Worse than thought

Joe and I feel like we have been hit by  a MACK Truck since 2PM yesterday. Upon arriving at Bush Airport, picking up our rental car, and lunch, we received a call from MDACC Leukemia Department that the Lymphoma Department would see up at 2:30 and be there at 2PM. We arrived there at 2:10PM and promptly saw Dr  Romaguerra's nurse who started to speak to us what seemed like a foreign language. I stopped her and told her that she needed to be aware that this is a cold call and that we know nothing about what is going on. It did not take too long to realize that our world had changed to a massive hurricane. Dr Romaguerra spoke with us and stayed with us for hours yesterday with grim news. Joe had a very aggressive form of Mantle Cell Lymphoma and it was more complicated with Joe already having Myelofibrosis. He recommended doing the HyperCVD chemotherapy and later on adding the Rituximab down the road. He said it would had been toxic if he had started on the Rituximab as the Leukemia had set up until I had asked for a Lymphoma consultation. He said it was urgent to get the white blood count down quickly. Joe would need to have apheresis done to get rid of a bunch of his white cells. The doc was ready to admit Joe immediately but the saving grace was that Joe's white blood count was stable from 9/21. Joe really wanted to spend one night in the WESTIN and have a good meal.

Barbara Beckman was waiting in the lobby area near the fish tanks to join us and Nancy and Dan Carr for dinner at Houston's Restaurant which we had previously arranged before all this insanity happened. I met Barbara and Nancy via the on line MPD Support and they both see Dr V since they are on the INCYTE and have a MF and PV respectfully. Barbara is from the Seattle, Washington area and Nancy is from Dallas, Texas. What a great dinner and time we had before Joe and I checked into the WESTIN. It helped us get some relief from the gravity of the day. Thank you Barbara and Nancy!

The WESTIN has put us first in an handicap room which would not work. They changed our room at my request.The WESTIN beds are amazing but the night brought us both a fitful rest with some tears, holding each other and plain talk.

Our appointment with the apheresis  doc was at 9AM on Tuesday. When we arrived there, the desk nurse sent us elsewhere then they sent us another place then another, When they told us, where we were suppose to be and do, it was the old plan but no one would listen to me. I was exasperated and in tears when a male nurse took us to a private exam room. He called Keating and Korbling, Finally it was straight and Korbling, the apheresis doc, came to where we were. He reviewed Joe's medical records and lab work carefully and sent up for more lab work. He personally walked us over to the Apheresis Department and from that point on we were given the red carpet treatment.

The apheresis took about 4 hours and Joe snored away. The nurse watched the machine and measurements constantly while Korbling checked on Joe every 15-20 minutes. Joe felt terrific after that was done with so many of those excessive white cells gone. He was upbeat!

Next stop was to check into the hospital and now Joe is in the chemo hospital ward on the 10th Floor. So many people coming in and out, nurses, LPN, techs, PICC, IV's that would make one dizzy. Each would explain what they would be doing and how it would be done. Massive information overload! Our lovely Chinese couple, Yan and Hang, dropped by this evening. It surprised Joe and made him so pleased. We met Yan and Hang through the AMIGO program while Yan was attending Emory University. They celebrated Thanksgiving with us last year and we have been friends ever since. Now Yan is studying for a doctorate in Public Health right here at the Texas Medical Center. They live only 5 minutes away. Blessings continue in so many ways. What a special gift from God with our adopted Chinese family!

Another amazing blessing from God and truly a gift is Joe's brother and sister in law will fly to Houston on Friday to be with Joe as I go back to Atlanta to get more clothes, settle business, get MAX and our car. I was so worried about Joe being without someone and now he has Drew. Thank you Drew and Josephine. Yan has offered to pick them up at the airport on Friday and bring them to their hotel. Another blessing! Drew's hotel is very close to the hospital and the hotel has shuttle service.

I was able to find short term housing at the Homestead Suites that have king beds and allow pets. It is about 9 short miles from the hospital and in a great location for future needs. Another friend, Chris Ellis, sent me a link to ministry housing apartments so I applied on line for that. I asked Pastor Caleb to see if he can assist since there were several Presbyterian churches locally who participated. I need to find a Presbyterian Church nearby that I can attend during our extended stay. I will work on that.


Joe is having X-Rays one right now to make sure the PICC

Thank you to my sister, Dolores, for making Joe laugh. I love to see him laugh. Thank you to our son, Michael, for calling and expressing his love to Joe and me. Thank you to all the e-mails and love being sent. WE FEEL THE POWER!

Good night our dear ones. God is directing the events.

Ciao,
Bonnie