Clinic-New Year's Day

So I'm really behind on blogging but mostly for wonderful reasons!  Like spending a little time in the evening with my husband instead of along blogging while he's with his little girl who just can't get enough of him. 
Our last clinic trip fell on New Year's Day...which worked out for us since Todd had the day off and with the roads to Medford it took Daddy and Gracie a good 2 hours I'd guess each way, but they did make it safely.  I was home with Tyson (who I think enjoyed the day and free reign with all the toys and one on one time with Mom) so I was there for all the details and although Daddy does a great job and if probably more thorough in some categories than me i don't know all of her stats.  She is likely about 40 lbs again though according to our new scale at home.  Her last visit to the ped the day after Christmas for fever/ear infection she was down to 38. 

ANC=1619

Other counts=good:)  I don't remember and can't find the paper

So her anc was good but a little high and they are wanting to be a little more aggressive in increasing her chemo anyways.  So they upped both chemos. Her 6MP went from 3 whole pills and 4 half pills a week to 4 whole pills and 3 half pills a week(74% of her recommended dose, up from 50%).  Her methotrexate went from 4 pills once a week (tuesdays) to 5 pills once a week (up to about 88% I believe of her recommended dose, also up from 50%).  We go back in for counts this coming Tuesday to see if we can increase more or what to do with her dose. She got her monthly IV pentamidine that she has been getting and we are soo grateful for Dr P and her being on top of things and calling the pharmacy down here to reserve all of it for Gracie since it is no longer being made.  Many of the kids up at Doernbecher are having to switch either back to septra or take a daily dose of dapson (i think that's right) which is less effective than the pentamidine.  Another blessing from our Father in Heaven.

One more thought that's been on my mind before I close.  I realized this past week that the first year mark from Gracie's diagnosis I viewed mostly as a day of mourning i did in some ways celebrate.  I was grateful she was still alive and for how far we had come.  But I had heard it mostly called a "crapiversary" which seemed terribly fitting and still does in many ways.  But then my dear friend Ashlie taught me a lesson and another mother who I haven't met yet but have gained much strength from.  And as I lay in bed a couple nights ago I couldn't sleep because my mind was filled with the beauty of celebrating.  "CELEBRATING LIFE"!  Why is there no holiday to celebrate life I thought?  Birthdays I suppose are for that very reason but I guess I've never looked at them too much for that,  so i decided we could have our own family holiday.  A yearly tradition where every year somewhere between April 26 (likely the worst day of our lives thus far, the day she entered the hospital with a questionable diagnoses of leukemia and was poked and miserable all night) to April 28 (the day she was originally diagnosed) we have a party whether big or small to celebrate her life and every life.  Each of us can be so grateful for the life we have been given whether we have fought and survived cancer to teach us the beauty of life and moments and the blessing of another day or we have never had to fight cancer or anything life threatening or lost a loved one or something life altering we can be grateful for the life we have had and th day in which we live. 

I stole this quote from the same mother who has inspired me by her courage and strength and positivity/faith in the midst of great trial. 

I'm trying to live my life this way. It is the truth, it's good to plan for tomorrow and learn from yesterday...but lets leave the living for TODAY!

So here comes my proposition...more of a dream I have really. I want all of our friends and family to celebrate with us on April 28 (or around then), but we don't currently live by sooo many of our family and friends! So....
PLEASE CELEBRATE LIFE WITH US ANYWAYS!!
THROW YOUR OWN PARTY, BIG OR SMALL! FAMILY OR FRIENDS!!! OR EVEN JUST HUSBAND AND WIFE...but CELEBRATE!
And after you celebrate I would love with all my heart if you could send me a letter, an email, some pictures or anything to document your celebration. I want to put together something or maybe just make a post about all the celebrations and show Gracie what her courage and bravery fighting cancer has taught all of us. It's not to mourn what we don't have because her sadness and frown never lasts long...she is the one that so often reminds me to smile and laugh because it's our choice to make and when tears come to my eyes or she can tell I'm sad each time she tenderly says "don't be sad mom, be happy". So be happy with us and CELEBRATE LIFE!
Hope today has been a day worth celebrating for all of you!
HAPPY NEW YEAR!! 2013 may be the best year yet for us! And I hope it is for you too!