FUNNEST Day at the Clinic

Jacob has not had any chemotherapy for 3 weeks (no Vincristine for 4 weeks). His counts are back around where a "normal" kid would be. He still has lingering Vincristine effects. This drug - even at low dose - seems to be rather harsh on him. Sometimes he would get nauseas the following day (that's not common). Perhaps it's because he metabolizes it more slowly and it stays in his system longer. So we set out to discuss his drooping eyelids, double vision, and peripheral neuropathy (muscle weakness in his hands). Over the last 4 weeks his eyelids have slightly improved, but his hands have progressed rapidly. It's all supposed to be temporary. But nerves repair themselves VERY slowly.

According to the protocol he was due for his VA cycle of chemo. I misunderstood and thought that it started on week 14, instead of week 13. So we scheduled a trip to Sea World (thanks to our Social Worker who was able to get us the tickets). We wanted to do something normal, fun, exciting, and outside. Our whole family has been thirsting for a day that just felt fun. I have been relieved all month that Jacob's break would land around Halloween so he could be a pirate and go trick-or-treating - quick before he's too grown up for that.

I was filled with such anxiety when I spoke to Dr. Mathias on the phone Monday and realized that she on giving him chemo today. She was hesitant to postpone (me too a bit). But if we are going to treat the whole child - I'm telling you - this is going to be a great weekend for treating depression, sadness, and overload. The dose that he will now get next week will likely make him nauseas and fatigued. I hope it doesn't, but we will be able to cozy up at home and remember our great trip to Sea World.

Jacob has been aware that we were returning to the clinic. He knew that the days of skipping the port access were winding down. He has mentioned it a couple of times in our family prayers. It's so sweet. "Please help me not to be so scared when they access my port." I'm so proud of him for admitting his fear and for turning to the Lord. I'm also so sad that such a young child full of innocence has to utter such a phrase.

Today Jacob climbed in the car with few stall tactics - there were no tears. Some renewed courage. He asked me to sit in the back seat with him while Jon chauffeured. He was fully expecting to have his port accessed today. We didn't tell him until we met with the doctor and were certain that we could put it off until next week.

Dr. Matthias was sensitive to our concerns. She spent her time talking with us, looking Jacob over. The first thing she said to him when she walked in was, "I heard you are going to Sea World?!" Jacob's eyes were the brightest they've been in weeks.

We will continue chemo next week. Dr. Matthias is going to reduce the Vincristine dose. We are going to be taking Jacob to see a occupational therapist to help with Jacob's hands. And we will see an optometrist to check Jacob's retina - she suspects it is just the muscles around the eye, but we'll check vision too. As we discussed over a month ago, we are seeking out a counselor to help Jake find some healthier ways to express his grief, anger, fear, and anxiety about this experience. So sounds like lots of appointments coming up.

Jacob's nurse came in the exam room with a bag of Halloween treats. He returned the tray with the blood draw needles and tubes when he found out that Jacob is off the hook. He invited Jacob to the back to pick out a costume that somebody had donated. Jacob chose some wrestler costume with muscle pads. That's the happiest I've seen that kid in the clinic. Truth be told - there was a spring in my step too.