So I realized I have not provided a real update on Boston since I posted we were going and a lot has happened!
We have a target start date for 7-7, which is amazing because it means Con will be “knock on wood” feeling good for the week before the fourth and we can enjoy family time in both Normandy and Spring Lake.
Connor has also officially been accepted into the program and been assigned a nurse even though the tumor board has not finished reviewing his materials (they have discussed him in depth) but are still waiting on a few notes. This usually does not happen, but I am thinking everyone wants to get their hands on the kid with the rhabdomyosarcoma in the brain as it is so rare and if he does well they will all have quite the paper to publish. They have also put him on the schedule which is such a blessing for us. Because they did all this prior to completion of their review we have been fortunate enough to secure an apartment across the street from the hospital for our entire 6 weeks! An amazing charity called Christopher’s Haven has 7 apartments in an extremely nice apartment building that they rent to pediatric cancer families for much less than their operating costs. We feel so blessed to have people that told us about this, but also that there was availability for our 6 weeks because this greatly reduces the financial stress of moving to Boston for 6 weeks! We have also worked out my support system in Boston which will enable me to have Claire with me the whole time while still caring for Connor. Meg and Jimmy will join me for the first three weeks, followed by Casey for the next two, then Casey’s parents will be there for our last week and help us get home. Casey plans on taking the train up on weekends and we hope to explore much of the surrounding area!
The last update is my mom and I will make a “risky” trip up there with Connor June 24-26th to do all the pre planning as well as his sedated MRI. The reason this trip is risky is Connor is typically still nuetropenic at that point in his cycle, we have pushed it back as far as we can because it is not 100 percent safe to travel when nuetropenic, but if we do not get the planning done that week we would have to wait until 7/14 to start radiation and no one is comfortable being another week out from this chemo cycle as it gives the cancer a chance to do its thing. The hope is while he may be nuetropenic that he is on his way up, Boston will need to do his clinic tests and he may need a transfusion up there, but it is a calculated risk we are all willing to take to get the best treatment for Con!
We check back into the hospital for our last induction cycle, wish us luck for our best cycle yet!