Big Possibilities

Way back on March 17th, we contacted the NIH (National Institutes of Health) in hopes of finding a clinical trial for Jordan to participate in. It's a huge deal, so it has understandably taken a few phone calls to get to this point, but today we were told that they are interested in pursuing something that might help him. A bone marrow transplant! I think they may have been swayed upon hearing he has six brothers, at least one of whom will surely be a perfect match as a bone marrow donor. Roll up those sleeves, boys, ve vant to test your blood.

We've given the NIH coordinator Dr. Z.'s phone number, and asked him to persevere even if our doc's response is less than enthusiastic. It's taken a month for them to decide they're interested. For all we know, it may take another month before they contact Dr. Z. By that time, our mythical mind control methods will have convinced him to cooperate fully. In any event, treatment will continue here, and we will likely have a consult in Seattle with Dr. Hawkins in a few weeks.

Jordan came home for a few hours this afternoon on a hospital pass. Had it not been for spiking a fever last night, he would have been released today. After twelve long days and nights on a squeaky, automatically re-positioning, thin, hospital mattress, his own bed feels luxuriously inviting. But no bed is comfortable 24/7, so, the amazing Jordan did take himself up from his bed, and walk to the family room for pizza and a movie, followed by a small serving of peach ice cream. He was loath to return to the hospital for the night,, but if all goes well, he'll be back with us tomorrow, until it's time for the next round of wonder drugs.

This morning's CBC revealed Jordan's hemoglobin rose for the third consecutive day. On the 12th, the date of his last transfusion, it was at 7.8. Naturally, it was higher the next day, at 11.1. Then it began the all too familiar decline: 10.5, 10.2. But wait, then it commenced this encouraging climb, 11.0, 11.6, and now, 12.1. WBC's are sitting at .3. Platelets dropped from 18K to 13K. Ordinarily, a platelet transfusion would have been ordered, but the doctor wants to give it one more day to see if they'll turn around and head in the right direction.

The People's Republic of China

Jordan is slooooowly beginning to feel better. His Hemoglobin increased for the second day in a row. WBC's stayed the same, .3; and the platelets dropped back to 18K. He is very tired, and unusually quiet, but he's determined to hold the role-playing game session scheduled for tonight with Brianna, Shane, Ryan, and Audra. Having a great time has always been a high priority for Jordan! And while he does it, we get to laugh right along with him.

For example, when Jordan taught English at the foreign language school in Dongguan, he and Brianna became good friends with a colleague, Alex, who hails from Great Britain. Alex recently sent a few video clips of random scenes from their outings together.

For behold, are we not all beggars? MSH, 4:19.

Jordan lends a helping hand to a Pamphlet pusher

Keeping China beautiful!

Shopping

Diplomacy

It's certainly called for on many occasions, including the one at hand. Last night, a couple of nurses were annoyed with us for insisting, to no avail, that the Atropine should be continued. We were told that it was never given with chemotherapy. This morning, the doctor wrote orders for it to begin once more, and the accompanying nurse was annoyed when Brianna mentioned the previous evening's confusion. Feeling that our own research is necessary, we've located two articles showing that the mere addition of Atropine is probably ineffective at this point. We hope these up-to-date recommendations will be implemented if the Atropine fails to improve the situation.

Today's CBC gives us reason for renewed optimism. The WBC rose to .3; platelets rose from 18K to 20K; HGB increased too. This is a very good sign. When Jordan begins to produce his own blood cells, it's a very big deal! The LDH dropped by almost two thousand points, as well.

Dilemma

We've been given conflicting information. In an attempt to resolve it, we've emailed the Rhabdo-Kids list the following request:

Hi All,

Our Jordan's treatment has been changed from VDC + IE to Irinotecan, Temidar, and Vincristine. The new protocol started last Saturday, 4/12. He was premedicated with three anti emetics, Decadron, Ativan, and Kytril. We resisted the Kytril because it causes Jordan's heart rate to decrease to about 40 beats per minute. The nurse called the pharmacist to Jordan's room to assure us that this would not happen again, that it had only happened in the past because it was given with other closely related antiemetics. Atropine was the fourth and final drug in his premed combo. It was explained at that time, that the Atropine, usually given for cardiac issues, was to prevent diarrhea, Irinotecan's chief side effect.

Just as we feared, Jordan's heart rate dropped to 40 BPM today, and the Kytril was discontinued. The problem is that the Atropine was discontinued also, and diarrhea has begun. We are now being told that the Atropine was not given to prevent diarrhea, that it was linked with the Kytril, and that since the Kytril has been discontinued, it should be discontinued as well. Meanwhile, the diarrhea intensifies. Please fill us in on which premeds are commonly used with Irinotecan. The confusion is creating a bit of tension with one or two members of the hospital staff.

Best regards,
Bonnie, mom of Jordan
dx 1/08; mets ARMS

Jordan has been sleeping much of the day, and has experienced some dizziness. His WBC has fallen to .2, also written as 200,. We are happy to report, though, that since Sunday, he has been able to resume walking.

Thank you for your emails, comments, and prayers. They continue to bless and encourage each of us.

Phone Call

The phone rings. Bonnie answers, "Hello?"

"Zubbazura Zur."

"I'm sorry. I didn't understand you."

"This is Dr. Hawkins."

"Dr. Hawkins?"

"Yes, I got your E-mail. I'm on the road now. And I'm just calling to see how Jordan is doing."

...

We're totally amazed, maybe even starstruck. How cool is that!

Three Cheers for Good News!

Jordan woke up Sunday morning with a normal temp, and pain free! And so far, it's holding steady. Yesterday's counts were a little better than they had been for a few weeks, but today's counts drop slightly. The morphine drip has been titrated down from 12 MG/H to 5 MG/H per Jordan's request. We sent off a letter of thanks to Dr. Hawkins, and many prayers of thanksgiving have been sent heavenward.

Saturday morning, we had a fortuitous meeting in Lowe's. As we were paying for our purchase, the friendly cashier noticed the name on the debit card and asked if we happened to know a Jordan Washburn. He told us that Jordan's last day in the Philippines San Pablo Mission was his first day there. They had met and talked a bit that day, and a couple of years later, they had both participated in BARCADA, a Filipino-American club sponsored by Boise State University. We gave our new acquaintance, Phil Meyer, Jordan's contact information, and he called their former mission president, Pres. Osmond, who phoned Jordan right away, and then followed up with an E-mail notifying his mission of the events of the last four months. Happily, Jordan has received 7 E-mails, two visits, one phone call, and a blog comment as a result of this unexpected encounter. We've been told that more faithful pray-ers are bringing his name and needs before the Lord as well. Salamat!

Visits from his brothers are another source of strength and support to Jordan. They have all rallied behind him with noticeable uplifting effect every time. This weekend was no exception. Ethan & Missy, and Kimball turned the weekend into one long party! Greg & Lesley, and Neil have previously done the same. All of them on several occasions, actually. They live in CO, AZ, and WA, so it's no easy feat to visit as often as they do. But when they come, they know how to make the good times roll.

Delicious Meal courtesy of Missy

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.