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| TRYING out his new pillow for the upcoming sleepover! |
After a whole lot of discussion and weighing the pros and cons we will have chemo in Charlotte @ Levine's-- And basically I need to let go and adapt to the mode "When in Rome"... because it is NOT going to be like NYC but that does not mean anything horrible either.... With the chemo Grier will receive he will need lots of hydration before he can start.... to prevent bleeding in his bladder... so we will go to LCH late Sunday night, get accessed... and start hydration through the night. Hopefully, chemo will be ready from pharmacy on Monday morning... He will get three different types, cytoxin ( which will be given over 6 hours.. Topetecan, and Vincristine-) the plan is to be able to leave Tuesday sometime... and finish the topetecan in the clinic on Wednesday and Thursday. That plan is the perfect version... I know things can happen... and we are not infusing him with sugar water... it is HIGH DOSE CHEMO... so if something happens and we end up staying longer so be it... at this point I don't care.... I just want the chemo to make the NB retreat and give us some more options --
so... how did we get here??? Last Friday was a bit "old hat"--- I almost thought we were in the clear... I was reading the HIGH DOSE 3F8 protocol that we were on the schedule for on April 4th... getting ready to talk to the doctor about any questions I might have for upcoming 3F8.... and he pulled up the MIBG scan on the screen in front of me.... he was very quiet... as I was pretending to read the protocol... I was watching him and listening to the "hmmms" he was silently making. Then he started to ask me questions about what treatment we have been on since the last time we were there ONLY 8 weeks ago. At that point, I had that bad feeling -- and it proved to be true as he said... I am not a radiologist but I think we need to wait on 3F8 right now... until a final report comes back. yes, I was caught totally off guard... and I do question "where is that motherly instinct?" really... I thought he was feeling great.... and he was but obvously something was brewing inside him... I know some people just found out on Wednesday... but I have been thinking about this and talking to many people since last Friday.... the decision to stay here is "right" at the moment... We have been traveling for almost four years... it is hard... actually just being in the hospital is hard... but being divided as a family makes it harder. We will have to travel again for things that we can not get in Charlotte... and bottom line is chemo is chemo no matter where you are....
Today has been busy -- 2 doctor visits... I finally made the time to take Grace for her check-up... Well check... whatever you want to call it-- I just have not had a moment to schedule it... and it was on my calendar and I was not going to cancel.... All went well at the office... I love our pediatricians-- they keep up with the blog so I didn't have to go into all that has been going on-- Today was just about Grace and that is what I wanted it to be! The second appointment was to the
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