01/25/2011

We had our appointment at City of Hope yesterday.

First...I HATE CALIFORNIA! EWWWW... NEVER will I do that again! That was awful. I now know why everyone moves from there. YUCK!

K...moving on. We arrived at City of Hope. First impression...gross and very dirty. Want to hear another issue I have with the medical profession? Please bear in mind I work in this profession. ZERO CUSTOMER SERVICE. If you want your hospital to be considered the best of the best. Please hire someone to do the cleaning. Please do not make cancer patients pay for Valet parking. Please do not make them stand in line like cattle awaiting slaughter. Not a very good first impression! Next, I know you do this every day but it isn't every day that people are fighting for their lives and offering themselves up to you to poison them. Please give them the courtesy of explaining the process and again, having some customer service. Whew...I think I can move on now.

Next we met with an oncologist. His demeanor was that of a scared cat caught in the corner by a large dog. Oh quick, another issue I have...if you have a three inch size record that has been sent...please don't waste our precious time with you asking for a repeat of everything you should have read before you even saw us!!!!! Grrrr. So once we got to repeat our now infamous story that is in a very large chart, we finally were able to ask some questions.

"His" recommendation was "if" you are disease free, then go towards the transplant route. Knowing the details of the cord-blood transplant, his opinion was that this was a good route to go. "IF" Jeremie is disease free, then a cord-blood transplant would give him approximately 40-50% cure rate. "IF" the disease comes back within two years of transplant, then move to a containment strategy. "IF" we really wanted to see if the 9/10 donor bone marrow match was a preferable match, instead of cord-blood, then Jeremie needs to do another consolidation with Clofarabine (chemotherapy) ASAP with another bone-marrow biopsy and MRI of T & C spines. Meanwhile testing where the mismatch is on the donor bone marrow. Or "IF" Jeremie is disease free then going a head with the cord-blood transplant as soon as possible.

So we didn't receive any magical or Ah-Ha news (yes, we were secretly hoping). It definitely gives us more faith in LDS hospital. Jeremie feels better about possibly going down the transplant route. And we can stay in network with our insurance and move on with this process.

Called our oncologist office today and set up an appointment for a bone-marrow biopsy. Called and left a message to consult/conference call with LDS to see their thoughts and opinions. Now just waiting to move on. Jeremie isn't feeling the best. His back has started hurting again. We are hoping it has been because of all the time we have been in the car over the last two days. My gut says it isn't because of that. Course my gut is paranoid these days.

And by the way...since I'm on a rant today. I work for an agency that primarily works with medicaid-only clients. I know my clients don't have another choice in providers, I know they don't want to come in, and I know that it is a scary process. Everyone I work with is exceptional in the service and commitment they have to our population. Our buildings are clean, beautiful and welcoming. AND OUR CLIENTELE DOESN'T HAVE A CHOICE. So if you want people to come to your place of business by CHOICE, have some customer service and professionalism. Grrrr!

Can you tell when I'm stressed were I like to take my frustration out at??? ;-) I seriously need to exercise!

Well until we have more news....

Love,

Cori