For everyone!
You might not even know that we are half way through steroid week for Mimi! This week could have been worse if we were stuck at home but since it is nice out I have ignored every household chore and enjoyed the weather and friends. Mimi has had a couple of meltdowns but we have been able to breathe through them. Yes breathing, she was in a 20 minute fit over something that set her off and I just kept calmly asking her to look me in the eyes, once she did we took some deep breaths. Once she was able to do that we talked through what set her off. It has worked every time so I am sticking to it! I tried it on the two year old tantrums and it was a NO GO, I have to find something else for that one...
So far other than some nausea in the mornings and getting tired late in the afternoon Mimi has been doing well. She takes her pills without issues, this week there is a lot of them. Good thing we have a calendar made by one of the nurses with all the meds and check boxes next to them. One of the pills Mimi takes daily has to be taken 2 hours after dinner so I have been staying up to wake her up and give it to her. I don't mind staying up I just feel bad waking her up from a deep sleep.
Maintenance cycle lasts 12 weeks (84 days) and it is repeated for two years from the start of Interim Maintenance. (I have to check when that was)
Vincristine - IV Push, Once every 4 weeks
Dexamethasone - Pill, twice a day for 5 days each month
Methotrexate - Pill, once a week
Mercaptopurine - Pill, every night 2 hours after eating.
Methotrexate - IT (through Spinal Tap) once every 12 weeks
Also Bactrim (antibiotic) on weekends.
Yay for maintenance!! Congrats and welcome to this side of things. It gets easier for the most part. Hugs to you all.
ReplyDeleteI hope LTM is easier for Mimi (and you)! We have discovered a couple tricks:
ReplyDelete1) Mollie has a ~3 hr sleep cycle so if we wake her up 2.5-3 hours after going to sleep (10:30 or 11 pm), she isn't in such a deep sleep and it is easier to get her to take the pills.
2) We got one of those pill boxes that has 14 slots (am and pm for each day) and fill it up for the whole week. Makes everything much smoother. We also keep a calendar (like your nurse filled out) and check off when we give the meds so there is no uncertainty.
Hope the rest of your week goes smoothly!