Jillian Miller's Journal
Long time...No, updates.
Written Mar 13, 2013 9:28amI couldn't even begin to write all that has happened in Feb and March thus far, at least not today...but I'll write this....
Feb started okay, I think? Who knows at this point? But I do know mid/late Feb started a thunderstorm that hasn't stopped yet. You know the saying goes, "when it rains, it pours" well, as I said...it been storming.
Feb 2, Prom! We went to a benefit for PMCH done by a fellow cancer family. It was fantastic!! We had a ball. :)
Feb 6 brought IT/IV chemo...and a Steriod bolis. It was a rough round for the Dex, the Steriod. Her legs her, tummy...rough.
We were again scheduled to meet with MAW, but it just didn't work out. Sick Jilly. :(
The week of Feb 18-22 is a bit of a blur! That Monday mom was taken by ambulance for shortness of breathe, flu like sx's. She was in the hospital for the entire next week. She has a blood clot in her leg, sob from her congestive heart failure, and something going on with the heart. They wanted to do a heart cath but with the clot, they can't. She is home now on Coumadin...and they are monitoring her blood from home. She has PT, and OT coming to the house (which all schedule through me) a tech that helps her clean up, which hasn't started yet, and a mobile dr. Soon, she will schedule to do the heart cath, and they believe heart surgery from there...the extent will be clear after the cath. So, we have that.
Feb 19, Jillian spikes a fever and hasn't been pooping. We end up inpt until Feb 22. Docs blame it all on a viral inf. She has numerous rounds of stool meds to help, including suppositorys and an enema.
Throughout this week, Jencyn also had what her peds dr believes is a virus, I say is because Jencyn is still having problems also.
Last week of Feb Jillian felt fairly well, and went to PT.
Now, March is a blur, a bigger blur...Jillian has been in and out...inpt/home so much this month I can't figure the dates right now, but shes in the hospital as I type. She came this time with viral types sx's, bowel issues both loose and constipation, and lowwww counts. She still has all these issues. They are running ALOT of test to try to pin point the problem, right now...we just don't know. She has been on a chemo hold for over a week....almost 2. She has severe belly pain on and off...loose stool...constipation, sore bottom on and off...and low counts...yesterday her ANC was 660, hem 9 (after a blood transfusion on 3/7 I think it was 3/7???) and platelets 53,000 ( they should be 150,000 at least...and 53,000 is the highest Jillys has been in 2 weeks)....so, we wait. I'm not sure the current as I home taking care of a few things after staying at the hosp Monday night, Josh stayed last night and is there now.
I apoligize for not updating, I do update a lot more via Facebook (Jillys page is Jilly Bean and the Fight of Her Life)... I do understand some people do not have pages/walls...I will try to do better!! I appreciate your support, love, kindness, and prayers!!!!
Jillian will also have a website and t shirts avail soon. I appreciate the help of some amazing...A M A Z I N G...people that have helped with these things!!! I couldn't appreciate you more!!
...and to those special people that lift me EVERYDAY, you know who you are, THANK YOU!!! <3
Written Jan 11, 2013 5:47pmFirst of all, NEWWWW PHOTOS!! Just a few, I will try to add more soon. Well, Ms Jillian had clinic on Wed 1/9/13...her counts are too low. ANC 226. So she's neutropenic.We are on house arrest. So weird, everything was high. So...increased chemo now..too low! Ack, cancer!...or chemo! Now, she is on a complete chemo hold. We will go back next Wed 1/16 and check levels again. If they are back up, resume chemo. If they are not, another week of holding chemo and come back to check levels again. Sheesh, easy cancer, easy phase right? B.O.L.O.G.N.A.
We are all hanging in there. Kiddos are back to school! Yay. Report cards reflected the last few months for sure, not as good as usual but still very good. Jacob's was much improved which is fantastic. Jencyn is completely potty trained...HOLLLLA! Such an accomplishment, she was stubborn but now, she's a big girl!! :) Mom, is maintaining. I wish she could get out, enjoy herself...she just won't. Josh and I are again, hanging in there.
Happy New Year! We welcome 2013, hope it gets a little better though.
Thanks for the continued support and prayer. We appreciate you!!!
Well, we made it through December...Oh wait, its 2013?
Written Jan 5, 2013 10:14amWow, December.
Well, 2012 was a year I can willingly let go of. Onward we go!
The beginning of the month was alright, Josh took Jacob to a dinner for school!...Read UP. We all were unable to go because Jilly wasnt feeling well. December 12, clinic day. ANC was still slightly too high so, daily chemo was increased. Jilly left clinic a little tired. She had been vomiting on and off but Dr thought it was chemo, seems acurate.. That evening we were able to go see our first visit with Santa of the season!...We were invited by a dear friend, Santa himself to come to the ISO in Downtown Indy! We saw Satna and the Yuletide show! Great night! :)
The following day, Jilly felt okay...not too bad..just a little tired. She was able to see Santa again...this time at her Clinic Christmas Party! Fun!...St Vincents PMCH did a fantastic job!...Jillian, and all the kiddos got nice prizes...icluding tickets to a Pacers game! That evening, Jillian started feeling icky...her tummy hurt.
The next few days, vomiting. No fever.
Sunday, 12/16 The Make A Wish wish granters came!...Jilly hadnt been feeling super well...she seems tired. She fell asleep on my chest while we were chatting...all of a sudden after about 15 mins of a deep slumber..she popped her head up..robotic like. Then, she had a seizure. After a bit of hustle and bustle we were on our way to PMCH per Dr Doug. We were there for 2 days. She did indeed have a seizure,which in some strange way was a blessing. Jillian had been vomiting because she has drug induced hepatitis of the liver. Her liver enzymes were elevated to 10x what they have been. After lottts of fluids, and some testing. We went home.
12/18 the big kiddos had a school program! Christmas! They did so well, very proud mama! :) I was happy I made it. :)
On Wed 12/19...we were back. Jillian had the croup. Pretty sick little lady for a few days. She was given more fluids and a steriod bolis. Sat 12/22 we were back in the ER. Jillian was vomiting blood. She had a torn esophagus. We made in home very late that night.
December 23,2012 Jillians RE Birthday! One year since this nightmare began.
That Day was spent celebrating..Jillian. First, Joshs mom and step dad brought Christmas for the kiddos! Then, We had some great new friends come visit. The Gamez family. Ms Jackie, mom in this family, helped all the kiddos make ornaments...kids played! Then, later in the evening Ms Terisa Thorpe joined the party. We made our way to PMCH.
The Lantern Release, huge orange balls of light begining hopefully sent to Heaven in hopes all our troubles, fears, and stress will wash away...and only love and hope stay. It was a beautiful moment, spent with beautiful people. It meant the world to me...and Jillian. Thank you.
That day was bittersweet of course. But, we did it!
The Holidays were magical to say the least! Thank you to everyone that made this Christmas amazing for my kids and my family. We are blessed to have you. I couldnt say thank you enough to each of you!
We ended the year starting at a wedding! Congrats Lauren and Mike. Then, home in time to watch the ball drop and kiss all the loves of my life!
2013 will be another year of treatment for Ms Jillian, another year of this beast!...but I welcome 2013!...we have alot to look forward too as well. Most importantly, we are all here and together!
We did see the other side of life...death already early this year. RIP Billy Ewing, my second cousin. Love and peace to his immediate family.
Again, THANK YOU for following our joureny. Jillys journey. We appreciate the love and support. We have seen UGLY at its finest and you truely cant appreciate the light without the dark!....Thank you!
Thank you for the continued prayers...dont STOP!...we still need them!
I hope 2013 brings us ALL good heath, happy moments, and lots of love!