Today’s events we very uneventful, yet very emotional.
Our day began about 7:30 with his dose of Zofran. Thankfully it is now infused via his IV. One less oral med, for now. He then had to take the rest of his meds, with the Dilantin needing to be onboard before his first Chemo at 8:00. I had to wake him up from a deep sleep, yet it was far easier than I expected. We needed a little cajoaling to get this morning meds taken. At promply 8:00am, his first Chemo started, Busulfan. It’s infulsed four times a day, every 6 hours and levels are checked at the 8:00am infusion, for four days. For a total of 16 doses, with levels checked at dose 1, dose 5, dose 9 and dose 13. The Busulfan is infused over a two hour period and for the level check doses, blood is drawn at the end of the two hours, every 15 minutes for an hour and then every hour, until the next dose. The purpose of this is that this is a Targeted Chemo. They check the levels in his blood stream and adjust the dosage either up or down. Making sure that he is receiving a theraputic level, not too much and not too little. AKA: Just right. He is receiving Zofran very regularly, it feels like every 6 hours, before every Busulfan dose. He gets the dilantin every 12 hours. The major side effect of Busulfan is seizures. Hence the dilantin. The team keeps telling me that each of them has not had an experience with seizures and Buslufan, since they started loading and dosing with Dilantin. Thankfully this is not a Chemo that needs to be fluid flushed. That comes later. When that Busulfan went in the pump and was attached to his lines, I lost it. Thankfully Gregory was paying too much attention and I just sat there and silently bawled while watching it infuse. It’s so conflicting. He is being pumped with lethal poisons to save his life. *shiver*
He had no remarkable, immediate reaction to the Busulfan. He did start to get itchy around the eyes and scalp. Not too terribly, just in an annoying way. Yet, I’m also wondering if it was sleep deprevation related. He is having to learn to get his sleep, when he can get it. 12 hour stretches are kinda out of the question, for now.
Like I mentioned before, we really do have a large room. Physical Therapy brought in a floor matt for him to play on. Thankfully! I was seriously contemplating putting my blanket on the floor. I’ve been trying to reaarange the room so that he has a play area and his toys are kept together and organized. I’ve been a little obsessed with making sure that his play time has a purpose and some kind of lesson. Yes, he does have free, do whatever he wants time, but he always chooses stuff that falls into a learning catagory. I am trying to keep him ahead of the game, in case he experiences a delay I want him to be able to snap back, quickly. Occupational Therapy also visited today. They will help me to maintain his fine motor and different kinds of movement. Thank god for Montessori. I totally see the value of physical and occupation therapy as it relates to learning and development.
He crashed pretty hard around 2:30 and slept for a solid 3ish hours. I also napped for an hour with him!!! I love to nap. He had Busulfan doses at 2:00pm, 8:00pm and is now being infulsed with his 2:00am dose. Beds get changed daily and patients are bathed daily. We were planning on bathing at 5:00 but missed our oppourtunity, since he was asleep. He started his Busulfan at 8:00 and since it is a two hour infusion, he had his shower at 10:15, tonight. He insisted on riding his tricycle to the bathtub room and then decided he wanted to ride it afterward. So stinkin’ cute!!! It looked like he was wearing a toga. Granted, loosely wrapped.
He had a lot of fun, today. Mom has been here since Sunday and goes home tomorrow. Dad will probably be by this weekend and then mom will be back for tranplant, next week. I can’t tell you how nice it is to have the Ron Don house. It is so close to the hospital and is a little Oasis for any of us that need to use it. I am continuing to use the Ronald McDonald house as our address. I really don’t want to mess with trying to receive mail at the hospital and it’s not like I have to drive across town to get it.
The next three days will be repeats of today. I’m sure there will be interesting stops along the way, too. I’m learning to navigate my way around a new hospital and learn the rythm. Even though we don’t have a Thomas Hammer here, Tully’s is a good substitute. The cafeteria is different. While it doesn’t have as much to offer, there is usually something intersting and yummy, stuff that you wouldn’t find in Sacred Heart’s cafeteria. I’m also trying to figure out how to economically feed myself. I don’t need much, if I’m smart, but all the families share refridgerator space. I think I will end up shopping for things, bringing some over and storing some at Ron Don.
My Notes to you, tonight:
Heavy on my heart are all the families I have met, through this Odyssey. Those of you that are traveling your own Odyssey and experienceing some pretty radical stuff. My heart goes out to you all and is filled with love and hope.