Our NEW life

My world is asleep...except for me.  Our world is evolving, changing.  We love it!  Oh how we LOVE it!!!  We no longer spend all of our time as a couple discussing medications, cancer and how to prevent drops in counts.  Whether or not we should keep Gracie on the study.   Her last appt was the day before Thanksgiving.  I stayed home with Tyson, I always used to go and now my new role is to stay home or go out and shop and explore one on one with Tyson.  I almost always had an overwhelming desire or need to be at her appts.  Now I don't and Daddy does and can make it, besides she wants him there.  And after so many appts it's wonderful that it has almost become like a daddy/daughter date.  He even let her stay and play with Miss Jen for an hour last time after!  I love that she loves it so much...she does well with the blood draw so Dad tells me I haven't ever been back for the arm draw and I'm ok with it.  I was there for many hard things and I would be there again if I was needed in a heartbeat and I would endure every heartwrenching moment for her.  But I thank my Father in Heaven that today I don't have to.  I am so thankful that today our greatest concern is kids that don't listen and a few minor colds.  An 11 day work stretch, a house that never seems to be clean.  Sound familiar to anyone?  My it feels good to worry about normal things.  Just sitting here I realize how much lighter my shoulders feel, how much the tension has dropped in our home and lifestyle.  We are as busy as ever but with much easier things.  It's easier to watch the kids while Todd prepares a lesson for Gospel Doctrine and stay home with the kids with colds than worry incessantly about fever and low counts and wonder how we will manage another hospital stay and if she will get enough chemo if another chemo hold occurs.  The future holds no certainties and of that I am always aware.  My mind is not naïve and even more so my heart is not.  I keep in close contact with other cancer moms.  I watch as their children suffer, I watch as they relapse and endure heart wrenching challenges.  It pains me, and I know there is no guarantee of tomorrow.  But there is today!  And I will rejoice in it!!  God has given us THIS day!  And THIS day we are blessed so very blessed.  It has been almost 5 months since Gracie took her last dose of chemo and many changes have happened since then.  We now get to go to the library for story time.  We get to go to church as a family most weeks, Gracie is going to primary and loves it!  I can't say the same for Tyson in nursery haha but we are surviving:) And im grateful his health permits him to even though he is terrified and one of us ends up in there every week.  He is a stubborn boy...he comes by it naturally what can we say!  We no longer plan our entire evening around chemo!!! We can eat what we want, when we want!  A true luxury even I forget about on occasion as it has become our new normal.  It's almost mind boggling when I realize she no longer takes any medication at all I couldn't believe it when I filled out a medical history last week...not a single medication!!  Her port is gone and a fever is just that...a fever just like any other child.  She is of course still more susceptible and her body is still working back up its immunity and she hasn't been vaccinated since she was 1 but I think around January she may turn into a pin cushion as we get her caught up.  Life will never return to the way it was before cancer, and in many ways that is good.  But we are evolving as a family, as a couple and as individuals.  We are being shaped by the Masters hand.  We have learned much from our experiences the last few years and no longer take for granted to much of what we once did.  I wouldn't wish many of the experiences upon anyone but now that I've learned what I have I wouldn't give it back either.  I hope I can use it in a positive way instead of dwelling on the bad.  This Thanksgiving we are grateful for our NEW life, and our hope for the future.  For dreams and goals and the ability to work towards them as a family of 4!!  We are grateful for good health!!  Grateful for wonderful families and friends who helped us through and even strangers!  And grateful as we look to forward to Christmas for the Savior of us all.  And a loving Father, who teaches and tutors us so that we may become like Him and return to live with Him someday.   A most humbling and beautiful truth!!  Happy Thanksgiving and here's to a wonderful December and Christmas season!!

Thoughts...warning not everyone may enjoy this post but it's just something I need to share tonight

Tonight I took the kids out on an adventure, we hit up a few stores had dinner at cafe rio and used some of their money from the "binky fairy" to buy them ice cream.  Sound pretty normal?  Maybe but it doesn't to me.  Even when it's stressful with my 2 monkeys its in almost like a dream that i never thought would be a  reality.  It's been a while since I posted and SOOO much has happened.  But as I sit here my heart hasn't changed much.  Gracie has been off treatment for almost 3 months what a joy!!  What a blessing, but do you know what hasn't changed?  My heart is still very tender, it still aches it still can't leave alone the other children suffering from cancer or other heart wrenching challenges. My heart bleeds for their mothers, who like me wake up every and have to chose faith over fear and sometimes get overwhelmed by fear b/c we know how brutal reality can be.  My heart has tiny scars on it for each fighter who has been taken from their families, yes even if i haven't met them in person. 
I still have to fight an inner battle and force myself to not comment when I see over and over comments from other moms about how "sick kids are the worst"  or "shots are the worst" I'd personally like to know the definition of worst when I read that.  I know it's all a matter of perspective and I don't blame them.  It's awful to see you're child suffer regardless...i just was forced into a different threshold where vaccines aren't a big deal and the only reason a sickness feels like a big deal is because of past trauma and when i sit in an er my mind flashes to different moments in the hospital...horrifying moments that I call "the worst" and yet I know that still others have their "worst" like the moment their baby drifted from this world and although into a better world, heaven, it was away from them. 
It's September, I wonder why the white house will be Pink in October but not gold in September for childhood cancer.  I wonder why our family was thrust into the cancer world so early on?  I wonder if her cancer will plague her again?  I wonder why the same drugs that are given to treat cancer can cause cancer? I wonder which cancer mom is wondering right now how they can survive just one more minute?  I wonder who and how I can help them...if not I pray someone else does.  Does anybody else wonder these things?  Despite the constant barrage of questions and emotions and hurt I have determined to wake up each morning and live by faith not fear, it may not always be easy and sometimes i have to work more at it than others but each day is a gift and cannot be taken for granted.  If I do not savor what today has to offer then what a waste of a precious gift!!
Thank you Lord for each and every day, and for every blessing that comes from Thy Hand.  I am not grateful for cancer, but in a strange way I am grateful for the tenderness that has entered my heart even though it comes at a high cost and with great pain. At the end of my life I hope one of the legacies I leave behind is that I did what I could to relieve human suffering, it's something that's always on my mind.  I just want to help lighten the loads of those who are truly suffering and if possible bring some peace or joy as God's servant.  There is so much suffering, and so often unseen or unheard. 

Thank You!

I have struggled for weeks wondering what we could say to the Dr's and nurses who have quite literally saved Gracie's life!  Thank you just wasn't enough, so this is what I came up with late last night and although nothing can truly express our gratitude and surely words are not enough, I hope this will help them understand just how grateful we are! 

“Thank you“ from Gracie who lives, loves and laughs

“Thank you” from Tyson her best friend, her buddy her partner in crime!

“Thank you” from Mommy who cuddles and kisses her babies each day!

“Thank you” from Daddy who each day is greeted with laughter and hugs!

Thank you from all of us, thank you SO much! Thank you can never be thank you enough!
We treasure each Dr, each nurse and each hand, who “sprinkled” our journey with “hearts” full of love.
Thank you for fighting each day by the side of the brave little heroes, who can’t fight alone.
Thank you for choosing to fight for the “gold”, and to cure children’s cancer the best that you can!
Thank you for Gracie, we truly adore, every moment we have to enjoy her once more!

Each note will be attached to a little goodie bag we made for all almost 30 of them at the hospital she was diagnosed at, her last visit there will be tomorrow.  I'm a mother full of all sorts of emotion from immense gratitude, to amazement that we are almost done with chemo, to the sadness that comes from leaving these dr's and nurses we have grown to love and trust, to just plain joy and where we are and where we have come from!  Just wanted to post how grateful we are! 

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

Clinic-2nd to last spinal tap

Pictures on the drive up...and my delicious omelet before we took off, thanks love!

Gracie is amazing!!  She has had I don't know how many spinal taps and part of me has liked not knowing somehow it makes the end seem closer...and every time I see those needle pokes in her back my heart sinks and I cringe.  So knowing she only has ONE more left feels so good!  Only thing that could be better is to have NO more left!  And in 12 weeks we will be singing that song!!!!  She did great at clinic as usual she is our brave little hero!  Her favorite part about going to the hospital she told me is going to a hotel and seeing Dr L.  She made Dr L a special picture to give her.  And the second Dr L walked in she was bursting for her to have it.  Dr L of course loved it and confirmed today that it is hanging on her wall in her office and makes her smile, which in turn made Gracie smile, then me:) isn't it great to see people happy!

 Tyson is at a super busy age and had his first trip with us,  he's a great kid however busy he may be we both think he handled the trip well.  We did have one moment I can now laugh at...wasn't so funny at the time when we then had to shower me and the kids again and were running late for clinic didn't want to miss her sedation time and Dad hadn't gotten any breakfast and...you get the picture but our little stinker pooped in the big bath tub while we were letting Gracie have one last swim in it.  But truly he did well and of course kept us very busy:) 

The kids loved swimming as usual and there's just something so fun about a hotel especially as a kid....and maybe even more especially as a child who has spent so much time isolated.  Thank heavens for a king since all 4 of us ended up in it by morning but we did get sleep thankfully:)
Gracie got her intrathecal methotrexate (chemo in her spinal fluid), IV vincristine (chemo), and IV pentamidine (antibiotic she gets every 4 weeks).  They always take a sample of their spinal fluid when giving the intrathecal chemo and I asked her Dr the results today and she said the pathology report showed no blasts which means no leukemia cells.  No matter how many times you ask this question and get a good response it never, ever, truly ever gets old!  She has never had a single blast in her spinal fluid so far which is great news yet because of their ability to hide in the spinal fluid they do ALL these spinal taps anyways.  Seems a little crazy that she's had somewhere around 15+ spinal taps and never had a single cancer cell in there found.  But we just pray whatever they are doing will work and cure her for life.  Her counts were great too!

Clinic Stats

Weight:42 lbs

Height: 3' 4.5 "

WBC:2.6

ANC: 1200

platelets: 301,000

Hemoglobin: 12.0

 

She was slightly increased again due to her body size.  She now takes 1.5 pills of 6mp twice a week and 1 whole pill 5 days.  Still 6 pills of methotrexate a week.  Today Dr L said for the first time in  8 months she recommends her going in for a check in 4 weeks instead of 1-2.  Wow, nice to hear.  Her body is tolerating the chemo well!  We hope it continues and she can sail through this last 18 (almost down to 17) weeks!

Our chain...its getting smaller!

Sweet worn out kids on the way home.  They were both wiped out. 

We are glad another trip/treatment day is over and can't wait until we come home from her very last spinal tap/chemo day and breathe a big huge sigh of relief!