finally made it to Maintenance

Today was clinic again. Two clinic visits, one check up for Crew and an ER visits makes for a really long week. Today Presley's ANC was 5700! She made counts. The big news to share from today's visit it that she randomized on "Arm A"-- which is actually standard care so if we were not on a study then this is the schedule we would be following. I of course wanted the less chemo, less often but I have also not wanted to be disappointed so I have really tried to just let it be. My hope was that we would be on the once every 3 month cycle but we randomized for us to get chemo and steroid pules once a month. So that's three times as much as chemo and steroids and other standard risk kids gets (that randomized on Arm C or D). Again, not really disappointed but just trying to let be. We had an LP today and she did much better coming out of anesthesia that last time. Today was 6 of 6. Only 5 more LPs.  This seems so surreal. I have lost track of how many back pokes she has had (one day I will count back and see) but at least 20 if not more. While under sedation they take CNS fluid out (check for leukemia) and then replace the fluids with chemo. This is done to protect the brain from relaspe or refractory of leukemia cells in the brain. Only 5 more. I'm pretty excited about this. Not too excited that for the next 540 days she will take a chemo pill every night and 180 does of steroids left. YIKES. I can take the chemo but man that's a lot of steroids. I hate steroids. I hate what they do to our little girl while taking them and I hate the late effects (what they do after treatment) even more. We are going to be having a no more chemo party and a no more steroids party when this is all done!

Here's the little room we hang out in a lot!

still out of it a bit from the LP (lumbar puncture)

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I love all that hair! 

We had a sweet friend with us today in clinic. I was lame and didn't get any pictures.
Today I celebrate that we are in our final phase of treatment. Final but long. We will do 6 cycles each being 3 months long. My mind can actually wrap my mind around an end which is such an amazing feeling. 9 months down and 18 to go.
I'm not looking forward to the drama that comes with 6MP (night chemo) every night or the steroids but excited that life might settle a little more back into normal pre-cancer life. Never really back to that blissful state but a least a little less hard on the treatment plan and chemo symptoms. Hoping that by next fall Presley will be able to do Preschool and maybe a dance class or something. She needs something for her mind and body to be more simulated. Being home sick is not what a 3 (almost 4 year old!!!) year old should be doing. I look forward to those days when she fits back into the normal range. Oh how I would love to be in that "normal range" today.
The doctor reasured us today that the chemo she will take is well tolerated and she should do great. It can be a little bumpy for a few months as her body gets use to chemo everyday. lower dose but still every day.
The goal of maintenace is for a immune suppresed. Keeping those luekemia cells at bay. We will try to transition to using a pediatrion more that the oncology. Thats scary! and not knowing her ANC everyweek will definataly take some time to get use to.
Strong girl today. Her smile keeps me going. Cancer has made her strong. I love you sweet girl!

She is always asking to get ice cream after clinic. Today was a day to clebrate a milestone so we stopped at her favorite "Pink" ice cream store.