That's more like it

We've had a really good day today. Things started looking up Tuesday afternoon, and we're incredibly thankful. Today Caleb was back to his bouncy self. Here he is with his guitar on our trampoline (thank you Sarah B!! we love it!!), playing and jumping. And singing about playing and jumping. Shortly after this picture was taken, Caleb began to cry in pain, and right away my adrenaline kicked up again, "oh no, what now!!" It was his finger. He had been playing for half an hour without a guitar pick. A bandaid and his own pick and things were good as new. And I could share with him a story of when my finger hurt from playing without a pick. He loves being normal.

We're living day to day again, and I think that we need to remember to stay there. Earlier in the week, as I reflected on our journey thus far, and what lays ahead, I realized that I have been looking too far ahead, and I really should probably stop reflecting so much. When I get back to the day-to-day approach, each painful day will have an end, and each wonderful day can be all-consuming. We had a great day today, and we feel great. The kids all went to bed happy. Tomorrow will have it's own troubles, but today, nearly done, has been good. Living day to day helps me to CARPE DIEM, seize the day, while I'm living it.

Next week, speaking of not looking ahead, Caleb will have a veinogram, a dye-test on his circulation, to check for blood clots. Because of the clot on his port, and I'm assuming because he is newly on asparaginase, which has possible blood clots as a side effect, they want to make sure everything's moving as it should. I'm not thrilled, to put it mildly, that he has to undergo this test. I don't want to go on about it, because it could take away from the joy of our day today, but there is a possibility that the clot that we thought we busted a few weeks ago could be still there, on the outside of the tube (catheter) of his port line. If this is the case, we'd possibly be looking at another port surgery. But, we'll deal with that closer to when it happens (at least, we'll try our best).  It's a sedated test, which is...comforting from a Caleb's anxiety perspective. That will be nicer for him. It makes it a little more complicated, because sedation requires a pre-op appointment, and all of this takes place in a different area of the hospital, and we'll be dealing with different professionals, not our wonderful 3F nurses & doctors. Thankfully, our child-life specialist, Nancy, has offered to come with us. Caleb loves Nancy, and she can help to filter and direct some of how Caleb experiences this procedure. Earlier this week I was far more anxious about this procedure, but have come to a place of nervous acceptance and I really just want it to get done and overwith.

Please pray for Caleb and for his body in the coming week.  And for more strength to seize each day and not fear the next.   

For now, we'll keep ourselves busy painting birdhouses and baking pumpkin bread, and trying on Halloween costumes.  And playing guitar, jumping, and singing.

Learning what works

It's Saturday of "steroids week," and things are better than they were earlier this week.  Caleb was exhausted and mostly miserable for Wednesday and Thursday, but Friday was an improvement.  I stopped giving him the new med to "help" with side effects, and switched back to Tylenol.  This might have helped.  I'll have a better chance to talk with the clinic team about that next week.  It's all a learning process and I can see that it will take a while yet before we figure out how things can work during these weeks.  Even when we think we've got it figured out, things still will change. 

Part of the challenge is trying to figure out what to do with a particular, anti-social 4 year old.  Our house is not well designed, nor is our family well prepared for someone who does not want to spend time with others, yet needs to be glued to mom.  I'm learning how to deal with this, but there are very frustrating times.  His sisters are hurt when he refuses to interact with them, and that hurts to watch.  I can't be frustrated with Caleb, because it's the drugs.  And so I'm frustrated with the steroids.  But then, we need the steroids to help his body gain strength again, and so I can't be too frustrated about that either.  Sometimes I find myself feeling almost like I'm trapped. 

But we're learning.  Thanks to Aunt Sara's idea, we learned last steroids week that headphones can help give Caleb some time away in the presence of others.  We set him up with the Skype headset to play alphabet games on the computer.  This was a nice break for everyone.  He's also learning about lego.  I picked up a new lego set, and he meticulously followed the directions to build a lego camper.  He's now fascinated with lego, little lego as we called it when I was a kid.  And my girls are learning to play together while Caleb does his thing.  Hopefully this is the way we can get through this time, until Caleb as we know him returns next week.

Week 1

Week 1 is "steroids week." Caleb had a lumbar puncture for chemo in his spinal fluid on Tuesday, and they gave him all of his other chemo on Tuesday as well. This is a change in routine that happens every 9 weeks (if I remember right). Normally he has his chemo divided over 2 days. Yesterday it was obvious to me that his body was hard at work recuperating from the meds. He would alternately play and lay on the couch, and he slept for several hours in the afternoon. He is emotional, alternating from tired and happy, to tired and unhappy, to excited and jumping around. He doesn't get angry often, just weepy. He is not very interested in eating, but out of the grace that I've been given, I've had patience to try multiple types of food to get him to eat. His picture is of the pancakes that we ended up having for supper. A good dutch thing to do, I think. He's happy to help make them.

Caleb is on steroids this week, which I'm expecting to kick in soon. Steroids are such a mixed bag. I want them to kick in so that his body can rally a bit more and gain strength for chemo. I'm concerned about the side effects of steroids this week, because it was so difficult for him last time. This week we've added a new drug to help control the pain that steroids can cause, rather than popping him some tylenol every four hours. It tastes awful, but mixed with gingerale, Caleb says it tastes good. It was my child enjoying a glass of pop at 7:30 yesterday morning. We live by new rules in our house.

We ask for your prayers and thoughts as we go through this week. It's not easy, and we're tired. We know it's not all bad, and even as he is worn out from chemo and worried about his body, and I am too, he still plays and enjoys the things he loves. The John Deere video (thanks Cousin Cori) occupied him for a long time yesterday.

Please pray that he'll feel better as he wakes up this morning. Thanks for your support to us.

Reflections

This week has been quiet for us. Blessedly quiet. We had two normal enough clinic days on Tuesday and Wednesday, and no major issues throughout the week.

I visited with friends who's child was admitted to hospital recently. I feel a connection with other parents who know this feeling of sitting at their child's bedside, helpless themselves, trusting their child's physical care to health care professionals. It's a strange position to be in, doing everything I can as a parent, but being limited because he needs more help than I can provide. I did everything I could as Caleb's mom to help him be healthy, but his disease was beyond my ability to "fix." A nap and bandaids, a glass of water, a hug, those aren't enough to stop the progression of this terrible disease. Sitting beside him, laying in bed with him, those are the things I can do, and then I need to watch as someone else does the things that I so desperately wish I could do to make him better.

Too many of us know this feeling. It's my prayer that God will continue to give all of us the grace we need to trust those who care for our children, and show us the ways that we can support and lead our children to receive care. I am so aware that the lives of our children are in the hands of God. And this God is the God who sees little sparrows fall, who clothes the flowers of the field with intricate colour, who paints trees green only to have them burst into colour just before winter, and invented rainbows to contrast with the darkness of rainclouds.

Thanksgiving

 

It is Thanksgiving Day, and newly returned from camping, we sat down as a family and named (made a thought web, for teacher-types out there) our thanks. We tried to prompt the kids to think of things that have happened in this past year, since last Thanksgiving, but their memories seem to be confined to the past 3 days. Ah well.

Our intent in generating this list is to keep in mind the ways we are blessed. These blessings can take the edge off when things are tough. We're sharing our list, because somehow that feels like the thing to do. Sometimes lists or stories like these (like Christmas letters) can read like a list of accomplishments, and so people tend to go glassy-eyed when reading. If you go glassy-eyed when you read our list, at least hopefully you might be prompted to generate your own list.

Here's our list, in no particular order.
-gymnastics
-family
-running shoes
-a bucket tractor
-drawing pictures
-new cousins Hart and Julia
-gardens and harvests
-a new bathroom
-childcare
-people who care for our children
-financial support
-food
-drawing pictures
-learning
-laundry done
-work
-birdies
-a piano, and the gift of music to our family
-soccer, Crown Point Youth Soccer
-ball hockey and the Underdogs slo-pitch team
-fish tanks
-cameras
-ideas and new thoughts
-stuffed kitty cats and blankies
-Disney-Pixar's Cars (Lightning McQueen) (listed by the parents, not the kids)
-the good stuff, like beer and nachos and people to share them with
-hikes and bike rides
-camping
-Grandparents
-blogs
-a lively church
-a camping trailer
-John Deere
-a new computer
-meals provided
-the right hospital
-sunflowers and wildflowers
-trees revealing their true colours

The list isn't done, but it's done for now. Blessed Thanksgiving. God is good.

 

-Spontaneous affection

It worked!

The treatment worked and Caleb's port is once again free flowing and the clot is no more. Thank you for your phone calls and prayers. We are happy that this has been resolved, and exhausted from yet another busy week. I can't believe it's only Wednesday. I look forward to being able to stay at home tomorrow. Again, thank you for your encouraging words and for praying.

Answer to prayers

Thank you for praying for Caleb! Today we went to clinic and learned more about Caleb's blood clot. They should be able to "fix" it by putting some clot busting drug (I think it's called TPA, but maybe it should be called CBD) in his port and leaving it to eat away at the clot until it is broken down completely. We will do this tomorrow. It takes an hour or so, and we're going to pray that it works after doing it once. If it doesn't work, they'll do it again.

Thank you for your prayers, and thank God for this answer. We had prayed it would be a simple solution, the least invasive possible. This sounds pretty good. Caleb's anxiety is still heightened--his heart rate is up, we know from today. Hopefully that improves with some more time.

For now we will sit at home and enjoy some chicken noodle soup (latest craving for the steroids diet). It's a real soup day.

News this morning

Caleb had an echocardiogram this morning, as part of the routine for his treatment. One of the things they look at is his port and the connection of his port line to his central vein. There they found a clot, which has been occasionally making it difficult for the nurses to draw blood from Caleb. The clot is concerning, and we were sent to talk with our doctors about it. Because I had the girls with me, and we were off to gymnastics, and we'll be in tomorrow for clinic, they allowed us to leave and postpone our meeting until tomorrow.

It's difficult because not only do we have a blood clot to worry about, this also heightens Caleb's anxiety again. He was quite worried about the echo (I bribed him with the promise of a forage wagon to pull behind his tractor), and then when we weren't doing just what I said we'd do, he started to get upset and worried. I fully understand why he would feel that way. We haven't had uncertainty for quite some time, and it's hard to go back there. Caleb doesn't know he has a clot, but he does know that something happened during his echo that made us have to go and change our plans. He's doing okay, and we'd never know that he had a clot because it's not visible and he has no pain.

Please pray that this problem is simply and easily fixed. Because we left, in favour of gymnastics and tractors (and Caleb's peace of mind), we don't know what is needed and what they'll plan. Please pray that it's nothing too invasive. I really don't want to go through a surgery for him again, it makes me nervous because his port surgery had complications and I'm afraid of that happening again. So thank you, friends, for your thoughts and prayers. We'll keep you posted as we learn more.

Let it shine

Caleb loves to sing and make music.

.

Last week I tried to capture his energy on video as he ran and sang at the top of his lungs, "Faster, faster!" he called as he sang out. Notice his running on the spot at the end of the clip; he was full of energy that day. Caleb is especially excited as this week we hope to begin violin lessons. Not going to school means there are other opportunities for him, and violin/piano lessons is one of those opportunities. We found the tiniest little violin for him, and currently we don't know what to do with it, but we look forward to learning what this is all about. I've listened to children practice violin, and I think I may need to use those earplugs we brought for hospital sleepovers, but the noise will be happy noise. At least it's not bag pipes.

It's been a hard week. We've been asked why there hasn't been a very recent blog posting, and that encourages us that people continue to care and pray for Caleb and our family. We have not had energy, after this week of steroids, to do much more than get ready for the next day. Caleb takes steroids, Dex, for the first 5 days of each round of treatment. The fifth day was today. Steroids can have lots of side effects, and this time, for the first time, Caleb experienced a lot of leg pain, exhaustion, and moodiness. Many tears this week. We tried to distract him by spending a day with Aunt Sara and Uncle Ralph and their family at a festival in St. Catharines, but even watching Uncle Ralph get dunked in a dunk tank was not enough to distract him. (He liked the soup, though) It was hard to watch him snap at his loving cousins, only wanting to be on his own or on Mom's lap. We were able to give him some Tylenol and even Ibuprofen (not recommended for those with low blood counts) to help alleviate the pain, and it worked, until it wore off. This morning I gave him his last dose (imagine how difficult it is to willingly give him the med that is causing such heartache and pain) and I look forward to a brighter day tomorrow.

Caleb's trying to smile in this picture, because I told him to. Can you see it?

This morning also had something new to deal with, learning of the death of a child that I know from clinic. The relationships that we make at the hospital are unusual, and we don't always get to know the name of the parent bringing the child. My name is most accurately "Caleb's Mom." I don't know the boy's family well, and I won't share the boy's name, but I had looked to this family and this boy as some inspiration for us. When Caleb was quite sick, I watched this little guy whiz around the hospital with his plasma car. He's my inspiration for Caleb's riding the trike to the hospital. I was caught by surprise that this little guy had passed away, and the pain and grief is unique and difficult. It's difficult to describe here just how this feels, but my pain for his parents is real. It doesn't feel rooted in fear for my own child, because each child, each family, is writing their own story. My grief is more of knowing how hard we, as parents, fight to do everything we can for our children, to raise them and make them strong and blast back the blasts, but it sometimes isn't enough. And there, there is pain too deep for words. I grieve for this family and pray for strength for a new day.