It has been seven and a half months since Titus’ diagnosis. It seems like it was just yesterday some days, and others like it’s been forever. November the second he will begin “Long-term Maintenance” (LTM). Because he is in a clinical trial I am not sure yet what his protocol will be for treatment. I do know that he will receive lumbar punctures (with intrathecal methotrexate) every three months and will have oral methotrexate once a week at home, as well as oral 6-MP every day (yes…every day for the next 2-3 years). However, the chemo infusion of vincristine with which he also will have oral steroids for five days after is up in the air. On the clinical trial he will be randomly placed to either have vincristine and steroids once every 4 weeks, or once every 12 weeks. The goal of the trial is to determine if the decreased amount of vincristine will function the same but with obviously less side effects (it causes neuropathy, foot drop, and leg weakness to mention a few). I am praying that Titus will be placed in the group that is best for him.
The idea of beginning long-term maintenance is liberating, not having to go to clinic every week seems wonderful…but then I think, his counts will only be checked monthly now…that scares me. The oral chemo he will be on at home will need to be monitored and the dose regulated to make sure his ANC stays at a consistant level, not too low, not too high to ensure the 6-MP is working properly. This may take awhile to regulate the dose, we shall see, praying that his ANC will not bottom out because of a too high dose. Praying for a lot of things right now…
His hair is growing back, he’s got the cutest fuzz on it now. He has done great during this last phase of treatment. He has his last treatment on Wednesday (the 17th) before starting LTM and his chemo gets increased again, hoping we can make it another treatment without bad side effects.
I am in awe of my son and his bravery through all that he has been through. We were talking today about how the doctors put his port in his chest. You can feel it, along with the catheter along his collarbone, and he was touching it asking how they got it there. He is a little boy who has to know what is going on. I think it helps him cope with the situation if he knows. He has to watch when they access his port for example and is very particular these days at clinic. He has to eat a tic tac when the nurse saline flushes his port because it tastes icky, and he also likes the tubing taped up so it doesn’t hang out from under his shirt. He is very good at reminding his nurses, I love how he has taken control of these little things. He is growing up in front of my eyes, 5 months and he will be 5 years old, I am not ready! He is also very particular at home especially at bedtime. He asks me every night if I remember what he wants me to do, how could I forget! “Mommy, tuck me in, turn off my light, close my closet door, leave my bedroom door open just a little”…I hope he doesn’t forget what he wants me to do for a long time. <3 my little man.
