Its been a while since weve posted any update. So I guess its time. Things here have been good. Ava is back to school 3 days a week and aside from Mikes medical testing and unknown MS status things have somewhat returned to normal. We have our first scan this Thursday morning at Childrens in Boston and Im scared to death. Im hoping that the scan is clear and we have GREAT news! Waiting will be the worst part and the medical part of this unfortunately is a ton of hurry up and wait. We have clinic and chemo on Friday so presumably we will hear our results at that time. The next step will vary as we have decided as of last week that Dana Farber has not been perhaps the best fit for our treatment needs. The nature of Avas tumor is one of an aggressive nature. Even if the tumor is gone there is a very high almost certain chance of recurrence. Dana Farbers plan was to not Proactively treat aggressively until a recurrence. That plan is not acceptable to myself and Mike. We feel our primary oncologist has been very wishy washy and constantly changes what she says. We have very little trust or faith in her at this time. We have had excellent care at childrens. The surgeons, nurses and staff have been truly amazing. Our team at Brigham and womens for radiation oncology were top notch and we have made lifetime connections to those people. Next Thursday we have an appointment in Cleveland at the Cleveland Clinic. A friend suggested a contact person which led to the recommendation of this particular doctor at the clinic. We owe it to Ava to do everything in our power to give her the best shot that we can. We are flying to ohio on Wednesday and will be home after the appt on Thursday. Depending on the scan and the advice of the tumor board in Cleveland we will formulate the best course of action. Ironically, Dana Farber has now come up with 4 different options of treatment. Its amazing how much money influences these people to start listening to parents of sick children. Truly its very sad. Whether I move temporarily to Cleveland to be with Ava, if we feel thats the best option or we continue in Boston, we simply will not sit around and wait for a re-occurrence. Thanks in advance for the thoughts, well wishes and prayers. We are truly so fortunate that we have so much love and support surrounding our family. We are forever grateful, more than you could ever know. #AvasArmy #PrayForAva #brAVA #MissionSmiles
Posted on: Wed, 21 May 2014 03:07:44 +0000
Trending Topics
Recently Viewed Topics
© 2015