A week...

It's a week since we learned officially about Caleb's leukemia. I'm still very much adjusting to using words like cancer and leukemia to describe our family and my son. So much has happened in such a short short time. We have a lot of thanksgiving and a lot of heartache as we sort out our new normal. We ache because our reality, Caleb's hurting body, cannot be just taken away. We know this is something we must endure. There will be more bad times to come. We can pray that this suffering be taken away, but that is not to be. This leukemia can be beaten, eliminated, but there is much suffering to travel through before we can get there. I just wish that I could take the suffering for him. It reminds me very much of a loving Father who wanted so much to take the long-suffering from his children that he took the suffering himself. I feel that pain. Anyone watching their child suffer in any way can understand this pain. I've heard parents talking this way in the halls here. The suffering of chemo will be great, but the result and work of chemo is to eliminate the greater sickness, leukemia.

I met with a pharmacist today and learned about the various medecines that Caleb will be taking, and the side effects of the medications, and the medecines used to control the side effects. Fortunately they give all of the information in print as well. I appreciate that. Reality is slowly setting in, particularly as we get further into treatment. Caleb may lose his hair within two weeks. Time for summer haircuts in the Brand house! Hopefully we'll get both Dad and Caleb's hair cut this weekend.

Caleb is struggling with leg pain tonight. It aches me to see him ache. It's waking him up from sleep, and we've given him some medecine (again!) to relieve the pain. I just turned on the TV, yes, at midnight, to distract him from the pain until hopefully the pain medication kicks in. Backyardigans to the rescue. I hope. I'm going to keep this blog post short because I need to give him my attention. When I started posting, he was sleeping peacefully, but not so anymore.

Please keep praying. And if you get this right now, pray that his legs stop hurting him.
Thanks for your care for us.
J

Grandpa reads Curious George to Caleb.

Day 5

I learned yesterday that we were on day 4 of treatment. I had been counting wrong, small surprise given all of the information we've been taking in. So that makes today day 5. More chemo drugs today.

The air conditioning is back on in the hospital (it was off yesterday), and Caleb wants socks. Grandma and Grandpa packed us some socks last week when they visited, so hurray, we had some! We're living out of bags and boxes, and getting used to it. We're able to do laundry here in the Ronald McDonald family room, in the hospital, and I'm adjusting to the high efficiency machine. (I always use too much soap!)

Caleb had a good night of sleep last night, although he was up at 10 to throw up. He had felt yucky earlier as well, but no throw up. After throwing up, they give him some more anti-nausea medecine and he slept through the night. He is in good spirits this morning, and a volunteer, Debbie, is playing with him. I asked for relief so I could go and take a shower, and as I was coming back, I could hear his peals of laughter coming down the halls. He's having a BLAST with Debbie. It is so wonderful to hear him be happy. I hope Debbie sticks around with us for our time here.

Here's to a good day. I hope you have one too.
J

Settling in??

Caleb is enthralled with the card that he received from our church family on Sunday. He noticed it in the middle of the night on Sunday/Monday and smiled such a happy smile. Here is is checking it out. Thank you New Hope and Charlton church families. We feel the love and are thankful for you.

Caleb is borrowing Grandma Nell's stethoscope to check out his dino and other animals. We listened to his heart and Mom's. It's a great learning and memory tool. Anything we can do to soften his experience of health care professionals! It's getting a bit better, but he's still reluctant to trust. I'm told that will come with some time, and I believe it.

Lots of smiles and laughs this morning with Tammy. We are so thankful for this time and for the relationship between Tammy and Caleb that makes a morning like this possible.

We had another busy day, we moved again! Caleb is technically in isolation because of his low counts, and so a shared room was not preferable. They were able to get us into our own room this afternoon, which is nice for Mom too! We have been hanging up the artwork and cards each time we move, I do hope that this is our last move for a little while.

Caleb started more intensive chemo today. He had been on steroids since Thursday (performance enhancing drugs? I think not) and then today he had a few other ones. One of them was bright red, like Kool-aid. We are told to expect more side effects tonight and for the next few days. From the steroids we should expect increased appetite and moodiness, and from today's medecine we can expect nausea and tiredness. There's probably more, but that's all we can absorb for now. Our nurse also told me that when I have to clean up his bodily fluids (like when he misses the toilet when it's time to pee), I must use gloves because of the chemical content. Wow.

It was a pretty good day--Tammy came over for a little while to give Mom a break and play with Caleb. He had a great time, check the pictures. Grandma came over in the afternoon with Nella and Aleah, and they helped us move. We moved Caleb's bed from one room to the other with all three kids on it. Nella and Aleah enjoyed his bed while Caleb sat in a chair to watch TV. Caleb's smile is wide each time we've come to a new room and he spots the large television. I appreciate Treehouse TV more than I ever thought I would.

Caleb's getting ready for bed, playing and talking with Dad, who stopped by on his way home from work. Please pray again for a good night sleep for our little boy. His body must be strong to fight.

Peace

J

A little more stability

We have moved from the PICU! We were able to move this afternoon, unfortunately right when King Caleb was taking a nap :). When he leaves his room he has to wear a mask because his defences are so low, and this was a big deal for him. I think he's also a little worried each time he leaves his room, because each time he's left it's to go for some invasive procedure that involves him going to sleep. This time, it was to our cozy (?) shared room in the pediatric oncology ward. His neighbour is not here, she is on a leave of absence. Patients may have a leave of absence if things are stable; it's an opportunity to go home/have a break from the hospital. for a day, or possibly more. Our weekend doctor just came in and told us that because we live in Hamilton, we may be able to do the same thing sometimes. This is both exciting and intimidating. I'm not ready to take my IV toting son home yet! (if he came home, he wouldn't be hooked up, don't worry!) For now, we'll enjoy this short time of stability.

Funny from Caleb today--his weekend doctor's name is Uma, and I told him so. "Hi Oma Doctor!" he called. This is the nicest thing he's said to any of his care providers since Thursday.

Thanks for your prayers,
J

Good Morning

Good Morning,

Caleb had a really good night, he slept all night! His Dad, on the other hand, slept some and took comfort in the sleep his son was getting.

T

more than just words

I woke up with a strong urge to put some pictures here. So here they are. It's less desirable for me to put these ones up, because Caleb looks less like himself. He's not had food since Wednesday, and he's very tired in these pictures. He's lost a lot of weight, I can see that now. We know that he is closer now to being healthy than he was 5 days ago, or 8 days ago, but it's hard to see right now. I talked with Tim this evening and he said Caleb had slept straight from about 8 pm. I do hope he's still sleeping soundly. Thanks for your prayers for rest.



Caleb watches Blue's Clues on Uncle Dave's laptop. Notice the blue tube that is wrapped around Caleb's blue bear--that's the "blow by". They can attach an oxygen mask to that tube, I learned today.

Cousins Emily and Sophia (Sara & Ralph's oldest two) presented Caleb with a gift from Mike's Miracles, started by a family from their school. It was a short visit, but nice to see Em and Soph and watch them help Caleb with his present.

This is close to 7 pm last night, a short visit from Oma and Opa, Aleah and Nella. Oma and Opa have been faithfully and devotedly caring for the girls since Wednesday. The girls are strong, even as it's hard on them. They both love Caleb's bed. Caleb looks so very tired, but he did try to hold Aleah's hand. She prefers to keep her fingers in her mouth.

J

Our new normal

Today is day 3 of Caleb's treatment for leukemia. I wonder if we told you all that yet. In all of the rush and bustle with the surgery and it's complications, that part has kind of been lost. Today I began to think more about chemotherapy and all that will mean for Caleb. I'm trying to take a little bit at a time, which is most wise, but I'm currently very aware of the long road ahead for him and us.

Chemotherapy will last for 2 years and 32 days, if there are no bumps or changes in his status of "standard risk." The hardest part will likely be these 32 days we are in right now. I really hope it is. For 32 days he will receive various forms of medecine, all aimed at either reducing or blasting the blasts in his blood, and any that could potentially form elsewhere (like in his CSF). We may be able to do 2/3 of this time as outpatient. I'm hopeful that will be the case, although these past few days have shown me just what all can happen.

The whole course of the chemotherapy treatment is divided up into phases. We're in the prophase (before it really starts, although he's getting steroids right now). Tomorrow we'll be in the remission induction phase, which lasts for 32 days. After the 32 days, the doctors will test Caleb's marrow and hope to find no blasts, which they'd call "remission." You can begin to pray for that now! After remission, the 2 years of chemo following are all aimed at keeping Caleb in remission. It feels to me sort of like reinforcements--maybe sandbags against a flood? There must be a better analogy. Some of the phases of chemo will require us to be in hospital, but most of it should allow us to be home together. We'll be making regular trips to Mac for a long time.

I am most impresssed with the study and research that has gone into beating leukemia. We have heard so many amazing stories of healing. We treasure these stories. I have been able to connect with a few families who's children, now grown, fought leukemia when they were small. Tears of shared pain have healing power and give strength. Thank you.

Caleb had a good day, all things considered. It is not easy. He had his chest tube removed this morning, which gives him more freedom of movement. He can't really get out of bed right now, and frankly, he's so exhuasted that he probably shouldn't. I have come home for the night, hard to do, but Tim is staying with Caleb tonight. The PICU (we're still there) doesn't have cots for parents and so it means a night in a chair. I'm trusting and hoping that Tim can sleep anywhere, and praying hard that Caleb can have a good night's sleep. Thank you for your prayers.

J

I'm just being quiet

Good news for this afternoon! Caleb was extubated (tube removed) this afternoon at 2:10. It took a little bit, but he seems to be breathing well on his own now. He has what they call a "blow by", just to give some extra oxygen to boost him a little. A blow by is basically a wide tube that provides an air flow of oxygen--the open end is placed near Caleb's head so that the area around him has a higher concentration of good air. I've been reading stories to him for the past hour or so, and that oxygen is potent! We are having more smiles and laughs in the PICU, our nurse Erin has been really great for us.

Caleb's chest tube was not removed; they hope to do that tomorrow. The doctors said that because there is a small chance that the disruption of removing the breathing tube and a bit more movement could make more fluid show up around his lungs. We know well that the small chance could very well happen, so we're happy to wait until that risk has passed before removing the tube. It doesn't seem to bother Caleb too much, and he's still on a small dose of morphine.

More good news--they've accessed Caleb's port, which means that all of this surgery was a success, despite the complications. We are so excited about this. Initially when we arrived here this morning, our night nurse told us that she had not been able to get it to work properly. That was hard to take, but because we were so concerned about Caleb, we hadn't had much time to think about it. They have since been able to use it the way it was designed, for giving medications through IV and for taking blood for testing, and so we are thrilled. No more pokes! That was the goal of surgery.

And more good news--our supervising doctor just came in and told Tim and I that there is no evidence of blasts in Caleb's cerebral/spinal fluid. I think I had explained that was also part of yesterday's surgery, to test if the leukemia had spread to that highly protected part of his body. High five was about all Tim, Caleb and I could do for now, but we're celebrating inside!

So much happens in such a short time. Good news for today is relative to what might be happening. We are so glad to share this good stuff for now. Thank you thank you thank you for your prayers. They've been answered in many ways!

We'll probably be at the PICU again tonight, because they'll want to monitor Caleb's chest tube and breathing. My hope is that we can get back into our old ward tomorrow. Caleb asked for his old room back. I think he just wants his big-screen TV. He noticed that our current room (a quad room, four beds) has a sink, and he was jazzed about that. And his neighbour has a Backyardigans balloon, also very cool. Caleb seems to be doing well. He's groggy, but alert too. His personality is gradually re-revealing itself--we are constantly checking in with him and asking him how he's feeling, etc. About an hour after he was extubated, we were asking him if he was sleepy, or tired (he closes his eyes often, and can't talk a lot because the tube affects his throat and vocal chords). He said, and had to repeat it 5 times because he's whispering, "I'm just being quiet." That is my son talking, a true Caleb line.

Please keep praying for him and us. We are truly cared for.

Thanks,
J

Reading and Waiting, Hoping and Praying

I've just come from Caleb's bedside, in the PICU. He had an okay night, mostly resting. They had even considered extubating (taking the tube out) last night, but he was too drowsy. This morning he is slowly waking up, and making eye contact with us. Occasionally we can read his lips, so we have a small amount of communication. Tim and I are taking turns reading to him from a big collection of Thomas the Tank Engine stories. We have to keep him awake like this, despite the discomfort of the tube and being restrained to his bed, so that when they do extubate him he'll breathe on his own. He is a bit more comfortable than he was yesterday when we were reunited with him after surgery. Things are looking good for extubating some time today, and they may even be able to remove the drain tube from his chest. Mom would really like to be able to hold him with as few tubes and wires as possible. Please keep praying, this is going to be a long morning. There's hope at the end of this long wait.

J

Strength for today

Caleb has amazing nurses watching over him. Here are Mike and Caleb.

Mike cared for Caleb for Tuesday and Wednesday.

Caleb was able to go for his surgery today. We took him down to the OR (operating room) at around 1 pm. He took his anasthetic well, much better than he did two days ago when he went for his bone marrow procedure. The doctors have installed a portacath and they also did a lumbar puncture (needle in his spine). The lumbar puncture was to test his spinal/cerebral fluid for blasts and to deliver some steroids to that area, the beginning of chemotherapy. We'll get results at some point about the blasts, but we're thankful that we were able to begin treatment today.

There was a complication to his surgery, and fluid built up around his left lung. The doctors had to put in a type of drain in his side to allow the fluid to go out. The pressure of the fluid pushed on his lungs, and so for now he is on a ventilator to keep up his oxygen. This is very difficult to see, and one of the most difficult parts of what we've been through so far. We know he is in good hands, but it sure isn't easy. Caleb is sleeping, sedated, in the Pediatric Intensive Care unit, with his nurse on constant watch. For this we are thankful. One of the things about this unit that he's on now is that there is no place for parents to sleep over night. Bittersweet is a mild word to describe this. Leaving Caleb at the hospital in some one else's care is so hard. Coming home to our girls, hot food, and our neighbours is so good. We pray so hard that Caleb will have a good night, and stay sleeping, and that we will have a good sleep tonight to get us ready for the days to come. We also pray that we'll be able to have Caleb's tube removed tomorrow morning, and return to our regular ward. Did I ever think that I'd be hoping and praying to be back on the oncology (cancer) ward? Thank you all for your prayers for him and for us. God continues to give us strength for each moment.

On a nicer note, Nella joined us in Caleb's room this morning. She came early in the morning, with Tim, and played and watched movies with Caleb for the morning. She even got to put on surgical pajamas with Caleb. Caleb and Nella practiced their IV and surgery skills with therapy dolls with Maria, a "child life" worker. It was a special and sweet time. Caleb and Nella rode down to the operating room together on Caleb's bed, in their matching pajamas, and drew smiles from all of us. It's hard on her, but she is taking things very well, and times like this morning help so much.

Caleb and Nella are learning and playing with small stuffed dolls;

they give them medecine and talk about surgery. The child-life specialists

do this to help prepare and teach kids about what is happening for them.

King Caleb and Queen Nella are taking a ride on the bed, up as high as it goes!

Just before surgery today, Mom in scrubs to accompany Caleb, Caleb and Nella in surgical jammies. Caleb was not impressed, but he handled it well.

Thank you again for your calls, emails, prayers, and offers of support. We need all of this, and we'll need it for some time. We won't be able to keep up with returning all of your calls or emails, and we really hope that this blog will help us all to stay in touch.

Jess

ALL

This is King Caleb yesterday (and he looks even better, and less puffy, now) after his bone marrow test. Here he is conducting an orchestra of Mozart while Stella does his echocardiogram.

Here's Caleb, serenading everyone like usual!

ALL stands for Acute Lymphoblastic Leukemia. This is what Caleb has. B-cell type, for those of you who might understand this type of information. He is currently in a standard risk group. ALL, B-cell, standard risk are all things that tell us that doctors have a good sense of what to do to help Caleb get better. What we tell Caleb is: there are blasts in your blood, and those blasts are making your body sick. What we're going to do now is blast those blasts.

Caleb will remain in the standard risk group for now, and begin treatment hopefully tomorrow. As treatment progresses over the next 32 days, they'll be assessing to see if he will remain in the standard risk group. Further test results will come with time. With this plan of care, we'll be here at Mac for at least 7 more days, possibly more depending if there are complications of any kind. Caleb will receive medecine through something that we're hoping they'll install in his body tomorrow. It's called a "portacath", something we've recently become familiar with through my neices, Sara's girls, Rachel and Janneke. Caleb will have one too. We're so glad that we can give him one of these, it spares him from IV pokes and blood work pokes, just one more discomfort we can spare him. We hope he'll have the portacath put in tomorrow, it will be a surgery for which they'll give him "sleeping medecine" and he won't feel it. He'll have surgery if there's enough time in the operating room tomorrow. It may have to be bumped back, depending on what else happens for others who are scheduled for surgery tomorrow. Pray that we are able to have this done tomorrow.

Many people have asked about visiting. While we are quite social people, especially my singing red-head next to me, we need to limit our visitors at this time because Caleb's immune system is not what it should be. We'll have to stick with the cards, emails, and phone calls that we've been getting up to this point. We'll let you know if and when this changes. We cannot thank everyone enough for the offers of support and prayers and everything that we've heard and received in the past number of days. Caleb's room is becoming decorated with wonderful artwork, and we love it. Send more! :)

Nella is coming now to spend some time with Mom and Dad and Caleb. For now we will enjoy this health and strength and pray for the courage for each new day.

He knows my name

Hello everyone

This is our first posting as new bloggers. Bear with us as we learn the ropes!

We are also learning new ropes here at the hospital. We met with the doctor supervising Caleb's care this afternoon to talk about the results from the tests we had done yesterday. They have told us that Caleb does have leukemia, as they thought. We are slowly (or quickly?) absorbing this news, and all of the medical information that comes along with it. We've had a lot of forms to sign and people to meet this afternoon. We are doing well, on the whole. Being busy with information, and a busy 4 year old boy, helps to keep us going!

We are taking one moment at a time as we try to gain perspective. At this moment, Caleb is happy, instructing Dad (Tim) how to put his bed up. He is now King Caleb, with his own TV and massive bed that obeys his every command. He is smiling and full of energy. The turnaround from 3 days ago is striking. 3 days ago we came to the hospital with a white little boy, so tired he could barely walk. His mom was also pretty worn out and worried. Now, after 2 units of blood and 1 of platelets, he has colour and energy, he's found his loud voice back, and he's thrilled with the his room. For me, the mom, I too am doing so much better. I know that 3 days ago he still had leukemia, we just didn't know it yet, and it was working hard to bring his body down. Now, we're working to bring his body back up. He's a good fighter, and we are in good hands.

We've been listening to some music here in our room, and a song that caught my ear yesterday, or maybe it was this morning, is "He knows my name."

I have a maker
He formed my heart
Before even time began
My life was in his hand

He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call

He knows Caleb's name. He knows our names and He is holding all of us in his hands. We are so sure and aware of this at this time. Thank you so much for your prayers and for your offers of support and care. We feel your love.

Stay tuned for more information. In another post I'll give a few more technical details, particularly around what kind of leukemia Caleb has and how long we'll be here!

Thank you everyone,

Jess

Caleb - Update number 4

I just talked with Jess again around 4pm (6/22/2010)
Caleb had his bone tests done also an echocardiagram (sp?) was performed as a baseline for future tests. Caleb does well during the test though the DR's have talked about putting a Port-O-Cath in to make it easier to do tests.

Results for the bone test will not be available until tommorow (6/23)

So rest and waiting is the order of the day now.

Caleb - Update number 3

Update 3 6/22/2010 - around noon

I just talked with Jess around noon
Caleb is feeling well, but is a bit puffy from all the fluids / ect that they have given him. His platelets were low this morning so he had a 2nd transfusion to improve his numbers before the test could begin. The Dr's still plan on running tests today, and results should be known by tomorrow, with the outside chance of news tonight yet.
The Dr's are still talking about leukemia however the conversation seems to have shifted from earlier, instead of testing to "rule out" the talk now is to "confirm"

Caleb - Update number 2

2nd update - 6/21/2010 - evening..

The doctors indicated that they had detected blasts in Caleb's blood, and because of this wanted to rule out leukemia, and so they will be doing a bone marrow test on Caleb tomorrow.
again please pray that the test will go well, and that the tests will show no leukemia in the bone marrow.
They are at McMaster hospital, no time has been given for the test yet, but Caleb will sleeping during the Bone Marrow test.

I talked with Jess at 8:45 and Tim and Jess were with Caleb at the hospital, the 2 girls were with friends. Caleb was feeling better from the blood transfusion, but getting tired because it was past his bed time.

Caleb - Update number 1

Hello everyone

Dave here for Jess and Tim...

Caleb has been admitted to the hospital this afternoon.. (6/21/2010)He had been lethargic recently to the point of having blood test done.. Jess took Caleb to the hospital this afternoon when he was not responding much to the meds his DR had prescribed originally. The hospital decided to admit him, and give him a blood transfusion because his blood counts tested low. Not much else is known yet, but we ask for prayers for Caleb's swift healing and the positive outcome of further tests tomorrow. Also pray for strength for Jess and Tim in this time of waiting.