another fever...

well before i forget some of the details ill try to record since i usually dont during times like this.  last night i went out for a short time because its been super hard to keep staying in and being isolated.  before i headed home i got a call from todd that her temp was up a little.  we know our girl..  we know that her normal temp is around 97.6 range.  when she hits 98 and especially 99 its just a waiting game as to when it will hit that magic number.  last night we prayed we could avoid the er.  we havent been impressed with the one in town and the other is 1 hr 40 min drive.  ugh...she made it through the night hanging mostly around 99 range and once hitting 100.1 but by 7 am we were running through our options and before 8 she was at the infusion clinic getting accesed/counts drawn.  next she headed to the pediatrician and they got her temp as 100.8 officially high enough for antibiotics.  they rushed back over to the infusion clinic to wait a whole bunch more...and wait for her differential to come back so we knew what her ANC was.  because that determines if she gets admitted or not.  well as our luck would have it her ANC was 13.  basically nothing.  so we opted for medford since we hadnt been terribly impressed with past experiences in town.  she got a dose of cefipime (yikes my pharmacist hubby may die at my spelling i dont know how its spelled) a broad spectrum antibiotic and i packed up a storm my mind racing a million miles a minute thankfully tyson fell asleep in his porta crib watching baby signing time.  such a trooper.  boy i cant wait to get my family out and enjoy life.  todd drove home with gracie we loaded up and headed over to the hospital.  we got here and surprise it was full...so she waited in the treatment room while they got and cleaned a room for her.  she has only urinated twice today and both seemed very concentrated (for my recollection not that anyone else cares).  her platelets were down to 165,000 today hgb 12 and wbc 2.6  her monocytes were 37% i believe so we are hoping like crazy her anc will follow in the morning and show some signs of trending up.  well she is out and im tired.  who isnt??  only a few dozes last night lots of checking temps and her waking up freaking out a few times.  we are anxiously awaiting "good times to come" surely they must be ahead...this truly cant be hard to beat.  ready for less dr's hospitals and cancer in our world.  goodnight little ones sleep tight...until we all get to sleep under one roof again.

Low ANC continues-down to 80

This first part is for our records...so disregard if you dislike medical jargon and details.  Yesterday around 3:00 we took Gracie in for counts again.  I was going to take her Tuesday and woke up with a really awful feeling about it I couldn't shake.  I felt that whatever could happen would be much worse than waiting to take her in another day or two.  Luckily Todd trusts my impressions and we waited and decided to go yesterday.  We had hoped her counts would increase and were encouraged that her platelets, hemoglobin and and monocytes were good.  Her monocytes were 7% of her 1.6 WBC count or 336.  The monocytes typically precede neutrophils so they can be a good sign if they are there.  However, yesterday her monocytes had dropped to 160.  So mostly likely she is still on a downhill trend.  Lymphs were 80% yesterday.  Segs 4% and no bands. 

ANC: 80

WBC:2.0

Platelets: 286,000

Hemoglobin:12.1

We are doing our best to stay optimistic despite what is incredibly challenging for us.  This is very near the top of things we would like to avoid at all costs.  Our Father is tutoring us very individually and teaching us what we are here on earth to learn.  At times we wish to say we don't want to learn this, but His power encompasses and shows us we must learn or choose bitterness which I refuse to choose.  We know He is aware of Gracie and each of us and will continue to guide and sustain us in what we could not take on ourselves.

Gracie didn't want to put her cream on yesterday and Tyson of course wanted a piece of the action.  Just as he cries uncontrollably each time i give her amoxicillin b/c he wants it and she cries and runs away because she doesn't.  So I suggested we put some on Tyson.  She quickly declared that Tyson was not as brave as her he was too little...little does she know she HAD to be that brave younger than Tyson's current age.  He is of course brave and wonderful and we love him every bit as much as her and thank God he hasn't had to be so brave so young.  He of course has been a champ and endured with us.  She quickly bucked up pulled down her shirt and got her cream on like a big girl...not to be outdone by little brother.  These kids are sure strong-willed and determined:) Then I asked if she wanted to pray and ask Heavenly Father to help her be brave.  She said she did.  So I tried to get her and Tyson into the family room to kneel by the couch but she knelt where she said and said "we need to kneel mommy".  So we knelt (and Tyson wandered and made chaos and noise) and she sweetly prayed that she could be brave and for Tyson and Daddy and Mommy.  She prayed her counts would improve if it was His will and that she could feel peace and happy.  Well the Lord's will was not that her counts would be up yet and as her sweet 3 year old voice declared we will accept His will.  She was in fact super brave according to dad who used his lunch break to take her for counts.  She was thrilled and told me later if was fun to have daddy take her.  She squealed "daddy" with utter delight when he walked toward the car and RAN into his arms.  Tyson on the other hand screamed Daddy and cried until I took him to explore the parking lot.  They both LOVE their Daddy.  Gracie true to herself chose a little car for her brother, a fish for herself and got me 2 stickers which I put in the car so I can see them everytime I'm driving.  She loves to share.  She was disappointed she had forgotten the stickers we put in a bag for the nurses.  Next time:) 

We're still waiting to hear from her oncologist, but are definately still on chemo hold and fever watch.  Praying we are lucky enough to stay home this weekend.  But preparing for what seems inevitable.  Counts again probably in another week its not very likely they will be up before then.  If they are even up by then. 
I almost forgot one of the main reasons I was going to post.  I learned early on in treatment if I can just think for a minute when things are hardest what I have to be grateful for and list at least three things...my perspective changes. 
1.  I'm grateful Gracie has Tyson for a best friend when she's isolated.
2.  I'm grateful Gracie is still here and still in remission.
3.  I'm grateful for now, Gracie doesn't have a fever and we are home while Todd has to work.
4.  I'm grateful for my husbands encouraging text this morning.
5.  I'm grateful the Lord has taught me "it will be alright in the end.  Trust God and believe in good things to come" and for a friend that sent me the reminder this morning via Elder Hollands mormon mesage.
6.  I'm grateful the Lord had 3 special people send us packages this week to help bring a smile to our faces.
7.  I'm grateful the Lord trusts me to be Gracie and Tyson's mother.
8.  I'm grateful the Savior can succor or "run to" me in times of trial as He understands perfectly my burden, Gracie's burden, Todd's burden and Tyson's perfectly all at one time.
9.  I'm grateful for every moment of peace, happiness and joy I feel.  All are a gift from God.
10.  I'm grateful for the Gift of the Holy Ghost and the peace spoke to my heart by Him during times of great trial.
11.  I'm grateful Gma and Gpa can come to make Gracie smile and help a little this weekend.
12.  I'm grateful I have so many things to be grateful for and that the Lord has seen fit to teach me the gift of gratitude in my young years. 





"Not shrinking is more important than surviving"

So as I was thinking tonight and of the missed posts or times I haven't posted it has OFTEN been when Gracie's counts are low.  That fancy word "neutropenia" feels like a cuss word in this house.  Please don't tell us she's neutropenic...please don't give us another chemo hold...please don't scare us with the "f" word...fever!  I'm typically too emotionaly spent to even think of posting at that time and sadly just feel weighed down.  I feel like physical weight is placed upon my shoulders and my neck hard to hold up.  Today the news was soo unexpected...I guess it always is  Didn't they tell us back in frontline treatment "once you hit maintenance things get much better..you only have to go in once every 4 weeks"...they forgot to mention UNLESS your daughter is prone to low counts then you get to go every week or two.  Our brave little hero has gone to get counts every week or two since we moved down here...since JULY.  Yes it's now march.  And now I wonder...did we get so set on hoping we could just sail to the finish line without another chemo hold it was destined to happen.  Well either way it did and her ANC tonight was a whopping 112.  When she was diagnosed it was 100.  When she was in delayed intensification the phase she lost her hair and they often need transfusions or low blood counts her ANC was never below 300.  So why maintenance?  I will admit I broke down after I talked to the nurse and then the oncologist.  Another chemo hold and check counts in a week.  So we wait...on lock down.  No playdayes, no social interaction, no public places (not that we were anyways) but we were enjoying the park occasionally with friends.  Oh except we get to get out once...monday morning for the dentist.  Gracie woke up complaining of her tooth...so her hygienist mom whipped out her mirror and the light for checking ears I laughed at Todd for buying...turns out to be pretty handy for trying to play hygiene at home.  Swollen gums in her front middle teeth behind and the front tissue along the mesial gingival margin is not attached (that's for you Ace) the tissue is kinda flapping.  hmmm so i get nervous about risk for infection and call her oncologist and text the dentist...her message said she wants to see her at 830 monday morning and she could call in some amox to be safe for the weekend.  Her onc said the Amoxicillin coulnd't hurt...so more antibiotics she started them today.  Hopefully it's not too big of a deal at the dentist monday morning, yes i'm anxious about taking her out when she should be on lockdown....but it needs to be looked at.  However it can't be poked and prodded only looked at, counts are too low to mess around at all. 

Although the answer is unknown to why her counts are low, not me, not Todd, not even her oncologist has a guess to why they are suddenly so low I'm grateful for the Spirit prompting me to forego watching my laundry folding show of choice "Cake Boss" and leading me to open a talk given (i honestly don't know when) by Elder Bednar about not shrinking being more important than surviving.  A lesson Elder Maxwell taught him years ago.  Of course Elder Maxwell also fought leukemia like Gracie.  He also shared a story of a very young couple facing cancer recently after marriage.  Todd was even sucked in and we both folded (or partly folded) and listened as he taught us valuable lessons.  Lessons that will still take much work to internalize for we never truly learn until we experience and internalize the words we hear.  While watching it I felt as if the Lord had invited His very own apostle into my bedroom for a private chat about the things I needed to hear.  I don't think it was coincidence or chance, but I do KNOW that the Lord is mindful of ME!  He is mindful of Gracie and all of us.  We are His children and He will not leave us alone.  It is more important to not shrink than to survive.  I pray I may never shrink but always stand faithful even in moment of severe trial and be on the Lord's side, as He is always on mine.
http://www.youtube.com/watch?v=_cpyPUEQlDY&NR=1&feature=endscreen