Some of you are already aware of this, but many of you are hearing this for the first time. The last several months Katharine and I have been faced with some challenging issues, mainly dealing with Elias’ care. An opportunity has presented itself to us, almost like it were truly meant to be. It is an opportunity to move to the greater Cincinnati area. Cincinnati Children’s Hospital is home to the Fanconi Anemia Comprehensive Clinic (FACC). We have been in contact with the program coordinators and they are excited to begin seeing Elias. They are also helping us to coordinate his other care needs with other disciplines, particularly in regards to his remaining surgeries to correct certain issues. This is a decision that was made based on what is the best for Elias. From the day we discovered that there would be issues, we have committed to doing everything possible for Elias to see he gets what he needs. Everything we do is for him, it takes parenting to a while new level, but something we could never imagine ourselves not doing. That is not to say it isn’t stressful, depressing at times, and honestly it can be very lonely. We are deeply committed to our son and are willingly sacrificing in everyway we can for him. We hope everyone can understand and appreciate our need and desire to do that.
Elias still needs his pull-thru surgery, which is the corrective surgeries to fix the imperforate anus and eventually reverse the colostomy. Cincinnati Children’s is home to two of the pioneering surgeons for the technique, so he will continue to be in good hands. There is an Aero-digestive team comprised of Pulmonolgy, ENT, GI & Pediatric Surgery that will also help to care for Elias. So everything our little man needs is able to be coordinated with the guidance of the FACC. It is becoming increasingly important that our doctors have guidance and understanding of Elias’ rare disease. Where we are currently, most of his doctors are active and open minded understanding that they have limited knowledge about FA. Unfortunately, not all of their colleagues are as open to adhering to the limitations and avoidances that should be practiced when dealing with Elias. We witnessed this first hand with another FA patient, Alicia this past week, if the doctors at the FACC did not intervene with the girl’s local hospital, she could have been put through something that potentially could have taken her life. It was not that the doctors were using poor judgment, they were following protocol for a typical patient and had no knowledge of FA or the limitations that must be followed. It took the mother of this child advocating sternly she would not consent until the Doctors at Cincinnati gave the green light. They did not and had her airlifted there the next day after informing the doctors of the terrible mistake they almost made. FACC is comprised of a team of physicians who are dedicated to working with other FA patients and research for better management and hopefully a cure. They are also a point person, so that one doctor oversees all of Elias’ care, which is something we lack here now. Talking with the nurse practitioner about Elias on the phone the other day, she was commenting that as his medical records begin to pour in, she appreciates how complex Elias truly is. Hearing about the things he has gone through then seeing it all on paper gave her a much deeper sense of how difficult things have been for him. It also serves as a bench mark for how far he has come and what we can do to help maintain that for as long as possible.
The hardest part in deciding for sure to go through with this was Elias’ surgeon. He has been amazing, and has saved Elias’ life multiple times. He is a fantastic doctor with a wonderful bedside manner and a dedication to each of his patients that few doctors share. Knowing there are equal quality surgeons on the other side does help. We have started to inform his doctors, but have not had the opportunity to speak with them all yet. We know they will be sad to see Elias leave, but will understand the need. Planning this move is certainly not easy. It is a logistical nightmare actually. Trying to coordinate services in multiple states to begin and end at just the right time, transporting Elias and switching out equipment are a few of the issues to overcome. There are many others we are diligently working towards as well along with all of the normal moving headaches.
We hope that everyone will support our decision to make this move, as it is truly what is best for Elias. We have spent many sleepless nights weighing out the pros & cons. This is a HUGE leap of faith and it will require a lot of support for us to manage this. Many of you have been asking since the beginning if there is anything you can do to help. Our answers has always been, support for now, but there will be a time down the road when we will need more. That moment has come.