Maintenance is not what we expected. This roid run has been hell so far and we are only on day 3
of 7. The chemo and the steroid
mixture has completely changed our little cherub into a little devil. She’s angry, impatient, clingy, crabby
and worst of all, in pain. This is
a different experience than any we have had so far with med mixtures. Instead of celebrating maintenance, we
are filled with dread and fear for our suddenly very sick child. This pit in my stomach will not go
away. She has handled treatment so
well until now. We knew the muscle
pain would come with the steroids but it wasn’t supposed to come on day 2! The roids that used to make her eat
like crazy now makes her nauseas, add that to the headaches and pain and I want
to scream. Every smell disgusts
her so she will barely eat. It has
been a very hard 2 days and we still have 5 to go.
I haven’t felt the need to blog daily because I can usually handle
everything but tonight, I’m at my limit.
I wish I could take her off treatment but unfortunately, if we stop, the
cancer wins and that is NOT an option. 2 more years and 2
weeks left, please pray it gets better! Cancer sucks!
We chatted a bit after Kennedy was put on 0932, which is what treatment Jenna is on. I just wanted to chime in with our LTM experience so far. Jenna seems to do alright with steroids, but the VCR really knocks her down. I can tell it messes with her smell/taste, it also makes her more tired, grumpy, and gives her migraines. We try to stay ahead of the pain by giving her a pain killer during steroid week and benadryl to help her sleep at night. Unfortunatelty each round has been a bit worse. The second half of the week and the first part of the next week really stink. BUT, the next 15 weeks are great. She does still seem to have food issues (each round there have been different thing she doesn't like - this time cheese tops the list), but otherwise it hasn't been bad at all. Personally I prefer a bad week or two every four months than every month like the other treatment plans. Keep hanging in there this week. I will be thinking about you and K. Julie
ReplyDeleteThank you for this, it helps to know what to expect. I think I can handle a bad week for every 15 good ones. The steroid pulses do seem to get worse though...ARGH!
DeleteThinking of you every day- and praying that you can muscle through these ROID days wih your sanity in tact.
ReplyDeleteThinking and praying for you guys...
ReplyDeleteThinking and praying for you guys...
ReplyDeleteHi Edan,
ReplyDeleteIf you ever need to talk or yell or scream to someone I'm more than willing to listen. I won't judge, I won't say I told you so, I won't give advice and at my age I probably won't remember and since I can listen I might be a resource! Call anytime. 847-336-5515 . I'll pray for you too and believe everything will get better. And I agree Cancer sucks!
Thank you all for commenting, I didn't even realize I could respond before!!!
ReplyDelete