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.

A whole handful

Caleb is now a whole handful!  He celebrated his 5th birthday yesterday!  What a day!  It didn't seem, outwardly, to be any different from any other birthday he's had--I still forgot to get candles ahead of time (he blew out some tea lights and a lovely fragrant soy candle) and we scrambled to get a birthday present in time (a fish, which he promptly named "Tammy")--but it was a bittersweet day.  I suppose it goes without saying that birthdays are often a time to reflect.  This time the reflecting was that much more difficult. 

Last year at this time we had no idea what we were headed for.  Caleb actually was already strangely sick at this time last year.  He picked up a cold sore virus that lasted for a week, followed by the chicken pox, for which we had vaccinated him--he just seemed more sick than usual.  The doctors tell me that because his leukemia is acute (gets bad quickly) it's not likely that those were signs of what was to come, but I'm a mom, and so I'm going to think that way anyway.  I feel like there was something wrong from this time last year up until we received a diagnosis in June.  It's difficult to journey in our minds from last years birthday to this year.  These are times that we pray for grace to deal with our memories.

We had clinic yesterday for Caleb's birthday as well.  While chatting with the parking staff in Mac's basement garage, I remarked that it was five years ago that we arrived at the hospital and Caleb was born here.  That made me feel lousy, thinking how I didn't think then that we'd be back at the hospital five years later dealing with leukemia.  No parent thinks that.   Again, these are times that we pray for grace to deal with our memories.

We have so much to celebrate, though.  Caleb is 5!  Five is a big birthday!  It's awesome to celebrate another year.  We had a celebratory weekend away with friends this past weekend.  Thanks to the Ontario government, we have a long weekend in February! 

Caleb and Nella got to try out their cross-country skis.  They did remarkably well, I think it's in their blood :)

Caleb and his friend Anna learned how to steer the GT sno-racer down the hill.  A little nerve-wracking for mom to watch the 4 year old on blood thinners careen down the hill, but the kids had a wonderful time.  It was actually a gentle slope on rather slow sliding conditions, so I didn't worry too much. (after refusing to allow him to go down the steep, tree-lined run made by the older kids).

Tim and Caleb had a great time snowmobiling.  I'm not sure who liked it more...

 

The classic cross-country skiing picture.  I'm so glad my kids get this chance to enjoy the out-doors.  I'm thankful for the health we enjoy and the friendships we have.  Thank you for your prayers for us.  We still need them.  



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!