quick hospital update

so here we are in the hosp our stay began friday at 1230 am my anxiety began when her anc unexpectedly came back low 360 at the new clinic tues and we stopped chemo.  after which i bagged all trips to the store and only let the kids play at home and outside. despite that i knew thursday as boredom took us on a long exploratory walk in our new town as we hit a crowd still not sure what the event was but i immediately turned around for some reason i felt gracies forehead and it felt hotter than normal i was prob 1.5 milrs downhill away from home and had just told a friend how tired i was. hah so here kicks in the crazy adrenaline scared for my daughters life cancer mom in me as i ran uphill  really uphill not mildly home pushing 70 lbs. i stopped a couple times for fussy kids and to check on her always kicking my self for not having a thermometer in my bag. got home 98.6 normal but high for her norm. felt slightly crazy but my intuition told me something was off and my nerves felt it. i kept checking it went up to 99 then 99.6 then half hour after we lay down  about 1230 she wakes up miserable crying and we fight to get a temp of 100.7. BOO our awesome amazing 15 month fever free streak is up its off to the hospital. the night  was MISERY as i try to remember everything to have them do and not do while trying to comfort her. no dont take a rectal temp. yes we want to access her port not try a vein. no no tylenol. why dont we have an antibiotic. insert waiting crying two chest xrays awful catheter for urine sample after a major screaming port access and highly traumatized gracie who just hours b4 we had bathed with her shirt on bc she did not want her port exposed to anyone or anything cant blame her. here comes the swab shoved way up there then another the gag her in the throat. mommy i not want to be brave. im thinking i know honey me neither but i try to smile for her since she always tells me mommy dont cry or dont be sad be happy with a huge smile. we made it through the night she fell asleep after 5 am when we got to our room. her counts had dropped anc 88 definately admitted dr w called it profound neutropenia. next day we hoped it would be up. every morninr since its been 0. they want it showing a trend of increasing prob 200 at least before we leave could be tomorrow fingers crossed or several days to a week just a waiting game. fever is gone thank heavens shes had iv antibiotics every 6 hours since admit. hard to get her to eat and drink. shes getting bored and antsy of course cant leave her room.  cant blame her a bit. she keeps her port covered at all times with her blanket and say no touch my owie and machine is persons not mine cause it keeps beeping and they come fix it but i tell her they are just fixing the machine not touching her. she finds time to smile and laugh and always greets us with a smile when we show up and a hi mom hi dad or hi buddy. love her. love tyson. love todd hes spent the last three nights here with her. my parents and julie came out feiday and have been very helpful glad to know tyson is in good hands but i miss him. he popped his fifth tooth and his sixth is on its way. its almost his birthday. i cant  believe weve all almost survived this year and how big he is. heard from a few members in the ward/church we go to and they sound like they will be a great support its a comfort and look forward to meeting and getting to know them. hoping her anc goes up for those who dont know its the absolute neutrophil counts and neutrophils are the white blood cell that fight bacterial infections. hers are a bit fat 0 meaning not a single one to fight if she gets a bacterial infection. scary and stressful for us to see them so low. i dream of some normalcy for her and all of us going to the store the park playing with friends without worrying so much or wondering what her counts are and if she touched her face each second. shes a trooper hope she can go home soon and resume our cancer "norm" with higher counts and just being home. add her to your prayers if you will we know Heavenly Father hears each prayer and gives angels to watch over these kiddos.

BIG ANNOUNCEMENT!

No I'm not pregnant and thank the high heavens for now:)  Todd passed the NAPLEX and that is big news, but it feels even bigger than I ever thought it would!  I got the letter in the mail today...of course he's at work so I called and told him!  But after I didn't expect the HUGE wave of emotion that came over me.  It's real.  Is it real?  It is real!  He graduated with his PharmD, he passed the Naplex and soon I'm sure he will have passed the law test and be a licensed pharmacist.  They say the harder you work for something the more it means, I don't think we could have worked any harder than we have and I guess I'm feeling that right now.  This last year and a half especially have been bitterly hard, and I thought things would be oh so much easier when we got down here but every day has been a test of my strength as I've tried to keep things under control so he could work and study, study more and go away to take tests as the kids and I sit in this hot, unorganized and dirty house which is now mostly clean:)  I can't believe the obstacles that have been ours from the start of this journey.  Todd has been in school spring, summer, fall, winter since the day I met him. I can hardly make a list of the things that have tested our stamina and endurance, but today the only thing that matters is that we perservered and we suceeded.  I am so incredibly proud of him.  The endless days of studying and frustrating rotations as he worried like crazy about the 3 of us whatever we may be doing whether it was cancer related, pregancy related or just normal every day stuff (imagine that).  He studied and worked at it and even regularly this last 2 weeks held Gracie in one arm as she watched a movie and he studied for hours. 
So proud of him!  So proud of our little family!  Can't wait for him to come home tonight and not study...almost sounds like a dream not reality.  Now if only we can keep the kids from getting injured or something for one day!  Gracie got hit in the lip by the swing last night after his law test and was gushing blood!  Yikes...she still is not loving eating but doing much better today. 
In other news I took the kiddos swimming this week to escape the house/heat and we all enjoyed it even thought it wiped all 3 of us out!  Maybe we'll go again next week! 

We're Here!

Well, we're here!  We've moved, at least our stuff is in boxes all over the place in our new house that I am now trying to clean so I can unpack boxes:)  At least packing and getting out of the other house and unloading the truck is over.  Our new ward was here by 7:45 am and had the truck unloaded in a flash!  Seriously seemed like half hour.  Maybe 45 minutes.  All very friendly and nice.  So I'm sure we'll like it here, but in all honestly I am a little bit homesick tonight (or maybe more than a little) for both Forest Grove and Utah.  I guess I have two homes now...soon to be three.  Right now our new house is a house but soon it will be a home I'm sure and I won't want to leave all the friends I will make here,
The weekend was rough to say the least.  Our kiddos didn't much like all the packing (or rather I should say boredom for them) and cleaning and driving and on and on.  You know whats even better than moving with young kids?  Having to worry about getting the 2 1/2 year old full about an hour before you get to new home because she's already behind on her chemo schedule even though both kids have had it from six plus hours of car(of course including stops).  Sometimes it seems all we're doing is trying to force Gracie to eat so she'll get full so we can not let her eat and force her to eat again 3 hours before bed.  Manageable on a schedule but of course both kids have been way off.  Just over a year and we'll be done with our nightly chemo!  Oh and luck of all luck (I'm sure just my body telling me it's done) I ended up sick last night.  So I'm happily sitting here with a mask to protect my kiddos.  Let's hope they don't get it.  All we need is a trip to the ER with a fever our first week here! 
Anyways hopefully I'll post some pictures in the future of the house as for now it's in no way picture ready!
Here's to a good week! 

Well, I'm WAY behind but before I pack up counts for clinic I'll do a quick recap on clinic which was last Tuesday!  Let me just say Gracie was SERIOUSLY a rockstar.  She was amazing, couldn't have done better.  We gave her zofran before we left and thankfully she didn't throw up this time.  When we got to the hospital and I got ready to put her numbing cream on her port she let me pull up her shirt with no fight and not one tear or crying, she just looked at grandpa and even gave a little smile/laugh.  And of course she was a big girl for her height/weight/blood pressure and temp!  And she got her stickers as usual!  Then she seriously rocked the access I couldn't believe my eyes.  Not a single tear just a big, brave beautiful girl.  My friend whose son is undergoing treatment for leukemia as well (3 years old) told me this quote and I love it because its so true, "many people never meet their heroes, I gave birth to mine".  I mean holy smokes she is 1 million times braver than me.  She literally sat there and watched them poke her with a needle and draw blood after 14 months of tough treatment.  She did great for her back poke, i've lost count and played while she got her Vincristine (chemo) through her port.  I just love that girl.  We started steroids that night and blessing of all blessings she did unbelievably well compared to our last pulse.  No clue why, but I'm grateful, so grateful.  She of course had her moments and the last 2 days we had to use valium a couple times, but she did great.  We were all geared up for an awful, awful time and even thought we were going to give her an antipsychotic (until we tried it the first night and she woke up 2 hours later freaking out like she was on steroids, so we thought and worried about it and in the end we decided to bag it and I'm so glad we did.  Of course on the way home for being so brave Grandpa treated Gracie to a Tinkerbell balloon (they were out of Ariel-silly helium shortage) and an ice cream treat.  Tyson was well cared for by Grandma at home.  Of course he must have felt left out b/c he had some real separation anxiety after Mom got home. 

CLINIC STATS

Weight: 38 lbs 12 oz ( a big jump-enough to raise her chemo dose a little)

Height: 3' 1 1/2"

WBC: 2.9

ANC: 1700

Hemoglobin:  11.9

Platelets: 324,000

I snuck in the first two doses of steroids through some juice gracie loves I'd sneak the pill in the tip of a straw and she would swallow the pill without knowing it...she always figures me out though.  Back to crushing but I sure enjoyed those two doses of no crushing and I was proud of my 2 year old for swallowing a pill!  What am I saying I'm proud of her for everything she does!  She's done with this pulse of steroids and starting to act a little more like herself , however tonight she ate a TON of food so we know the effects are still in force and she's not totally Gracie yet. 

Oh and BIG NEWS!!  Todd finished school officially last Thursday!!  WOOHHOOOOOO!!  He started his job today.  So he is officially working and completed his first day of work!  We move down on Friday.  Off to pack somemore!!

Just a plug for Tyson I'll post some pictures soon I got some SUPER cute ones of him and he is almost 11 months.  WOW!  A big strong active boy.  He always wants to be doing what Gracie is now and finally broke his two top teeth, they were pretty brutal.  UP and down and up and down.  Hope they are down to stay.  He gnawed through the tissue with his bottom two and had a bruise before that.  He is so super cute though and getting around EVERYWHERE.  He may be walking before long.  Love my kids!!  I am one lucky Mom and wife!!

Pain and gratitude

Tonight as Todd and Gracie were out shopping and Tyson was asleep as I worked in the kitchen cooking/cleaning my mind and mostly my heart went out into the realm of close friends/family I have that are currently suffering and enduring much pain and hardship.  I of course thought of a sweet boy who has the same type of leukemia Gracie does and today had the longest/most chemo intensive day we had a clinic in all of her treatment.  He had to fast from 9-3 spending almost all of that time at the hospital.  He’s 3.  He’s amazing, he’s a fighter, a hero.  He’s battling the beast and I pray every day he will win and Gracie too.  I pray for other little cancer cuties fighting the same thing to.  He heart hurts and aches for the kids and their siblings and of course their parents as I know exactly how they feel, or mostly.  I’m sure we  all process it a little different.  I thought of sweet Jace who has passed on.  He would be 3 tomorrow.  He’s amazing and he’s another hero of mine, so is his Mom.  They teach people every day what matters and what doesn’t and how to be strong and have faith and rely on the Lord.  I thought of my best friend growing up, my cousin who has been through many difficult things but recently lost his son he had waited years for after being chosen to adopt and the baby didn’t make it.  We got married within a few months of each other our trials have been very different but maybe similar in some ways.  I was blessed with two children quickly and have watched my baby suffer and feared I might lose her, he has longed for a baby in his arms and my fear is his reality.  I hope they will be blessed with a baby soon.  Please check out their adoption blog here and pass it on to anyone you know considering adoption.  They will make amazing parents and I look forward to the day when I see him tenderly loving his child along with his sweet wife (who will never be seen without a smile on her face, seriously what better trait than that for a mother).  

The list goes on of course, it seems each person has their own trials and many so painful and heart breaking.  But of course soul building, bringing us down to our knees so the Lord can raise us up into when He knows we can become.  As much as it hurts to think of the pain each of these friends and others suffer, I felt a sense of gratitude.  I have been blessed to have such strength to surround me.  To have friends with great courage and strength; faith and hope.  Who suffer and don’t deny God, but turn to him for succor.  They drop to their knees and in moments of desperation and great pain, plead for God’s help, and he gives them strength to take one more step, and sometimes take one more breath. 

And gratitude most of all that we have a Heavenly Father who loves me and all of us.  He listens to every word we pray and answers those prayers in the timing that is best for us, and in a way that will help us most in become what He knows we can become. 

Gracie dancing!

Whew...a catch up!

So it turns out I'm WAY behind on blogging...but I have spent a lot of wonderful time with my kids this week:)  So I guess its' a fair trade!  I'll bag the real catch up b/c with all that's going on I know I'll never catch up before we move, and there's a lot going on before that so here's a quick list of updates!
1. Todd graduated!!!!!!!!!!  Ok well, he walked!!!  And he will graduate in 4 weeks officially!  It's seems totally surreal and unbelievable!  I've spent my entire life in school!  He has worked so hard and earned every piece of this degree.  Introducing our new (almost...but only b/c he put his family first) pharmacist!

We are very proud of you Todd!  I am still hoping to get a family picture with both kids...Tyson was asleep during each picture session or not present, but both kids have been with us through this process and I really want to document it:)  However I'm thinking of doing some pictur es when my parents are here (the week he's actually done)then we can get one with them to.  Of course our families and friends have been a major support this year particularly in allowing us to complete this major accomplishment.  So thank you to both sets of parents and everyone else who has helped us. 

2.Tyson turned 9 months old (yes, now almost 10)-he's turning into a big handsome boy right before me very eyes and I have loved this last week with him.  Yes, he's busy and into EVERYTHING:)  But this past week has been a great one with the kids and I've loved watching learn so much this week.  On monday he said "mama" for the first time  I remember when I went in to go get him after a nap.  When Todd went in the next morning he said "dada" he doesn't always get it right but it's very cute when he does.  He's also saying "nana" often.  He has gotten up on his knees with his crawling instead of army crawling as he has been and is now pulling himself up, on everything:) Yes, he's had many falls and bonks.  I have to watch him close b/c he loves cords and putting his hands in the electric heat vents (yikes) we try to barracade him into an area and he typically uses the barracades and stands up on them and often pulls them onto himself (like the racecar track).  One of his favorite toys now is Gracie's doll house which he loves to pull himself up on and stand up.  She of course runs over and says "no, tyson, no buddy" hmm...I wonder where she's heard that?  Or "no bubba", yes I admit I say that I'm not sure why it just comes out.  He has slept through the night (last night from 8 pm to 7:15 am) and he is just incredibly handsome and totally fascinated by everything around him.  He absolutely loves Gracie's "I Am a Child of God" movie and I read him an animal book before each nap and bedtime and help him feel the fuzzy fur, he always lets out a little laugh with the first page, a kitten.  At his 9 month appt he was 31 inches tall (off the charts, no surprise there and 22 lbs 13 oz.  And best of all...HEALTHY!!   I am so, so grateful he's healthy and happy.  In fact most the time when he climbs up on things I can hardly feel tired or frustrated that I have to move him again or stop him from getting hurt b/c I'm so grateful he's healthy and growing and developing well, it is such an incredible blessing. 

First bike ride...both both kids I think!

Climbing Gracie's doll house.

3. For the very first time in OVER a year our whole family has a shedule/routine. I know right who knew a person could be so grateful for a schedule. It involves me running nonstop from morning to night but feels SO good. Seriously it's amazing. The whole deal from wake up, to breakfast, nap, laundry, lunch, cleaning, play time, more naps, snacks, chemo, dinner, bedtime:) Yes we eat dinner now at 8 or 8:30 pm but I LOVE IT!! It means no more pre bed time snack and family dinner...minus Tyson who is in bed minutes before we eat. So even though we love him so much, we can actually kind of sit and eat and talk. Last night he slept from 8 pm to 7:15 am. Amazing and a big deal for him and all of us. And we even have some exercise scheduled in...plus we're sleeping more, or at least I am:)

4. Clinic and Gracie passed her mark of only having 14 months left of treatment.  Now we are close to 13.  She is growing up big time...and look at her hair!  We love it...and as always she got more comments on clinic, they all love her cute hair and everything else about her.  She is talking up a storm, knows her alphabet and counts from 1-12 then skips to 18:)  She can sing several songs.  I think today she sang almost all of I am a Child of God, and knows most of the Itsy Bitsy Spider-both favorites of hers.  She has really liked Little Miss Muffet lately and her comments make us laugh EVERY day.  She is funny.  Today at church (we are enjoying taking the kids to church and goign together) she pointed to a member of the bishopric and said "prophet"  then she told Todd pointing to the Bishop on the stand "that mans the Bishop".  She wanted to go up on the stand so she convinced Todd to take her up and bear his testimony, it was cute.  She loves doing "cheers" with any cup/glass and when we pulled out our glasses with sparkling cider she insisted on having a  special glass, with milk.  We really enjoy talking with her at dinner.  She knows she is two and her first and last name.  She talks of different family members and friends often and still loves and needs to cuddle regularly.  In the morning, after nap and as soon as Dad gets home.  She takes her medicine like a champ.  Holds it herself sucks it out of the syringe then says "yay" and starts clapping as we all follow her cue and join in!  She loves to be outside and reading books especially "Bernstein Bears".  Every night when we read scriptures we pull out her child version of the Book of Mormon and try to read a new story, but to no avail she each night repeats "the brass plates" until we again read the story of the brass plates after laughing at how funny it is she wants to hear it again and how persistent in not being willing to hear another one.  When she wants something explained to her in a pictures she points to it and says "eh-eh-eh-eh" over and over until we tell her what it is.  We passed her 2 1/2 year mark in April and she is definately a sponge and repeats things we say every day. 
She was a ROCKSTAR at clinic!  The poor girl threw up...again right when we pulled into the parking stall the whole way I was glancing back in the mirror cause she looked green to me, I guess my mother's instincts were right this time, but I thought we were safe when we got there and after distracting the whole way when I was telling my friend where to park, she was so kind to come with us and hold Tyson and entertain him so I could focuse on Gracie she threw up.  But, she was the best yet with her port access.  I was in total awe.  She started a big fit initially then totally calmed down, I loved the nurse.  We've never had her before and she gave her pictures of her dog and kids, such a great idea so I asked Gracie questions about the pictures the whole time and she would answer them.  Yes she was answering questions (of course binky in mouth) while she was having her port touched and needle poked in it.  Usually it's a huge ordeal and she is totally angry the whole time...what can I say I'm proud of her, AGAIN!  She's amazing!  Her counts were right on track to stay on her same chemo dose in the range they want it.  Lower than last time, but it's normal to fluctuate.

Clinic Stats

WBC: 2.1 ( ithink)

Hemoglobin: 11.7

ANC: 900

Platelets: over 200,000

Weight 36 lbs 9 oz

Height 3' 1"

Now for some pictures:)



Her fun little bug catcher that she uses to "catch flowers", she loves picking flowers and playing at ther park.  Oh and climbing stairs.

Loves her sunglasses and her eyes seem sensitive to the sun, she often asks me for them and says it's bright.

Wish we had a piano, this girl LOVES pianos and music and dancing.  We went to the LDS temple visitors center and really enjoyed it.  They even let her play the piano:)

She found her swimsuit bottoms and came out wearing them on her top, I thought it was so funny!

She wants to wear the funniest combos sometimes, oh and always has to have a clean pair of socks after her bath at night and in the morning when she gets dressed.

Outside in the sprinklers!

I love these because they remind of her she loves them and her happy with them make me think wishes and dreams can come true.

Our pretty princess on graduation day!

• 5.  We went to a carnival sponsored by the CCA and it was such a fabulous event.  I was a little worried when we got there she turned and hid in me and then Tyson started crying.  But by the end she was the happiest I'd seen her in maybe ever.  She danced her little heart out, seriously with no regard for anyone else around her.  I got a few videos but never have luck posting videos so we'll see if we get them up.  It was a night of joy for me watching her dance and be happy and live life like a normal healthy child:)
•