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.

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.


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. 

always something.

that doesn't mean bad, necessarily, but really - there's always something.

this week was a combo of a few things. (p.s. these are all IG pics - punkfictionv4)

bottom line - we did too much. i got away with myself this wkend. hearing the horrible news about phoebe on friday night sent me into a "live in the moment" spiral. nothing big, but just... fun things. and while i do agree thats how you should live your life, sometimes i forget... i even took her to PT and OT on monday. thats how sure i was about counts. ha.

reese had really good counts last week at labs so i thought her counts would drop at the end of this week and we'd be at home, anyway, but they dropped a bit early and reese ended up with a tiny fever on monday night. 99-100 while here at the house so I called. last week reese puked once and had bad poops. the week before that miller had HORRIBLE poops - i blamed teething. but then off and on reese had diarrhea and so then with a tiny fever, we went in (actual fever "limit" is 100.4). rocephin and zosyn to the rescue. her counts were low so they admitted her -- to a random overflow floor -- and then we realized there must be something "going around"... too many onc kids there if we were on the gastro floor? and not even on a regular hemoc overflow floor? who knows... but either way. that was that.

i got there tuesday and was just ::twitch:: for most of the time. it should be easy breezy in and out, watch some movies, hang out, whatever, but with reeese [sort of] having DI, we have to be careful of sodiums. she got 2 boluses of 9% saline in the ER bc she had a really high HR bc of some dehydration - and then her sodiums got a bit high.

now i am pretty good with reese's DI. but a new resident (yeah, its july), staff i didnt know (and didnt know reese), and a very, erm, strict, endo on call made for a stressful tuesday night. they had already switched her saline to 6.75% and then to 4.5% - and still sodiums at about 151 (reese rests good anywhere in the mid 140's) so i wasnt that worried. neither was the nurse. but, sigh, resident and endo were sort of nuts about it.

i went to the wonderful day nurse towards the end of the shift and burst into tears. all i wanted was for reese to regulate herself - when you put liquid in to a kid with sodium, sometimes the sodiums will rise (sometimes not, so you cant be too sure), but either way, i knew she could lower it by drinking free water on her own. her HR was down so there was no need, imo, for more fluids. the nurse round of the troops and got me fixed up. it just so happened the night nurse is also a hemoc nurse so that was awesome :) reese was able to regulate herself BEAUTIFULLY and even that same endo came in the next day to tell me "you were right. like always..."

thank you.
:)

we got home late evening on wednesday after a long day of reese needing some blood before we left. and now all is good :) counts up and onward we go.

all that to say - who knows if miller gave her the poops or if she caught a small bug, but this wkend really put a smile on my face. reese has really been putting weight onto the weak leg and actually getting into kneeling and crawling positions - its awesome. just one day she did it. the pics prove it!

she didnt really want to go into the pool before, but now she is obsessed. we practice swimming with her bad hand and i have her kick both legs - so the PT aspect is awesome.

playing around town.
#sistersarethebestmedicine (we like to facetime, too)
 

today i had to be at children's at 5:45am (dont worry. i was late lol - so really 6am) for a 7:30am sedated hearing test. all went well but i am EXHAUSTED from the week. bottom line. i need to curl up and sleep just one day away.

this week was also sawyer's bday, but i am going to do a separate post for that alllll on her own when i finish her photos.

some special prayer requests, besides those amazing reesey prayers - please keep phoebe and her family and "80" (aidan) and his family, in your prayers. i could list dozens of others, but today, my dallas hemoc parents have some breaking hearts.

i never thought id have a "circle of friends" that are constantly updating each other on common friends whose children are sicker, better, dying, surviving, and healing. i didn't ever think i would know (the most amazing) moms who would chat with me about clinic and chemo.... instead of bedtimes and dinner choices. but when they hurt - i hurt :( so prayers that they are lifted up and find peace, however it may be. pray for miracles.

a friend named phoebe.

i have spent days typing and deleting. i can barely put into words the things i want to say.

when we were at children's, originally, it was hard to find people who "got it". there is a limitation that friends and family, even, can feel that is the same as a parent and child.

in november, "a God thing" happened. my uncle met a woman at a funeral (his friend, her grandfather - the amazing and inspiring, zig zigler). my uncle told my mom that she would like to talk to me if i needed anything - and i was grateful for that line of connection. yet still did not know details.

within 24 hours, while at the hospital, an oncologist was talking in our room to the nurse... "you know who they should meet? phoebe". the nurse agreed enthusiastically. the oncologist told us that while reese's tumor is completely different, they shared some of the same endocrinology problems - the DI, the ddavp shots then, the cortisone, the monitoring pee, the ins and outs... but that phoebe's parents were "masters of DI" and if they could hook us up, would that be okay?

of course.

i tell my mom about it. she tells me who my uncle was talking about. and sure enough - same family. i knew i had to connect.

amey is a source of hope. wisdom. a mom who understood. we could chat about frustrations of getting the ddavp shot at the hospital, chat about how scary it was to wait for an MRI (she taught me the word "scanxiety"). and how she balanced 4 children. i could ask my "did phoebe ever...." or "what did you do when..." questions that no one else had the answers to. no one else understood.

(video posted less than a week ago) https://vimeo.com/70128830

https://www.facebook.com/PrayForPhoebe
http://atypicalmiracle.com

in medical short, phoebe had an AT/RT tumor. after surgery and a year of very very aggressive chemo, she went home clear. her hair growing back, happy with her family, they went on trips and spent every second of that time together...

she started to have headaches. and last friday, their post was:

"It is with great sadness that I post tonight. Phoebe's cancer has come back. She has a new tumor growing in her brain at the original tumor site, and a new tumor growth on her spine. Because the tumor site in her brain is in such a sensitive/integral area, it would not be ethical to radiate. She has already had the most intense chemotherapy protocol available; more chemo will not knock out these new tumors. We can expect to have 2-8 more weeks with our precious girl, unless we witness a miracle. We are clinging to the hem of His garment...Thank you all for praying for our family. We love you."

i read that while at the splash park with my family... i had been waiting all day. praying all day - for a clear scan.

i cried there at the park and my chest panicked like i did months ago. oh phoebe...

i can't seem to put into words, exactly how i feel. heartbroken. just... broken, completely, for them. i pray with every breath for their needs to be heard. every minute i hope for a miracle. phoebe is a miracle.

if you read the updates of late, phoebe has had a terribly high fever and they had to run to dallas for some morphine before hospice was set up. so quickly things turned.

phoebe has taught thousands of people how to live. how to smile. she's an inspiration that will live in the hearts of those thousands of pray warriors - many of the same warriors that pray for reese - forever.

amey and nathan, phoebe, and your boys, thank you for showing me how to be real, how to step up when needed, and how to cherish every single day of our lives. every minute.

and how to laugh and live through the tears... and how to live by faith.



anyone interested in purchasing a phoebe shirt, her church family has set it up HERE. put size in special instructions. all donations to the fair family, of course.

there's so much more my heart could say. fear, sadness, hope...

praying for you, phoebe. sweet baby. :(