What we've been up to

We go from this (this is the procedure room)

To this (mask is to make sure is oxygen levels stay at 100 or almost 100)

Still sleeping

To this (eating his 3rd yogurt cup)

Today marks the 4th of 4 lumbar punctures for Caleb in this phase of treatment. Not sure how to celebrate, but it feels like a celebration is in order. While everything has gone smoothly, amazingly so, it really felt like a marathon to get here. Caleb has done so well through this all. We won't have another lumbar puncture for 7 weeks now. Next week he just has one clinic day, when he will begin "leg needles," asparaginase. We begin the next phase of treatment, Consolidation II, the same day that school starts.

It's been a long haul to get here, but we are thankful to be here. I spent some time talking with a mom this morning who's daughter is having a much more difficult time with the meds: her counts dive really low and she's run a number of fevers, so much that they've had to rearrange her treatment schedule. It is painful to endure the sicknesses, extra pokes, and uncertainty. Please pray for Victoria, that her body will respond to the treatment better than she has so far. My wish for them is that their family would know the comfort we share, that God aches with them as they suffer during this time.

We've been busy at home, in the meantime between clinic trips. My desire is to embrace every day for all it might hold, as much as we can (some days this is easier than others). We have much to be thankful for, and if we don't take the time to find it, we might miss it. Carpe Diem.

Caleb & Anna love soccer, or throwing burrs on the sideline

A Saturday trip to the Marine Discovery Centre

Canoeing (at the Marine Discovery Centre)

A visit from my cousins Cori and Rachel

So far, so good

We are 3/4ths of the way through Caleb's CNS therapy. He had his 3rd lumbar puncture yesterday. I continue to be amazed by how well he handles treatment; after each lumbar puncture he wakes up happy and eats a salami sandwich (steroids diet still!) He's stopped taking the Dex (dexamethasone, a steroid) but it seems to be having longer-lasting effects. I wonder when it will stop!

We thank God for Caleb health and how well treatment is going. It's incredible. I'm finding the hospital visits to be draining, however, and so I really look forward to being done this phase of treatment.

I'm sorry that this is such a brief update. There really is more to tell, but there is not time right now!

Every Blessing

Learning to fish

Story time around the campfire


A ride in Uncle Darren's canoe

Enjoying some quality time at home. I told Tim the garage needed painting!

Every blessing you pour out I'll turn back to praise

And when the darkness closes in Lord, still I will say

Blessed be the name of the Lord

You give and you take away

My heart will choose to say

Lord blessed be your name

Today is a day of mixed feelings. We are coming off of an amazing weekend of family camping, bugs, fish, swimming, campfires, and cousins. Today Caleb and I got up early and spent much of our day at the hostibull doing leukemia things. So mixed! I alternate between the high of a great time together and the crashing back into this other reality. I think I'll share about it the way that my neice Emily and I eat our bread. Crusts first: get through the yuck so I can enjoy the good stuff.

We were at the hospital nice and early and finger poke went quickly. Finger poke barely phases Caleb anymore, he removes his bandaid within the hour after the poke. As a frame of reference for how this has changed, he used to favour his finger and need a bandaid for the week following the poke. We got up to the clinic and the charge nurse found us right away, getting us up to speed on what would be happening today. Little surprises are nice: last night I was lamenting to a friend on the phone because I had realized that Caleb would not only be having a lumbar puncture today, but he'd also be having a "leg needle". (A leg needle will be part of the next 30 weeks of treatment) Despairing about two invasive and uncomfortable procedures for Caleb, I was not looking forward to today. The nurse surprised me with the reminder that Caleb would be sedated for his lumbar puncture and so they would do his leg needle at the same time. Of course! I was instantly relieved and much more positive about what was to come. Caleb went into sedation around 11:15, not too happily, but okay. He received chemo drugs in his spine, in a leg needle, and through his port. A lot of meds today! Caleb really slept after the procedure; it took about an hour for him to finally wake up, which is a long time! He was happy and silly and a delight to everyone, as usual. Sometimes, just sometimes, really just sometimes, I wish he would complain a little more or put up a bigger fuss, because the sweeter he is, the harder it can be to put him through it all.

The gift for us today is that he's taken all of this medicine today, and he's still playing. Unbelievable, and what a blessing. He was exhausted at bedtime, but camping will do that to you too. We will wait and see what tomorrow brings, if his energy remains or if we'll begin to see effects from all of the drugs. I pray that we see very little.

Caleb's in a new phase of treatment, CNS therapy, designed to eliminate any possible blasts from his spinal fluid. This phase involves four lumbar punctures in these coming two weeks. Today was the first, the next is Thursday. Next week Tuesday and Thursday are the other two. He's taking steroids for the next 5 days again, and he's started 6 MP again for two weeks. Once a week he'll be having a leg needle, asparaginase, but he doesn't really know about that one yet. I decided to wait until he has to be awake for the needle before telling him about it. One thing at a time, especially in the case of four year old boys. This phase lasts for 3 weeks, and then it will be a new ball game again. But that's 3 weeks from now, so we'll wait for then.

We were able to camp again this weekend, after learning about good counts for Caleb last Thursday. We spent 3 nights at Pinehurst Lake Conservation Area, still nice and close to Hamilton. Despite being on highway 24 on Friday the 13th (many bikers on Harleys driving to/from Port Dover just a few metres away from our campsite, all night long), we had a great campsite, the last of 3 available on short notice for the weekend! The beach was great, and the kids had a great time playing outside, enjoying trees, bugs, sand, and water. Caleb's cousin Luke and his family were able to join us on Sunday, after the rain, and Uncle Darren took the kids on a canoe ride and even taught Caleb and Nella how to fish. My best memories are of camping, I hope the same will be true for my kids.

Thank you for your continued prayers and support. We still are receiving meals, and it's acts of service like meals and help with laundry that make a camping trip possible for us. Thank you. Please keep praying for us, especially in these two weeks. And on a separate and related note, please pray for Kyle DeKoning, family of our friends, who will be going through a long brain surgery on Thursday of this week. Please pray for Kyle and his wife Lindsay.

Our Camping Trip (Caleb)

These are my shoes. Anya found them for me.

That's our stroller. We were at camping and we were going on a trail to find the dam.

My red truck goes really fast by itself. And then we change its batteries. It's not a remote control one, it's a button one.

This is a post with a house on top of it with sticks in it.

We went to the pool at camping. Daddy has a funny face on him and Nella was swimming in her lifejacket. I like a beach better than a pool. I like sand.

My family went camping. We borrowed Uncle Ralph and Aunt Sara's camper. Uncle Ralph and Aunt Sara said we can hang on to it for a few more times. We played in the camper at camping, and we had hotdogs in the camper. I had a hotdog and Nella had a hotdog in the camper. The bathroom at camping is not a normal bathroom, it's not a flush one.

Keep on Truckin'

Caleb's red truck (take a picture of me with my truck, Mommy)

Aleah & Nella pick flowers while on a hike

(or flower picking trip-don't worry Rhoda, they were all invasive) this past Sunday

We attempt a family photo. No new photo for the title page of the blog yet.

Aleah, throwing sand.


Caleb & Nella, throwing rocks into the Grand River. Luckily, none of us were hurt. :)



We are still home. Things are becoming more and more normal here. Medication doesn't dominate our day to day life and leukemia is sometimes even forgotten. It's a bittersweet gift. Those moments when for a second or two I forget that Caleb has leukemia are followed fast by the reality check that things aren't the same anymore. That I can sometimes forget about the leukemia reminds me that our lives are bigger than cancer, that we won't allow this disease to take over our lives. There are times when it needs all of our attention out of our love for Caleb and desire to see this cancer gone, but cancer can take a backseat to the wonderful things in our life. Cancer is just one part of what we're doing in the Brand house right now. We spend a lot of time doing other things too, and they are important!

We have 3 kids who are growing and learning things at an incredible rate! I sometimes joke that Caleb must have gotten blood from a genius that has really accelerated his desire to learn (this is actually not possible, in case you were wondering). What's quite possibly going on is that Caleb's blood counts have been low for a very long time and what we had adapted to as Caleb's relaxed personality was actually part lethargy. That's hard to say out loud, but I think it often, so it's probably better said out loud. Or in writing. Like many other kids his age, he wants to learn to read; he's frustrated that he doesn't know what the words in his Machines that Work book say. As frustrating as it can be to deal with constant questions about this or that, my heart is warm to see his energy and enthusiasm for just about everything.

We were able to go camping this weekend! After Thursday's clinic and report of good counts, Tim and I independently thought of the same plan (how often does that happen??) to camp on the weekend. We were thankfully able to borrow a camper at a few hours notice, and Saturday morning we packed and left for Brant Conservation Area. We didn't want to leave the safe umbrella of the Greater Hamilton Area (sorry Brantford, you qualify for GHA), so camping in Brantford was perfect. Highlights, and Caleb will most likely blog about this himself, were our campfire, the big swimming pool, throwing stones in the river, and cooking grilled cheese on the fire.

Camping is therapy for me. Being out in a different space, outside, trees blowing, fresh air. Enough said.

J

Bravery Beads

In his post, Caleb refers to Bravery Beads. I've wanted to share about them for some time, and now here's my chance!

The Child Life specialists, with Help a Child Smile, offer a Bravery Bead program for kids going through cancer treatment. For each significant event in their journey, children with cancer receive a special bead that marks the event. The bead string can be worn as a necklace or draped over IV trees; I'm sure that other kids have come up with more creative ways of displaying their bravery. Many kids on the ward have strings that loop round and round, silently declaring their fighting spirit. And some of those kids are younger than my son.

The beads on Caleb's string give his name and his diagnosis date. The lightning bolt in the middle is for an emergency room trip; we have another one of those to add! The Maple leaf is for our hospital stay over Canada day, and the yin-yang is because he had a one-to-one nurse in the ICU. One of my favourite beads is the steroids bead, because it is all mixed up faces, smiley, frowning, sad. This bead helped me to understand how Caleb was feeling when he was taking prednisone 3X a day. This program really shone for us when we were in emerg on Monday, when through tears after they drew blood, Caleb sniffed, "Mommy, we need a new bead now." He got his bead, actually two beads.

Ask him to show you his bead string sometime, we try to carry it with us. It helps all of us to share his story with him. We got a new bead this morning, for a finger poke at the clinic. Caleb's counts are looking good, and his neutraphils, the infection fighters, are great! This means continued freedom for the Brand kids for now. Thank God for that!

Since Monday, things have been steadily improving. We were able to get out to Puddicombe Farms in Winona on Tuesday, and to St. Catharines for a swim at a friends' pool on Wednesday. The pool trip was a highlight for all of us, as cousins Emily and Sophia swam with Caleb in the deep end for much of the afternoon! Great exercise and even better memories. We pray that this will last for a while longer. We are on the tail end of this phase of treatment, Consolidation I. In a week and a half we'll be into the next phase of treatment which will involve more frequent trips to Mac. I don't know what that all entails; I have it written down so I can look at it later.

One day at a time. (Also phrased, "Strength for today, bright hope for tomorrow" and "do not worry about tomorrow.") One day at a time!

J

This week at home (Caleb)

This is my dog. His name is Tucker. He's at Jim and Mary-Jane's and Abby and Jacob's.

That's my mom and dad. We are going to the splashpad when my nose was bleeding. We had to go to the hostibull and have a poke. They gave me beads (bravery beads) and I got to pick something from the treasure box.

I was building a train set with Sophia and Rachel with a crown on her head. We drived some trains and some trucks and some planes and a crane and a gas station.

That's my sister Nella and I love her very much. Now she's upstairs reading a book.

That's Emily and Sophia and me. Emily is giving me a piggyback ride and she is giving me a swim. She gave me a canoe ride too.

This is when we were taking out the zucchini plant in our garden. I made a pipe from the zucchini plant and put water in it to give it a drink.

ER

We had a suprise trip to the ER today. We're home again tonight, so no worries there. This afternoon Caleb had a nosebleed and I had a hard time getting it to stop. That's one of the things we're to watch for, and so we had to make a trip to the hospital. Because it's a holiday, there's no clinic, so we had to go to the ER. While in the waiting room at the ER, Caleb's nosebleed stopped (of course) and that put our minds at ease. We still had to go through a poke to check his blood counts and coagulation (blood clotting ability). Everything looks fine for him. His nosebleed was caused by, you guessed it, nose picking. Hopefully this is the lesson he needs.

It was an exhausting day, so very much not what we had wanted to be doing. We were on our way to LaSalle park in Burlington when this happened, and needless to say, we did not have the family time we were expecting. Everything went really well, we're so glad we're home, but that wasn't how we wanted to spend our time. On the way home from the hospital, with Nella and Aleah back with us in the van, Nella said, "Now we go to the plashad (splashpad) Mommy?" What could I say? We stopped at Gage park on the way home, and all three kids ran and jumped and giggled and got soaked. Thank God for a nicer ending to the day. We pray for a good night of sleep for all.

J

We made it!

Here is Caleb with Kathryn, one of our favourite nurses.



We enjoyed a family supper together in the Ronald McDonald Room on Friday night, thanks to a friend for bringing it!

Here's Caleb's tube, his favourite tube as he said. He says he likes the red cap.

And this is the tube, no longer connected. Nurse Ashley is holding the gripper needle that used to give Caleb IV fluids.

This morning Nella and I went to the hospital to visit with Caleb and Tim. Aleah stayed home with Opa and Oma. Caleb was in good spirits: he had a good night of sleep with no IV to disturb him. Today's nurse, Ashley, came and told us that we could go home! Hurray! Caleb needed to get checked out by the doctor, which he did, and his port needed to be "de-accessed." He was not impressed about being de-accessed, mostly just because he doesn't like being touched by doctors or nurses at all if he can help it. We joked about how this is his favourite tube and he'd like to keep it always. I've included pictures of it. Caleb refused to take pictures because he was too angry about the whole thing, so I said I would. So I get to put them up.

We had a nice day today. We arrived home around lunchtime, and Caleb and Tim spent most of the afternoon digging weeds in the backyard. I am so thrilled with Caleb's energy level and I hope it sticks around. We went for a campfire with some friends, and the kids all got to jump on the trampoline. Our dog Tucker has spent most of his summer at this friends' place, so the highlight was visiting Tucker. We felt much closer to normal by the end of the day, and we are thankful. Around 8pm Caleb decided it was time to go. He said "I'm having a good time, but I'm tired."

He started his 6MP again tonight, so we'll see how that goes. His liver function tests are normal again; our bodies are amazing! He's got a rash, but we're pretty sure it's from the hospital environment--it showed up after all the meds were done. A good oatmeal bath and he already looks better. We go back for clinic on Thursday. So far Caleb's counts are doing okay--they've gone down but are not too low yet. Thursday will be primarily to check on how things are going with his blood counts, and transfuse him if necessary.

Have a great long weekend!

J