In January when we were seeing a certain specialty doctor at Children’s Hospital Colorado, I mentioned the trip we had just returned home from the month before. I mentioned how we drove the very long way to see my mom, how we went to Mount Rushmore, how two of my sons went to different renowned doctors in the Twin Cities, how Vince received his chemotherapy at CHOP (Children’s Hospital of Philadelphia) while we were at my mom’s house, etc.
“We have a beautiful country and it’s great to see,” Doctor said, “but you have to stop touring the country through children’s hospitals.” She explained to me that she has another patient who has a very rare medical problem and that mother goes to a new children’s hospital in a new area of the country “at least every year”. Doctor thought is was always great to get a second opinion, but that if we were on vacation, we should simply have fun. “Stop touring the country through children’s hospitals,” was her conclusion.
I had never thought of it that way, that we were touring the country through children’s hospitals, but she was right. While seeing my beloved mother in New Jersey was a great part of the trip, the main reason for the trip was to visit these very renowned doctors and get their expert opinions. Vince’s neurooncologist said the neurooncologist at CHOP was the “top guy” in the country for Vince’s particular combinations. I had read some very promising things about the neurooncologist in Minneapolis and the orthopedic doctor (for my oldest son’s extremely rare bone deformity in his leg) in St. Paul. That, combined with the fact that our insurance (through my husband’s employer) provides a slight reimbursement for traveling far for Vince’s treatment/ second opinions through their Pediatric Cancer Centers of Excellence Program meant Road Trip.
We had an excellent trip, all things considered. I got some great answers in Minnesota. Vince is now on the treatment proposed by the Minneapolis neurooncologist and we are making plans for my oldest son to have surgery on his leg (in a way that they don’t do in Colorado) in St. Paul. My wonderful friend came with us for one leg of the trip and watched my other children in Minnesota while we went to the doctors. My sister flew to Chicago and helped us drive from Chicago to New Jersey. We were able to spend a long time with my wonderful mother and my son was able to keep up on his chemo treatments at CHOP. Kevin flew to Cleveland- I met him along the way and he helped us drive from Cleveland to our house in Colorado. Yes, it was a crazy trip. Yes, I had my six children seven and under with me. Yes, I saw parts of the country that I had never seen before. But the most important thing is that I learned some very valuable insights about my sons’ health conditions that will hopefully lead them to overcome them.
I will do it again, even this year as we make plans for leg surgery 1900 or 1000 miles away. I told you that I will go to the ends of the earth for my babies, or at least the ends of the country.
So, yes, I toured the country through children’s hospitals. Guilty as charged.
Posted in Vince's Brain Tumor Battle by Laura with no comments yet.