(written a day late on December 16th)
My sweet Katertot,
It has been four months since that awful day and you continue to blow my mind with your strength. Truly, you are my inspiration every day and because of you, I am feeling much stronger in my role as your momma.
This last month hasn’t been much different in terms of your treatment. We’re still on 21-day cycles in the consolidation 2 phase and getting Oncaspar every other week. We are still seeing the same types of side effects each cycle; some nausea and sleepiness in week one of chemo with you bouncing back about 5 days later. Week 2 continues to bring us great ANC numbers and so far (thank God) we have not seen any chemo delays. You had another lumbar puncture at the start of cycle 3 (first in this phase) and handled it so well. We think we’ve found the magic combo of meds to help you sleep & lay still a little longer, which helps you with the nausea from anesthesia. We don’t have another one scheduled until February.
BUT…this month has been HUGE for developments for your smart-as-a-whip-little-self. YOU LEARNED HOW TO SWALLOW PILLS!! I will mark this cycle (cycle 3) down in my book as the most monumental in all of treatment so far because this has changed the game, baby. The steroid pills taste AWFUL when crushed (I can tell just by the smell) and you HATE every liquid we try to hide them in. It ends up all over you, all over us and only about half the doses make it all the way in without losing some of the goods. You learning how to swallow pills (which was almost entirely your idea) has made you so proud of yourself that you giggle afterwards. Once you even asked to take pills so we’d make a fuss. We are all SO proud of you, love!
We visited the hem/onc nurses on the 5th floor to deliver some Christmas treats and they all commented on how much you’ve developed verbally and socially. (I beamed with pride, naturally.) Those nurses lit UP when they saw you and I get why. We’re thrilled to never, ever see them but miss them all the same. They feel the same way about you, my dear. They talked about the dream team of you & brave Maeve and couldn’t wait for the day for you to be well, too, so that we could team you up. Nurse L thinks you would be quite the dynamic duo. At your last clinic visit, you danced and sang for Dr. D and walked her right through your check up. I was in awe. Who was this child??
We’ve all noticed that while you still absolutely detest being accessed, every time seems to get ever so slightly better. You cry a little less intensely and for a little less time each time. I pray one day it stops scaring you as it does now. It’s just plain hard to watch. Nurse J at the clinic is our FAVORITE. She remembers you…knows we need lovey instead of a mask, knows what kind of dressing you prefer and knows that whenever we can, to use drawn saline instead of the pre-filled syringes. This kind of thing makes a real difference.
We so look forward to Christmas this year and to celebrating the wonderful little girl you are. Our family & friends love you so, so much. One day, when all this is a long distant memory, I will share all of the amazing things they have done for us and for you and someday you will know how very, very loved you are. Your story has reached and touched a lot of people, Kate. You are making a difference in the lives of people you know and those you don’t. You are only 2 1/2 years old and you are changing the world. Knowing who you are becoming, my love, I think you always will.
My cup runneth over,