Round 1 done

On Wednesday, we finished the first round of chemo for Consolidation II. Caleb's had 3 weeks of treatment in this phase, and next week we'll begin again with the same meds we started the first day of school. He remains strong. This week it's possible to tell that his blood counts are low, but only just barely. He has energy and runs and rides his tractor and plays with his sisters; he just has a shorter fuse and weeps more easily when things don't go his way. We are adjusting to how this all plays out, because this is more or less how things will be for us until April. In April we begin a new phase of treatment.

For now we have been enjoying (?) our trips to the clinic. Aside from the meds given and the reasons we're there, it's a great place to be. The cancer world is full of conflicting experiences, I think I've mentioned that before. We're happy to be there, and smile when we meet our new friends, but despise the reason we have to meet our friends and what brought us here in the first place. If the walls of that clinic waiting room could talk, I think they'd weep in pain and joy. It's a strange, yet good, place to be.

We've been trying to park away from the hospital and walk in, and Caleb rides his (actually it's Nella's) trike. He loves the ride, and I love the walk. He cycles right into the elevator, beeps as he backs out, and parallel parks the trike in the stroller parking area at clinic. I mean really parallel parks. So long as the weather's good, we hope to keep this up. The exercise is good for us, and we all know how nice it is to save on hospital parking! It is a quiet joy for me to see Caleb speed ahead of me, drawing smiles from the university students walking to class. They see a child on a trike, doing what kids do. I do too, but I know what else he can do. When he speeds away from the hospital, after chemo, I marvel at God's grace in his little body. It's not always like this, it hasn't been, and it won't be. But right now, watching Caleb's bald head speeding down the sidewalk on his trike, I burst with joy.

Have a good weekend.

J

Caleb and Daddy

I am driving on Daddy's lap.

We're on African Lion Safari train. I liked the train, it went through gates. Help a Child Smile helped us to go to African Lion Safari.

We're making tomato sauce when it was raining and Daddy was home. It was fun.

This is me driving up to the hostibull not for surgery. I was driving to clinic. I ride my trike into the elevator.

This is an African Lion Safari ostrich. We had a baby ostrich in our van, but it wasn't real, it was a stuffed animal. The big ostrich came to our van.

This is a leopard. It was sleeping.

A goat jumped onto Daddy's back when he was tying his shoe.

Zucchinia, Leukemia

At supper tonight, Caleb was talking about one of the medicines that he hasn't used in a while (lactulose--helps move his system along). I could see the wheels turning in his head as he thought about what he should do with this bottle of meds. Suddenly he exclaimed, "I know, Mommy! We can give it to someone else who has Zukenia!"

Immediately after the Zukenia quip, possibly to distract me from my fit of laughter, he asked about another medicine I am currently giving. "Mommy, will Septra help me when my ears are plugged?"
His ears get plugged? This was news for me: "Do you ears get plugged, buddy?"
"Yeah, they do."
"When does this happen?"
"At nighttime, when I do this" at which point he stuck his fingers in his ears. The earnest look on his face assured me he wasn't trying to be funny.

It was a fantastic end to a trying day. We are still adjusting to our new normal. Probably because this will be normal for so long, I am having a harder time absorbing what we're living. I am grieving long the things we're losing and have lost to leukemia. It's hard not to send Caleb to school. It's hard not to participate with our church the way we have in the past. It's hard not to pick up and travel to visit family that we love. Many others who experience health issues of any kind know this pain.

There is a time for mourning and a time for dancing. While we mourn these losses, we are also aware of new opportunities created by our new life. Ultimately, we choose joy and we'll dwell in the gifts that we receive in our new normal. A few gifts of late:

-Our neighbours. We are getting to know them more and more. We love our street and the people who live on it. We are learning to care for each other and we feel their love.

-Gymnastics class for Nella and Aleah. We noticed Nella's love for tumbling and jumping this summer and enrolled her in a class that started today. The way it worked, I ended up in a parent & tot tumbling class with Aleah. This will be special time for the girls and I, as long as we can keep it going. It was an extra gift for me to be able to notice Aleah's need for my one-on-one attention too.

-Hair is growing on Caleb's head. In this last week, since camping especially, I was concerned that Caleb's head was extra dirty and I just couldn't seem to wash it clean. Today I realized that it's hair growing on his head, not dirt. And it might be red again, too! Many kids maintain a thin carpet of hair over their heads through treatment.

For now, Caleb is experiencing some side effects to his steroids. The good side effects cause him to eat, and we're thankful for that because it keeps him robust for upcoming chemo. But this morning he had leg pain that made him cry and want to just lay down all morning. I was very concerned, but was able to get in touch with our clinic nurse and was able to give him something for the pain. His later afternoon was much better than the first part of the day. Nella and Aleah have a cold right now, and I'm concerned about what will happen if/when Caleb gets it. We'll know this in the next day or two. It was bound to happen sometime, that sometime is now. Pray that he stays healthy and fights it off before his counts drop next week.




This is a favourite picture of mine, even though the quality isn't great. Caleb and his friend Jonathan are playing guitar. Taken back in June, it's possible to see how frail Caleb was beginning to look, yet he and Jonathan sang and played with joy. Jonathan plays a ukele, and Caleb a guitar. They talked music all morning that day. "I like your ukele, Jonathan." "I like your guitar, Caleb." We celebrate the gifts of music and friendship, which we haven't lost.

Consolidation II

"We had a long day, Mommy. I'm tired." Caleb managed to get a tired smile in for a picture with Tucker before bed tonight. At clinic they have a wall for pictures of kids with their pets. We're adding ours tomorrow.

Here's my list of meds that Caleb's doing right now,written on our kitchen chalkboard to help me remember. It could be longer, so we must count our blessings. 6 MP begins tonight for 2 weeks. Septra has been on-going and will continue until 6 months past treatment completion. Carwash is our word for the mouthwashes that Caleb does each day. He's becoming a good spitter. Dex is the steroid that Caleb takes beginning today for 5 days. Meds can change based on how a child's body responds, and new meds can be added if side effect control needs to be increased.

Caleb was exhausted after today. How many drugs can a child take? He had his leg needle, which was painful today. Although Caleb said it didn't hurt as much as being stung by a bee. Aunt Rhoda was stung by a bee today. She came to make us smile and give us sunchips at lunch time. Caleb also had chemo, Vincristine, through his port. He'll get another chemo drug tomorrow, Methotrexate. Please pray for his little body, that he can sustain this new plan. It's not as harsh as he's received in the past, but new drugs have new side effects. He's also received these ones before, but not in this combination. He's been a little nauseous, not overwhelmingly so, but it's not nice. We pray that he'll not be nauseous, and that I can find food he'll be able to eat lots of so he keeps his weight steady. We're tired, but I do believe that after the first day of a new routine (like school), we're all pretty tired.

In his hands,

J

God answers prayer

We went camping this weekend, all the way at the Pinery on Lake Huron. We had a woolly weekend, in that it was windy and cold, and occasionally rainy, but we made some great memories and had so much fun.

We went canoeing as a family on the AuSable river in the park, and we didn't even tip!

We participated in a fantastic church service at the amphitheatre. A praise team from Exeter Church led us in singing as a huge group! What a wonderful experience to be part of this gathering of believers. On the way home today, Nella pointed at the hill where this service took place and said, "oh look Mom, that's where we danced and sang!"

We hiked along the Riverside Trail, picking up acorns and the oakasional flower, and getting lots of rides on Grandpa and Grandma's backs.

It's hard to believe that we were able to do this trip as a family. There are so many ways that things could have gone wrong, but they didn't. We took a trip to Mac on Friday morning to have Caleb's counts checked. While not high, they were in the clear so far as "neutropenia" goes (Neutropenia is when his neutrophyls-infection fighters-are so low that he has high risk of infections). His counts are on the rise from earlier in the week, and will continue to rise before we begin chemo treatments this week again.

Armed with good information (like the phone number and address of London's Children's Hospital ER), we packed our things and headed for Grand Bend. This weekend is a family camping weekend for me (Jess); it is special for me to see my kids enjoy the same things that I enjoyed as a kid. And fear the same things I did, like the spiders in the bathrooms. The weather wasn't great for camping, but with the trailer and good raincoats, we stayed warm enough until the weather improved on Sunday. The lake was incredibly wavy, which was actually a blessing in disguise for us, because Caleb shouldn't really spend a lot of time in lake water and Tim and I had been trying to think of some way to keep him from wanting to swim for the weekend. A big undertow was all it took to keep most people from the lake this weekend. Except for Cousin Cliff and Aunt Jean who took to the skies human kite-flying. Hopefully I'll receive some pictures of this adventurous pair that I can put up on the blog to show what this is.

Tomorrow we officially begin Consolidation II. Maybe you remember Consolidation I at the beginning of August. From here Caleb's treatment routine will remain the same for about 25 weeks, provided that all goes well. We will be making clinic trips every Tuesday and Wednesday for leg needles and intravenous meds. He'll continue to have steroids for a week at a time, every third week, and he'll take 6 MP at night times for two of every three weeks (if this is confusing, don't worry about trying to sort it out). It's likely that every third week he will be neutropenic, and so those are the times when we will try very hard (instead of just trying hard) to keep him from getting any illnesses. One of our goals is to stay away from overnight hospital stays. There are no planned overnights from now on in his treatment plan. We pray that we will follow that plan as closely as possible!

Caleb seems to be a walking miracle. Praise God. God is answering prayers for our little boy. Thank you for praying them. He is experiencing very few side effects from his medications, instead enjoying renewed energy now that his body is not filled with blasts. As parents we still do a lot of worrying, but God answers prayer and we can see that in our little miracle of life, Caleb. Thank you for your love and care. We live each day in his hands.

J

I play outside

That's my tractor steering wheel. My tractor is green and yellow. I have a trailer with it too, not just a tractor.

This is me sleeping with a mask on. I didn't want one on. The doctors put it on when I was sleeping. Mommy and the nurse took it off when I was awake.

That's Daddy's baseball. He usually plays baseball and we get to watch him play. Now Daddy's at work.

Yesterday we played tractor tipping and played in the front yard. We made a campsite. We played in the trailer. Tomorrow I hope we can go camping. Nella and Mommy and me are going to clinic tomorrow to have a finger poke and get my counts checked. I want my counts to go up, they're going up this time, when I have lots of food and drink and exercise. I have leg needles now to take when I'm at clinic. I had one on Tuesday. Mommy put freezing cream on and it didn't hurt.

Caleb