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!!

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.

\

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.