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!