Dear Gracie

Well I haven't blogged in a while for many reasons.  It has been a major emotional rollercoaster here and we are just trying to hang on many days.  In many ways we feel so isolated from the outside world and lately I haven't felt like sharing my innermost feelings except with the one who is living and breathing it with me along with our kids.  So this post is for GRACIE!!

Dear Gracie,

I don't know how old you will be when I'm finally brave enough to remind you all you have experienced...i don't know if you will be grateful or want to put it in the past.  I will try my very best to respect whatever your wish will be.  But as your mother I have felt it very important to record this journey as it has been remarkable in good and awful ways.  The last month has been a very tough one for our family.  I'm not sure if you even realize it...I sure hope you don't most the time.  Ever since we have moved to Klamath Falls your counts have given us all a scare over and over.  It started a couple weeks after we moved here and your ANC was 360 when we when to your first appt with Dr W.  She was surprised, we were suprised and of course even more surprised when you ended up in the ER two nights later with a low grade fever and an ANC of 0 for a week.  We survived it and hoped once they recovered it would be the end but it wasn't.  Our next appt at Doernbecher your counts were low again..but borderline at an ANC of 550.  So Dr L decided to cut yoru dose to 75% hoping it would allow us to ride it out.  Two weeks later we were disappointed to find your ANC was 480 (disappointed in the counts not in you,  you are always the bravest most amazing little girl).  So we did counts again the next week and your ANC had dropped to 315.  Our hearts were hurting and we wished so badly we could just take this cancer away from you.  It has been the most heartwrecnching thing we have ever had to bear to watch you suffer from this awful disease that no one should suffer but especially not a child.  You haven't even gotten a chance to live life you but you face without fear and show us the way most the time.  We prayed like crazy and struggled to get by each day as our emotions were so fiercely wanting you to just be healed and since we knew we have to endure the next 9 months of treatment we pleaded with our Father in Heaven to help your counts raise.  The Dr's seemed sure after 2 weeks of no chemo they would be up and at our monthly clinit visit with  Dr W she told me what your dose would be for 50% chemo assuming your counts were up and we waited as they ordered the flu shot for you.  You and I played with the toys and the wagons and cars and really had some fun despite the pit in my stomach.  We walked by the Dr's and nurses and I could tell right away they were still low.  Your ANC was 322.  Dr W called DR L but we waited a while for response as she was in doing a procedure for some other poor child suffering from cancer.  Finally we decided it best to just get ready for home as Julie was home with Tyson and who knows when we would hear back.  As we ate our lunch in the car the new oncologist Dr P came running out and said Dr L wanted to try IV pentamidine instead of the septra you have been taking on weekends for the past almost 18 months every weekend because it can cause increased suppression of the marrow.  We decided to go ahead with it and went back in for you to be reaccessed.  You werent too thrilled when the nurse brought more cream for your port.  I couldn't blame you...I didnt' want you to have to either.  I took you into a corner alone so you weren't scared and you let me put the cream on then we went out to the park to play while the cream worked.  It was a long day for us and a  long day for Dad...and I think Julie and tyson too.  Dad worried about you and I all day as he worked.  We left home at 8:15 and got home just before 7pm.  The pharmacy had some holdups and we waited a while for the med but you were amazing and we watched "Elmosizing" they had at the hospital and you took a nap.  As I lay next to you in the bed and prayed...my heart and body feeling so heavy Heavenly Father reminded me that you are His daughter and He is always aware of you and aware of me as His daughter as well.  I cried silent tears in our pillow and treasured that moment with you holding you close as you slept so peacefully.  You are truly my little angel given to me by the grace of God maybe thats why your name was to be Gracie.  A sweet angel nurse came and talked with me and said the pediatric cancer patients hold a special place in her heart.  If she can't take it away and she knows she can't she wants to make it as good as possible and do everything she can to help you sweet kids.  I was grateful to her for sharing that with me.  And grateful for nurses like her. 
We made it home and celebrated life with an ice cream cake.  The next week we prayed and prayed and put your name in the temple and asked our families to fast with us on Sunday.  Your Dad gave you a Priesthood Blessing and as you sat on the chair in your room on his lap the image is still vivid in my mind.  I couldn't close my eyes as he began the blessing your tender almost 3 year old arms folded and your eyes closed as you recognized the sacredness of what was occuring.  Again I was reminded we have a very choice daughter of God, we have been blessed to care for and call ours.  And that the Priesthood is so very real especially for a child your age to recognize it.  We hoped like we'd never hoped they would be up...but didn't dare hope completely b/c we couldn't bear to be let down.  We planned to celebrate if they were good by going swimming as a family.  We waited for counts after you had your blood draw.  We called and the WBC had doubled to 4.4 but the differential wasn't back.  Hemoglobing was 13.1 the highest I ever remember and platelets had come up again to about 206,000.  We waited and waited for the differential.  Called again....no differential.  Finally they called and we were so thrilled when your ANC was 2156.  We all prayed and thanked Heavenly Father for another little miracle.  We went swimming and you and Tyson had a great time.  Thanks to our wonderful friends Sara and Matt.  We were very grateful to be able to have you taking chemo again after a 3 week hold.  A very ironic feeling. 
We got out that week and enjoyed a playdate with Miles, a night at the park, a couple trips to the store and even  a music play group.  Things that sound terribly ordinary to most kids but are a genuine pleasure for you, and for me to watch you.  At the store you noticed all kinds of things including pointing out a big bag of ice.."look mommy, ice" and you even got to pick out a strawberry cake mix for your 3rd birthday coming up and some birthday blast ice cream. 
Yesterday you woke up with a runny nose...we had promised we would take you to the trains/pumpkin patch and had all been looking forward to it.  So we went, and that night as we expected the croup came on.  Tyson slept poorly and we were all so tired again.  Not that we ever stopped being tired but the full fledged exhaustion was back.  We gave you a little steroid at about 4 am and it seemed to help quite a bit.  you and dad slept til about 9.  Today we went for a walk outside at a park and all enjoyed getting out for a bit. 
We are learning to treasure the little things in life, but of course are still not perfect in this.  We still wish we could make things a little less tough for you.  But we are working very hard to align our will with God's will becaus we know only He knows the beginning from the end and has the power to take this from you.  So we are doing absolutely everything in our power and TRYING with our imperfect selves to leave the burden at His feet.  Someday we dream of taking you places and doing normal things other kids do and many things really.   Our hearts are full of dreams for you and your brother.  You have become our life and we live each day for you two.  We love you sweet Gracie, keep being your brave beautiful self.  Mom and Dad love you and always will.