Thursday, December 18, 2014

the same normal.

i feel good.


we had our appointment today to talk about what we are doing next. 


so we need a few things to start. one of them is a new port. 

i know. that part sucks, but its a necessary evil. 

before that, we need a rapid MRI (ish) to check where they should put the port (because this is her third. if you remember, she had that one that really didnt work and we replaced it spring 2013). and then we'll have port placement surgery.

chemo will be weekly, for a year. its a quick push so its access, blood, chemo, flush, and lock. i might be missing a step. its been a few months... 

a few questions, answered: she will likely not lose her hair, her ANC shouldn't really drop ( I could totally have that wrong, but i guess i'll know soon haha ***eta: ok there's a possibility for ANC drop. we will know the first 6w how her body reacts.), she should feel pretty good and stay on her school schedule. there's no inpatient stay for chemo, there's no fluids to mess w sodiums. its a lot like vincristine was given. no, she does not need surgery to remove more, as it stands. no, we are not doing radiation right now. yes, it is an option later down the road if needed after this or other chemo protocols. 

we saw the MRI from september and then from monday. you can eyeball the growth, but its not a lot. is it moving in the wrong direction, yes. so we have to change that. they did say that if it was just left, it would likely be months before we even saw new symptoms of it. of course we aren't leaving it be - but that is interesting to note, imo. 

i saw the first MRI today, too. i think the only time that i have viewed that scan was when we sat down with the neurosurgeon day 2. the second day of our entire journey. its so big and just goes from the optic pathway and then through the side by the hypothalamus, but now it seems all thats left is the piece in between where we had both surgeries. i think it was important to see all of those scans to get grounded - to see how far we have come and to see what we are dealing with. 

our wonderful oncologist gave us lots of whispers of hope and words of confidence. we are very lucky to have the amazing doctors  that we do. 

i mentioned to the girls today about reese's new port. reese shrugged and said "yep. i need a new one!" and aidan and sawyer were just interested in coming to chemo w us at some point. there were a lot of comments on the girls being upset, but i think the difference is that this is just what they know. chemo, the port, hospital stays... it's all part of fixing reese. and so they seem to be totally okay with that. reese doesn't quite understand, but so far so good. taking her in every week will become dramatic, i imagine, as she is old enough to grasp "what we do every tuesday..." or whatever day. but until then, we'll take it step by step. 

a bump in the road that leads us to the end. our new end seems to be in 2016. 

please do not hesitate to ask me any q's you may have. 

the prayers for guidance and peace have been felt deep into my heart and soul over the past few days. and thank you to everyone who has purchased their reesey shirts!! 

it is amazing how different this was. we went to the hospital today saying hi to friends. everyone couldnt get over reese's hair and how she was walking by herself. i wasn't nervous to hear what the onc said because i know him. we trust him. all of these doctors saved reese several times before - so now is no different. 

2 years ago today, i was watching reese eat dinner after having her 2nd debulk surgery that morning.

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and then this week, she goes to christmas parties (miller's) and makes me crazy with her sisters around the house. :) 

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i will take it. i will take every single second.

we are still in the same normal, though. for now.

3 comments:

  1. Prayers and more prayers coming your way!

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  2. As much as you have dread hearing those words, it's awesome that you are jumping right in to do what needs to be done. It's like a small blip on the radar and you've been around the block once so you know what needs to be done. Changed my prayers from clean scan to, okay now take care of Reese. May He walk with her and hold her hand through all of this.

    Diana

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  3. What an amazing gift from God you are to Reese. I'm praying for your family!

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