Sunday we were able to go to church. What was even more wonderful was that dad came and was able to go with us. I love when we are able to be together as a family. After church Scott grilled some pork chops for our “break the diet day.” It was a beautiful day, but after he came in from grilling the pork chops the door had barely closed behind him before a huge downpour of rain started.
Monday was a day off from going to the hospital. No labs, no appointments, no therapy. What do you do with free time like that!?! We made little videos and movies and grandpa came to visit for the day. Tuesday was back to appointments at the hospital. Tuesday is one of the kids favorite days. It is the day the therapy dogs come and hang out in the lobby. Nothing seems to cheer up little kids like the sight if huge fluffy dogs lounging around the hospital. I’ve watched sick kids climb out of wheelchairs and come to pet and brush the dogs. And little kids who cant speak suddenly dont need to fight to be understood when the dogs are there. The animals don’t need words to communicate. St. Jude is a place of wonders, so many great things happen here. Here is a place where childhood does not cease to exist when you are diagnosed with cancer. It simply becomes part of a much bigger part of the world. Today, sitting in D clinic, I listened as two little girls discussed chemo treatments with one another while they colored pictures. Big medical words, hard concepts…. They are just part of their everyday life.
But, anyway, Tuesday is also a favorite day because of Music Time With Miss Amy. Every Tuesday she wheels a huge cart down to the lobby. It’s filled with huge drums, bells….. Everything in the world that makes excessive noise. It’s deafening really. She sits on the ground with her little guitar and strums and sings nicely while the kids pound out random rhythms. It sounds like war drums on the peak of battle.
The kids love it.
The adults all walk by with huge smiles and their ears plugged. But there is no doubt no one could complain because if you listen closely over the sound of the drums you can hear laughter. And that is precious.
Brianna did such a nice job describing the last few days I will just fill you in on today. Wednesday went really well. We started with a lab check, obviously requiring a needle stick, but that is nothing to Scott anymore. Then an hour at the St Jude school. Scott has an assigned teacher there who helps him out. The other M’s just find a spot and work on a little math or something. I usually catch up with another mom or two on how their families are doing. I always did receive poor marks in citizenship, under talks at appropriate times.
Next we were off to the clinic to meet with Scott’s Oncologists. They have grown use to Scott’s tricks and enter the room with caution, not knowing what might be awaiting them. Scott had nothing exciting for them this week. I wonder if he is letting them build a false sense of security. I am always a little cautious myself. I am sure one day the Docs will enter with their own squirt guns, and then we might all get what is coming to us.
Scott wasnt in a great mood when he got his labs. Neutropenia already and platelets too low. I saw him melt before my eyes with that news. I guess the last platelet infusion was still fresh in his memory. But he bucked up, and did what he had to do. Gratefully, the platelet infusion was no problem, they pre-medicated him with Benadryl and there was no noticeable reaction. Scott is now sleeping off the drugged stupor. Benadryl just does a number on him.
The neutropenia will just take time. He will have to wear masks for awhile, and no crowds. Also a few changes in diet until his numbers come back up. All food must be freshly cooked. Nothing fresh that can’t be peeled. Scott has tried to persuade me that grapes and strawberries can be peeled. Nice try! No pepper, I guess pepper has bacteria that can be a problem if you don’t have an immune system. So the agenda this week is to hold steady for a week or so with no illness and no fever! Quiet week ahead. OT tomorrow, Scott is improving. Labs again on Sunday, and HOPEFULLY very little until Wednesday clinic visit. This is about the time we would start thinking about going home. Sadly I think we are going to have to stick it out here in Memphis. I am not too excited about dealing with platelet reactions anywhere other than St Jude. So I need his numbers to be back up, and we know from that last chemo that might be awhile. When Scott heard this today he melted even further. Going home is pretty much what he lives for. It appears it will be early March before we get another shot at it. We will try to think of some fun stuff to do to keep him busy. But that is challenging with the no crowds thing. Maybe back to film making and claymation?
Thanks for your prayers. We have been very blessed. St Jude is an amazing place! I know The Lord has and will continue to watch over us. Families can be forever, there is no cancer strong enough to break the covenants we have made with The Lord . The Savior Jesus Christ has walked with us and continues to carry much of our load. We are stronger because of what we have experienced.
- Scott and Brianna’s “Wax Films”
- Good To Be Alive