|Emily wearing her wig that she put n the other night.|
We met with Dr Gowda on Friday afternoon of last week and talked over a trial that he thought may benefit Emily! It's a trial that is done at Sloan Ketterling however we are going to do the trial here at the home hospital, and do scans in Michigan. The trial consists of 3 different drugs with Day 1 and Day 15 of Avastin. Day 4-9 will include irinotecan and temolazide Avastin is done at the clinic and the other two are done at home! Emily will have 2 rounds of this regimen and then head back to Michigan for scans. If the scans show improvement, then Emily will move into 4 more rounds of just the irinotecan and temolazide.
When talking with Dr Gowda he really put some harsh reality into play for us. The harsh reality is when Dr Gowda said, "something you all really to need think about is that if the scans show no change, to think about giving Emily a good quality of life and stop treatment!" It's not what we expected to hear, but after 2 years of trying many different Chemos, antibodies, radiation, MIBG therapy and nothing is working. So after two rounds of chemo regimen have scans, and no change we really need to think about things!
Fuck we hate cancer, but we hate neuroblastoma even more. This put a hole in our heart and has really been pretty devastating. We want Emily here longer than we are and see her doing all those things that she should be doing!! we want her to celebrate her 6th, 7th, 8th and so on birthdays and be here for Christmas for years to come. For someone to make it real and smack you in the face that you need to give this up, really breaks you apart. When Dr Gowda said this I felt my heart drop to the floor and Doug just look at me and look at him. Ok pick your heart back up, baby girl can fight this. She has always been a fighter, and always does it with her amazing smiles and dimples that you just want to pinch her face and love her like there is no tomorrow! I've become pretty quiet as I call it in my own world and been in a hole trying to wrap my head around what is really happening here while at the same time trying to move forward with life and everything going on around it... Doug is really messed up about all of this too, trying to recover and find hisself again. But Its scary and It's a harsh reality, harsh reality that breaks a parent into pieces and brings you to the floor hurting and crying. Wheres the rock you want go throw and break something! I honestly never knew what my heart hurts meant until this. My heart hurts and I know that Doug's is hurting too. There was something that I recalled today in my thinking ( we do this a lot lately) but at the beginning someone told us "this gets easier with time," I wish I remember who told us that because I would really go back and tell them they have no idea, because this has not gotten easier , actually it's gotten worse and harder. The decisions are beyond painful and hard to make. I can still recall when the first chemo was being hung, I couldn't stop the tears...the tears today are much deeper and more painful. I remember the first day of radiation and having to walk out of that after laying her on the hard table and seeing the laser beams on my daughters body, and crying. The tears today are still much more painful. I recall MIBG therapy and crying because she was crying because all she wanted was her mom or her dad and couldn't because of the radiation in her body. The tears today are much more painful. Starting nifurtimox with chemo and hoping with all my heart that the treatment would work and the highs and lows of it. Again much more painful knowing today we are not looking for a cure and it could become a possibility that we are not even looking to keep is stable, but to allow her to have a good quality of life.
Anyway, Tomorrow will be day 1, however a CBC has to be done first and if her platelets aren't at a level he is comfortable with he may ask that Emily not use the Avastin at this time, because it could be hard on her platelets to recover. Last Wednesday Emily's platelets were 47 and for this trial you need to have 35. Dr Gowda feels her platelets need to be at a comfortable amount. If CBC shows platelets are still recovering Emily will start Avastin tomorrow marking day 1. Monday will be day 4 and at home Emily will start the two Chemos again i said at home. They will go over how these need to be taken and timing and all. We've had to make calls to get these drugs at home and not many places cover them, and when I finally found one, he came back with a crazy high price, however it was the price. Our awesome nurse was able to get one of them through the oncology clinic for almost 70% price cheaper, but not the other one, so we are really thankful for at least one of them being cheaper and paying a huge out of pocket expense is not as much, but still expensive. Thank you Elaine (Emily's nurse since she was diagnosed) for all the hard work you do. She will go back for count checks probably once a week for this 21 day course regimen and day 15 go back to clinic to get the second Avastin.
I need to end this because it's bringing me to tears which have been a many lately just thinking about everything. But on a happy note, Emily is still doing amazing. She is so full of life and even went to school today, although we fear the flu outbreak right now and all the germs. (Never thought I would be a germophobe, but the germs right now are horrible.) The picture attached is of Emily putting her wig on the other night.
I ask that you all make sure you hug and kiss your kids every night and tell them how much you love them. Please always tell them how much you love them.