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!!