Big news...for us!

The year is not yet over with...but 2 BIG things happened!  Other than Christmas which I will post about later:)  We are so blessed to have our 2 sweet babies, each other and 2 good families and most importantly a Savior, Jesus Christ who has helped us make it through this year and see the beauty inside the pain we may feel as we contemplate His lasting gift of the atonement. 

We'll start with Tyson!  Our big boy rolled over on Christmas Eve!  He has been so strong all along and I knew it would happen anyday it was fun to enjoy it on Christmas Eve!  He just kept rolling and rolling now I can barely keep him on his back he's always wanting to roll onto his stomach!  We love you Buddy!

WARNING: This is extremely detailed so prob very few will actually want to read this...but I guess I could probably say that for all my posts I should simplify!  Goal for 2012! 
Next...I don't even know how to explain this next piece of news but it was a BIG thing for us!  From the first week in the hospital...yes back in April we were given the decision of whether or not to put Gracie on study.  I don't know if that sounds stressful for you but I have had quite a bit of stress in deciding that initial treatment day (when they handed me two separate packets and had been informed the day before that she couldn't start her treatment until I had decided to sign or not to sign both...thankfully after a super stressful morning and knowing i had less than half hour to decide I asked for the Dr's to come in and explain it to me because under the circumstance..my daughter being diagnosed with cancer I couldn't read those and decide in half hour they said that if I signed we would be on track for the study but no treatment would differ the first month other than they would take an extra sample of blood and bone marrow which should not affect her).  So the first morning of her treatment as Todd was off at school and I was there with Gracie (tyson in belly) and Grandma Bucher I signed the papers. 
The real decision came just recently.  Since she was standard risk she wouldn't be in the study until maintenance so as we completed phase after phase it was suddenly time to decide for real.  Todd poured through every study that could tell him ANYTHING about how it would effect her long term especially since we know pretty well the difference in the short term.  We both went in and had the Dr answer ANY and EVERY question we could think of... mostly him:)  He knows a lot more about the drugs than I do due do his diligent study of them.  Then we told her being religious individuals we needed to go pray and make our final decision...that turned into an understatement.  She understood and we decided to sign the papers and leave them with her since we wouldn't see her til the end of January and I would email her the next week with our final decision. 

There are 4 legs of the study (probably not in order..Todd would know the order I bet)
  A. 5 days of steroids and Vincristine(an iv chemo she receives at clinic) every 4 weeks and 20 mg of oral Methotrexate weekly. (this is the standard treatment she would get if not on study)
  B. 5 days of steroids and Vincristine every 4 weeks and 40 mg of oral methotrexate weekly.
  C. 5 days of steroids and Vincristine every 12 weeks and 40 mg of oral methotrexate weekly.
  D. 5 days of steroids and Vincristine every 12 weeks and 20 mg of oral methotrexate weekly.

There is much more detail as to why they are studying this and what the actual questions are but as there are so few children with cancer it is very difficult to find answers to questions which in many ways we are grateful for we would wish this on no one and would only wish that NO children had cancer...but that's not the case and we know there will be others after us that will go through what Gracie has and will continue to go through the next 18 months.  So  of course naturally we want to help any way we can...unless it's at the expense of our sweet Gracie.  So we both prayed and made individual visits to the temple (where due to the craziness of life we hadn't been able to attend since I believe March) then we came together and felt it would be ok either way so we decided to go ahead with the study then held a fast and prayed that whatever treatment course would be best for her would be the leg she would be randomized to.  I secretly hoped that it would be Leg D for selfish reasons for myself as well as Gracie as long as long term she would be cured why not want less treatment not more.  Then I waited...and checked my email all the time and kept my phone close by to see when her Dr would let us know what the next 18 months of her life would be! 
The answer came....Leg D!  And we feel as well as the Dr that she will still receive treatment that will be adequate and hopefully will prove for future children that once every 3 months is enough and the monthly pulses of steroid and vincristine can be lessened to every 3 months. 

SO HERE IS HERE OFFICIAL TREATMENT PLAN until July 2013:
Just to clarify a month=4 weeks

• EVERY DAY she will take oral chemo 6-Mercaptopurine.  This has to be baken in the evening with no food 2 hours before and 1 hour after.  Yes you read that right a 3 hour chunk in the evening with no food...only water!  We get to crush and compound it...and give it to her without touching it! Since she can't swallow pills and it's chemo (which can cause cancer...strange that chemo can cure and cause cancer).  Also consider a Dr telling you don't touch this but let your daughter swallow it every day for 18 months...ok don't let's not think about it anymore.
• Every 3 months she will get a spinal tap where they will give her Methotrexate in her spinal fluid  and take a sample to test for leukemia cells. (I believe she's had 12 so far)
• Every 3 months she will take 5 days of oral steroid twice a day. During those days she will take I believe it's prevacid to protect her stomach from the steroid...and most likely melatonin or something to help with insomnia once the steroid kicks in. (but this 5 day once every 3 months will likely be cake walk compared to our previous experiences of long/high doses of steroid. and every 3 months instead of the typical 1 month so we're very grateful).
• Every 3 months she will get vincristine through her port (IV) at clinic.
• Once weekly she will take oral methotrexate (20 mg).
• Once a month she will go to clinic to have her port accessed (they have to flush it monthly even though she doesn't get chemo through it to prevent clotting), draw her blood to check counts and check in with ther Dr. 
• And we will continue our weekend doses of Bactrim-Septra twice a day Saturday and Sunday.  ( A prophylactic antibiotic...specifically to prevent pneumonia which could be fatal).

Thankfully we'll be back to our regular Tuesday visits and should see her Dr most visits.  I think I've mentioned I LOVE her Dr.  When she called to give me the randomization she talked to me for 25 minutes from treatment to Tyson and Gracie and ideas for sleeping to her Mother's crazy antics and Christmas events.  She's so good to answer any question we have...in face Todd's got a list going right now to send her.  And since this is such a major part of our life I can't say how thankful I am to have a great Dr for Gracie...we also have a great one for Tyson.  I think it will kill me if I ever have to switch. 

Well back to Clinic next Tuesday Jan 3 to start Maintenance if she passes counts.  It starts with  a spinal tap, vincristine, and all the other goods (steroid, 6MP, prevacid...).  Needless to say it will be a medicine filled week!  Happy crushing and administering right?  Thankfully we have had much better luck recently than the beginning with meds shes such a big girl and I can't say how grateful I am that we found something that is working for us for now.  I will clap EVERY single time she takes one of these doses, smile, be proud and mean every bit of it!  I am so proud of her! 

Hello and Goodbye

HELLO FRIENDS AND FAMILY...

I'm 4 months old and cute as a button...Mom finally had my pictures taken and I look darn cute:)  Yes I was having fun at the park this particular December day...but maybe not as much fun as everyone else!

 I had my 4 month check this last week and I'm super healthy!  Something we are ever so grateful for at this house!  I WEIGHED in at 17 LBS 9 OZ and my HEIGHT was about 27 INCHES.  I'm around the 90-95th percentile for height, weight and head circumference!  Growing strong and getting close to rolling over! Love to be heard and paid attention to...I'm usually making some kind of noise and recently decided it's best if I get up several times every night in hopes that Mom will REALLY REALLY REALLY appreciate her sleep someday.   

Lovin' me some park time!  Thank you December sun and decent counts!

This slide is SOOO exciting sometimes I can hardly contain myself... and I burst out with excitement and so do mommy and daddy from watching me!

I believe this was my very first indoor playdate with a friend since APRIL!!  Yep...about 8 months...so well deserved and the perfect combination of fun after such a long wait! 

I really love decorating cookies with lots of green sprinkles:) and also love eating these cookies after so long of not liking sugar during steroids and strong chemos!

My super fun friend Makena, after we decorated cookies we chased each other around and around and around and laughed and had a great time!  We watched frosty, and colored and played instruments too!

My nice soft had our friend from the ward made and dropped off:)

I really am such a good sport about the life we live:)

A cheesy smile just for Mom!

I'm a pretty sweet bundle of joy! 

We went to Cold Stone and I was LOVING it...til someone walked in the door coughing all over the place and we had to go finish our ice cream in the car...then I was REALLY mad when we went home!  I don't get out much if you know what i mean!

Today I conquered!  I finished Interim Maintenance II!  That is my 5th treatment phase this year!  I didn't like going to clinic and screamed when they called my name because i didn't want to go back then I cried and cried when they accessed my port and asked for me coat and asked to go bye-bye but my parents couldn't let me...because I guess all this awful stuff is supposed to save my life even though it breaks their hearts to tell me I have to stay over and over when they want to leave to. 

I'm a trooper too...laying on the table while Dad and sister watch Horton...just hanging out for a few hours at the hospital.

Thank heavens for the angels that brought around cupcakes and activities...a bright spot despite the hard!

And well deserved I think!

Staying entertained with Mom's glasses...gotta do something for 3 hours or so when the machine in the lab breaks and we can't get my chemistries back. 

Clinic Stats

height: 2 ft 11 inches

weight: 15.1 kg (about 33 lbs 4 oz I think)

ANC: 1200

HGB: 11.2

Platelets: over 400,000

Well now comes the goodbye...they say goodbyes and supposed to be hard but this one is long anticipated and nothing but joy for us!  Good bye blog for 2011!  Good bye clinic for this year!  Goodbye first 5 phases of treatment!  We've learned a LOT this year but it has been LONG and HARD!!  Grateful we've finished the worst of it!  And grateful for the blessings we've had!  I'll check back in January for holidays and our first appointment of maintenance January 3rd!  A perfect way to welcome the New Year!!   Merry Christmas to all of you and thank heavens for Christ our Healer. 

We accomplished 2 dental appts (both for me) and clinic for Gracie including 6 hour fast from 9:30-4:00ish and methotrexate/vincristine in 28 hours:)  Glad to say it's all done.  Surprisingly as a hygienist I HATE getting fillings...maybe it's because I feel I of all people should know how to prevent decay.  Guess we're all human and life throws at us sometimes what is hardest for us.  Anyway as I sat in the chair and even somewhat approached that thought of wishing I wasn't there my mind instantly flashed to my hero Gracie and how in her honor I should suck it up and be a  "big girl".  So I did.  Besides I can't compare that to how amazing she is b/c 4 fillings is cake walk for that champ. 
She went over 6 hours fasting and I only recall her asking once or twice for water once her clear liquids were gone.  My opinion...she has angels surrounding her...oh and she's one tough cookie!  We woke her at 8 (usually she sleeps til about 9:30 or so) and got her a good meal including chocolate chips!  When you endure what she does...you deserve a few of those in the morning to get you through the day!  And as I hoped she took a nap before clinic and we woke her about 1 to finish up getting things ready and headed out.  All 4 of us went this time and Tyson spent much of his time flirting with the female Dr and nurses.  Cute little guy he was awesome too.  He was quiet on the drive there and back...I assume sleeping.  And he was pretty much happy the whole  time we were there and i only had to feed him once while Gracie was coming out of sedation. 
I believe this was sedation #13...believe it or not.  In my 25 years I think I've had ONE!  ONE!!  That sounds ridiculous to me I've had one and my 2 year old has had 13 with at least 6-7 planned in the near future.  She is a little more sensitive to her port lately and seems hesitant to have her shirt taken off ever even at home and points to her port and says "hurt". It makes me sad.  She looked more like she was having a seizure than I've ever seen with the sedation and it was hard to watch...but of course as always easier to watch than leave her side while that's happening.  Once they put her on the table her arms were jerking around.  Today and last night she's complained of her back a few times...sad to hear...I'm sure from the spinal tap. We finished treatment last night about 5:00 pm on the dot so we all hung out in the clinic for another hour to avoid the bad traffic.  Easier to care for the kids there than in the car for an extra hour while we wait to get on the 405.  I've sat there for 45 min before and had no desire to repeat it with Tyson and Gracie.  The drive was fine after we waited out the traffic. 
Gracie has been so much more talkative and vocal lately.  She will say "YES" really loud and sometimes whle throwing her arms in the air with excitment it's adorable.  This week I asked if she wanted a bath or a shower with Mom and she got SOO excited and kept saying yes and throwing her arms up.  She is just eating breakfast now it's almost noon.  I gave her zofran this morning and she hasn't been interested in eating.   Typically if we let her eat before Zofran she has thrown up in the past.  So thankfully I remembered and she didn't eat right away so far she hasn't thrown up yet and seems content with eating. 
I talked to Gracie's Pediatric Oncologist yesterday who said Tyson weighs enough that he should be able to start going longer at night and we could start working on that...I guess he heard her b/c he only went to bed at 10:30 and woke up at 4 and drank 4 oz i had pumped with Todd and slept til 9:00.  It was so nice to have a night of sleep.  Although I still feel tired...it's a strange thing catching up on sleep it takes a while.  We'll see if he continues.  I've learned to never expect anything to stick with kids then your not SORELY disappointed when they dont'.  `  

Medicine time...

As of late...

I've been too tired and busy lately to get much blogging in...so in order to catch up I'll just quickly go over highlights!
Gracie had clinic this past Monday.  I know I'm a week behind tomorrow is Monday and i'm just posting about clinic.  Her ANC was 1700 so she passed counts and we only have 2 more treatments left in this phase.  He said things went pretty well but not much detail to share since I'm the detailed one out of the two of us and I wasn't there so I'm going off his description.  Her other counts were about the same as the last visit and her weight bounced back up to 15.2 kg.  Not long after they got home we experienced one of the world's LARGEST dirty diapers.  It was oozing out the sides of her diaper and pants...sorry for the gross image.  We don't know why but seems anything that's bad can happen after clinic...maybe the extra fluids they gave her/chemo?  We'll never know for sure.  It was pretty upsetting to her though...sad to watch.  We stayed on top of her zofran good enough I guess b/c we didn't have any throwing up this time.  She goes back Thursday and the BAD news is I can't get her sedation any earlier...unless we get a last minute call this week and its scheduled for 3:30.   YUCK so she'll start her fast at 9:30 am.  Not sure why we're having such a hard time getting morning appts lately. 

 Family temple trip

Made cookies...this is what happens on Todd's timer:)  Plus entertaning two small children!

Tyson's favorite toy...he loves his ball and chewing on his hands. 

He's really growing up and getting big.  He's already starting to wear some 9 month clothes.  He's got the cutest laugh and we love listening to him coo and talk.  Gracie loves to give him hugs and smother him and then she quickly decides she's done and pushes him away.  But she loves her "tys"

 Gracie's favorite toy...the dishwasher tablets.

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Tyson enjoying some outside time with us.  He's 4 months tomorrow:)  Hard to believe...but at the same time it's been a long tiring 4 months not because we don't love him to pieces just not enough sleep and too many dr's and other appts. 

We had Thanksgiving dinner just the 4 of us.  Here's my very first turkey.  Todd says it turned out well.  We had turkey, mashed potatoes, gravy, stuffing, yams, homeade rolls a veggie tray and some razzleberry pie and ice cream:)  Not bad  for cooking it myself I thought.   

Gracie and Tyson enjoying each other after Thanksgiving dinner.

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Watching Frosty onee of Gracie's FAVORITE movies right now along with Horton Hears a Who and she also really likes Barney and Elmo.  Gracie's starting to talk a lot more and we love being able to communicate better with her.  We took her to the park last week and we all loved it...she climbed, went down the slides and had a great time swinging.  A little girl asked her if she wanted to play and she quickly responded "no".  I guess this isolation business is affecting her.  Hard to think what things may have been like if our lives hadn't been affected by cancer...but not much point in doing it so we try not to too much. 

Handsome brother :)

Such a sweet little guy. 

He's starting to like a little time in the jumperoo! 

Mom and Tyson after Thanksgiving dinner.

Methotrexate again...

So it goes...my predictions seem to almost always be wrong.  Haha good thing I didn't go into oncology my patients wouldn't be pleased with my totally wrong predictions.  Then again maybe that's why they don't predict too much for us...This week I thought she would bomb counts!  I was wrong...she somehow went up from 900 before her last chemo to 2400 in her ANC.  When I asked the Dr why he said there is no logical explanatino and tried to tell me why then stopped and said if I told you something I'd just be making it up!  Haha gotta love a Dr with enough humility to be honest...I appreciated it anyways:)  So Friday I took Gracie to clinic and Todd was gracious enough to stay home with Tyson who ended up sleeping for like 3 hours of it...they somehow know when he's responsible for them it seems and sleep so much better.  Or I'm just so tired that I see it that way...probably the latter. 
Anyway at clinic she got her zofran and we waited for her labs from downstairs to come back...and when they should have been back the nurse called and they said it was lost somewhere in the tube system.  So she redrew the blood and we started again.  A while later it came back good ( her liver enzymes-blood chemistries- have to be at a certain level for methotrexate as well as her blood counts).  Thankfully she fell asleep for about an hour or so while we waited b/c her appt was at 12:30 pm despite my efforts to get an earlier appt.  She woke up mad while they were giving her chemo, but we managed to hurry and get out of there and head home just before the rotten friday night traffic I think we left about 3:30.
Her sleep schedule is way off even though we had somewhat regulated her for a few nights she slept last night from midnight til 11 am.  And she just woke up from a nap...Yikes it's 8:45 pm.  You'd think at 7:00 it would be for the night.  Nothing like cancer to ruin a child's sleep schedule.  She's sleeping more from the methotrexate she usually only sleeps a max of 9 hours a night typically 8.  Tyson has really been a starving little guy i pumped one night b/c I was exhausted and Todd thought if he slept right next to him he would sleep longer.  Nope...he still wanted to eat about every 2 hours.  He's darn cute though and we love him.  But I wouldn't turn down a little more sleep at night.
Gracie woke up yesterday morning around 10 and didn't want to eat for about an hour and then when she did after a few bites she got a scared look started crying a little and grabbed at her stomach I tried to hurry and get her out of her seat and to the sink...but alas it was unsuccessful and we both ended up with smelly oatmeal on us.  Just makes me sad that she has to keep getting stuff that makes her feel that way.  Wish she could tell us so we knew how long to give her her medicine cause she acts ok...then suddenly throws up.  Oh well only 3 more doses of the IV methotrexate.  She is really acting older and LOOKING older.  Several of the nurses and her Dr mentioned it at clinic this week.  Shes' getting taller and thinning out.  She's lost some weight too probably a combo of her not eating much for a few days after chemo  and some of the steroid weight coming off.

Clinic Stats:

Weight: 14.8 kg (down from 15.1)

ANC: 2400

Hemoglobin: 11.7

Platelets: over 400,000

She's talking more and more and seems to understand so much.  Her hair is also beginning to come back in.  Just peach fuzz still but looking darker and there are more little hairs growing in.  

Started Interim Maintenance 2

Well we made it into the 2nd to last phase.  Sounds awesome huh!  Only two more phases!  We've made it through 4! And the two most difficult!  It is really awesome and for now we won't think about just how amazingly long the last phase will last ( as long as she had been alive when she was diagnosed with this awful leukemia-18 months).  She snuck above the necessary 750 ANC with 900.  Makes me think this phase is going to drag out and we're going to fail counts a lot.  We've done this phase before but with lower doses of the chemo.  But last time when she started it she was at 3000 and after the first treatment dropped to 1500 I believe...so I guess time will tell.  One thing is sure we'll probably learn more patience and an even greater ability to live with our unplannable schedule!  We know we have clinic on the schedule but nothing more than the next appt can actually be planned because she may or may not pass counts.  Anyways she did pretty well today as always it's no fun to watch your baby cry out when they give her a sedative (propophol) and then quickly go into a deep sleep.  Even when your doing it for the 12th or who knows anymore time in 6 months.  Glad to check another one off though.  We didn't see our Dr today and haven't for probably a month.  I feel a little more uneasy when someone else does the spinal taps I've just grown to be comfortable with her I guess...oh and also she's an awesome Dr and Gracie likes her best too!  Probably won't see her the rest of this phase because she's only there Tuesdays and our new schedule is tentatively every 10 days.  Daddy and Tyson came with us and he was a trooper.  Slept the whole way there and the whole way home.  If only he had slept a little more last night:)  Mommy was super tired this morning when she had to round up the crew and try to get us all out the door by 8:00 (haha-that's way early for us...but we do it for clinic).  Also no we didnt' make it out the door by 8:00 I think it was 8:25 but I believe they were up in the clinic by 9:10 or 9:15 which is pretty good given the time of morning we were taking off and traffic.   I missed her height and weight b/c I had Todd run her up and parked and brought Tyson and all the stuff later to avoid ruining the sedation time for being too late.  Still grateful we ended up with a 10 am sedation not 4 pm that would have been a REAL drag.  Gracie did great over all but got pretty upset and inconsolable about 15 min after she woke up from sedation and we don't know why.  She was fine then not then fine then not...you get the picture.  I just wish she could tell us you know...maybe she had a headache from the spinal tap, maybe the sedation made her feel lousy, maybe she was too hungry or tired.  Wish I knew so I could fix it better...but learning to just deal with things and do the best I can when there's nothing else I can do. 

Clinic Stats

WBC: 2700

ANC: 900

Platelets: 354,000

Hemoglobin: 11.3

Oh also one more major side note.  Dad has been home for the last week and we have Loved it.  He's heading  to Utah this weekend for his brothers wedding and we'll miss him and hope the wedding goes off perfectly!  Congrats to Marc and Tiffani in advance!  And my sister Cheryl is flying in tomorrow night!  I'm way excited to see her it's a pretty good trade since the kids and I can't make it to the wedding! 

Until next week...

Tyson's 3 month

Well Tyson had his 3 month birthday!  I love celebrating anything I get the chance to, but what do you do for 1/4 birthdays?  I think Todd had a great idea but we didn't do it!  He suggested we all get a glass or bottle of milk and drink it with him haha!  Instead I probably just annoyed everyone with mentioning several times that  it was his 1/4 birthday and having us sing to him.  We love our little "Tys" as Gracie and now Dad is starting to call him.  She has been waking up the past few mornings and asking for Tys.  Last night she wouldn't go to sleep because he was out here screaming after having a blowout and peeing all over his face while I tried to change him.  Of course it ended in a lot of screaming and therefore Gracie coming out to check on her brother.  She does love him! 

He is such a handsome little guy and has gotten less fussy lately.  He was sleeping better for a few nights but I think he was just playing a joke on his Mom because I thoroughly enjoyed a few five hour and one 7 hour stretches only to be rudely awakened to a 2-3 hour schedule again.  So I tried to get one feeding off to sleep and pumped 5 ounces after 3 hours of sleep he sucked down the whole bottle and was still hungry so I had to get up anyway and he ate quite a bit even after that and was up again a few hours later.  I guess he's growing...well I know he is cause he keeps getting bigger...but cuter too!

He's got just enough hair to do a little faux hawk maybe you can see it...hard to see in picture maybe but he looks cute anyways!

Loving some time with Dad!   I think Daddy's all enjoy them more as they get more interactive and Tyson is starting to smile and talk whenever we give him attention it is so fun and he's so cute to watch and interact with.  Gracie has even got him laughing once or twice.  It was so sweet so see them both so young and still lovinc each other. She of course always wants to rip his monkey out.  He's always got his fist in his mouth and I've started to seeing him looking at his hand.  He's finally learning he has hands isn't it amazing the learning process they go through?  Can you imagine not knowing you have hands?  I guess we all went a couple months without knowing.  He has also decided it's best to have several blowouts a day in fact pretty well every time he dirties a diaper so that it seems I eternally will be behind on scrubbing out poopy clothes and blankets...although I get tired of it with him I realize it is not a big deal while with Gracie 3 blowouts and peeing all over would have meant a very dificult day. Amazing how our ability to deal with things and what we see as hard changes with trials and learning to endure. 

Here he is bundled up for Gracie's birthday walk.  We are loving watching him grow and develop and are excited for all the new phases to come!  He is so strong as he always has been and holds his head up so well!  We love you little Tys!

Clinic-attempt to start Interim Maintenance II

So after Halloween and her birthday came our cold splash of reality (although there were a few moments mixed in between with reality).  Clinic!  She did great fasting thankfully because she failed counts so new treatment. 
Clinic Stats
Weight: 33 ish lbs

Height : 2 feet 11 inches- she looks taller to me lately

ANC: 400 (reason she failed it has to be 750- the last set of chemo really wiped her out it's been 3 weeks since she's had anything).

Platelets: over 400,000

Hgb:  around 11.

We go  back Tuesday to try again.  Quick story I wasn't expecting to pass b/c I knew there was a chance she wouldn't so I prepped for it forgetting that scheduling another sedation could be a challenge. Took the news well and Wednesday got a voicemail saying her sedation was scheduled for 4:00 pm the next Tues.  Arrival 3:00 sedation 4.  I tried to remain calm and thought maybe it can be changed but freaked out inside.  Can you imagine NO LUNCH for a child and NO NAP!  That would mean she couldn't eat from 10 on and she wakes around 9.  So breakfast and then then she usually takes a nap about 1:30 or 2!  Haha that would be when we would leave for clinic 2 and then she'd have 2 more hours before her sedation.  YIKES!  This sedation thing can be a stressor for sure...so I immediately called the oncology clinic and asked them to please keep calling sedation in hopes for a cancellation.  Bless Sally's soul!  She called back the next day and said she wanted to kiss the sedation person she talked to because they got it changed to 10:30!  Oh such a blessing esp since even after she fasts we don't know if she'll pass counts and therefore it would have been possible for her to go without naps and lunch just to get to clinic and find out she failed counts!  I told Sally I could kiss her and felt MUCH happier that day!  Also nice to know we are going to a clinic where they feel to a degree how we feel...she wants the best for Gracie to instead of just telling me no I can't keep calling because that's a pain in my neck!  Grateful for such great staff that are helping us on our journey...esp since I'm sure their job isn't always the easiest...but hopefully rewarding. 

A picture of a "normal" hour where we went and played and ran in the leaves!  She loved it and so did I!  And Tyson slept happily in the stroller!  Got a few looks like what are you doing crazy lady with 2 small kids in the street (we were on the side of the road).  The answer we were just making a lasting memory and experiencing pure joy!  Worth the stares I think!

These little things remind me so much of Gracie (not sure what they're called) but she has always LOVED to hold them shake then and blow them.  Hope her wishes are coming true!

Halloween

Prepping for trick or treating:)  Here's our little bee from behind!

Flying with Dad

Our extremely handsome/trooper of a dinosaur!

Getting a pic with both...a challenge!

Gracie loved this pirate ship when we went trick or treating!  She LOVED every minute of being out and pretending like we were "normal".  She was shy at the doors and got scared by a few "monsters"-Todd calls everything a monster and so does she but otherwise she would walk around like the queen bee that she is.  Knowing exactly where she wanted to go and like she was in charge of this ship...that's right she is!  Especially since April.  You think it's hard to discipline...I was ok at it until I watched her suffer over and over and over again.  Working on it...but lots of things don't matter one way or another so we let her lead our trick or treating route for the most part!  I'm not sure who enjoyed us being "normal" most.  Gracie or Mom!  I felt so happy holding Tyson and walking around outside watching her walk around so happy and feeling like life was normal...I forgot all about clinic the next day until we got home!  Nice to at least forget for a couple hours!

Tyson was a great little guy his outfit was nice and warm and I just held him while we went!  We all had a great time!  And the kids looked adorable!

Gracie's 2nd Birthday!!

So I'm slow at posting...too many big events in a short time!  Leading to a roller coaster of emotions in this mother.  So we'll just give the high points!  Our SWEET GRACIE GIRL is 2!  I hear people say all the time that they can't believe it's been 2 years for some reason it does feel like it has.  It feels like it has been exactly two years.  The time has flown at times and gone slowly others!  But I feel like we have taken the time to enjoy the little things and althought the last 6 months have been a challenge she has been a light in the darkness for our family (along with Tyson...what can we say we love our kids).  Her smile, laughter, dancing, personality are so contagious and she can get us all dancing and laughing...she did last night!

A picture of her bee cake that my amazing friend toiled over...I have the best friends in the world!  I think it turned out great and Gracie loved playing with the bees!

She took all the bees off and played with them...of course while dressed in her bee costume (thanks to my amazing sisters for finding the jackpot on that costume...it was perfect...and after a few hours of being terrified of it she decided she LOVED it).

We decided we would try to have a party...pictures of all the guests are included!  Haha...it involved Gracie, Tyson, Mom and Dad!  Thankfully she's not old enough to know that every single guest besides her family ended up sick (oh except one of my friends that stopped by for a minute...she did cry when they left, I think she's missing the social interaction she hasn't had).  We did our best to have the best day and party for her despite no guests and please anyone reading this that couldn't come know that we are very grateful to you for not passing on your sickness just sad that because of her leukemia anyone with even the slightest sniffle should stay away.  We had cake, opened a few presents then went for a drive and ended up at Pacific playing in the leaves and running/walking up and down the stairs over and over again.  I think she enjoyed it!

Her new wiggle car...doesn't work too well inside...we'll have to get some good use of it in the spring outside!

She has been shoving her blanket in her mouth...and her hands and fingers and looking at us...and not stopping...and not stopping and...you get the picture.  Lets just say with a neutropenic child and germaphobic parents there is not much if anything that could cause more stress and anxiety.  Thankfully no fevers yet.  But lots and lots of anxiety.  And LOTS and lots of effort to pretend like we don't care..seems like the best plan of action.  Doesn't seem to work too well, nothing does.  She has gotten a little better over time though.  Of course she decided to start this the week of her birthday and Halloween.

Sunday morning we woke up to this!!!  Magical huh!  Gracie opened her curtains and found it herself..and kept saying "bear, pooh, heart"  It was perfect for her!  We still don't know who did it...I guess that makes it even more magical!  Thank you a million times for whoever it was that made her day and mine!  I feel like i want to give her the world because I'm her mother and all the hard things she's going through...so thanks to all those who are helping me do that...or doing it for me! (including her Daddy who she absolutely adores)

We got her dressed and went out to play!

Back in for some breakfast...candles in her toast!

Wouldn't be a meal if she didn't dump out her drink on her tray and slurp it up!

Opened another gift!

And ended our day with a walk to look for "moster"-monsters.  Then some more cake...yes we did share some of it! 

HAPPY HAPPY BIRTHDAY GRACIE DEAR!  We are blessed beyond measure to have had 2 wonderful years with you and to be ancipating many more.  Something at one point I did wonder if I would have.  You are one of life's greatest treasures in mommy and daddys's eyes!