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! 

 



Counts and pics!

Counts were good this week.  Dad took Gracie to the infusion clinic and we were very happy that at her higher dose of chemo her counts had remained good.  They were in the perfect range!  We are sure hoping they stay that way as we wade throught the last few months of treatment! 
As of last friday we have 19 weeks left!  We are in the teens!!!!!  And in 2 days we'll be down to 18 weeks!  Oh I love letting her take a link off the chain each Friday!  Feels like we truly are getting closer!

ANC:1259

Other counts all great but I don't remember them off the top of my head.

Gracie HAD to type on the puter so below is her contribution to this blog:)
nmnnnnn/..///.,, bjnhhhhhhhhjjjiuuuujjjlkkoo9uiiijjhhhhhhhjjhhjjkiiiuhhhgghhyuuuuuiiuyuyuyyyyyyyyyyyyyyyymmjnnhjjjjjiii
';,mnnbvvvvgggggyhgnnnnnnhhujjmmkmmyyhbvvfrjjhhgkkkuyuyuu99oo9000--;p.jhggyyyuiiiuuuuuuuuuuuuuuuuuuuuyyyyymnnmmm,,kjjjmnbhp0iiiiiiiiiiiiiiiujhuuuuuuyyyyy  tvfgggggggggggggggggggfffffffffffffffff    f;;pp00iuuuyyyyu88899998yyytty7nhgggnnmmmjlllllllnnnnnnnnnnnnnnnnn

Mom and Gracie time at the park while Dad's home with Tyson

 

Putting up her valentine hearts from grandma

She HAD to make a cake one night so we made a marshmallow/chex one I was too tired for the real deal and it was too late!

 

Taking off the 20 week link off the chain!

Her first Valentine flower from her friend Jon!

Riding bikes with Tyson

A fashionista that loves to swim!

Crafts and tutus

 

She loves playing with her little people/figurines, my old aladdin toys and putting them all in the bus or a house and moving them around:)  And was on a kick where she HAD to wear a dress everyday! Which is fine by me but convincing her a sweater/leggins and or socks were necessary was another story!

Celebrating making it through another appt:)  Can you tell we like to celebrate yet??

"summer day" inside while tyson napped

Can't believe how big and grown up she is getting hard to believe how much has changed while she's been on treatment.  She is determined as well and full of faith!  Keep fighting brave girl!  I have a feeling you're going to WIN big and before you know it you'll be 3 AND CANCER FREE!!!!!  Still mind boggling to me that a little girl can have fought cancer and won by the age of 3!  the words still dont blend for me, but she's our littler hero!  If anyone can do it she can!

Tyson passed D-day (aka 18 months)

Our sweet little boy is 18 months...well now a little over, I'm forever behind on blogging!  So we of course had to celebrate since the little Miss Gracie spent her 18 month birthday in the hospital getting chemo and steroids right after a cancer diagnosis, so this was a HUGE day for us and one honestly I had been terrified for and dreading for a while.  As it got closer the reality (or idea) that we may actually experience a healthy 18 month old filled me with joy!!  And my wish came true!  So i (with some help from the kids) made him a cake and enjoyed a little celebration that night!! Dad surprised both kids  with the perfect gifts.  A little basketball for Tyson (which Daddy helps him dunk all the time) and a Dora coloring book with stickers for Gracie!  He knows them well!

 

He is such a boy! Wild, busy and FULL of energy!  He is always climbing which for me is easy to appreciate I constantly remind myself I am thrilled he's standing on the table or has climbed into the high chair or is attempting to climb into his crib from the arm on the rocking chair because it means he's HEALTHY!!!  I'd take a healthy climbing baby anyday over the pain of cancer and no walking.  He has been such a blessing to our family and Gracie just loves her brother, and he loves her too!  She always asks when we're going somewhere "and Tyson come too?" even though they fight and don't know how to share perfectly yet (haha) I think the Lord knew what he was doing sending him when he did and we couldn't be more thankful he's here with us healthy and making us smile every day!  He's talking a lot and learning new words every day.  He says juice, milk, drink, hungry, ball, nana (banana), dance (and does a super cute dance bouncing up and down), mom, dad, tries to say gracie and repeats just about everything we say.  He weighed in about 27 lbs (big boy) not sure on his height his well check is in April that's when his next shot is so we opted to wait til then.  He's had a fever the last few days and hopefully will be feeling better soon.  He loves Baby Signing Time and I Am A Child of God (movie)  just like his sister did (we got your money's worth out of those grandma:)) and of course his Daddy!  When he sees Daddy after work he goes RUNNING down the hall yelling "dad dad" into his arms!  He loves anything sweet, literally goes crazy for treats, cookies, ice cream...sugar really any of it.  Much more of a sweet tooth than sister.  He loves books too!  He'll sit down and readwith us for a while.  He is incredibly determined and HAS to be doing anything his sister is doing.  When he's feeling good he eats pretty well.  Loves bananas, strawberries and most fruit and macaroni and cheese.  He also loves babies and other kids.  He walks right up to them and tried to grab their faces or hit their head... a little bit aggressive at times but I don't think he knows it!  Maybe a bit like his Daddy he loves so much in his determination and unintentionlly not gentle:)  We love you Tyson!  So proud to call you our boy!

Skinned his nose at the park and pulled the bar stool on his face the next day!

He can do everything himself!

Loves pointing out his head, nose, eyes and parts of his face!  And hats!

Sweet tooth!

Climbed in by himself!

No gloves for me thanks:)

Standing on a chair

 

Park time!

 

Brrrrr

our heater went out a couple weeks ago for 2 nights and 3 days we took advantage the first night and had a staycation at the hotel down the street!  It was nice to relax together and the kids got to swim twice even if the water was freezing cold:)  Luckily it's up and running again!

The same week my kindle broke, the speaker on my phone wouldn't work so I had to replace it.  I had to return something else we got that was broken and my phone had just recovered from he bad microsd card that had deleted all my files/pictures/apps. 

I was frustrated a bit, but felt kind of like heaven was telling me loud and clear  "all these things shall fail thee, but I will not"

Good lesson to learn even though its hard at times!  Grateful for all the good blessings we have!

Temple/Clinic

 

Clinic was yesterday, it was an extra long day but worth it. We decided to hit the road by 7:30 so Todd could go to the temple its been a while and we both felt it was a good thing, he was anxious leaving me with the 2 kids out there while he was inside and so far from home but things went well.  The kids and I survived as I had assured him we even found out there's a waiting room inside we played in for a little bit.  I could tell the kids were feeling the Spirit when we first got in there and Gracie was telling Tyson to be quiet, not so loud or rough.  Of course they are still kids so after the initial feeling wore off they got wild and we spent the last part running out in the field across the parking lot. 
Gracie did great at clinic and her counts were good!  Yay!!!  Have i mentioned how grateful and relieved we feel that her counts have been so good and finally recovered!  Such a blessing!!

Stats

Height: almost 3' 4"  (101.5 cm)

Weight: almost 40 lbs (above but with clothes on)

WBC:3.3

ANC:1880

HGB:12.7
Platelets:260,00

 

She of course had to have a prize for Tyson again and chose him a little bear with a rose for his valentine:) She is just so sweet!  And chose some little figures of princesses/princes/wizards/dragons etc which she loves.  Once we realized there were several cases of the real flu hospitalized there we were definately more anxious and tried to stay in our room after that.  So far so good. Oh yeah and a little boy wandering around the hall that told the nurse he had a sore throat/headache so he wasn't at school she told him he should go back to his siblings room then.  But we just stayed in our room and wiped hands like crazy and it seems to have worked because it's now been 5 days and we're all still healthy and grateful.  Since her ANC was about 1500 again Dr P upped her dose of chemo I guess her BSA (body surface area) has increased enough to up her to 7.5 pills of 6MP a week from 6.5 and her methotrexate is now at 6 pills a week.  She is a total rockstar at swallowing now and swallows every pill not always totally willingly but I don't blame her a bit. Especially on methotrexate days when it's like here open up i have 6 pills for you...she usually does 2 at a time and only because my gloved hands can't pick up more at a time and at 3 they don't hold them there long without swallowing or spitting them out.  I actually think she could do all 6.  

She got her pentamidine and Tyson of course hasn't been to clinic for a long time other than the quick blood draws in town for counts and was very interested in her iv pole and everything he shouldn't be haha (and TIRED).  But in all honesty he handled the day like a champ for his age.  He's a great little guy at the end Dad took him out to the car and he fell asleep immediately while Gracie and I finished up.  I should have snagged a pic of tyson in the crib in her room haha it kept him contained for a few minutes:)  Next month is another spinal tap/steroid/vincristine(IV chemo) month...after that we'll be down to 1 more! 

 

Friday Gracie got to take another link off the chain!  21 weeks left!!!  And flipped a page in the countdown calendar!!  Farewell January!  And welcome february with so far enough warmth to bundle up and hit the park every day!!  We have loved it especially Gracie...swimming, parks, princesses, dancing and dresses are a few of her VERY favorites for now!  And she is loving puzzles, playing with her little people buses, houses and any figure/doll/accessory/stuffed animal she can get a hold of and make a pile with.  SHe transfers them from her big doll house to the bus to the small doll house into a tote and more:)  Good thing i'm not a crazy perfectionist with toys and order because I think it would destroy her fun and that's pretty important to me so the piles usually stay and transform day after day.  A constant reminder that I'm blessed enough to spend another day with her!  Thank you Father for each blessed day!!  Park play date today and she's been making lots of valentines!  She's turning into a very kind/sharing (often, she is a kid still ;) )and inclusive person.  When I told her Jon was going to play with us at the park tomorrow last night she immediately told her daddy and Landon and Jaylee and named all the friends she has been playing with.  She's constantly such a good example for us as her parents. Again, I feel truly blessed!  Oh and sweet little Gracie's favorite song to sing is the ABC song and the 5 little monkeys, she takes after her quiet/shy/reserved parents as kids and when we ask her to she gets really shy/embarassed and says she can't.  But she sings it all the time when she doesn't know i'm listening!  Keep on fighting sis,  you're going to make it!!  And we're behind you every step of the way and so many others most especially our loving Father in Heaven!

A day in the sun!

Just read a quote that summarized the truth of motherhood.  "you can never be ready, you can only be wiling"  I'm grateful now despite the challenges that although I would have never deemed myself ready for what was ahead almost 4 years ago when I got pregnant with Gracie, I was willing.  And moments like last Friday are the payoff for being willing!  We got two adorable, wonderful children we wouldn't trade for the world and after a long time of really not going anywhere we decided it was time to start to slowly remind ourselves what normal life is and took a day trip to redding.  We had a great time in the beautiful, sunny warm weather! It was at least high 60's so heaven compared to the cold we were used to.  Truly the ideal weather! We were even tempted to stay once we got there but hadn't come prepared for it.  We spent the day outside doing what kids love to do!  First we took them to sundial bridge they loved walking across it and running on the paths then we went down to the Sacramento river and they had a great time throwing rocks into the water.  There was a cute little boy that was nearby most the time and he kept talking about a grumpy troll under the bridge it was pretty funny and Gracie kept asking about the troll.  His grandma suggested kids kingdom a very fun park the kids loved when I asked if she knew of a good park.  So we stopped for a potty break and pizza then headed to the park.  They loved playing around and Gracie while standing on top of a rock in a pretend waterfall area put her hands on the sides of her mouth and yelled "stop being so rough" to some older boys on the other end over and over.  Maybe i should have stopped her but I was far to busy laughing and enjoying the moment.  She then put her hands on her hips and said to us "hmmm, maybe they can't hear me, I better get closer".  She has gotten so funny and makes funny comments like this multiple times every day I'm trying to remember the good ones.  We went for a walk up the hill then had a race Tyson on Todd's shoulders and Gracie on my back down to the car and had a picnic before her 3 hours of no food for chemo.  Then when Dad was ready to go (he probably knew the kids would get tired and grumpy) he was kind enough to stay and enjoy some soccer the kids loved it and I wasn't ready to leave the warmth until the sun started to come down.  It was a wonderful day and in my opinion well worth the 5 hours of driving in one day.  In fact we just might do it again a time or two.  I'll have to add pictures later.  Sure love my little family!

23 weeks

Tyson at the hospital on tuesday..yes that thing in his mouth gives me anxiety.

Gracie after getting counts yuo can se her cotton ball/bandaid on her port if you look closely.

Sweet boy after baths

Just wanted to post that tomorrow will be 23 weeks left of treatment!  We are doing 5.5 pills of methotrexate starting next week instead of 6 (rounding down from her other onc).  This week has been a long week with the freezing cold/snowy ground outside and all the sickness we pretty well stay home and it is wearing since daddy's been gone from 8-7:30 ish each day.  But it's the last day this week!  Welcome 3 day weekend!  The kids have had cute moments and rough moments...sleep hasn't been as good this week with tysons molars coming in and gracie was pretty restless last night so I got lots of kicks since todd was sleeping in the chair with tyson when she woke up first.  Grateful he's soo good to help with the kids especially at night and grateful to have these little darlings even when im going borderling crazy:)

Counts and more

I never mentioned it before but Gracie has less than 6 months of treatment left.  As of last friday she has 24 weeks left...but who's counting?  Well, we are for sure and every friday she gets to take a new link off the chain it's pretty fun! 
This morning i took both kids to the hospital in kfalls for counts.  Gracie declared that she wasn't brave several times (meaning she didn't want to be brave or go to the hospital).  I don't blame her a tiny bit whenever she says that and wish she didn't have to be so brave, but I suppose that is exactly what makes her so brave.  It's doing the hard things we really dont want to do that make us brave, so she's a champ at that by now.  She was of course brave and true to tradition when they brought out the little prize basket she said "I want to choose a prize for Tyson" before she thought of herself.  Love that girl.  They can never turn her down for two prizes probably for a number of reasons but mostly b/c the 1st one isn't for her.  Counts were good which we are very grateful for especially after her last chemo increase. 

WBC: 2.7

ANC: 1242

Hemoglobin:12.8

Platelets: 271,000

Well i was shocked to get the text from her oncologist saying she thought we should increase her to 100% on both chemos.  That is a big jump!  That would bump her to 6 pills of methotrexate a week instead of 5 and 6 whole pills and 1 half pill of 6mp a week instead of 4 whole and 3 half.  that would be the biggest jump i remember.  We did 6 pills tonight or MTX and half pill 6mp and will do whole pills the rest of the week.  Hopefully she does ok with it.  I emailed her other oncologist but haven't heard back, hopefully we will soon just to make sure all are on the same page and she things that big of an increase will be ok.

Well had some cute moments today I didn't want to forget so this is for my memory so I don't forget.

Dear Gracie,

Today while you were going potty you made me sit on the edge of the bathtub as you always do and hold your shirt and you gave me a big hug and said "I love you Mom" and gave me a kiss on both cheeks.  So I asked if I could give you kisses on your cheeks and you said yes than said "you can give me a hug too"  So of course I did and it was a very special moment for Mom because you love your Daddy so much which I'm grateful for but don't always show how much you love me, I always know though.  Thanks sweet girl!

Love, Mom

And another was tonight when todd was going to run and I was going to make bread he asked Gracie do you want to run with Dad (which means sit on the bed and watch Dad run and read or watch a movie) or make bread with Mom.  Gracie said, "I want to do something with Mom" and looked at me and said we're going to make bread.  So grateful for the sweet moments with our wonderful kids.  Tyson was very cute at times today too smiling and laughing.  He is starting to say lots of words he says "nana" for banana when I took him to the store last week he held the bananas the whole time and said "nana" over and over everyone thought he was soo cute.  He says mom, dad, truck, drink, ball, and lots more but my mind is drawing a blank, he tries to copy us all the time now.  He signs milk, more and sometimes all done.  He is a CLIMBER!  He climbed up onto the kitchen counter multiple times today, stands on the chairs, tables, climbs and sits in Gracie's doll house (which is not sturdy enough for his 26 lbs), coffee table, tv...pretty much everything that can be climbed he will climb.  He definately wears us out but we are ever so grateful to be worn out by a healthy, busy body and to have him so healthy.  He got his first molar this last week and is working on a 2nd so he isn't sleeping the best, but it could be much worse so I'm not complaining just documenting. 

I don't know what the future holds, but I believe it holds more joy and happiness than I would have dreamed of a couple years ago.  I'm grateful for each day that my kids and family are healthy and here with me.  I'm grateful that no cancer cells were found today and every day since she has been in remission when they check her blood under a microscope (may sound silly, but it's an amazing and immense blessing each and every time it comes back clean...we know others who haven't been so lucky.  Doesn't mean the future is certain, but I want to be grateful each and every time there is no sign of cancer).  Just feeling thankful tonight, I have been very blessed!!

Oh and PS Todd and I got to go to his work Christmas party and won a TV!!

I planned on posting pictures...but can't get it to work tonight, so maybe next time!





Clinic-New Year's Day

So I'm really behind on blogging but mostly for wonderful reasons!  Like spending a little time in the evening with my husband instead of along blogging while he's with his little girl who just can't get enough of him. 
Our last clinic trip fell on New Year's Day...which worked out for us since Todd had the day off and with the roads to Medford it took Daddy and Gracie a good 2 hours I'd guess each way, but they did make it safely.  I was home with Tyson (who I think enjoyed the day and free reign with all the toys and one on one time with Mom) so I was there for all the details and although Daddy does a great job and if probably more thorough in some categories than me i don't know all of her stats.  She is likely about 40 lbs again though according to our new scale at home.  Her last visit to the ped the day after Christmas for fever/ear infection she was down to 38. 

ANC=1619

Other counts=good:)  I don't remember and can't find the paper

So her anc was good but a little high and they are wanting to be a little more aggressive in increasing her chemo anyways.  So they upped both chemos. Her 6MP went from 3 whole pills and 4 half pills a week to 4 whole pills and 3 half pills a week(74% of her recommended dose, up from 50%).  Her methotrexate went from 4 pills once a week (tuesdays) to 5 pills once a week (up to about 88% I believe of her recommended dose, also up from 50%).  We go back in for counts this coming Tuesday to see if we can increase more or what to do with her dose. She got her monthly IV pentamidine that she has been getting and we are soo grateful for Dr P and her being on top of things and calling the pharmacy down here to reserve all of it for Gracie since it is no longer being made.  Many of the kids up at Doernbecher are having to switch either back to septra or take a daily dose of dapson (i think that's right) which is less effective than the pentamidine.  Another blessing from our Father in Heaven.

One more thought that's been on my mind before I close.  I realized this past week that the first year mark from Gracie's diagnosis I viewed mostly as a day of mourning i did in some ways celebrate.  I was grateful she was still alive and for how far we had come.  But I had heard it mostly called a "crapiversary" which seemed terribly fitting and still does in many ways.  But then my dear friend Ashlie taught me a lesson and another mother who I haven't met yet but have gained much strength from.  And as I lay in bed a couple nights ago I couldn't sleep because my mind was filled with the beauty of celebrating.  "CELEBRATING LIFE"!  Why is there no holiday to celebrate life I thought?  Birthdays I suppose are for that very reason but I guess I've never looked at them too much for that,  so i decided we could have our own family holiday.  A yearly tradition where every year somewhere between April 26 (likely the worst day of our lives thus far, the day she entered the hospital with a questionable diagnoses of leukemia and was poked and miserable all night) to April 28 (the day she was originally diagnosed) we have a party whether big or small to celebrate her life and every life.  Each of us can be so grateful for the life we have been given whether we have fought and survived cancer to teach us the beauty of life and moments and the blessing of another day or we have never had to fight cancer or anything life threatening or lost a loved one or something life altering we can be grateful for the life we have had and th day in which we live. 

I stole this quote from the same mother who has inspired me by her courage and strength and positivity/faith in the midst of great trial. 

I'm trying to live my life this way. It is the truth, it's good to plan for tomorrow and learn from yesterday...but lets leave the living for TODAY!

So here comes my proposition...more of a dream I have really. I want all of our friends and family to celebrate with us on April 28 (or around then), but we don't currently live by sooo many of our family and friends! So....
PLEASE CELEBRATE LIFE WITH US ANYWAYS!!
THROW YOUR OWN PARTY, BIG OR SMALL! FAMILY OR FRIENDS!!! OR EVEN JUST HUSBAND AND WIFE...but CELEBRATE!
And after you celebrate I would love with all my heart if you could send me a letter, an email, some pictures or anything to document your celebration. I want to put together something or maybe just make a post about all the celebrations and show Gracie what her courage and bravery fighting cancer has taught all of us. It's not to mourn what we don't have because her sadness and frown never lasts long...she is the one that so often reminds me to smile and laugh because it's our choice to make and when tears come to my eyes or she can tell I'm sad each time she tenderly says "don't be sad mom, be happy". So be happy with us and CELEBRATE LIFE!
Hope today has been a day worth celebrating for all of you!
HAPPY NEW YEAR!! 2013 may be the best year yet for us! And I hope it is for you too!