One Year

One year ago today Caleb went into hospital.  Look at him now!  More to come later this week as we process the many changes, hardships, and thanksgivings.

Sunshine and Two-wheelers

Its been warm outside, and we've been busy enjoying the heat. 

On Sunday, we went for a long bike ride along Lake Ontario with friends from church.  Caleb rode his two-wheeler the whole way, surpassing all of our expectations.  He loves his bike.

Part way through the ride, we took a break by the water, throwing rocks and wading.  Caleb was a little over-zealous in his wading, but we didn't want to stop him, not with the fun he was having.

We ended our day by roasting marshmallows at a friends' place.  What a great day. 

Carpe Diem.

If you're in town on Saturday, please consider coming to the Appeal for Wheels event at the Discovery Centre downtown.  Bouncy castle, live music (starring some local special guests whom you may know well), games, refreshments--it will be a great time, all we need is YOU.  And good weather, please pray for that!  

Being part of a Community

Caleb and Aleah pose with Isaac Valentin and Rhiana Overholster, coordinators of the event.

We were honoured and humbled once again tonight as we attended the Relay for Life held by Grimsby Secondary School.  Every other year, GSS holds a Relay for Life that raises thousands of dollars for cancer research and to improve the quality of life for people living with cancer, people like Caleb.  Several weeks ago, our family took part in a rally raising awareness to kick off the fundraising campaign--Caleb spoke to a crowd of 1,000 students, telling them in his own way about his time in hospital and the medicines and needles he's had.  Tonight we got to walk the track with other cancer survivors of all ages and walks of life.  It was an emotional time for us.  We are in awe that a group of students could be so dedicated and energetic to raise support and awareness for something that has affected our family so profoundly.  It's hard to describe the depth of feeling we have when we witness the dedication of so many to this cause.  Humbled and honoured, all in one.

We were surprised and happy to see Chris, someone we know from clinic, at the event.  Caleb and Chris got to sign the survivors Eagle (Grimsby SS's mascot) that led the way around the track.

Chris is celebrating the end of regular treatment for leukemia.  He's not done clinic trips altogether yet, but at least there's no more chemo planned!  Way to go Chris!

Caleb, Nella, and Aleah are learning about Luminaries--paper bags filled with sand, with a candle placed in them.  As the Relay for Life evening goes on, the Luminaries will used to light the track and to focus the thoughts of the high school students as they walk.  Some Luminaries are lit in memory of loved ones, some as an inspiration to keep fighting. 

It's hard to know how to respond when others show such support.  We are awed by the love shown by those who know us and those who don't even really know us at all.  We're thrilled with the funds raised for McMaster Children's Hospital on Caleb's behalf through Hans' Hirsute Challenge!  He's reaching the end of his goal, and we can't say enough how deeply we are moved.  We've received letters in the mail from folks we don't even know who say they're praying for us, or they've committed funds to McMaster Children's Hospital.  We are surrounded by such a community of support.  We can only hope that we can continue to extend that support to others around us. 

So much of my thoughts are on what it means to show support to another because right now we are also seeking to support my sister Sara and brother-in-law Ralph in their quest for tires--An Appeal for Wheels.  Sara and Ralph Pot, as many may already know, have a family of four girls.  Two of my neices, Rachel and Janneke, have significant special needs that require the use of special feed pumps, wheelchairs, and other assistive devices.  Rachel and Janneke are Caleb's PORT POWER buddies.  We're deeply thankful for the support that Sara and Ralph have given to us because of their familiarity with hospitals, special meds, and the many other things that go along with having a child with special care needs.  The difference for us is that Caleb's special needs are easily understood by support organizations, wish foundations, and charities because leukemia is a well known diagnosis.  They can't define what it is that Rachel and Janneke live with, and so it's hard for organizations to offer financial support for them.  It's time for us as a community to extend support to Sara and Ralph in a tangible way, by helping raise money for a van.  Please check out the Appeal for Wheels and consider coming out to an event (like tomorrow's garage sale in Waterdown) or offering some financial support.  It's not easy to ask for help, and I think it's equally difficult to receive it.  I suppose that's my experience of Relay for Life and the Hirsute Challenge.  We are humbled, because we don't feel deserving.  We are honoured, because we recognize the sacrifice given in whatever way.  This compells us to offer what we can in turn, to another. 

May God bless you as you seek to serve your community.  Pray for Relay for Life, for Hans and the Hirsute Challenge, and for the Appeal for Wheels.  We thank God for the community in which he's placed us.

Thoughts

 This is last year, during the lilac festival at RBG in Hamilton.  The lilacs were just coming out at this time last year and we were staying at the Tigchelaar's ranch, close to the RBG, while Jim and Mary-Jane travelled to Holland.  Our time at the Tigchelaar's was a holiday for us, staying with Jake and Abby.  We had the quiet of almost country living and the accessibility of work close by and beautiful conservation lands to explore.  It was a holiday of sorts, a fueling up time to prepare us for what we didn't know was going on in Caleb's body.  Caleb was running out of steam as his body slowly filled with cancerous blasts instead of the healthy oxygenated red blood cells and helpful sticky platelets. 

Caleb could only walk a short while before wanting a rest, which was a challenge for Tim and I, who love to get out for a hike.  We'd often find ourselves saying to Caleb: we can't carry you, you're the oldest one here and we need you to walk!  Looking back, it goes down as one of those things that even if he didn't have leukemia, we'd feel bad about saying.  Repeatedly asked how he was feeling, Caleb would say "I'm fine, I feel good!"  Small minds and bodies don't have the words to say "I feel just generally lousy," or "I feel tired all the time."  It's not like a skinned knee or a sick tummy: point to where it hurts.

Caleb's almost unrecognizable  in this picture from firecracker day last year.  We ended up leaving the party because Caleb had retreated inside all by himself, with no more energy left to handle the excitement of fireworks.  Thus we continued on our journey towards Caleb's diagnosis.

Today, it's hard to know what cancer looks like in our family.  I think about it often, trying to sort out just what it means to continue as a family through chemo and all that goes along with leukemia.  Sometimes we feel completely normal and unconcerned, and then little instances change that.  I'm not yet sure how we process all of this, the scares mixed in with the regular routines of life.  Clinic and school.  Chemo drugs and birthday parties.  Blood count reports and learning to read. 

Caleb doesn't yet feel the need to process much of this.  He is sometimes concerned, like when he trips and bangs his port, or the first time that he had a hard fall after stopping blood thinners.  Overall, he takes it as it comes.  "I feel good, much better than before!"  In time, he'll have more questions, but Lord willing, it will be behind us then. 

One day at a time.  Reflecting on things sometimes pulls me out of that mindframe.  The gift of faith brings me back:  "Consider the lilies of the field--they don't labour or spin, yet not even Solomon was dressed as finely as they! Therefore do not worry about tomorrow, for tomorrow will take care of itself, each day has enough trouble of its own." followed by "We give thanks in our weaknesses, for in our weakness, he is strong."  Not our strength, but God's grace.

What we've been up to

 We've been working in our garden.  Last year, just before Caleb was hospitalized, we attempted a roof-top garden to maximize the use of space in our small yard.  We used pots that we set along the edge of our garage roof.  I wouldn't say that our garden did well last year, but we don't really know if that was because of inattention or because it's just a bad idea.  So, we're trying it again!  This year we've built a frame for an actual bed that we can access by a ladder to the roof.  We'll see how it goes!  (For those of you worried about our kids' safety, the ladder we have isn't small enough for our kids to use)

 Amidst the rain, we've had some gorgeous blue-sky days.  The kids are waiting for what they call "warm-spring" instead of cold spring.  Me too.

Playing outside.  Our girls are bound and determined to be princesses, which happens anytime they wear a dress or skirt.  Sound familiar to anyone?

We had a few issues at the hospital for clinic last week, Caleb had a lumbar puncture scheduled for the same day as Grandparent's day at school.  We hoped and prayed that we'd make it on time from the hospital to the school.  Caleb's port was giving us trouble, not bleeding back the way it should.  "Bleeding back" is when the nurse pulls the syringe and it should fill with blood taken from Caleb's bloodstream.  Not bleeding back can happen for all kinds of reasons, but for Caleb, not bleeding back used to mean that he had a clot.  It was a little scary to re-visit the idea of tests to find a clot, starting blood thinners, etc... and finding out what might cause a clot.  So much goes through my mind when things don't go quite the way we want them too.  With prayer and a lot of work from our nurses, we got his port to bleed back, finally, and he made it for the last bit of Grandparents day.  We received good news that night on the phone from our doctor, his bone marrow continues to be free from blasts, praise God.  They'll continue to test his bone marrow every nine weeks for the next year and a bit.

This week Caleb's port bled back without any problem at all.  We may not know what caused the problem in the first place, and hopefully it doesn't return.  One day at a time. 

Hosanna!

Caleb led singing this morning at our church. 

No More Sharps

A view inside our sharps container

One more celebration for Caleb last week--the last tummy needle!  On April 4, we stopped the needles, as planned.  Caleb's tummy is slowly returning to it's healthier look.  The blood thinners caused a lot of bruising at the injection sites (we rotated the injection site around his belly-button so we didn't poke the same place twice in a row) so he had a perpetual ring of bruise around his belly button.  We almost can't tell that he had a bruised tummy.  We now have surplus of syringes & blood thinners in our cupboard.  Awesome. 

It's very freeing not to have to do these needles morning and night.  We no longer need to ask our friends if we can use their "Sharps Containers" (our funny joke).  We didn't realize how bound we were to the schedule of the needles.   And I find that you never really do get fully comfortable with poking your child.   We can put on a brave front and do what we need to do, but it doesn't feel good.  We're so glad we're done.

Caleb and his friends Alexis and Anna on a Sunday afternoon hike

The last two weeks have had other challenges for us--the first fever of one of our other kids.  I didn't realize that we had made it through flu season with no unusual fevers or exceptional sicknesses (other than Caleb's flu, Tim's flu, and the girls' stomach flu) until Nella Mae ran a fever two weeks ago.  Rest assured, Nella is fine.  Two weeks ago, Nella, out of the blue, ran a low grade fever with no other symptoms.  Right away, in the absence of other symptoms, my mind and heart jumped to my worst fear, that another one of my children may develop leukemia.  I thought it through and decided that wasn't likely, but that she probably had something else easily explainable, like a urinary tract infection.  The doctor we saw didn't think it was a bladder infection, and instead suggested we go for a blood test.  What?!!  That made my stomach turn--the only child in our family who goes for blood tests is Caleb. 

Nella continued to run a fever off and on throughout the weekend, and we went for the blood test on Monday.  Nella went to the same outpatient clinic that we took Caleb to on June 21, the day we went into the hospital.  Nella's white counts were low, which wouldn't have meant much to me before, but I read every piece of data I could on her "counts sheet."  We had her checked over, and still no other symptoms.  We had a follow up blood test four days later, and her counts were still low, but she was no longer running a fever. 

Nella since has had another blood test, last Thursday, and all is well again.  Our family doctor says that a virus can cause that to happen, and she sees it often.  That's comforting, but it wasn't much comfort throughout the two week ordeal of waiting to see what was going on in my little girl's body.  I no longer take comfort in the idea that something "rarely happens" or is a "once in a million chance."  It IS possible, I COULD have two children with leukemia.  Thankfully I do not, and I thank God for healing in Nella, but it was a long journey over the last two weeks. 

I understand my experience to be a bit of an over-reaction because of our past with Caleb, and friends have told me it's only to be expected.  I guess I do take comfort in that.  And I know now that many things can cause low counts.  I was also reminded that we continuously need to take life one day at a time.  Even when we think we're healthy or have things under control: one day at a time.  Or less, if we need it. 

Nella Mae, on the other hand, loved as much of the experience as she could.  As precautionary, Nella was prescribed an anti-biotic, the same anti-biotic that Caleb takes on Mondays, Wednesdays, and Fridays.  Nella danced in the kitchen singing, "I take Septra, I'm sick.  Caleb and I take Septra, Aleah, you don't because you're not sick!"  Nella talked endlessly about her pokes, and the healing that was taking place, and the band-aids she required.  Thankfully, she had a more appropriate response when they actually drew the blood from her (I was afraid she'd like that too).  Nella now looks at pictures from Christmas time and says, "That's me, before I was sick.  Now I'm better again."  This event has been significant for Nella, and for her parents.  We know that it's hard on Nella and Aleah to not be a part of everything that Caleb experiences.  In some small ways, Nella got to be a part of Caleb's world for a little while.  I'm so thankful we came back, and I think that Nella is too.