Doc Hawkins Comes Through

We decided to go for it yesterday! We talked to everybody who set foot in Jordan's room about arranging an electronic consult for him. Dr. Z. said no. Mary, the social worker, said she'd help in any way she could. One nurse thought it wouldn't work. Another couple of nurses said it couldn't hurt to ask. The cleaning lady didn't say much one way or the other. But all our friends and family agreed wholeheartedly that it was the perfect solution.

So, why not contact Dr. Hawkins ourselves? He willingly makes his voice mail, email, P.O. Box, and other contact info available. We give high marks to any doctor who's that accessible to his patients. This is the email we sent:

son critical. may not make 1st appt 4/16. please help. rhabdo moving fast!

Dear Dr. Hawkins,

We need urgent guidance. Jordan's LDH is at 7,662; extremely pancytopenic; transfusion-dependent;WBC laboriously climbed to a high of 600, dropping today to 400. Time is running out. He feels he may not even be alive by next Wednesday, the 16th, for his consult with you. If he is, then there is a question as to whether he will be well enough to travel. He's on a morphine drip due to incessant, severe bone pain, and is newly nonambulatory. Hoping for an earlier appointment, or for an electronic consult via Skype, satellite,or any other means of your choosing. Please help.

Sincerely,
Bonnie Washburn
Mom of Jordan McKay Washburn, 3/16/82 HEM/ONC: Dr. Norman Zuckerman, Boise, IDSt. Luke's Regional Medical Center, (208) 381-2222Mountain States Tumor Institute: (208) 381-2711Dx with mets ARMS 1/10/08two rounds each of VDC + IE

A phone call to Neda, his administrative assistant, was our next step. She repeated the gist of his voice mail message (something we'd already heard when we'd called), that he was out of the office until the 16th, the day of Jordan's appointment. She assured us that Jordan was in their system, that the doctor had reviewed his medical records, that asking about an electronic consult with him was a good question, and that we'd get a call or an email from him or his colleague very soon. The day passed quickly, with two of Jordan's brothers arriving for the weekend, but, disappointingly, without any word from Seattle.

Starting around 9 AM, Jordan dealt with a 4 hour, platelet-depleting nosebleed. With counts already very low, this caused a flurry of activity as various methods were employed to stem the flow. More transfusions, the 20th of packed red blood cells, and the 27th of platelets, were ordered, ice packs and pressure were applied, both leaning forward and backward were tried, a second CBC was drawn to check the platelet level for the safety of packing his nose. And in the midst of all of this, Dr. Montgomery, the on-call doc, who had been in earlier this morning, came in with welcome news - Dr. Hawkins had just called. In his view, the diagnosis of rhabdomyosarcoma is accurate. He described a new chemotherapy protocol that might be beneficial, although there is no conclusive data on its efficacy. Temodar, in capsule form, commonly used in the treatment of some brain tumors, and Camptosar, AKA Irrenotecan, used in treating colon cancer, combined with Vincristine, was his recommendation for Jordan. Dr. Montgomery said that if we did nothing, we knew what would happen. This regimen gives us a chance. A chance to keep Jordan with us is a chance we will always take! So we've jumped. Chemo started late this afternoon.

Other matters of interest occurred today as well, for which we are grateful, but they will be described later.