Clinic...

Just the word clinic causes increased anxiety for any cancer mom/dad I'm pretty sure. At least I know it does at this house.  In order to make it to the 10:00 appt which is the latest they have been willing to give us we should leave by 8:20, difficult when the patient rarely awakes before 8:30 and does not like to be bothered for quite some time after waking.  And she knows by now just exactly where she is headed and repeats over and over "I not want to go to hospital", " I not want to be brabe" yes she says brabe, it's pretty cute and "I not want a prize".  So as is no surprise by the description she was not out the door much before 9:00 despite our best efforts to wake her...I'm seeing a challenge when she starts school :) So her counts were high enough to continue chemo tonight...but low enough to have us worried and trying to prevent another repeat of her last week long hospital stay.  She seems to be trending down again and long story short we are thinking the chemo dose is a little too high for her little body or her marrow is slowing down possibly making the chemo dose too high etc.  So the Dr told us to definately have her counts checked in two weeks and gave us a prescription for counts to have them taken any time we feel we want them.  So we'll probably have them taken in a week.  It's always so hard for me to make these decisions b/c she hates getting accessed.  She did well today Todd says, he took her and sounds like it went well but of course we gave her zofran and valium before she left which seems to help her. 
However, we FINALLY got her playing outside with the water table etc and bathing with her shirt off... and its back to the same old game crying, screaming terrified sweet girl who wants to "cober up her owie" and get a new shirt on.  She showered unhappilly with Todd with her shirt on and I had to have a new shirt ready to immediately put on to switch with the soaking wet one.  Hurts to think about...I wonder what her little brain and body is going through to be so terrified around her own parents to not even take her shirt off to shower.  How afraid she must feel.  I pray she will forget most of this but feel she's now old enough to remember.  She has now made herself a "new bed" on the couch where she has a large heavy quilt that she puts over her as well as her "white blanket from grandma".  She didn't even want to go out and play outside tonight we pretty much had to force her out. 
Her ANC was 760 today, and hemoglobin was 11.6 I believe.  Low on exact details since I was home with Tyson and getting our garage fixed finally.  I guess another clinic visit down and closer to the day we dont have to do this anymore and maybe we'll actually feel comfortable taking her on a trip or to go visit family.  Gets hard missing out on so many events and her not seeing any of her cousins and us not seeing many family members, but I don't dare take her to Utah every time we visited she got sick, and a vacation isn't a vacation in a hospital.  Plus crazy old mom has some terribly irrational emotions about going back to utah since the last time was so rough and right before she was diagnosed.  All her cancer symptoms started then and I was so oblivious to what was coming.  Some day...one step at a time.  One day closer...my new motto!  Every day we are one day closer!  Until then I pray every day for heavens help!

Tyson Todd

The moment this sweet boy was born was perfect...it was everything I ever could have imagined it to be!  It was definately a moment where life is so good and you know miracles do still happen.  I didn't want to stop holding him...as a result we both ended up with the nasty meconium all over, I couldn't even do anything but laugh about it as gross as it was because he was so perfect, but I finally gave in and let them take him for a few minutes once we realized so he could get cleaned off.  But truly I didn't want to let him go.  He'd been through a war in the womb with me.  I almost couldn't believe he could come out so healthy and perfect after how difficult the last 3 months had been.  He was born strong though, I know that. 
On his birthday Sunday, my feelings were very tender.  It was a big day and milestone for all of us as a family I think, but I was literally awestruck that we had all survived the year together.  There were frustrations for me that day such as chemo and other cancer things that always alter our ideal plans and what I'd like to do, but I have tried to not focus on that and decided next year I want to take him out for his birthday (ok just part of it, we'll still have a family party) and spend some one on one time with me, maybe Todd will come too, but he so deserves it.  Hopefully I can do it a time or two before his second birthday, but somehow it made me feel better about things. 
This boy is a ball of energy...exhausting every day, but thanks to our challenges I thank God each day for his energy because it tells me he's healthy!  What a blessing!  He's tall and strong (seriously he pulled himself up on the edge of the table yesterday his feet were literally off the ground) and incredibly handsome...yes he takes after his Dad I think they look a lot a like and most everyone else does to.  Lucky he took his name then!  His eyes melt me, every time he looks into my eyes with his sweet brown eyes I fall totally in love with my little boy again.  I can't wait to watch him grown and learn and hopefully soon walk.  He's so close, but a little gun shy...it'll happen soon enough. 
I made sure to find a few of what I call "perfect moments" with him on his birthday!  My favorite was his rolling giggle at bath time his birthday night as we played peek-a-boo.  Just me and Tyson.  Gracie is normally the ONLY one that can make him laugh like that, it's a contagious uncontrollable laugh.  Every time I mentally chalk it up as a "perfect moment" nothing could be more perfect.  But this time was special, it was just us.  I imagine he'll grow up to be tall and handsome just like his father and probably have his father's same need to get out his energy.
Tyson LOVES when his Dad plays with him.  Every night when Dad gets home he cries til he gets to see him, so I recently started throwing him in the shower with Todd after he gets clean and he loves it.  He loves being thrown high in the air and hanging over dad's head.  He is into everything all the time and never wants to stop or be held.  He loves being outside and doing EVERYTHING big sis does to her dismay and great joy.  Every time he left that week in the hospital she would say "I want my brother".  He adores...seriously adores Gracie.  Like I said her silly nonsense makes him giggle uncontrollably and it is perfect, so perfect.  He is an AMAZING eater, he loves to eat and he eats well.  He'll eat just about anything.  Lately he loves blueberries and of course many other things.  He's hungry most the time...not uncommon around this house.  He loves bathtime and loves Gracie's bath time more he just laughs and laughs watching her take a bath.  He's loved swimming the few times we have gone. 
He has worn me out every single day of this year...except the few days I haven't spent with him in which Gracie has (usually cause i'm in the hospital with her and miss him like crazy when I don't get to see him) but I can't think of a day he hasn't made me smile.  I wondered how we would handle another child on top of cancer, but know that heaven above knew that we needed him to handle cancer.  To make Gracie smile, me smile and Todd smile.  To give us something positive to think about, not just dismal cancer.  11 months from Tyson's birthday Gracie will be off treatment.  I know right...almost sounds short.  And Tyson will have helped us get through with a smile on our faces.  Gracie as well, but we needed them both and I'm so thankful he is here with us even when I'm so tired my vision blurs and my head pounds. 
Thank you for being the best son a mother could have.  I truly look forward to every day and every year I get with you.  I hope it is many.  You are a true joy!!!!!   Happy 1st Birthday brother!
Pictures to come...

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.