September-November

Sadie in September '11 and November '11:I have been shocked by the change in my little girl over the course of the first few weeks of her chemotherapy treatment for  Langerhans Cell Histiocytosis.  The prednisone, famous for weight gain and "moon-face", has most definitely left it's mark on my little girl.  2 more weeks of weekly treatments of vinblastine and heavy predisone until we change to treatments every 3 weeks for the rest of the year.  She is grumpy from the medication as well so we are having a lot of heart to hearts and cuddle time.  Grampsie is back and helping in every and any way that he can find to do.  He came to the last treatment with us and the port was not working properly.  Nurses suspect a small blood clot that may be blocking the tube so we will go in early next week and see if there is still a problem and if they still cannot draw blood from the port, they will flush it with a powerful blood clot buster and also send her for x-rays to make sure that there is not a problem with the actual Ivad tubing and placement.  The other kids are doing so well.  Robin has needed a little extra love with all the changes and also came with us to the last chemo.  It has SNOWED, so the kids have been spending every afternoon after school skating on the pond in the back 40, x-country skiing around the perimeter of the yard and practicing archery in the barn.  We set up the Christmas tree and made decorations today.  We also re- started the afternoon winter tradition of popcorn and hot chocolate when they come in with ruby red freezing cheeks and need a warm up.  It's the little traditions that make life feel normal... even though i know that it will never be the same again.  Sadie will never go back to being the same girl she was in September.  She changed day one.  My sister reminded me of a passage in Anne of Green Gables where Anne lost her baby.  The book describes her face as having a quality that it had never had before... and would never be gone from her face again.  Some things in life leave their mark... and this has been one of them.  When chemo is over, Sadie will begin growth hormone treatment and she will change drastically again in a short amount of time.  Her childhood pictures will have a strange sort of feel... not the gradual change that we all normally have, but huge leaps into sickness and healing and change.  It's drastic... and the change in me is drastic too.  I feel my heart exploding into a thousand different questions and thoughts that i am nesting on.  Praying that God would give me the proper perspective to be the kind of mom he is calling me to be in all of this.  I surrender...and now what does that look like?  It feels like certain death for part of me... but maybe that part was never meant to live... and when it dies, something beautiful will take it's place?  "Unless a grain of wheat falls to the ground and dies..." thinking of that verse tonight...-j