Lily and family traveled back to CHOP today. It was the first visit since May 30th, post biopsy. I was more than a little anxious. Those were dark days of confusion and Lilys tumor was so aggressive and angry. Everything happened so fast... I dont know how we survived those days. Poor Lilys blood pressure readings showed her stress as well. After playing with some of the other visiting patients and some great bedside manner with her doctor, her bp was normal. It kills me that a child should have that kind of stress. Even for a minute.... I have this dialogue in my head, every time , before I go to see one of Lilys doctors. I hear them tell me to pack my bags because you HAVE to go to this place and they are waiting for you and Lily and its THE cure. So with this expectation, anything other than the above falls way below the expectations that have been set before I even enter the room. Ive also been told( twice) if its not broke, dont fix it. Well, thats kind of insulting because Lily didnt get to where she is now by me laying low. There is much and there are many that CAN help. My job, as Lilys mom is to find not just those that can help her, but those who will help her BEST. So go to hell for telling me to rest on non existent laurels of some DIPG honeymoon stage. Im totally insulted as to what this honeymoon phrase conotates. Lily LaRue is back. She will be running away from me sooner than even I think. Dont compare her to your studies. I wont have it. Lily is currently in her 2nd cycle of chemo. Dont know yet if its helping, but we do know its not hurting her. Shes off all meds and on the last wean of her steroids. By next week, only trial, vitamins and Chinese herbs. We will start adding, *naturally* and holistically to this as time goes on. Keeping her body mind and spirit strong is 100% the most important goal we have set for ourselves since day 1. Her local circle of doctors is finally coming together( for weekly labs and baseline appointments). NYC- here we come, too. We did come away with something today. We have been told to make her travel dreams come true ;now, immediately, not later. That didnt offend me- that actually inspired me! Now THAT is medicine I can relate to! Some of you have kindly offered Lily experiences. This is also now our immediate goal. Her immune system is compromised, but there have been worse cases where restrictions were not given because the good of it is bigger than the bad. So with this, I hear road trip like a whispering roar in my head. In the next few days and weeks, I will finally be able to say YES! Not maybe or tba. Yes to camp and beaches and museums and farms and maybe places she never knew existed! Things shes never done! Making pottery or lighting one of hundreds of fire lanterns in the night sky! Boat rides, a cruise? and sitting in a room of puppies and seeing an island sunset! I know she wants to get slimed??- ok! Lets find it! I have always known time is not to be assumed or taken for granted- I just never knew it could be in your face like DIPG. So on this 92nd day of #DIPG I say YES! Lets DO this! Let us *go*. And as the best end of movie quote goes roads? Where were going, we dont need roads- Dr Emmet Brown
Posted on: Wed, 06 Aug 2014 06:08:48 +0000