When we had our first meeting with Dr. Ehmann, I was not thrilled with his personality. Now, while certainly I do not use that as a deciding factor, Scott and I certainly were left with the impression that our concerns were trival.
But Dr. Shah did recommend Hershey and Brian's pediatric oncologist didn't have anything negative to say. SO we moved forward...with some doubts...
Some of our concerns certainly were over the procedures and the traveling back and forth. His response was that "they were handled by his team and would be dealt with. Silly me...I assumed that meant that my concerns would at the very least be listened to....Obviously as I found out later, my concerns were of NO concern to Dr. Ehmann.
It's really very basic...it is almost a 3 hour drive to Hershey from where we live. That is a large expense in gasoline at almost $3.00 gallon in my vehicle which gets about 13 miles to the gallon. It is also a great deal of mileage on a 18 yr old car. (that has 258000 miles on it)
after such a long time of dealing with Brian's cancer and continued medical expenses for 10 years, we are simply not in the position to incur new car expenses. Nor any expenses that are not essential. Right now Scott is the only one bringing in a salary though certainly Stephanie donates as much of her tip money she can. There are no magic cancer money fairies. (which is why we appreciate any donations we receive so much).
When I explained and then insisted some of the travel be cut down on, and asked why we could not have some of the procedures done at Lehigh (the lab work to show what diseases Brian has/had/been exposed to) Dr. Ehmann's nurse told me that it wasn't allowed. I insisted she tell me who didn't allow it (thinking I could have a discussion with someone else and explain the situation) and she told me the organization that accredited the hospital with it's transplant status. That is the Foundation of accreditation for cellular therapy.
SO I called them and asked the questions....the foundation told me that any major hospital that used FDA regulated tests could do that testing and in fact, many patients had parts of the procedure done at other hospitals sometimes including the stem cell harvest (which I was not asking for) When a patient lived a distance from the hospital.
Dr. Ehmann called me directly and told me that the lab work and our coming to Hershey for the lab work (and to sign the consent papers...hey even hear of a fax?....that is even legal..)was Non- negotiable. Now...what exactly the reason for that I don't know. (insurance money?....just to be a pain in the ass because I dare question?...only he knows those answers) I decided right then and there that if something as simple as having lab work done was enough to cause a blatant untruth to be told to me, then any confidence I had in the doctor was gone. It is just that simple. How can I trust someone like that with the life of my child?...and yes, even at 23 he is still my child...my very sick child.
Is Dr. Ehmann a good doctor?..well HE thinks he is...and I really do not know..he might be the best in the world, but he is not for us...just that plain and simple. I did not feel like he listened to my concerns, nor addressed them in an acceptable manner. And he did not listen.
SO we chose to go elsewhere. Got Questions or comments?...feel free to leave them...
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