True emotion

Well...I find myself posting some things that I think...should I share that with more than my personal journal?  But, lets face it this is my journal and my families journal so if you don't want to know my real feelings I guess this is a blog you won't want to read.  Last night I looked up at a beautiful picture of Gracie right before her 1st birthday and for the first time I felt angry.  It came out of nowhere and pierced deep.  She'll be two in a couple days and I am very excited to celebrate with her...but I guess it's kind of hard to face that things aren't what they were on her 1st birthday.  We've had a two week break I think from chemo....it's been long enough that for the first time since her chemo started that i can't tell you how many days it's been since she's had chemo.  And I don't want to calculate it or know how long it's been I just don't want to start up again next Tuesday.  I don't want to go to clinic and get her port accessed and pour more poison in her veins.  I want them to do it to me.  I dont' want to be the bad guy and see her pleading eyes look at me with tears pouring out while they poke a needle into the port I wish she didn't have to have.  I know it's better than getting a vein each week...but how many kids do you know that need to have blood drawn weekly?  And it should be that way.  I wish I didn't know any kids that did.  All the kids I do are absolute heros.  A million times stronger than I am.  They are happy and cheerful despite the difficult circumstances they are living long before they should know what it means to suffer.  I'm very grateful for A LOT of things and like I said it's the first time I've really felt angry about the situation we're in and I'm going to do my best to let go of all the negative feelings and enjoy this weekend and the good things to come.  I'm not begging for sympathy...I know each person reading this has many challenges of their own and don't want to minize any of them.  Just documenting my real emotions me and my posterity.  I guess I just don't want to put on some type of crazy glaze over everything I say in my journal (the blog) just because it's read by other people.  I believe it's ok and normal to have these types of feelings and want my kids to understand that.  It's ok to feel angry, frustrated and upset, we just have to deal with them in an appropriate way.    I couldn't be more grateful to have been given Gracie as well as Tyson...and Todd.  I have been truly blessed in my life and now I'm going to go focus on my blessings which are MANY!  Happy Weekend!  And stay posted for LOTS of birthday/halloween pictures of our super cute kids!

6 months and no clinic

Do you know that 6 months ago tomorrow (although it was a Tuesday so it seems fitting that I post today) we took a head first plunge into the deep seas of cancer?  Yep 6 months ago I heard the Dr say my daughter may have "leukemia".  Think of it...think of someone saying that word to you about your child.  The world stops.  Because you are no longer in the same world.  Two days later it officially was leukemia. 

I think she knew she needed lots of prayers (in the hospital she would fold her arms and want to say lots of super short prayers).   Can you believe how sweet she looks after several days in the hospital. 

6 months later I think WOW!!  It's been 6 months?  For six months we've done what I would have called insurmountable...I don't say it because I think I'm a great person because we haven't done it alone.  We've had LOTS of help, lots of prayers and lots of "I can't do this for another second" moments.  But guess where we are six months later?  We aren't in the hospital...we are home!  And we cancelled clinic today for the first time in 6 months (with the Dr's approval of course).  She's doing so well we got to skip her appt to check counts today.  Today I felt like things were somewhat normal...I thought about a day when I could take Gracie out and not worry...and it seemed somewhat real (that's HUGE for me).  I went to the grocery story this morning instead of clinic and the sun was shining...then I realized we've made it through the worst of her treatment.  Yes we still have 21 months left (Yuck, let's not think about that...we're on a good streak), but none of it should be quite as bad as what we've been through.  Todd's last day of his ER rotation is Friday...then it's Gracie's birthday (She's going to be 2...I know I know it looks a lot younger compared to that 21 months of treatment she's almost got another lifetime of treatment for her current age).  But I'm super excited and we're going to have a little party in the garage (cause we don't dare have friends over inside) and then it's going to be Halloween and we plan to do a little trick or treating.  I am actually a little afraid to say all those things thinking they won't happen or something will go wrong to prevent it.  But of course we will have a very fun weekend end with cold splash of reality since she's scheduled for a spinal tap and two chemos the day after Halloween...but at least we will hopefully have a great weekend before filled with a little bit of normalcy.  Then Todd will be home with us until the day after Christmas..we're way excited.  He may lose his mind a little bit...it's confining for a stay at home Mom to not go out much other than clinic/grocery shopping.  For a super busy Dad/grad student... we shall see!  Either way I think we'll have some fun...and maybe get a little more rest. 
Well Sunday we went to the temple for a little escape from the house...ended up later than we wanted so it was dark and the gates were locked...but we still had fun so here are a few pics.

Pointing to the angel Moroni 

Dad wore one of her hats to get her to wear hers to keep her head warm.  She still thinks has hair I think.  She is always taking clips out of my hair and trying to put them in hers.  I help her by putting them on top of her head and they balance until she moves or reaches up to pull it out (not to hard when it's not attached to anything).  I figure why not let her keep her innocence and enjoy her "hair" and clips. 

Life Changes

I've spent the last hour looking at pictures of the past year. 

Conclusion: This fall things are a LOT different than last fall in so many ways.

This fall I know things I didn't know last fall.

Last fall I appreciated the leaves falling and precious moments with my baby.

This fall I appreciate them even more...

Last fall I thought I had a glimpse of what pain felt like (I was WRONG)

This fall I seem to feel it far too often and much more intensely than I like.

This fall the lense I view life through is a very different kind...a kind hopefully I keep once some of this pain and heartache dies down. 

Last fall some of the leaves fell and never seemed to grow back again this fall (at least in my life it seems).  Next fall I plan on an abundance of leaves in all colors, shapes and sizes as we move onto another phase of our lives...who knows what or where that will be yet...but wherever it is I will be out exploring and enjoying each and every one of the beautiful leaves.  And I'll be sure to have both Gracie and Tyson by my side showing me just how bright they are through the lens of a child:)

My two bald babies

My two little baldies...I think they love each other:)  I know we love them!  Who ever thought I'd have two baldies after Gracie was born with so much hair?  But like Richard said..."bald is beautiful, but this child takes it to a whole new level!"  I'd have to agree...she sure makes

 bald look beautiful! 

He's getting so big, so cute!  SUPER hungry still! He's starting to coo, smile and even laugh in his sleep these days.  He still has a mean cry when he wants to as was heard MANY times tonight while Gracie was deciding she wants to be potty trained and stressing me out major touching the toilet while she's neutropenic...we seriously don't want to finish off this week with a  fever sweet girl.  Tyson was just testing his Mother's nerves and screaming as loud as possible while I tried to let her sit on it after she took her diaper off and then washing her hands so she doesn't get a fever and then tried to get her diaper back on and wash her hands again and...you get the picture.  End of the story..both kids went to bed (thankfully) and I'm relaxing on my unmade bed waiting for the sheets to dry that Tyson wet through this morning and waiting for Todd to get home from another late night at work. Boy isn't he cute...good thing!     

One of Gracie's favorite shirts she points to it over and over again and says Dog.

Playing ding-dong with Grandma.  I'd say she's a pretty lucky girl...side not that girl is not a light weight!  Grandma's swinging over 33 lbs.

He's a strong boy....guessing he'll grow up and look a little like Daddy!

Wahoo!

Today has been good overall.  Other than snoozing my alarm clock multiple times because I wasn't ready to get up at 7:15 to get ready for clinic and I was having a good dream which is totally rare for me:)  Clinic went great!  Gracie was Gracie for the most part.  The nurses and dr's were really enjoying how fun she was.  She would wave and say hi then do a few dance moves then walk around and point to something.  She was SO cute!  Until they accessed her port of course...then the tears and screaming came and I felt really awful while she looked at me and cried "MOOOOM".  We were anticipating she wouldn't need a transfusion b/c she was acting so good so the nurse tried accesssing her port and not putting the dressing on.  It took a lot of disctracting while they got the counts but so worth it b/c then they didn't have to take the dressing off after only having it on for a few min.  She is rocking this phase:)  Yep I'm super proud of my little girl!  More proud than any Mom could be!  She has been so happy for the most part and fairly energetic.  Hopefully the next 2 weeks will go similarly while Todd finishes his last 2 weeks of his ER rotation and gets home at 10 pm.  Grandma Bucher leaves tomorrow and Gracie is going to miss her like crazy.  She just loves her...I'm pretty sure it goes both ways.  We are SOO grateful, blessed and lucky to have had so much help from her.  As far as mother-in-laws go she's pretty hard to beat...and no I'm not just trying to score points.   

Clinic Stats

Weight: 15.1 kg (over 33 lbs again..she must be getting taller I guess I should pay more attn to her height they take weekly haha)

WBC: 1300

ANC: 500

HGB: 8.8 (they transfuse at 7.0)

Platelets: 273,000 (they transfuse at 10,000)

The Dr even gave me permission to call and cancel her appt next Tuesday to check counts if she look as good as she did today!  Please let her look that good because that would be AMAZING to have almost two whole weeks with no clinic....no chemo...no steroids...no dr's appts for me or Tyson...maybe I'm getting carried away.  I'm just hoping we get a break. 

Sunday we had a little party...ok not really a party but we made cupcakes and she decorated some (ok she only wanted to decorate one but she ate two) and took them to some friends and she rode in the car and got out and some of the houses ( of course we didn't go inside any of the houses) and we gave her an early birthday present.  Can't tell you what it is b/c it's not her birthday yet but she LOVES it.  We're suckers now b/c we just want to enjoy every minute we can so if it means an early birthday present we're in!

Her new slippers we got for her on our date Saturday!

Gracie enjoying her cupcake

Look how grown up she's getting...this was before I took her to go get gas in the car and for the lawn mower today...a very big deal here!

I LOVE it when she's happy!  Love it!  Love it!



Chemo from home

I guess it's a good thing I chose a somewhat medical related field for my education.  Who knew I'd be a home nurse 7 years ago when I was choosing a career.  I suppose our Father in Heaven knew.  I still can't believe how quickly life changes.  A week and a half ago after our long day at clinic when I was driving home at 8:30 pm from a 10 hour day form the oncology floor I thought WOW!  I mean really...WOW!  9 years ago driving home at night on the freeway was scary...I mean really my family would FREAK out.  Now I'm driving home at night in Portland coming home from a 10 hour day at a clinic where I layed my daughter on a bed for probably the 11th time sedated for another spinal tap then had hours of infusion and several chemos and in between fed my other baby several times with help from my mother-in-law.  I guess my fears have certainly changed in 9 years as well as what "normal" means. 
Big tangent I know...the point of this post is...WE DID IT!!  We really did...the worst of the chemos have been given and all of our at home chemo is done. 

Here's our chemo setup...consists of a sodium flush, cytarabine (chemo), another flush and heparin..oh and alcohol wipes of course to make sure it's all clean so we don't infect her port. 

The 2nd week went much better than the first...it was much less traumatic for her she cried MUCH less and I even got to snap a couple pictures of what the poor girl had to walk around with for 4 days-2 weeks in a row.  I'm sure it woudl drive me crazy.  We used the coban to keep it in place this week and it worked much better.  She hated having her shirts taken off and always said "bye-bye" and wanted a shirt put on to cover it up. 

Our last day of chemo...such a champ just watching a movie and no tears. 

Our morning routine we aren't sad to see change:)

See that sweet little boy in the background?  Such a sweet little guy hope he isn't being put on the backburner too much with all the attention we give Gracie.  We love him SOO much. 

Look at that face...tell me you expected a cancer patient to look like that (other than the bald head).  I'm always amazed how happy she can be and how much energy she has after all they do to her.  She was runnign down the hall so happy

Tyson's 2 month

Tyson had his 2 month appt Wednesday and he is a healthy little guy...with a bit of a temper and a very healthy set of lungs.  He weighed 13 lbs 8 oz and was 24 inches.  He was in the 80-85th percentile for height and weight and 70th for his head.  The Dr couldn't believe how strong he was, he always has been.  We have such a fabulous pediatrician that we used to see with Gracie and now she has a fabulous ped oncologist and Tyson see's her old pediatrician.  She was with us for over 20 min just talking about how everyone was asking about Gracie, Todd, Tyson and me.  She said she thinks about calling often, but doesn't want to take my time.  She's called probably 5 or 6 times since Gracie was diagnosed and talked 20-30 min each time.  I know I'll never be satisfied with another pediatrician.  So back to Tyson I am SO grateful for his health.  He is developing just as he should and in some ways ahead just because of how strong he is.  He does have a bit of a temper he'll be happy one second and the next screaming, then when he gets what he wants he calms down and he's smiling and even laughing sometimes.  About 4:00 this morning I was burping him and thought he was asleep and he just started laughing it was so adorable.  He loves to be held and he loves him Mom.  He seems to always want me to hold him and he still really likes nursing and eating often.  He's doing better at night in general but not quite as good since his vaccines.  He was SOO sad the day he got his shots and he just cried and cried a new cry, it was kind of a high pitched shriek.  He wouldn't even nurse he would just scream when I tried so I got him to sleep a few times and we just sat there and didn't move so he wouldn't wake up.  Once again we made it through that day and have had better days since.  The Dr recommended we keep Gracie and Tyson away and not let her kiss him and be very cautious with his diapers and wash our hands really well and such because he got the Rotavirus which is a live virus and they drink it so it comes out in diapers.  We know all about being careful with diapers b/c Gracie's chemo comes out in her diapers.  We've got a Momma's boy and Daddy's girl in this house.  At least for now. 
He's cooing and talking more and more and he's now wearing mostly 3-6 month clothes.  I got a few pictures a few days ago that are super cute so I'll post a few below.