Well its been a long day. We started in here at 7 a.m. where we waited until 10:30 to get into surgery where Gracie had to have a new port put in, her broviac port will not be sufficient in dealing with her treatment going forward. She now has a double "lumen" which will allow all forms of Gracie's treatment going forward, this should prevent additional surgeries in the future.
Where to start on Gracie's treatment without losing you in the medical jargon so in a nutshell, because Gracie's cancer is rare and now very "progressive" we will be proceeding to a DHAP protocol which involves four drugs given over the course of four days. This will all have to be done on ward, so no more out patient for us. We will do two to three rounds of this protocol. After the first course of chemo we will attempt the stem cell harvest, this will depend on the mobilization of her bone marrow stem cells. This will be done at a moments notice, but most likely around the 16th. Once that is done they want to do another round of chemo combined with total body irradiation (radiation). This is extremely scary for us as radiation in children this young causes all sorts of developmental delays and growth retardation. Then the final phase of the transplant of the stem cells back.
So that is the latest, we will be starting the new chemo starting tomorrow and taking everything else day to day. We expect alot more infections and the such with this chemo so we will be in the hospital alot more this round and most often at a moments notice, so please if we are not returning calls this is why.
Thanks for caring and thanks for reading...I am exhausted and going to sleep...will update soon.
Words cannot describe....my heart is heavy. If you need relief, I have Friday afternoon off. I'd love to see you.
ReplyDeletexoxoxo
Wordless currently....am thinking of all of you constantly and knowing you will stay strong.
ReplyDeleteXOXOX to all of you.
L
I don't know you, I am a friend of a friend who asked me to say a prayer so I opened your blog to see your precious babies face. I too have a daughter and as a mother I feel deeply for you and yet I know that I can't even begin to fully imagine all that your family is enduring. However, I sit here with tears seeing Gracie and taking this moment to be grateful and I thank you for that moment because we can so often take it all for granted.
ReplyDeleteMy girl will soon become a teenager and so I pray for Gracie and your family. I pray for your strength to weather this storm and I pray for Gracie that she should become the healthy, beautiful child and teenager she was born to be. God bless you.