One step at a time

One step at a time, one day at a time. This is fast becoming the way I approach everything in life. I am striving to not worry about the troubles of tomorrow, or the next day, and rather living in the grace of the moment. Tomorrow is tomorrow, not today. I applied that to the hills that I climbed today on a run in the SouthShore trails of Cootes Paradise. And it worked! So long as I don't look too far up the hill that I'm climbing, I can keep going. One step at a time. I'm sure many of us can relate to this in some way for much of our lives.

We had a strange day, one day after heavy chemo. Caleb was very tired all morning, and by the afternoon he had spiked a fever. A fever is a little different for Caleb right now, because they don't immediately start him on antibiotics. His blood counts are high enough to sustain a fight. They had to draw blood from his arm to make sure it's not his port that causing the fever. We'll get results on that tomorrow. The fever has come down, and he is peacefully sleeping now. Tim is with him.

They also stopped the 6 MP for now, even though it tastes like icecream. His liver needs some time to catch up with all of this chemo. They'll start it again when his liver function is normal.

We had a good afternoon, after the fever came down. Caleb played car wash for an hour at least. We love cars.

We're hopeful for a good night's sleep. Same for you.

J

This is my room

This is my room

This is my blanket (from really close). I take it to the hosibul with me.

That's a DVD player for my slideshow DVD from cousin Emily and Sophia

Another good day

Here Caleb relaxes in "my" chair as he receives his chemo. In this picture and the one that Caleb took, notice the fluorescent marking and the bag over the right side of the medicine pump and bag. These are to protect the rest of us from what is flowing through Caleb's veins.

Caleb's friend Anna came for a visit today. They had Mcdonald's together and then played with the medical dolls (like with Nella during our first week, see earlier posts). Anna and Caleb had a really great time together, it was like old times. Although I do wonder who enjoyed their time more, Caleb and Anna or their moms.

We are at the end of another day. This marks day 3 of this hospital stay, and we are hoping for a better night's sleep. We moved last night to a new room in the hopes that a younger roomate will have a more compatible schedule. This morning that new roomate moved out and so we have a double room to ourselves, for now.

This morning Caleb received 3 chemo drugs, one of which is still being given. Methotrexate, as he properly says, is being given over a period of 23.5 hours. It's a bright yellow medicine, and it makes his pee bright yellow too! It's important to be watching his pee, because this is how his body will eliminate the medicine. Once the medicine is undetectable, we will be able to go home (pending no complications). He's taking the medicine well so far, 15 hours in. We'll pray for that to continue. There can be some irritating and very painful side effects from this drug. Hopefully that doesn't happen for him, or at least not too bad.

It amazes me that something so awful can be so good. I've been trying to find the right word for how the awfulness and goodness are wrapped up together, and I haven't found it yet. Catch 22 is too simple. Paradox is too dry. Antithetical seems not quite appropriate. The badness and the goodness need one another. We have to have the bad chemo in order to get the bad blasts out. So then the bad chemo becomes good. But its still bad, especially for the rest of us who don't have so many bad blasts. Caleb has a new mouth medicine, now that prednisone is done. The short name of it is 6MP. Caleb was very worried about a new medicine, but now that he's had it, he says it tastes like icecream. Hurray! Except it's a very potent medicine as well and probably shouldn't spend a lot of time on his tongue. So, good that it tastes good, but bad that it tastes good. Ah well. The good and the bad need one another in order to make things complete.

Caleb's friend Anna visited, which was a huge highlight not just for Caleb, but for me, too. Child life specialist Maria led them through medical play, like she did with Nella and Caleb way back in June. Caleb and Anna had such a good time together, it was refreshing to watch. It's reassuring that there is something more normal out there and we're slowly finding it.

Thank you for your continued prayers and care for us.

J

Caleb's best day with his camera

You have to stay until they are done cleaning the floors

This is my pump. It gives me medicine. Today I got a new medicine - methotrexate




Mommy is wearing yellow gloves, and is emptying out my urinal after she spilled it on the floor

Today Carebear was sick and had a finger poke, and I had to take care of him. He had a fever, but not anymore.

this is my nose

I took a picture of my face.

Mommy took this picture ~ Today Anna came over, Maria from Child life showed us how medicine works

One more

Caleb played with Debbie, a volunteer, this morning. He loves playing with Debbie.

We're playing catch-up here on the blog. There are four posts to catch up on for today. Caleb has a camera now. Our intent is for Caleb to be able to record his experience with his own eyes and words. Sharing it with you all is a pleasure for him. He picks out the pictures and tells what they should say. I am so interested to see how this unfolds for him. It's fun!

Caleb had his LP (lumbar puncture) and BMA (bone marrow aspiration) today. This was the first time that he did not put up a fuss for going to sleep for the procedure. It went smoothly. And we even found his crocs that went missing two weeks ago! They were in the procedure room, waiting for us. Caleb handled it all so well, even the not eating for the 12 hours leading up to the procedure. I was mostly afraid of that not eating bit, but he only asked a few times about food. He caught up this afternoon.

The results of his bone marrow confirmed the remission that we saw back at day 18. We are still waiting for results to determine his final risk group, standard or high, but from what I understand it will be a while before we get those.

I also had further clarification of what we're doing here and how long it will be. When I asked our doctor how long she thought we might be in, she talked about something like 4 days. When I told her I had been told 2 weeks, she reassured me with a smile that it doesn't take that long! The only reason we'd be here that long is if there are complications, like a fever. We may be home this weekend! That's great news for us.

I hope you all have had a good day too.

J

Pictures of Today-Caleb

This is a tiger cat guy. They visited me. I saw them at the stadium too. They gave me a hat. I gave it to daddy.

This is my pump. They put chemo in it. Sometimes it beeps. I take it with me everywhere I go.

This is my aunt Rhoda. She is a really great aunt.

I built a tower with Debbie and it was a high-scraper.

Caleb's Post

Caleb got a new camera! Thank you DeJonge-Fluit family! He will try to post as regularly as mom does.


Aunt Sara and my little girls. We went for a walk.
This is mommy pulling me in the wagon when I was taking pictures.

We were home for a few days. We had a good time at home. This is Aleah eating a syringe.

I took my medicine really well. This is prednisone and I like prednisone. And that's my water and he helps me take my medicine. I don't take prednisone anymore, just ranitidine.

Can you guess what this is? It's my paper cut, covered up by a bandaid. Paper cuts hurt more than finger pokes.

Here's my dad. I took a picture of the snake on his back. I have a shirt sort of like daddy, because mine is blue.

We hope you have a good time.

From Caleb

Consolidation I

We visited with Aunt Sara & Uncle Ralph on Monday. Nella and Caleb had a blast on the trampoline!

Caleb is feeling strong enough to jump on the trampoline. This is so fantastic, I can't really find good enough words to describe how happy this made me!

Aleah and Caleb share a ride in the buggy.

It's been a week since we last put up a post! I had hoped to put something up last night, but we're out of practice with hospital life and we forgot to get the network password and so we had no internet access. I read a book instead. Also a good way to pass time.

We arrived at the hospital last night after 8pm, and are settling into our shared room. Because Caleb's counts are up, we don't need to be in isolation anymore. We were able to go out and roam the halls this morning, and Caleb played in the hospital's play room for the first time! Caleb visited the Ronald McDonald family room here on the third floor, another first for him. It's a different hospital experience than he's had so far.

Today Caleb will have a lumbar puncture and bone marrow aspiration, the same thing that he had way back on day 18 when we learned that he's in remission. Today they'll do the same thing they did on day 18, and we trust that today will confirm the same results, no blasts! Caleb is beginning the next phase of treatment, called Consolidation I. The best way I can describe what happens from here on is that we will continue to blast the blasts to make sure they're really gone.

The medicine that Caleb receives changes today. He's been taking steroids throughout this month, which has had a huge impact on his appetite and mood. He's put on a few kilograms of wait (yes, a few) and he constantly thinks about eating. His mood also seems to be food-dependent. When he seems particularly grumpy, he can be calmed by a promise of more food or drink. This is such a change from before. And it will change again! Sometimes it's hard, sometimes it's funny. We trust that the process is eliminating the blasts and so we remain positive. On Sunday, Caleb was looking wistfully into the distance. I asked him what he was thinking about. He sighed and said, "I was thinking, you know, the grocery store sells Sunchips." I wonder what things will be like next.

We've been wondering why we need to be in the hospital for this phase. The reason is the particular chemo drug that Caleb will receive tomorrow morning, high-dose methotrexate. This is a particularly toxic drug that must be cleared from his system before we can go home. They'll be testing the pH level of his outputs (his pee) to make sure that it's gone. It's a bit sobering to think that it's probably dangerous to be at home with this drug in his system. We really take the good with the bad in chemo! The bad, this drug, is good, because of what it does to the blasts.

Today Caleb is in good spirits, and is healthy. We go day by day still, and today is good. And yesterday was good, and so was the day before. We were able to go to church on Sunday, the first time in a month. We had a great time at Aunt Sara & Uncle Ralph's yesterday.

Stay tuned for more posts. We've found a way for Caleb to communicate with you all. Intigued? Check back soon! (I hope :) )

J

Never Alone

The sky over Hamilton Harbour on Saturday night

Listen to me now

I need to let you know

You don't have to go it alone

This piece of song, taken from U2's Sometimes You Can't Make It On Your Own, was playing as I sat down to type this post. And my title for the post was already chosen. In how many ways do Tim and I know that we are not alone?! It's beyond number.


We haven't posted in a while because we've been home, doing home things. We had a really nice weekend together. Tim and I celebrated our anniversary by going out, leaving the kids home in someone else's care. And we relaxed. We have learned how to use "texting" on the phone, yay for us, and that helped us keep peace of mind because we could text with our babysitter. Then we don't seem like over-anxious parents, calling repeatedly to see if it's going okay.



Saturday morning was somewhat difficult as Caleb's temperature started rising just after breakfast. I felt like we were heading into a repeat of last Monday, when he did run a fever. My anxiety level went way up and I made sure we had everything packed for the hospital. I was sure we were going in. But, as the morning wore on, his temperature didn't climb as high as 38 celcius, and it came back down. 38 Celcius is the temperature reading that prompts us to call the hospital and most likely get admitted. I have no idea what brought Caleb's temp up, but I am incredibly thankful for the answers to prayer as it came back down. I really just wanted to stay home, to not have another disruption, to keep things peaceful and simple for our girls and Caleb. Thankfully, they are. It's Tuesday and we're still home!


Monday was a clinic day for us. It was a great day, relatively speaking. In the new normal, it was awesome. Caleb had his finger poke at 8:30, and he didn't cry. He said (sorry to those squeamish ones) that his blood looked like ketchup. Nurse Debbie agreed. We went up to the clinic waiting room to wait, and Caleb was all over the train table. We put his freezing cream on his port site in preparation for getting some chemo, and he went back to playing. Caillou was on the TV, and Caleb watched with Jason, a little boy in his 17th month of treatment. I joked about how we used to think Caleb looked like Caillou, and now he does even more!


The head nurse gave us the printout of Caleb's blood counts. These came as great news. All of his blood counts are up from before. This is a first for him since we came to the hospital, and probably for the last number of months. He is still low in all of the major areas--red blood cells, platelets, neutrophyls (the infection fighters)--but he is higher than he has been. We can tell in the amount of energy he has had at home, for playing and fighting with his sisters. It's nice to see it on paper too.


After waiting a little while more, we were able to go the examining room and receive Caleb's chemo. This was our first chemo as an outpatient, so we didn't really know what it would be like. The nurse took a little pokey thing (sorry for the really poor description) that looks like an enlarged thumbtack, and poked it into Caleb's port. It was numb, and while Caleb was screaming and yelling and fighting, he didn't flinch for the poke at all. The nurse (Andrea) attached the syringe with the chemo (Vincristine) in it and pushed it in. And then she pulled out the thumbtack, again with Caleb screaming and fighting, and again with no flinching, and it was done. Caleb agreed that it didn't hurt. As he wiped away tears and caught his breath, Andrea brought out the treat box and he was fine.


That was our morning! We were home again by 11:30, in time for lunch.


We go in again on Monday of next week. It will be another short clinic visit, but then we will be admitted that evening to begin the next phase of treatment. This phase begins with hospitalization for about 2 weeks, give or take, depending on how Caleb's body responds to the treatment. You can pray about that! I'll give more information about that time as we get closer to it.


For now, this week we are home and having (mostly) a good time together. It's taking some adjustment to be together again, and I'm now finding that I need to catch up on sleep. My adrenaline is easing off as my worry eases for this time. Because Caleb's counts are up, and we don't expect anything for a week, my system is allowing me to recover a bit. And so last night I went to bed at 7. I'm catching up. The kids are adjusting as well, although I hope that getting up at 6 am doesn't last for long!


Thank you for your support and your prayers. We feel it. We are receiving grace for each day. We are so very aware of not worrying about tomorrow, and trusting God for each day.


J

Therapy

Horticulture Therapy: being home means I can enjoy what's blooming and growing. And there's a lot of it here! This is our first summer with our gardens in full swing. Thanks to friends for helping us weed and water!

Physiotherapy: A new ride on pedal tractor showed up at our house yesterday. Caleb wanted to play outside! I'm not sure who enjoyed it more, Caleb or the neighbours who got to watch him play.

Art therapy: Caleb and Nella got to make a mess. Good times.

Being home is therapeutic. It's good for my soul; it's good for all of us. I guess that's why it's home. Today was my first day home with the kids with no support person in our house before Tim came home from work. Our meal was provided again, which is so helpful, especially for today! The good thing about being home by myself today was that I didn't realize it until mid-afternoon. It was a great day. I have to confess that Nella spent the whole day in her pajamas, but that was her choice.

I can tell that the kids are happy to be all together as normal. This morning at breakfast I asked what they'd like to do today (because I wanted to go for a bike ride). Both Nella and Caleb said they wanted to play with toys in the living room. And that is what we did for most of the day. Lego is a great friend.

Now it's time to start catching up on sleep, I hope. It would be good to get a few good night's sleeps in before the next time we need to be in hospital. It's the weekend, so here's hoping that the kids sleep in a bit (yeah right)! I hope you all have a good weekend.

J

...and we're home again

This morning Caleb worked with Reg, a hospital volunteer, building a mini-foose ball set (this gave me a break too!)

We are trying to be creative with how we spend our time so we can have more time together. Here we are having a picnic meal in Caleb's room. It was really so much fun.

We arrived home this afternoon at 2. So good to be home. Once things stabilized for Caleb it was hard to still be there, waiting. I'm glad we were there, because should he have spiked another fever, they could deal with it immediately. They really do take such good care of us.

It's been so up and down this week. It was hard to go to the hospital on Monday, but it was good to get good care. Caleb's fever really did go up quite high before disappearing. We're so glad it went away with treatment. The bone marrow procedure and lumbar puncture on Tuesday were nerve-wracking for Caleb; he was so afraid to "go to sleep" again. I don't blame him: the last time he was put to sleep this way he woke up in PCCU. I'm so glad that things have gone smoothly. Hearing about no blasts has been so fantastic, the overall picture looks good. It was still hard to be in the hospital for still another day when he was feeling and responding so well. The whole experience is so emotionally up and down and mixed all around, it's hard to know which end is up. I suppose I'd sum much of it up by saying that hospital stays are vital, but they are hard for a family to handle. It's the dividedness of the family that is the kicker.

But we've made it home again. Caleb sleeps in his own bed, and I do too! The kids can play together, although they need to learn how to do that again after having time apart. Caleb's moodiness is really hard on our sensitive Nella, but we're getting through, and look forward to a time when he won't be on steroids anymore.

Keep him in your prayers, and all of us. Please continue to pray for no fevers, and that the chemo continues to be as effective as it has been. I cannot thank everyone enough for the support you continue to show to us. Thank you, because it really keeps us going.

Have a good night,

J

Blasted!

Day 18 of treatment. Today they took a sample of bone marrow for testing. A few weeks ago, this is how they determined that Caleb has ALL. A few weeks ago, they found immature white blood cells, called Blasts, in his bone marrow. They began treatment that continues today. Today, they took a sample of bone marrow for testing. This afternoon our doctor came running, yes running, down the hall to tell me good news. Today, they found NO BLASTS in his bone marrow. Hallelujah! This is incredible and wonderful and I can't really find words. Praise God, and thank you for your prayers for this very thing.

What does no blasts mean? It means that the chemo treatments and the steroids that Caleb has been taking since June 24 are doing what they're supposed to do. The meds are reducing the production of blasts. It means that so far, Caleb's leukemia continues to follow a standard path, and we're on the right path of treatment. There are many cases of leukemia where today's test would still indicate the presence of blasts; we recognize what a gift this is for us today. No blasts means we're doing the right thing.

What does no blasts not mean (try that double negative)? We are not done. Because we're doing the right thing, we will continue with this path for our 2 years and 32 days. There are still many more chemo drugs to take, and side effects to control, and fevers to avoid/treat. We will still spend a lot of time here at the hospital, hopefully mostly outpatient, but many days as inpatient as well. It is still a long road.

It is a great relief to know that despite this hard time with Caleb's fever and being hospitalized, the extra pokes he's needed because of extra blood testing because of the fever, and not being home, we are doing the right thing. We are fully reminded that we are in God's hands and he answers prayers.

Right now, it's 10 pm. Caleb is sleeping. I finally figured out that if you hang a blanket over the door just right, you can block the light coming in and still have the door fully closed. It's almost dark and quiet in here. I'm going to sleep soon too. I hope it's a good night for all of us.

Everyday Ordinary and Extraordinary things of life

Caleb shows off a hat made for him by cousins Megan, Katrina, and Mia

Sunday, at home, with our new bouncy ball. We had a really great weekend at home.

This is the hat that Caleb won for being brave for the IV nurse. It took him a few hours to be able to smile like this with the hat. This picture is for Heidi for her hard work with Caleb.

Thanks for the stickers, Micah! And thank you Disney Pixar for Lightning McQueen.

This is nice.

Life is rarely predictable. Yet we can somehow absorb what would otherwise be extraordinary events into everyday routine. If we try and take in everything all at once it can be too much to handle; the negative usually overwhelms the positive--that's human nature. When we take it a step at a time, we begin to notice more of the small blessings that we'd otherwise miss. The blessings are what make life bearable, and enjoyable. The small things become the big things.

Our small big things for the past 24 hours are many. Caleb was admitted to hospital, and they started antibiotics. He was able to have tylenol for his fever, and the fever broke sometime in the late afternoon. He is still taking antibiotics, but we haven't seen a fever since and we pray things stay that way. Caleb received blood yesterday and platelets today, and as a result he has much more energy and is far more pleasant to spend time with. Nella is particularly happy about that. Caleb had his bone marrow and lumbar procedures this morning, and we are back in our room watching some TV. Things are stable for now, after the worry of yesterday. Nella is here today, Tim brought her in the morning. She's been able to spend the day with us, and this is so good for all of us. Caleb appreciates her company (most of the time) and Nella is so happy to be with Caleb and I. The two of them are so close.

For now we will wait and watch, and pray for no fever.

We're back at the hostibull

This morning Caleb began to run a fever just after breakfast. It was a slow climb up to fever temp, and I was on the phone with the doc here. We came to the hospital around 10:30, and they admitted us just after lunch today. Caleb's temp was going up and down, but now it seems locked in at "high". They've started him on antibiotics, and have taken blood to uncover the source of the problem. Hopefully it's something simple. My prayer is that it's not the portacath. I don't yet know what it would mean if it was, but I just don't want this portacath to be giving us any more trouble. For now we will rest; Caleb is tired. He's been a trouper once again. He is so tough, it hurts. Please pray for this temperature to come down, for a speedy recovery, and that his treatments tomorrow will not be delayed. The earliest we could return home is 48 hours, but we're not counting on that. If it happens that would be wonderful. Caleb is not very happy to be here, and so I'm not too happy about it either. We are making the best of it, as we must. We are in the best place we could be right now, and I'm thankful that I'm no longer the one monitoring his temperature. His encouraging artwork is back up on the wall, with a few new additions. We're just about to dig in to some pizza from Mike's Miracles' movie night. I am hopeful for a good evening and good rest for both of us.

J

Day by day

We are still home. This is great news and we can hardly believe it. Thank you for your prayers; they are being answered in wonderful ways! It's Tim's birthday today, and we're enjoying a quiet day at home. We have been "on our own" since Thursday night, and thanks to rain yesterday, Tim and I were home together yesterday. Today Oma and Opa will visit for Tim's birthday, and I'm sure they'll love to see Caleb at home too. Our days are falling into routine. Caleb is struggling less with meds, and because he's able to move around here at home, his legs/knees don't bother him as much. There are definitely still tough moments, but we are still overwhelmingly blessed.

The kids enjoy a picnic snack. Caleb is not very interested in playing outside these days, but I used his love of food to lure him outdoors.

This is our outdoor rooftop garden (tomatoes & zucchini) that has been lovingly watered by friends while we've been gone. This afternoon I learned that with our neighbour's help, Opa was also able to water these plants -- by standing on the roof.

While picnicking outside, we spotted our first zucchini! What a treat! Caleb is asking for zucchini and cheese soup. Yum! (??)

And Aleah found the tank we had been keeping tadpoles in (up until a few weeks ago). It makes a good kid tank too. :)

I hope that you have a good Saturday too. Thank you for your prayers for our strength and Caleb's health. Please keep his body in your prayers as he continues with chemo. We'll go in on Tuesday again. In a few weeks they'll have a better idea just how tough this leukemia will be to beat. You can pray about that.

J

More New Normal

The kids played couch this afternoon. Nella, Caleb, Aleah, and Cousin Luke were buried underneath cushions and Uncle Darren almost took a nap on them!

The steroids diet. Here is a meat and cheese sandwich. To make, lay out a piece of meat and layer several pieces of cheese on top. Roll up the meat as you would a tortilla. Enjoy. Recipe by: Caleb Brand. Every man's dream lunch?

Today was our first trip to the outpatient clinic at Mac. We were told we could be there as early as 7, and we almost were. The kids woke up at 6 this morning. ;( When Caleb and I came out of the elevators at Mac, wondering just where to go first, we immediately saw a young girl sporting a chemo cut and asked their family where to go. We followed them and enjoyed a bit of time chatting together. Caleb had a "finger poke" first, if you've ever given blood (have you??) you've maybe done this before. The nurse was quick and efficient and I was thankful. They use the finger poke sample to get his blood counts. After the finger poke we went upstairs to the clinic.

The clinic waiting room is well stocked with toys and games. Caleb bee-lined for the train table and had a great time with Thomas And His Friends. We were the very first people there (newbies) and so Caleb didn't have to share trains. Nice. We were not bored while waiting. The child-life staff person came and taught Caleb how to play Nintendo DS (I learned too) and before long it was our turn. The nurse went over Caleb's counts, which are still very low, and checked him out. He checked out just fine, although he really protested throughout the whole ordeal. It was all new, and I could see just how nervous he was. It was all quite uneventful, actually, and I'm so thankful for that. We'll have to go back many times, and they won't all be this uneventful.

Today was a good way to get our feet wet in this part of our new normal. I'm so glad it was uneventful, because I was exhausted by all the new learning for myself. Today was a day full of information and experiences to process and incorporate into our new way of doing things. I need a good nap.

After clinic we were able to meet up with Aunt Rhoda for a few minutes. This was really great because Rhoda had been in France and Switzerland for the last month, on a grad school assignment. We had not been able to see her yet. We had coffee and cookies together. I asked the nurse if it would be okay to see Rhoda, seeing as Caleb's counts are so low, and the fact that Rhoda's just been in an airplane. The nurse simply stressed hand washing and good common sense. I appreciate the nursing staff at Mac.

We came home to Aunt Shari and Uncle Darren, who had stayed with the girls for the morning. I was a little wary of having people over, especially children because they carry so many germs :), but I'm glad we had them all over. Cousins Luke and Kyle played with the girls, and when we came home it was so good to see the girls having a great time. Caleb even joined in, as you can see from the couch picture. It was refreshing. We won't be able to do this often because of Caleb's low counts, but it was a really great time.

We continue to be awed and amazed by the support and care shown to us. Please keep Caleb and all of us in your prayers.

J

Every Blessing

A Tuesday afternoon trip to the lakefront at Lake Ontario. We played hide-and-seek behind in the trees, and we saw a boat anchored at the shore. We also saw big dogs and smelled french fries and chicken nuggets cooking at a restaurant. Then we went home and had supper. (as told by Caleb and Nella)

We are so far still home and enjoying it. With Grandma's help, we are adjusting to life at home. I'm learning how to organize our meds. I'm getting used to washing dosing syringes; Grandma was helpful in setting up a system here for that, thanks to her experience with Sara and her girls.

We take each good thing for what it is, a gift from God and an answer to prayer. In our house, at the end of each night, we sing a song with the kids. In this song we name a few of the good things that God has given us that day. There have been times these last few days when I would think, "What in the world can Caleb think of that has been good today?" yet there are always many things to name. This is how we do things, one day at a time. And sometimes one moment at a time. When it's good, we'll enjoy and give thanks for what we have. Carpe Diem. When it's bad, we trust and hope that this too shall pass. That's how I'm operating right now, and so far so good. We remain in God's hands.

Thank you again everyone for all of your love and care. Your prayers are being answered, and we feel your support. We are still receiving meals, and that is such peace of mind and so good for us right now. Thank you. We still cannot really take visitors right now, and so I give thanks that Caleb has two sisters to play with. I am thankful for this blog that helps me stay connected with you, and for email, and telephones, and for Grandma who makes it possible for Tim and I to go out for a walk at night.

I hope you all have a good day today.

J

We're home...for now

It was haircut night at the Brand house.

And it was cupcake night. Thank you Betty!

Caleb had physio with Carolyn today. His knee joints really stiffened up over the first week of hospital stays and beginning treatment. His knees definitely do better with more exercise, another reason why it's good to be home.

Today we were discharged from the hospital at suppertime. It took two trips to get everything down to the van, but we're home. It's good to be home. We are scheduled to be back at hospital for "clinic" on Thursday morning. Clinic will be a routine part of our lives, starting now. It is the place/time that will deal with our outpatient issues. We'll get results of blood work, receive transfusions, and have chemo at clinic. I was given a good run down of how that all takes place, what the procedures are, etc. this afternoon. It is well run; there is quite a system to how clinic happens. I like how well planned it seems to be. There are many people coming through to access these services, and many health care professionals to coordinate, and it all seems to work as well as might be expected with so many variables. I am once again wowed by our health care system. We have been told to expect Caleb to spike a fever sometime in the next few days or weeks, it's very common. We'd be re-admitted because of Caleb's low counts, and in the hospital for quite some time again. This is again a reminder to us to limit Caleb's visitors for the time being. It hurts, but it's best.

I am also continually amazed by how much can happen in a day. This morning we got up at home, had breakfast, and made our way to the hospital. Caleb had an X-ray, a physio appointment, a transfusion, meds, meals, and of course TV time. I met with our social worker, physio person, clinic nurse, doctor, and "interlink" nurse (Interlink helps to connect home and hospital experiences--they're planning a home visit for Wednesday). Caleb and I had a fun wheelchair ride down to X-ray, our first trip there. Previously the X-ray technicians had come to him. Now he's healthy enough to go to them. It was a little scary at first, but 3 stickers later we were done.

The platelet transfusion was the last thing that needed to get done before we were free to go. Caleb was exhausted and so was I. We had a busy and not so fun evening time (I think we do all have those sometimes, actually) before the kids went to bed. We can definitely see the side-effects of the steroids. Caleb was quite morose and grumpy shortly after arriving home. I am hopeful that a good night's sleep will at least give us some more sunshine and smiles in the morning, or part of the day. This is just part of all of the treatment. It's hard to handle, though. Please pray for patience.

We did haircuts tonight. We had talked about it for a few days, a good summer haircut for Tim and Caleb. Our intent is to ease Caleb into losing all of his hair. Tim was a trooper and let me cut his hair. In fact, I actually chickened out of cutting off Tim's hair just before doing it. He insisted that we do this. He'll need to get a bit of sun on his head to even it out. Not too much though :). Caleb was mad about his haircut, although he wanted it, and he liked that Dad was getting his haircut too. He particularly wanted the shower after the haircut, because he can finally get his whole body wet because he has no IV line or tube of any kind dangling out of himself. He was at first worried that his bandages would get wet, but relaxed when I told him that was okay. We did end up having a nice bedtime, and the kids are all sleeping. Caleb said "Why oh why is my bed so comfy?" Thanks, Dan, for setting up the kids' beds.

Here's to strength for tomorrow. I hope we all have a good night.

J

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One quick note--this new blogger just discovered that I can change the settings about who can comment. You should now be able to post a comment, whether or not you are a "blogger" or whatever. I hope it works!

Two weeks

Nella, at our picnic yesterday. It was too windy for Nella, she said she was going to blow away. It was safer in the buggy.

Aleah. Our wild child.

Caleb loves his new hat from Tammy. We love it too.

Monday. Two weeks ago we came to the ER and we've been in and out of here since then. We are receiving excellent care. Mac has been a positive experience for us, despite all of the reasons why we are here. I am thankful to be in Hamilton, close to this hospital, and quite possibly the best care we could ever have. We know that despite circumstances, through our circumstances, God works to provide for us.

Right now Caleb and I are sitting in his room on the ward, he's hooked up to the IV line again. This is in preparation for more chemo this afternoon. This morning Caleb woke up at home, in his own (new) bed. He slept-in. We had a casual breakfast at home, took some meds, did a puzzle, and came to the hospital. Now we're relaxing for a bit, waiting for blood work results and for rounds to be completed so we can know what our next steps will be. There is the possibility of being discharged today. This would mean we go home until probably next Monday. We are on day 11 of treatment. There is chemo scheduled for today, and then the next scheduled chemo is on day 18 of treatment. That is a week from today. All of this depends on blood work results and Caleb's health. Really low blood numbers would mean coming back for transfusion. Fever would mean coming back for antibiotics. We can pray that neither of these happens. So far things seem to be going well.

We had a nice time at home. It is still stressful, and we need lots of patience and help, but I can see that it will get better. For a short while yesterday afternoon it was even relaxing and more like normal. I'm looking forward to getting a rhythm and routine to how we do things, and that is something we'll be learning this week. I woke up in the middle of the night last night, thinking hard about whether or not we had given Caleb all of the meds that he needed or if maybe we forgot something. I've resolved to make a chart that I can check off when we've given something. I'll ask the nurses today if that makes sense or if they have a better idea. Any of you more experienced parents have any ideas about this? At this point, I don't know how they'll send his meds home with us, and I'm sure that will also affect how we do things.

Yesterday we popped in at church for a few minutes. Caleb really wanted to go, and because our church is small, we donned masks and came in. We lasted about five minutes, but it was nice for all of us. Aftger church we had a picnic lunch at the lakefront and had a walk (stroller ride) by the Burlington/Hamilton lift bridge. There was a massive cargo ship going through, and we managed to make it in time to see it! That was enough activity for one day, and it really only lasted an hour!

Again, thank you all for meals, gifts, calls, prayers, and all of the ways we experience your support. We received a box with many individually wrapped presents, given by a family who's father had spent some time in hospital as a child. These individually wrapped gifts are serving as rewards for meds taken successfully! Thank you! I'm slowly catching up with some of you in person and by phone, thanks for waiting and sticking with us. I was able to talk with a friend last night who shared about learning to give her daughter needles for diabetes when her daughter was nine. This really touched my heart. I take such comfort in shared difficult experiences like this one. Thank you for sharing your own experiences. We are strongest when we are together.

Caleb played his guitar for the first time since coming home. He and Uncle Johan had a jam session on Sunday night.