The word to us on Sunday was "relax." It came so directly, it's impossible to ignore. We are blessed.