Charlie wrote this to me today, "I see this constantly in your blog. Thank goodness for Ann and the rest of the Mattie volunteers who are there to fill in the gaps. There is simply not enough time in the day or energy outside of a nuclear reactor for dealing with all the stuff you have to cope with. This is especially true when Mattie goes inpatient. In the military, whenever we think of something that would be really helpful, we say, "they should have issued you one." Well, if you have cancer and you don't have a network, they need to issue you one! Fortunately, you have parents, SSSAS, RCC, your GWU family, and Pete's co-workers who all have stepped into the breech. I have no idea how all this could be coped with otherwise as you and Pete are putting forth superhuman efforts on Mattie's behalf!" Which leads in beautifully to the quote of the day......................
Quote of the day: Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call it, whoever you are, you need one. ~ Jane Howard
Despite getting up early today, we still couldn't get out of the house before 10:30am. Trying to pack things up, put our home in order before leaving, and getting Mattie physically ready just took time. We received an e-mail from Dr. Toretsky letting us know that everything was all set for Mattie's MTP-PE infusion today. When we walked into the hospital, to the fifth floor PICU, it was like going home again. We were greeted by all the people who know us. Of course there are components of the hospital that are like a ghost town since today is a holiday and also it is inauguration week. But what a night and day difference between the factory and impersonal environment of Sloan Kettering and Georgetown. Sloan may have the aesthetics and the more impressive facility, but in the grand scheme of things, who cares?! This is not what helps you through this nightmare and the day to day stresses. It is the quality and caliber of the people. In that department Sloan can learn a lot from Georgetown.
Mattie, Peter, and I spoke with Dr. Gonzalez about our Sloan trip and how Mattie reacted to MTP-PE. Dr. Gonzalez had us sign an informed consent form for MTP-PE and she also asked that Mattie sign a MTP-PE assent form (an informed consent form for a minor). I think that was a great idea, because this helped Mattie take responsibility and power over his treatment. At first he put up a fuss and did not want to sign it. He wanted Peter to sign it for him, but then I explained that only big boys get to sign such a form and I told him that signing the form meant that he was giving permission to the medical staff to give him medicine to fight the bone bugs. He liked that explanation and reached for the pen and signed the document. He had an audience while signing his form and we all congratulated him.... Laura (Linda's childlife intern), Swatii (Hem/Onc resident), Dr. Gonzalez (Hem/Onc attending), Dr. Natarajan (PICU attending), and a hospital volunteer.
Mattie was active today. Linda had left a care package of activities for Mattie to do. Mattie built a battery powered car. He literally did it himself today while Peter and I were unpacking his room. The car works very well, and Mattie was sending the car into the hallway and it caught the attention of a lot of people. Mattie was very animated. Mattie came to the hospital and was talking to people, but I have observed just seven hours back into this environment, he retreated back to just wanting to interact with Peter and I. This afternoon, Dr. Toretsky came to visit us and to check how things went in NY and to discuss the plan for the week. It was very nice of him to stop by.
So we arrived at the hospital at around 11am, and it is now 6pm, and we have yet to start MTP-PE or methotrexate. So it will be a long night here. At Sloan Kettering they post-medicated Mattie after MTP-PE administration with Demerol, but Georgetown wants to be more conservative and not expose Mattie to such heavy narcotics if they aren't truly needed. So we shall see how Mattie does today without Demerol. Mattie was premedicated with tylenol and Vistaril (an antihistamine for nausea) and then had his MTP-PE infusion at 7:10pm. It is completed now and so far he is doing fine without receiving Demerol. Mattie's urine pH is still too acidic so the methotrexate infusion can not be administered until he has met this (7-8 pH level) criterion. It is 9:44pm now and they are estimating that it will take two more hours before Mattie is ready for methotrexate to be administered. Getting the feeling it will be a long night for us?
We want to thank the Bires family for a wonderful dinner tonight. California Pizza Kitchen is one of our favorites, and I never tried a BBQ pizza, but it was delicious and Mattie enjoyed the pasta. We are trying to unwind tonight, but we also know we have a full night ahead of us, of capturing urine every four hours so that the efficiency and effectiveness of Mattie's kidneys can be assessed after being exposed to high dose methotrexate. We are in room 1 of the PICU, my all time favorite room (I am being totally sarcastic!). This room is right next to the tube system that shoots up medication from all over the hospital. It makes a racket, not to mention that we are the first room as you enter the PICU. The hallway traffic sounds are intense in this room. We were worried that we would not be able to get a sleeping chair in the room today, and Peter and I were wondering how we both were going to stay in the hospital overnight. It seems like all cots and chairs are being used by hospital personnel who are required to stay overnight for emergency preparedness due to inauguration activities. But we lucked out and one of the nurses found a chair for us.
I end tonight with a wonderful e-mail message I received from Mary Doane. Mary's family gave Mattie a "terrible towel" yesterday. I really did not know the story behind the towel, and Mary sent this to me today. I love the message behind the towel, and I am happy to support such a worthy cause. Mary wrote, "Interesting note ..Members of the Steeler Nation know all too well the story of the Terrible Towel. It was a brainchild of beloved and dearly departed Myron Cope during the Noll Dynasty. The magic of the towel lasted beyond the retirement of Chuck Noll, maintained its staying power throughout the entire Cowher age, and is still going strong in the early years of the Tomlin era. The towels are manufactured in Wisconsin by Chippewa River Industries. Proceeds from the sale of the towels benefit Chippewa, which employs the mentally disabled, and helps to pay for their care. Myron Cope also collected royalties and donated all of them to the Allegheny Valley School, a special needs place where his autistic son is a resident. Before he died, Cope bequeathed the Towel rights to the school, ensuring proper care for his son and for many others."
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