Hossibull

Tigger, Care-bear, and Dino demonstrate how un-scary it is to wear a mask to stay healthy

Caleb and I got to take a short walk yesterday, through deserted hallways and outside for about 5 minutes of fresh air. And then our IV line started beeping and I started getting worried and walked as fast as I could back to the safety of our ward! It was fun, but talk about stress. I trust I'll worry less as we get accustomed to new normal.

Nella told me today, "I like Timbits, and I not like the hossibull." Except that she does seem to like it here, when she visits. Nella and Aleah were able to come today with Grandma for quite a while. We had a good time visiting together and I was able to get some time away with just the girls. Neven family, we ended up in your backyard. Don't ask, but we had a nice time talking to your rabbits and feeding them lettuce from your garden.

Caleb ended up sleeping better last night after some codeine and Backyardigans. He woke me up to tell me to turn the TV off. Caleb is becoming a real super star here, taking his medecine well and having such a positive spirit. I am so amazed.

I am getting a real crash course in Caleb's medecine, it's side effects, and how to give it. Don't worry, I'm not responsible for any IV lines or needles. Yikes! Caleb has several medecines that he needs to take by mouth. I was overwhelmed yesterday by how much, and I was exhausted by the end of the day. Will I really have to do this every day?? It was a fight for each one. But, today was better. I'm learning how to get it in so that he doesn't have to taste it as much, and I'm hopeful that I'll learn more as days pass.

Caleb had his IV line changed today because it's been a week since he had his portacath insertion. I learned that this can actually be an uncomfortable experience. I guess I had been hoping that it would be painless. Silly me. Kaitlin from Child Life (she works with Maria, the one who you've seen in the picture teaching/playing with Caleb and Nella) came and walked Caleb through everything that they'd do, and that helped. Caleb handled in very well, his nurse was impressed with him. That's my Caleb. I wish that being agreeable and willing would mean that the leukemia would listen to the drugs better. Maybe we can pray that way?

When Caleb had his line change, there was about 20 minutes that he had no line at all. He was just a free little boy! The nurse said, "I assumed you'd want to get out? I'll change his bedding while you're gone." I was momentarily caught off guard by the freedom offered to us! Quickly we put on masks (because of Caleb's immune system) and went down the hall to get a tricycle. Caleb rode the trike up and down the hall with Grandma while Nella and Aleah ran along. That was a true pleasure. He rode the bike all the way back into his room. I was so happy. He was too. We got the trike back into our room tonight so he could ride around the room. Not a lot of room in here, but enough for some entertainment and joint exercise. We also got a soccer ball in here and practiced kicking. If I need to explain it to anyone, I can say it's physiotherapy. Caleb's right knee is giving him pain, so I'm justified. And it's fun.

I think we're doing well. I know we haven't been in touch with many of you, and that is because we are really learning a lot about what things will be like for us in the coming months. It's a lot to take in, but I feel like it's coming a bit at a time and we're handling it. We've made the choice to embrace JOY in what comes to us. I've talked with some about the pain that we feel of not having my mom around when we spend just so much time at the hospital now. We can spend time in that pain, but too much time there and we'd miss the blessings that we enjoy despite the reality that my mom is not here. One blessing is Martine. We have a good friend who works in the PACU here, she worked with mom years ago. We (Sara and I) have run into her at so many different significant moments in the lives of our children, and this is an encouragement and a reminder for us. Martine even happened to be in the doctor's office waiting room last Monday morning when all of our roller coaster ride really started. Small things like this are reminders that we are so not alone. There are more small and real blessings like this that I could share, and I look forward to sharing them as they come up. For now, moment by moment, we choose joy and trust in the care of our Father and the gifts that he has given to us.

I still cannot thank you all enough and continue to ask for your prayers and support. We have been receiving meals, and this is such peace of mind. We are receiving offers of support from people that we don't even know. If you are wondering what you can "do" for us and feeling stuck, please consider giving blood. Caleb has already received 6 transfusions, 3 of blood, 3 of platelets. From what I understand, this represents 6 different donations of blood/platelets. He will need more over the next two years. Please consider giving blood. Even if your blood type is not the same as his, there are many children here in this hospital, and many others, who may have your same type and they could use it too. Thanks for considering it, and I'd love to know about it if you do!

Thank you everyone.

J

Here are the empy syringes of various medecines at supper time last night. He had two more during the night. These medecines are intended to counter-act the effects of chemo drugs. They will help to prevent constipation, mouth sores, acid reflux, joint pain, among other things. I've said it before, but the research and study that has gone into beating leukemia is amazing.