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.

No Intracardiac Thrombus

What does "no intracardiac thrombus" mean?  No more clot!!  It's gone!  Completely gone.  That's the best news we've heard in a while!  Hurray! 

We can't wait to stop tummy needles.  April 4 is the expected end date for them.  No more morning and night sit down, ice Caleb's tummy, clean it, give the needle, hold for 5 minutes.  No more fear of brain bleeds and internal bleeding.  Good news indeed.

Caleb went to school for a full day today.  He really wanted to.  Today the inter-link nurse, Claire, came and did a presentation in Caleb's class about leukemia and the treatment that Caleb has had.  She gave medicine to a doll--medical play like we've shown pictures of here on the blog--and showed a video that the makers of Peanuts comics put together.  In the video, a friend of Linus gets leukemia.  They visit her, she has medicine and misses school, and she comes back to school again.  The class enjoyed the movie--Snoopy is funny no matter what context, apparently.  Caleb told me that the little girl had a "bob", and Anna said that the little girl was "blonde."  What they were trying to say was that the little girl was "BALD" from her treatments.  Her hair grew back just like Caleb's (and, speaking of hair, check out Hans' Hirsute Challenge in the side bar of this blog!).   

Another thing Caleb learned today was the word "Cancer."  He said, "Mum, today we watched a movie about Can-cer."  He said it in such a specific way, unique.  We have rarely referred to what Caleb has as cancer, rather using it's name, leukemia.  It is cancer, but leukemia is a specific type of cancer.  In the beginning when Caleb was first sick, Tim and I talked about leukemia and cancer, and named Caleb's illness leukemia more often, realizing that for us and most adults, cancer carries such fear just in its name.  We can fight leukemia much more confidently than we can fight cancer.  With the kids today at school, cancer and leukemia were no different from one another.  Something to think about.  Hmm... I suppose I should probably check with Caleb to see if he knows that they're the same, that the nurse was talking about his leukemia when she was talking about cancer. 

After a day and a half, what's Caleb's favourite part about school?  They have a car mat.  Easily impressed, he is.

First Day of School?!

We celebrated again today!  Here is Caleb, showing off his backpack for his first day of school!  We are thrilled that he can go, but not as thrilled as he is!  Caleb stayed for half the day, and talked non-stop for the rest of the day about it (including 45 minutes on the phone with Grandpa!).

Going to school is an exciting and slightly nerve-wracking experience for any parent.  We're blessed that we have a nurse who touches base with the school and helps to support us as we enroll Caleb and he adjusts to school.  The nurse has met with both Caleb's teacher and the principal, and will quite possibly meet with Caleb's class as well.  The most significant special need that arises when Caleb is in school is the awareness of his exposure to chicken pox and similar common childhood illnesses.  If Caleb is exposed to these, he could get very sick.  When he was home, we were able to keep good control over who he was exposed to.  Now that he's not always home, we're a little more vulnerable.  Enrolling him in March makes sense for all kinds of reasons, not just the end of leg needles: it's close to the end of flu season, and hopefully less chance for exposure to chicken pox.  We go forward in the trust that we continue to rest in God's hand!

We've received a lot of congratulations and encouragement as Caleb has finished the leg needles. Thank you to everyone; your words mean so much to us. Change, even positive change, always brings challenges and so we thank you for your encouragement to us. On Thursday of this week Caleb will go for a follow-up echocardiogram to check the status of the clot on his port. Please please pray that it has diminished so much that we can stop doing blood thinners. Blood thinners inhibit Caleb's freedom to be a kid, as he has to be careful about bumps and bruises--part of a normal childhood. We would so love to say goodbye to blood thinners and tummy needles, and Thursday's test will give us answers.


On a different note, we've had a busy few weeks since the last leg needle!  You'd almost think that we had March Break!

We visited Agape Valley Maple Sugar Bush, in Vineland.  They show us how Maple syrup was made in the old days and how it's made today too!  Pancakes and a straw ride and we had a great morning out!

Uncle Johan has been helpful in educating Caleb about the different makes of tractors.  He's been opened up to a new world of Kubota, Case, and New Holland.  This red tractor is a "White," the kind that Daddy had when he was growing up.  Caleb still prefers to Drive Green.



On our march through the sugar bush.

Niagara Falls.  

I don't know where we got the energy, but we went to Niagara Falls on the same day as the sugar bush.  Not sure I'd recommend doing that again. 

  

And one more makes 30!

Last leg needle done!

After Caleb's leg needle, the nurse with the loudest voice called out to everyone waiting at clinic, and we did a 3 loud "Hip-Hip Hoorays!" to celebrate together.  Not a lot of dry eyes.  It's a special time for all of the parents there--who've either been there or will be there.  We're thankful and happy.  Caleb's joy was so apparent, it was awesome to know that he really gets it, and he's really happy to be done these needles. 

We're now in Maintenance phase, which is still a year and a half long, but just one clinic trip a week instead of two.  One step at a time.  Thanks for celebrating this little mountain with us!

One More Week

We have just one more week of Consolidation II therapy before we move into Maintenance! I don't think we ever thought this day would come! One more leg needle next week. After the leg needles are done, we'll have just one clinic day a week instead of two, and hopefully get Caleb off of the blood thinner needles. Thanks for praying us through this time. Maintenance phase is another long haul, much longer at about a year and a half, but it's simpler than the other phases.

It's week one of this round of chemo, though, and so it's steroids week again. We had a miracle day yesterday, arriving at the hospital at 7:30 am for clinic and out at 10:30! That's a first. Caleb had a lumbar puncture--the once every 9 weeks chemo in his cerebro-spinal fluid. It makes for a more tiring week because Caleb gets more chemo at one time than he usually does. He appears more pale and tired. We're hopeful that this week will go smoothly, particularly because Caleb has discovered a new computer game, plowing and planting fields with his tractor. Our goal is simply to get through the week with as few hard times as possible! So far (one day in) so good.