Highlight: Joseph was tested today for his neutrophils and they were almost ten times higher than last week! Well in the normal range.
Highlight: Joseph had a good day with his fasting and treatment today.
Today Joseph received chemotherapy again through a lumbar puncture. He is required to fast from 8:00 am till 2:00 pm when they do the procedure. This means a bit of an early morning so that he can be up and dressed and have a chance to eat his piece of toast (really the only thing allowed) by 8:00 am. Once again Joseph was much more interested in playing then eating, when normally he is very hungry in the morning. When it was time to go I told him we would be going to see his friends at the hospital and he immediately dropped his toys and waved to his brothers saying ” Byeee, Byeee”.
When I took Joseph to the outpatient pediatric hematology department and took off his cap, it was full of his red curly hair. He is now rapidly losing his hair, but because of its color and the fact that it is long and curly it is not looking nearly as thin as it really is. There is red curly hair in all manner of nooks and crannies in our home. We are preparing ourselves for a bald Joseph one day in the next few weeks.
Joseph was one of the first in to get his blood sample taken, afterward he was very focused on playing. While we were waiting the consultant came to find Joseph and was smiling. She said “looks like his neutrophils came in” and that was when she showed me the result that was almost ten times his last test result.
After all the paper work we went for our walk with the baby buggy but this time Joseph woke up about an hour before his treatment was scheduled. So we went to the outpatient surgical waiting area where he started playing and became very engaged.
Again, Joseph decided to catch up on some sleep while in the recovery. When I was called in he was looking very happy and rested. While he was sitting on my knee sipping some diluted orange juice another boy nearby on his fathers knee was saying “oh daddy my back is sore”. It really hit me how much grace Joseph has received. There he was happily sitting on my knee chatting away like he had just returned from vacation rather than a procedure under general anesthesia.
When we got home dinner was ready, and Joseph was ready for dinner. The last couple of days he has been eating well, but tonight he was setting new records. Then an hour after dinner he received his new oral chemo drug. This was a rather daunting procedure as it is cytotoxic – that means it “kills cells” – and has bright yellow warning signs on the box. I am required to wear rubber gloves when I give this to him to protect me, and it came with written procedures on what to do if it gets on your skin, splashes in your eyes or is spilled. Kate is not allowed to touch this as she is breast feeding Ezra. All of this leaves you with the impression that it is something you would not give to your toddler, however so far he is tolerating it well. It will be important that he and this drug get along as he will be taking it daily for the next 3 years.
Kate and I were commenting to each other that the one overriding feeling we have in the midst of this time is that of being overwhelmed – not by the circumstances but by God’s grace and kindness. So many have prayed for him and us, our local church has been so supportive, our extended family so sacrificial of their time, medical staff have been so kind and Joseph so brave and resilient. We could never have imagined how much peace and comfort we would find middle of the storm of