It has been a very long couple of weeks and we are all very tired - most of all Michael. Jeff worked quite a bit of overtime the last couple of weeks. And, when he was home with Michael, I stayed at work to get some things done (it's that time of year for us accountants). Michael has been lethargic and has had very little appetite. Quite often, he just lays on his bed or in his chair and he isn't even interested in having the TV on. We've spent a lot of time sitting in his new chair reading books the last couple of weeks. Amazingly, his spirits are good though. We thought he might become cranky and whiny but he hasn't. He is just quiet. And we wish we could get him to eat a little bit more as he has lost 2 pounds.
We went to Syracuse Friday for Michael's treatment as usual. We can always tell went it is treatment day - that is the day we get up and it is snowing. It has either been snowing or blowing during every trip we have made to Rochester and Syracuse since November and it is starting to wear on our nerves.
Michael is right at home at the hospital now. He knows his way from the parking garage to unit 5C where his treatments are. He even knows which buttons to push on the elevators. When we enter the unit, he goes right over and opens the toy cupboards to get out the toys he likes. They have a Playmobil toy hospital set that he likes to play with. Or sometimes he builds something with the Lincoln Logs. The other thing he likes is a Hotwheels race track and toy cars.
Then when they call his name, he follows the nurse without even waiting for us. He tells her his date of birth (how they identify patients), takes off his shoes and gets on the scales. Then he stands with his back to the wall so she can measure him. Next, he climbs into the chair and pushes up his sleeve so she can take his blood pressure. As soon as the cuff deflates, he takes it off. He very openly tells the doctors and nurses anything that is bothering him each week. Like this week, he had a small scratch on his scalp and he made sure the nurse saw it. If he knew how to drive the car, he wouldn't need Jeff & I there at all!
Then we go to an exam room to see Dr. Kennedy. They were running behind this week, so the nurse said she would get the stuff to access Michael's port while we were waiting. As soon as she left, Michael unbuttoned his shirt, removed the bandage covering the numbing cream on his port and wiped it clean. We joked with Dr. Kennedy that Michael was starting without her and she laughed and said he did a great job. She also asked him to sing her the "Hot Chocolate" song he was singing the week before (which of course he did).
Dr. Kennedy talked about the treatment plan again. Starting this week, Michael goes back to receiving both chemo medicines, Carboplatin and Vincristine. That is what will happen for the next 4 weeks and then he will have a 2 week break. At that time, he will have his next MRI. Hopefully, it will show that this treatment plan is working (no tumor growth). If not, we may have to decide if we need to try something else. The problem is the other 2 options are the chemo that can cause secondary cancers and radiation. Both of those options are as scary as the disease they are meant to cure and scare the daylights out of us.
I guess that is why I didn't post until now. (Actually I logged on a couple of times but couldn't collect my thoughts enough to type). Jeff & I have spent the last couple of days trying come to terms with the fact that the future is still so uncertain for all of us. We have been so busy the last month and a half going through the treatment routines that we hadn't really thought much past each upcoming Friday. Now we realize the next MRI will be here before we know it and we are just praying for good news.
After the next MRI, Michael will go through 8 rounds of 4 weeks of treatments with 2 weeks off (about 46 weeks). The first 3 weeks, he will receive both drugs and the fourth week he won't get the Vincristine. Dr. Kennedy said the Vincristine toxicity can build much faster than the Carbo which is why he will only receive it for 3 of the 4 treatments. And, Michael is already experiencing the effects of the Vincristine. He didn't have any reflexes on either side this week.
Also, Jeff & I thought it looked like Michael's hair was getting thinner but we weren't sure. We expected to see clumps of hair falling out and we didn't. (Sometimes in the oncology unit, you will see clumps of hair on the floor and it just breaks your heart.) We asked Dr. Kennedy what she thought and she said it is definitely thinning. But, she referred to a little girl that was in the unit that day and was at the end of her year of treatments. She said the little girl's hair had started thinning in the beginning but then her body adjusted and she never lost anymore of it. Let's hope that is what happens with Michael! I am not sure how he will take it if he realizes he is losing his hair.
Michael's Uncle Jeff and Aunt Dee (our friends and neighbors) gave Michael a St. Nicholas medal this week. St. Nicholas is the patron saint of children. He likes wearing the medal because we told him that it was to protect him and he likes that.
As we were leaving the unit this week, Michael saw the nurse that usually takes care of him in the treatment room. He asked if he could talk to her and I said sure. He went to the window and waved to her and she came right out to see him (and his socks). He told her that he had gotten his medicine and we were on our way home but that he would see her next week. Like I said at the start of this post, it is amazing how comfortable Michael is with all that is going on. Please keep him in your thought and prayers, JoAnne