Saturday, March 7, 2015

2.5 Years Stable!

Michael and I have been talking about switching care from Dr. Shields at Will's Eye to Dr. Singh here at the Cleveland Clinic.  Why?  Well, for number of reasons, but one of the main reasons is, of course, insurance woes.  

We have been here in Cleveland for over 18 months now, and I have continued to travel with Eddie to Philadelphia for his eye exams under anesthesia.  We learned very quickly that our insurance provider didn't really like that.  Why?  Because Dr. Singh here at the Clinic treats retinoblastoma, too.  We have house staff insurance since Michael works at the Clinic, and so anything we have done at the Cleveland Clinic is pretty much covered.  It's great.  But if you venture out elsewhere, especially when it can be done here, you're out of luck.  Our insurance told us last year that they would no longer cover ANY of the cost with Dr. Shields at Will's Eye Institute.  

I was not ready to switch to someone else, and so we travelled up to Philly after we moved here.  He had his EUA and fortunately, all was well and stable with his eyes.  Then we returned to Cleveland and started to receive bills in the mail.  Bills from Shields, from the Will's Eye Hospital, and from the Anesthesia group.  The total was upwards of $6000  I couldn't believe it.  He was in and out of the OR in less than an hour.  How could this be so expensive?  But those are the costs when you don't have insurance covering your back.  Call me crazy, but I was still torn. We started with Shields, we knew her, she knew Eddie's whole history, and I didn't want another pair of hands working on his eyes. Besides, this was not Shields' fault or issue.  This was purely an insurance, or lack there of, issue.  We received another 6 month pass from Shields, and so we had 6 more months to think about this.  

I was freaking out.  His next EUA was scheduled for October 1, 2014.  It was going to take place right before his Make-A-Wish trip and I didn't want to switch again.  I wanted to stay the course.  Michael thought this was nuts and he was really hoping I would change my mind, but I didn't  Yes, I knew it was insane, but I kept telling myself it was worth it for the good news. We decided to pack up again for an EUA in Philly.  The day before we left, we received a phone call from Will's Eye billing department saying that this time, since insurance is officially not working with us, we have to pay up front, before the procedure.  The lady said his name would not be on the schedule unless we paid now over the phone.  Literally it was September 30th, we are dropping the dog off at the kennel, throwing suitcases in the trunk, preparing to drive 6 hours across the state of PA and we are charging almost $6,000 on our credit card to make sure his name was on the surgery list.  

Fine, this was crazy.  The added stress of the money and bills did not help our already frazzled selves the day before his EUA.  But, the next day we received the news we wanted to hear.  Stable.  And we were off to Disney World for a worry free week of sunshine and fun.  Again, we had 6 more months to make a decision.

I pretended not to think about it, and whenever Michael brought it up, I quickly changed the subject.  As crazy as it sounds, I didn't want to switch.  You just get comfortable in your routine, and we had a routine at Will's Eye.  I had family support there and Eddie would get to spend a week at Grammy and Pop-Pop's house.  But, Mike brought up a really good point, bringing me to terms quickly.  It would be best to switch care to another doctor when Eddie is stable.  It would be terrible to switch care during bad times, bad news, perhaps, if the cancer started to come back or grow.  THAT would be extremely hard.  And, to be honest, how would we ever be able to afford active treatment at Will's Eye when we can barely afford his EUA when he is stable and receives no treatment at all.  Those bills would be astronomical. 

So we made an appointment for an in office visit with Dr. Singh.  We told him about Eddie's medical history and the issues we were facing and he wanted to know, "Do you want to do the EUA next week?  Pick a Friday and let's just do it, and get it over with."  And so, Eddie Spaghetti had his first EUA here at the Cleveland Clinic with Dr. Singh yesterday March 6th.  And, after all of the worries and overthinking and stressing about everything, his eyes were stable and we have received another 6 month pass!  Eddie's retinoblastoma has now been stable for 2.5 years!

I am incredibly grateful for Dr. Shields and the journey we have had with her thus far.  I am also incredibly grateful for Dr. Singh and his ability to reason with me and give me enough confidence to make the switch.  I obviously know that if the cancer comes back, it will come back, regardless of the doctor.  I also know that these insurance issues are just another part of life.  As much as fighting cancer is a noble cause, it is also a business.  I called Will's Eye and was able to talk to Dr. Lally, who works with Dr. Shields and was sure to pass on our news of our switching care.  She assured me that they totally understand, and that they would be there for us whenever, if, we needed them.  

For the first time in 3 years, Eddie and I can visit Grammy and Pop-Pop's house without having an EUA hanging over our heads.  And, for the first time in 3 years, we are receiving medical care that is fully covered by insurance..... holy cow!