Glad to be home again...

I should be folding my giant stack of laundry I've been washing since last night...but at least it's clean right?  And I have another load in the washer/Tyson's sleeping so technically I'm multi-tasking right?  But...

This little angel gave us ANOTHER scare...it must be in her nature I'm waiting to find out if it's always going to be her or if Tyson is going to join in on the fun soon.  She fell yesterday when we were out playing/walking/running at Pacific on a ramp and I guess it was a little too wet (around 11:30 am).  I walked around the corner and found a little relaxation type walkway...odd dont' you think as soon as I started walking the pathway and trying to relax for a few min (somethng I'm terrible at now...surprise surprise) Todd somes around the corner holding a SCREAMING Gracie...she seemed to be in shock.  He turned for a second and missed her fall but she must have slid under the side railing and off the ramp (only about a 2 ft fall) and with no real bump on her head that we can see ended up with a concussion.  (Thank heavens it was only that)  We finally calmed her down and assessed her and everything seemed ok no broken bones etc she had  a nap then lunch.  And I finally dragged my tired little body off the grocery store (around 4:15 pm).  When I was about half through my shopping I get a call....of course she's now vomiting.  So for the 2nd time I left my cart and ran as fast as I could out of the store and headed home for another delightful trip to the ER.  Thankfully my good friend came to the rescue and was there to watch tyson within about 10 min of getting my call...not far behind me.  Let me tell you our 45 min drive to the ER is not a favorite past time for us and gives us plenty of flashbacks of times past.  Then of course we got stuck in the tunnel as she's crying and vomiting again.  Todd gave her a Priesthood blessing before we left and felt she would be ok once again.  I am so incredibly thankful for the power of the Priesthood.  We finally made it and in the waiting room she was ok for few min then she started crying and such again we knew she was going to throw up again.  We had 4 blankets to catch it with and the filled room seemed to be starting at us.  As we waited a family walked out and the mom covered her nose as she walked by and said "ewww gross it smells like vomit, yuck".  We called the nursing station after waiting a while and they said they'd send the nurse right out of course we waited for another 5-10 min.  Another reason why we HATE weekends at the ER.  She was of course fearful the whole time and hated the blood pressure and everything else.  The poor girl was constantly covering her port and saying hurt hurt.  Makes me so sad she's had so much  trauma and she's only 2.  We added a CT scan to her enormous list of medical things she's had done at the young age of 2 that her Mother, Father and most adults have never had done.  We both sat there watching wishing for once it could be us instead of her.  We were able to get some zofran in her and opted for some nasal Versed prior to the CT scan she's proven over and over what a fighter she is and we knew there was no way she's lay still and didn't want to have to redo it and double the radiation and trauma.  Thank God it came back negative there was no bleeding and it was just a concussion we came home just after 10 pm and were so glad to be home and not staying another night in the hospital.  Todd slept with her just to be safe and said she slept great and woke up and crawled off the bed by hersel and came out to play.  May sound normal to most of you with a 2 year old but that's not our sweet Gracie...she's missed a developmental transition or 2 and almost always wakes up crying and waiting for someone to come hold her and comfort her.  She's been happy and active today.  So glad to have her back to herself again...now add to the list of worries for this Mama dont' let her hit her head again for the next few weeks and try not to make her think to much it might give her a bigger headache:)  But she's the sweetest little girl in the whole world and of course we wouldn't trade all the worry in the world for her.  I spent the last 3 hours laying with Tyson and playing with him want to make sure I don't miss out on him b/c I'm too busy worrying about Gracie.  Of all the worries that have come one thing we have to come to appreciate is the simple joys we experience including singing songs with her and doing This Little Piggy... at the hospital with her last night. 

6 mo appt for Tyson

No surprise our big boy measured big at his 6 month appt yesterday morning.  He just keeps growing!e

Stats

Weight: 20 lbs 13 oz (92%tile)

Height: 29 1/4 inches (off the charts)

Head: I think it was just over 17 and 80th percentile

Cute Tyson dressed up on a Sunday recently.

Lucky I caught him before he rolled again:)

Just doing his crunches at the Dr...I belive we're going to have a very handsome, strong boy on our hands:)  I better be careful and treat him well so we're always on the same team!  I love this little guy more every day and am SOOOO incredibly thankful for his good health (although my cancer Mom crazy mind naturally thinks when he turns 18 months the same thing will happen to him...or something else around that time...sound crazy well it probably is but I just might be a little crazier than I used to be.  YES I know for all of you wondering the chances are extremely low that a sibling would end up with ALL but does it happen sure heard of a mother with 2 boys both with ALL the other day.  And since the odds of Gracie ending up with Leukemia are also extremely low...lets just say statistics don't mean a heck of a lot to this mother its either 100% change or 0% when it my child either they have it or they don't. )

He got 4 shots and the rotavirus to drink.  He got a flu shot just to be safe for Gracie and him.  He's had a low grade fever today and I'm telling myself just to assume it's the vaccines (I'm sure it is) and not be a major worry wort cause Gracie can't get that.  He's been fussy and didn't sleep well last night but hopefully another day and he'll be happier and feeling better.  As we now know...it could be worse. 
He's looking so much older to me these days.  And cute as a button! 

6 months/17 months

Confused?  I think about the 5th of the month often it indicates the month mark for Tyson's first year and the months left for Gracie's treatment.
Tyson is 6 months old today!  What a sweet little boy he is.  We LOVE him so much.  He had his first taste of rice cereal about 2 1/2 weeks ago and loved it when it was mixed with breastmilk.  Liked it ok with formula (who wants to pump every day for cereal) and really seems to like the squash/sweet potatoes he's had.  He no longer wants rice cereal unless it's mixed with the vegetables. 
He is extremely vocal.  Often I have to wait for a time before I can explain something to Todd or even Gracie because he's just looking at us and cooing soo loudly.  It's kind of funny but it seriously is loud.  Cute boy.  He's starting to scooch his feet forward and push his bum in the air.  He rolls all over and seems to have a strong connection with Mom.  He sees me everywhere I go and typically wants to be held. 

Gracie loves to help with EVERYTHING and loves Tyson!

Gracie has 17 months of treatment left today...the countdown continues. 

This is what happens when you work on a sleep schedule that stops at 18 months old and doesn't start again for 9 months...haha jokes on us she doesn't remember EVER having one.  But I'm happy to report things are MONUMENTALLY better than they were for those 9 months.  It's taken me LOTS of work and LOTS of keeping her awake for MANY hours and waking her up etc but she now sleeps typically from 10-4 or even longer without waking up yes we usually lay by her til she falls asleep but we'll take it.  At least she doesnt' think its a nap and wake up 2 hours later for several hours in the middle of the night. 

Gracie found her old car seat and decided to put it next to him and lay in it while I was packing for the park.  Those cute little kids melt my  heart....I love them to pieces.  We spent every sunny day at the park this week, and all enjoyed it!!  Hoping for more park time this week!  Tyson even had his first try at the swing at the park on Saturday and both Tyson and Gracie enjoyed it!

My thought for the week by Elder Maxwell

"Trials and tribulations tend to squeeze the artificiality out of us, leaving the essence of what we really are and clarifying what we really yearn for."

Clinic (month 2 of maintenance)

Yesterday was LONG.  I felt like I'd lived 2 days in a few hours.  We got up and were getting ready...I fed Tyson, showered and got ready, pumped so I could leave him home with Grandma B and was getting the diaper bag ready and saw Todd's lunch on the table ran to give it to him hoping he hadn't pulled out yet and he was heading for the door but said no it's not my lunch the car won't start.  Spend time with that then came back in to finish packing...realized my wallet was missing!  Searched and searched and finally Lesli found in on top of the fridge...ay yay yay how did it get there?  Get settled into the car and head to clinic...get to clinic and there is ONE  I repeat ONE parking spot that I think I'm going to take but a car that passed it decides they really want it so they refuse to move until I back up so that can pull into it.  Head over to the parking garage pass in hand and...NO PARKING.  Seriously none call the oncology clinic and they say sorry wish we could help you but there's nothing we can do.  I drove up and down the 6 level garage probably 2-3 times then finally found one tiny little spot between a large van and an explorer.  I'm thinking is it really only 11:15?  Seems like bedtime to me.  We made it to clinic and back without too much else. 
Gracie SCREAMED and cried while they accessed her port of course she detests it and refused to really even look at the dr and nurses.  We didn't even have to do the dressing b/c it was just a count check since she's on study and didn't get chemo through her port.  But she's getting older and smarter and knows for sure, absolutely 100% she does not like her port bothered or being even so much as looked at by a dr or nurse.  To avoid the awfulness after getting accessed and screaming herself to exhaustion..she fell asleep on mommy's lap while mommy asked the Dr her long list of questions to make sure no tiny detail is missed and everything is done as well as possible to ensure a good, long quality life for her Gracie.  (many of the questions courtesy of Dad who is more knowlegeable than Mom on many things).  The Dr said they've had several fathers of children who were Dr's and that can be difficult for the Dad's but she thinks being a pharmacist would be the worst because they have a much deeper understanding of the drugs than the Dr's, they understand how they work on a deeper level... I agree.  Not that it matters to anyone else reading this...but seriously I think about how much I worry about some of these things and boy I just have to say poor Todd sometimes ignorance is bliss.  There is no ignorance for that poor guy when it comes to the drugs he feels responsible to the very core to make sure nothing is missed that could give her a better life.  It can be extremely stressful but I'm deep down very grateful for his incredible love for his children and desire to give her a great life.

Clinic Stats

Weight: 33 ish lbs

Height 3'

ANC: 1200

Hemoglobin: 10.3

Platelets: around 300,000

Cheryl's visit-a few months late

My fabulous sister Cheryl visited and HELPED while Todd went to Marc and Tiffani's wedding.  We wished we all could have gone to the wedding and snuck a visit in to my family while we were there...but she made it fun for us while Todd was gone.  Gracie took to her so well...you never know anymore how she'll react to people but we had lots of fun visiting, playing with Gracie and I think she enjoyed holding Tyson.  She didn't get away with just sitting and relaxing like I'd like to give her since she's always working so hard at home, but I was very grateful to have some time to visit with her and for her saving me since neither of the kids were sleeping very well at the time.  I'm pretty sure (my mind fails me at times) she took Gracie duty at night and in the morning and I took Tyson since he was nursing. 

Gracie wasn't too interested in pictures...but Tyson sure took a cute one with Cheryl.

Aunt Cheryl brought Gracie some playdough for her birthday.  Crazy to see how much less hair she seems to have just back a couple months ago...not that she has a ton now but it is definately on it's way back in!  Beautiful no matter what though!  Oh the playdough is still a hit and she asks for it regularly it's hidden in a high cupboard but thankfully for Mommy's sake she likes to get it out and sort through all the things and move them around and now always actually play with the play dough!  Thanks for the visit and fun Cheryl!

Clinic and thoughts

I have a lot of catching up to do with Christmas and other things but of course yesterday was clinic day.  We have all come to LOVE clinic day.  Ok I'll be honest I think we all dread it as much as Gracie dreads her port access...and we all want to cry "hurt, hurt" when we know she has to be accessed and how much anxiety it causes her.  But we're learning to endure and trying to endure well.  We just had to check counts yesterday...no chemo other than the at home stuff we do. 

Clinic Stats

Height: 3' 0" yep she's hit a new mark

Weight: she's just over 33 lbs

ANC: 653 ( a little lower than they like but not enough to alter her dose of chemo-I guess on study the low is 500 and standard treatment would be 750)

Hemoglobin: 11.4

Platelets: over 400,000

We did meet a new friend Jack at clinic...actually probably the first real friend we've met at clinic.  He was recently diagnosed with the same thing Gracie has and I was put in contact with his Mom through a friend.  It was nice to meet them...yet sad because it means that sweet unsuspecting families life has just changed forever.  Just so hard to know others are starting the same journey we are in right now. 

Lately I have felt somewhat sickened by the materialism in the world.  I read about a girl that just died of leukemia and as I finally had time to run errands last night I'd needed to for weeks and was walking through stores filled with the materialism of the world ( I know we still have necessities) I just felt sick knowing I have had moments in life where I felt like I "needed" or just really wanted some of those things.  Or moments where I thought  "I wonder what that person thinks about me".  It was another moment in time where I realized what matters in life...the reality that there are so few things that matter.  A mother lost her innocent child...it happens probably every day for someone.  How can I worry about such insigificant things when all throughout the world such things are happening.  I just wanted to write this down in hopes that in 20 years when Gracie is hopefully graduating college or still alive and fulfilling dreams of her own I can remember some of the things I learned from her and these other tiny heroes.  How fragile life is...and I hope when I read this in 20 years I will feel the same as I do right this moment...material things don't matter.  All we need is enough to get by and beyond that I hope I never let any item no matter how great the material value exceed the feelings of a human heart. 

I hope tomorrow and every day that I spend with my little angels I will think what an honor it is to be their mother and spend my day enjoying each little moment...doing puzzles over and over and holding Gracie in my arms as she falls asleep, seeing Tyson search the room for me and his entire face light up with the worlds biggest smile...listening to his giggle and seeing him stuck in the corner again or under the couch cause he just can't stop rolling and rolling.  May God grant me the wisdom to see each diaper change/feeding/and stressful moment as a gift from Him.  An honor and a blessing to be caring for His children.  Whoever said being a mother is a thankless job was wrong...we just have to listen with our hearts.   When I leave the room and hear Gracie call "mom" and realize she just wants to know I'm there she's saying thank you, I love you.  And Tyson's big eyes searching for me...says thank you, I love you, no one could ever replace you.  I'd have to say this year has taught me something I was very wrong about.  I actually thought at one point I had the harder job...laugh if you will.  I know we all learn at some point.  I thought Todd should be grateful when he got home I had worked so hard taking care of the kids all day.  I finally realized...boy was I mixed up.  I should be thanking him every single day for giving me the gift of spending every single one of those hours with my kids.  For letting me be the one to enjoy their firsts, seconds and hundreth time of doing everything. While he faces the competitive and condescending nature of the world I get to stay home where I could not be more loved and appreciated.  No job could I receive greater recognition than to hear "mom" over and over until my face appears.  Now to remember that each morning when I wake up:)  Thank you Todd for working so hard so I can be home.  Thank you Father in Heaven for giving me a good husband and 2 sweet children.  Thank you Gracie and Tyson for your unconditional love and teaching me things I could never have learned without being your Mother.  And thank you to our mothers and fathers for raising us to be capable adults, so we can do the same for our children.

Maintenance

We officially started Maintenance January 3, 2012 and will finish July 5, 2013.  Sounds long huh...at least we're started.  Todd saved the day and took Gracie to clinic because I was worn out physically (our sweet angel Gracie has been an insomniac with a never predictable schedule since she first started steroids back in May) and was up most of the hours of 1:30-4 am. Why well because bedtime anytime before 10 pm is not bedtime it is a nap:)  Well lack of sleep, dread of sedation and yet ANOTHER day of clinic combined with having another Dr not ours and especially a spinal tap just weren't a good combo for me that day.  Todd agreed without me having to persuade him to take her so I could stay home and relax with Tyson...I was really thinking I needed to take the only chance I had as Todd is working Saturday instead of Tuesday and due to our strange schedule gets home about 7:30.  Did I mention our fabulous pill crushing schedule right now?  I crush her Dex (steroid) in the morning and give it with breakfast (taken with food)...then I try to somehow schedule her 6MP (chemo) around her not eating for 2 hours before or 1 hour after (no food) meaning this mama can't cook until the times up and is somehow then supposed to get her a snack cause she's starving and I've already been holding her off for the last half hour (yes the steroids are already kicking in the hunger) keep Tyson happy and start dinner!  Well lets just say I finally ate dinner around 8:45...after Tyson was in bed for the night.  Before which I crushed my third and final pill of the day...another round of Dex (steroid).  I know it sounds silly but washing that darn  mortal and pestle along with the 2 syringes I use each time I crush can be quite the fun activity :)  If only I could do it one more time today...well lucky me I think i'll be able to crush the melatonin since she's having a hard time sleeping from the steroid! 
All jokes aside I'm glad to have another day of steroid down and know that my Father in Heaven was very aware of our fasting and prayers and has blessed us immensely in only doing steroids every 3 months instead of every month.  I mean the whole taking a pill with food, then no food for 3 hours, then with food again at night seems to take the whole day in planning...and crushing.  Anything for my Gracie of course but at the end of the day you have a very pooped Mama! 
So she passed counts to start Maintenance and we go back in two weeks to check counts.  Gracie did ok at clinic or so I hear...of course she doesn't like it and I guess the sedation got pushed back half hour.  You just never know.

 Clinic Stats

Weight: 15.0 kg

WBC: 3.8

ANC: 1500

Hemoglobin: 12.1

Platelets: over 400,000

After we got both bandaids off from her port/back that's always a chore she HATES bandaids I noticed three little pokes on her back in a line where the spinal tap was done.  It made me really sad I guess they must have poked her 3 times before they got the right spot.  Thankfully we have 3 months off before we do it again I think that was the 12th (maybe 13th time).

On an extremely bright note Gracie, Tyson and I have braved the rain, slight cold and gone to the park the last 2 days.  Maybe that's why I'm so tired at the end of the day haha but that's for sure worth it because I have locked the memories in my mind forever and love doing things for her that she enjoys especially after so long of not doing anything it's a treat for all of us to explore the park together. 

Todd went back to his rotations last Monday and we miss him but I've had a great time exploring life with the kids...I just love trying to see things from their perspective and listening to Gracie say new words she hears from movies or things I say and repeat them...or run around and around and around the chair in the family room.  I love watching Tyson roll across the entire room or after putting him in the jumperoo I look over and give him my undivided attention he just smiles and smiles like I'm the center of the universe ( I'll enjoy it while I can...cause it's the truth I'm lucky enough to be just that for him right now).  I LOVE getting in the car and driving to the park and hearing Gracie say "fun" over and over.  And occasionally I like looking around and seeing that the reason out house isn't in order is because I spent time enjoying the kids instead of stressing every second over undone household chores.  So despite the pills, clinic and chemo I have a pretty fantastic life.  And the 3 people I share the ups and downs with every day couldn't be traded for anything including a fountain of health...that says a lot given our current battle with cancer (I can't say youth given that we now know youth is not without it's challenges...Gracie's a testament).  Well time to go tackle the kitchen...but while I do it I'll think of the time stopping moments of today and hope they come back to mind 20, 40 and 60 years from now!

Thanks to each person who has helped us in anyway from our journey of diagnosis to maintenance.  There are so many it seems impossible to personally thank each one...so if you're reading this THANK YOU!!