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.