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.

Clinic

Whew what a morning.  Woke up at 7:15...yes late I guess I was too tired to hear my alarm.  Even though I was only up once to feed Tyson after going to bed around midnight (the past 2 nights he has been sleeping one five hour block...so nice...I'm grateful although don't expect it to last) I was still feeling pretty exhausted.  Maybe it has to do with the fact that I finally got the garage all cleaned out and organized Monday so both cars could fit and got the kitchen cupboards organized too. Glad I was able to get it done though.  So I hurried to get ready and feed Tyson and pump before we were supposed to leave at 8.  No we didn't leave at 8.  I finally woke Gracie at 8 and tried to get her to hurry and eat (doesn't happen) so we tried to be patient with her while she slowly ate and put her numbing cream on her port and changed her.  I think we left a little after 8:30.  Todd drove separate so he could go straight to his rotation after since it's in portland and Grandma stayed home with Tyson.
About half hour into the drive I heard Gracie gag in the backseat and turned to look real quick and saw she had thrown up.  Since we were running so late anyway for her 9:00 appt and we were only about 10 minutes away and I HATE pulling over on the freeway something about it scares me...maybe the cars whizzing by at fast speeds (even though it wasn't too fast b/c of traffic...must of been cause there were SOO many cars).  As soon as I made that split second decision she started throwing up again and again and again and it was just pouring out of her mouth all over her shirt, her beloved blanket, the car seat...everywhere.  So I of course changed my mind and pulled over.  I scooped up the vomit that was all over her blanket and put it in the trunk dreading a tantrum begging for her blanket.  Got her out of the seat...tried to wipe the puke off her buttons so I could unbutton her shirt (they were COVERED...literally I couldn't see them) and took her shirt off.  One perk of her not having hair is that it didn't get all over in her hair.,  She was SCREAMING of course she was she was shirtless on the side of the 26 at 9:30 in the morning it wasn't too warm.  Then tried to wipe the remains from her face, hands and rest of her body.  I put her in the front seat and put a shirt on then tried to salvage the carseat so I could put her back in it.  We made it back on the road and to clinic.  We were all done with clinic by 11:30...I think the fastest ever...Until I went down to pick up her at home chemo for this week.  They told me that it was going to take several hours to draw up.  Are you serious?  Several hours...we are all ready to go home and you want me to go sit up in the clinic we come to every single week and wait for several hours?  Well after patiently making my way through the vomit and fighting off my exhaustion this morning I wasn't prepared to hear that.  I fought really hard to hold back the tears and my ever increasing desire to go find an empty room and just cry for a few hours.  I went back upstairs told Todd and got us a few things to eat including some ice cream with oreos which I decided would take the place of my good long cry and tried to think of good things about that day.  My favorite one was that Gracie only mentioned her blanket once and never threw a tantrum about it and instead carried the extra blanket of Tyson's I had in the car...luckily I had  that extra blanket there without planning. 

Getting chemo

Worn out on the way home

Luckily the nurses called down to the pharmacy and it turns out it didn't really take several hours to do as they told me...as I suspected (they just have to be so difficult sometimes) and it was done in about an hour.   We made it home without any more puking.  Probably due to the zofran they gave her IV before her cytarabine.  They said sometimes the kids get an anticipatory nausea b/c they know where they are going.  Poor thing, broke my heart watching her throw up so much and so scared sitting in the backseat by herself as it kept coming and coming. 
Her counts are on the decline...just as they expected. 

Clinic Stats

Weight: 32 lbs 11 oz

WBC:1.7

ANC: 600

HGB:8.4

Platelets:178,000

So far no fever...but I can't say there is no anxiety that there may be one soon as her counts keep dropping.  I think I finally got the mess all cleaned up and the car seat cleaned and put back together.  Hoping this anticipatory sickness doesn't become a regular thing.  Tyson's 2 month tomorrow and chemo in the morning.  Not sure I am liking this back to back Dr appt thing.  Last week I went to the dr wednesday after a LONG tuesday clinic.  I guess at least these appt's will be out of the way.  Hoping both kids won't feel too lousy tomorrow at the same time.   

Lessons learned

Turns out it is possible to be grateful for your trials while your going through them.  I have tried in the past,  but never been very good at it.  Now that it's been a very rough 6 months for our family and certainly the toughest I've had in my short 25 years, today I felt grateful for the person I have become through all these difficult times.  We were lucky enough to make it to sacrament meeting (not our ward...9:00 seems almost impossible these days) and as I sat there I thought of all the things I have learned and everything I now appreciate that I didn't before.  Then I had the thought (surely not my idea but the voice of the Spirit), what an incredible blessing that Heavenly Father saw fit to teach me these things at 25 instead of 40 or even later in life.  What a huge blessing for me to learn while my babies are 2 and 2 months how precious time is with them.  That some of the things that I used to think were a challenge and took for granted are really a blessing.  What a blessing it will be to someday drive to church together as a family and even if one of us sits on the stand for some reason like I often did at the organ I can look down and see that EVERY member of my family is there.  It's been almost 6 months since that's happened.  I now know that every phase comes to an end and stressing about it does no good...do your best and don't fight or stress over what you can't change.  Tyson was constipated Friday night and I was feeling pretty exhausted which is pretty typical these days and he was just so upset crying and I could feel my patience wearing thin and i just kept reminding myself this is going to end....sooner than I  know, and of course it did.  But before all this I would have gotten so worked up and thought it would never end (what a silly thought of course it will...)  I guess that's taken a lot of the Lord teaching me endurance to understand that.  If I can endure 2 1/2 years of horrible treatments for Gracie's leukemia and watching her suffer why should I make a big deal out of a few hours of crying.  It reminds me of  a quote in Elder Maxwell's book called "All These Things Shall Give Thee Experience" actually written by C.S. Lewis
"Imagine yourself as a living house.  God comes to rebuild that house.  At first, perhaps, you can understand what He is doing, He is getting the drains right and stopping those leaks in the roof and so on: you knew that those jobs needing doing and so you are not surprised.  But presently, He starts knocking the house about in a way that hurts abominably and does not seem to make sense.  What on earth is He up to?  The explanation is that He is building quite a different house from the one you thought of--throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards.  You thought you were going to be made into a decent little cottage, but he is building a palace."
Thankfully our Father in Heaven knows what He is doing and I'm starting to realize that He is going to build me into a very different house that I ever expected, but I imagine when he's done it will look more like a palace than I ever thought possible.  I have learned so much and changed in ways I never would have dreamed.  I used to think I was a pretty sympathetic person, when I heard someone had cancer or some very difficult illness or disease I really did feel bad for them.  But, I don't feel that way anymore.  I feel MUCH MUCH More.  So much more than I ever thought a person could feel.  This past week my Uncle was diagnosed with colon cancer...the same uncle whose familiy so willingly gave of their time, talents and more to organize and get funds for Gracie's Gang a 5K race put on in honor of Gracie.  Who knew at that time that they themselves would be welcomed into the same world we are now in.  When I heard about it I can't possibly describe how I felt.  How close to the surface my emotions were or how my heart felt.  Something I couldn't possibly have felt 6 months ago.  I wouldn't have known how.  But, my thoughts and prayers and really my heart is full of thoughts of them as they begin this difficult journey.  I draw much strength in knowing there are so many wonderful people in this world...angels from both sides of the veil that will be there with them through this journey.  People who will care for them as we have been cared for.  A Father in Heaven who will literally carry them when they don't have the strength and slowly let them down to learn what they need to in order to become the palaces he knows they can become. 
Although this year has been challenging and I've had more than one moment where I thought I can't do this for another second...I've learned that I can.  I can do it for another second...another minute even another year.  So I just wanted to thank my Heavenly Father for teaching me that today.

Other things

So I had A LOT more written on the last post and then had computer problems and in order to not get to frustrated at my lost work with such short time to document all I want to...I took a break!  Hopefully I can re write it again.  So we got home late and had lots to do including a sponge bath on Gracie and adding another dressing to where her port was accessed from her sweating it off as usual (to prevent it gettting infected).  I had a lot more anxiety this week with her port accessed I was worryign about her getting it wet or her drooling on it or her pulling it out or anything else a child under 2 might want to do.  She did pretty well although she absolutely hated changing her shirt or having her chest exposed ever or when the line would come out and we'd have to try to hide again in the ace bandage we wrapped around her to try to keep it in place.  She even would walk funny when she realized it was there for some reason.  She doesn't like knowing it's there. I learned how to give her her chemo at clinic and gave her iv chemo to her wed-friday.   Friday there was blood in the line and we weren't sure if that was ok or not b/c it hadn't been the other days so we called the nurse line and I tried to practice my best patience since i had a hair appt at 9:30 and she got up at 8:30 and we have to give zofran at least half hour before chemo and it takes about 20 min to give chemo and I had to deaccess her for the first time.  I got a call back in about 10 min so I was only about 15 min late for my appt.  Pros of being the one that gives her the chemo....oh wait there are none.  I guess you get to feel confident that your following the instructions they give you.  Cons...your the bad guy...and you feel really bad while she screams and cries because she doesn't like it.  Thankfully things seemed to go pretty well other than her not liking it. 
Other events this week:
-Tyson turned 2 months
-Todd turned 29
-Todd and I went on a date!  It was SO nice to go have birthday dinner and escape the stress and same old every day stuff.   Love the kids...love them more than anything but it helps me so much when I'm able to have a couple hours away.  I tell myself it's in their best interest when possible.  Thankfully Grandma was here to watch the kids...Gracie loves Grandma and we are so anxious and cautious about who we leave her with now. 
Here are a bunch of pictures from the last week or two!

Almost looks like they're mad at each other...Gracie doesn't like me to take just his picture in her chair...or any chair really.  She has to push her way into the seat. 

Cute little Tyson

Grandma and Gracie's matching shirts playing with her little people

Her new hat from Grandma Hurst

Tyson and I went outside one day and sat while Gracie and Grandma played

eating some chocolate pudding the night before clinic

This is how she says what or where?   She'll say Da all the time and then make that gesture and say "wh" for where's dad!  She is really starting to talk and communicate so much it is so fun.  One night she knocked on our door and when we let her in she said  door then knock then Grandma.  She was trying to tell us that grandma told her to knowck on the door. 

Tried to get a good picture of us last night...these are all the funny faces I got.

Yawn

That's her "cheese" smile I guess with her eyes closed

Now she's sleeping...We had So much fun watching her favorite part of tangled the "dance" part she like to watch it over and over and everybody dances.  Usually with dad but she wanted me to last night and we ran around with her on my shoulders and all kinds of fun dancing!

Bubbles!

Tyson ready for church !   Cute boy with Gracie's special bear:)

SO sweet if only he wasn't yawning

He is really smiling and cooing lately it is so fun. 

Maybe a little too close!