Last week our 4 month old girl was diagnosed with NB. After 10 fast and furious days (our worlds turning entirely upside down) we are facing some decisions we would love your input on. With regards to her disease, our daughter has two masses; right adrenal gland and right paravertebral column with some disease in the liver. She’s MYC non-amplified, clean bone marrow, and no chromosomal abnormalities and intermediate risk. Going in to find out MIBG results today.
I should preface by saying we are American nationals living in Ireland and have no family support in Ireland. We have a good friend community, but not the same as what we have back in the States. Upon diagnosis of NB our immediate knee-jerk reaction was to think “we need to go back to the States to be closer to family”. Over the last few weeks we’ve built good and trusting relationships with the doctors and medical staff in Ireland and are starting to question our initial decision to return back to the states. We have no established relationship with the doctors at the hospital near to where we have family (Children’s National Medical in Washington DC).
So here is our conundrum; on the one hand we can return back to the States where we will have strong family support, but do not know the doctors at all. Or on the other hand we can stay in Ireland where we have built a good relationship with the medical professionals but don’t have the family support. Both hospitals follow COG protocol.
There are obviously many other factors such as insurance, logistics around an international move etc that we’re having to explore, but our primary consideration at the moment is getting the absolute best care for our daughter while making sure that we set ourselves up for success throughout the treatment path that lies ahead of us.
Based on your experiences, how much did you rely on the support of family and friends throughout treatment? Was it critical? Y’alls input is much appreciated!