Sunday, October 13, 2013

another 3 months.

we're almost at another 3 months. another MRI. more sleepless nights worrying about "what if" scenarios. bad dreams. so that is coming on wednesday morning.

we don't have an appt after so i guess we just... go home. which blows. in my head i have 4 scenarios.

1. call quick bc its an easy call of "looks good!!"
2. call quick bc its something horrible.
3. call late bc its an easy call to do at end of day.
4. call late bc they had to talk to 3 other drs about something horrible.

so. i cant even guess. lol

in any event, reese feels good. ornery as ever. funnier by the day. choosing to use her bad hand, regularly.

i need this MRI to be awesome. obviously bc i want reese to not have a tumor in her head. that goes without saying. but now its been a year (almost) since diagnosis. 1 year. we won't have another MRI til january so this scan takes us through the holidays.... through halloween costumes and events, through thanksgiving NOT at the hospital, through having our 5th baby, through xmas and the new year...

and every scan is just one step closer to being done, eventually. and i want to be able to cheer when chemo is coming to an end. not dread it.

so i guess all of this is to say - prayers please :) i know we have some amazing warriors out there. and i appreciate every single person.

on some high notes - this past wkend, we had the privilege of going to great wolf lodge with Carson's Crusaders. aidan, sawyer, and reese went and whoa, did they have fun!! it was such a blessing and a treat to hang out with other parents/siblings of patients and see them all have a good time.

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it was so well done and fun and... i am glad we had the opportunity to share this wkend with such amazing people. thank you CCF for such a wonderful time.

this past week, we also had chemo - although things went a bit, erm, differently. as i was packing the kids up for where they'd be sleeping on tuesday night, for extra currics, etc... i got a call. when i see 214-456-xxxx that means hospital and i KNEW that meant there wouldnt be a bed for us to stay overnight like we normally would. but it was worse than that - they didnt know WHEN we'd get a bed. ugh. its incredibly sad and overwhelming to think that so many children needed to be in the hospital for chemo last week that some kids couldnt stay like normal. but lucky for us, they had a plan.

they told us to come in tues for labs/dr appt (we see the onc to chat, etc "officially" once a month. we see him more than that, but thats our official time). then wednesday, i took reese in early and we went to the day hospital/infusion area. we did her chemo and THEN they sent us *home*... where we finished fluids. she has a fluids/mesna mix that she has for 12 hours after chemo (mesna clears out the bladder so chemo doesnt ruin it) - and we were able to stay accessed, have home health get us a pump/meds, and we were on our way!

part of it was nice... being at home and not at the hospital is, overall, glorious. doing laundry all night bc chemo makes for a pukey time is not ;)

i had a bit of ::twitch:: when leaving bc they mixed her mesna in .45 saline and not .675 saline (i wanted more sodium in it), but after the onc calling me and talking me down (lol), he was right, it all went fine. we are, basically, treating her as if DI is a thing of the past - which it has been. we havent done DDAVP since march? and really havent had problems. i dont know what that means besides "what a miracle", but ill take it.

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i have wanted to write a blog all week, but kept putting it off bc i didnt know how to talk about one thing.... phoebe. that sweet girl became an angel on oct 5th at 10:30pm. i woke up on the 6th, looked on facebook and burst into tears, sitting in my bed... how unfair. 
but phoebe changed tens of thousands of lives. she taught people how to smile in the darkest of days. amey and nathan taught everyone around them about what true faith is. none of what im saying takes the pain away. none of that brings a baby back to her family. :( but i am asking you all to remember the Fair family in your prayers from now on. they have 3 other children that miss their sister. 
so with that, you have a few prayers to say ;) and i just want to say that after a year... i still appreciate and love every single letter, postcard (omg wait til you see the book when i am done), treat, and prayer. there is not a day that goes by that i don't realize how blessed i am. 

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