Dorothy Has a Point

That's why we're happy Jordan came home somewhere around 8 PM last night. . If it weren't for the bone pain in his left arm, he'd be feeling pretty decent right now. Come to find out, the antibiotics weren't stopped, they were only reduced, and the WBC responded by creeping back up to .3. With this persistent bone pain, we expect the WBC's have risen even more. And with platelets at 14K yesterday, we won't be surprised if he's sitting in a chair this afternoon getting another transfusion.. So it's off to the clinic to check our expectations against reality.

Written a little later: He tried to eat toast and scrambled eggs for breakfast, but it didn't stay down. The pain is increasing. I'm not sure he'll be home very long before having to be re-admitted. He tends to underestimate the pain level, and overestimate how he feels and what he can eat.

Written around 9 PM: WBC's were at .4, and platelets down to 9K. So yep, the afternoon was spent as we expected, receiving two bags of platelets. Hoping and praying for a better day tomorrow.

Ladies and Gentlemen, We Have an Appointment

But it's not until April 16th, a long time from now. We had our hearts set on an earlier date, as you know. The next treatment should begin next week, and we really want guidance in switching it to something more effective against this rhabdomyosarcoma beast. I guess we'd rather have the same old treatment than none at all though. And our doctor is leaning toward none at all, until after the Hawkins consult. Each treatment shows some benefit, short-lived though it is. The soaring LDH always comes down for a couple of weeks afterward, and we can't imagine what would happen if it were left unchecked for an extra week and a half. The doctor's pretty adamant about waiting, but he did say he'd take the BMB results into consideration. Fair enough, we're just as adamant, and will take it into consideration, too.

Platelets dropped to 7K, so another transfusion is on tap for today. WBc's were at .3 on Tuesday, but slipped back down to .2. Even though he still has a fever, they're stopping the antibiotics for a bit to try to get them to edge upward.

The second gaming session went well again. And we played the first ever April Fool's prank on our unsuspecting Brianna, a confirmed fan of sushi. A few weeks ago, Jordan requested rice krispie treats. They didn't do too much for him after all, but Brianna surprised us by taking a liking to them. She said they look like a food her parents made in the bakery they owned when she was a child. I scoured the internet in search of a tricky snack to send over with Shane for last night's party, and came up with the perfect recipe... mock sushi made with rice cereal. Mwahahahaha, it worked! Brianna got April fooled.

Waiting

They went ahead with the bone marrow biopsy this morning even though the platelets were only up to 12K. Jordan's fever keeps returning despite infusions of Vancomycin, a broad-spectrum antibiotic, and Caspofungin, an antifungal, both indicated in the treatment of febrile neutropenic patients. He's in good spirits though, and looking forward to tonight's gaming session. He and Brianna have requested the use of a room with a large table for this evening's gathering.

Dr. Z. contacted Dr. Hawkins of Seattle to schedule an appointment, but alas, it could be at least two weeks before there's an opening. The scheduler and I are playing our own little game of phone tag. I also got a call from a doctor at the National Institute of Health yesterday. He asked a lot of questions, and then said he'd probably call back today, after discussing Jordan's case with his colleagues, and let us know if Jordan is eligible for one of their clinical trials. So we keep waiting, waiting for the phone to ring.

No BMB Today

Why not? Jordan's platelets are too low, back down to 10K. HGB is already down to 8.5. He will get transfusions of both again today. The bone marrow biopsy is rescheduled for tomorrow. Fever bouncing around, down to 99.?, then up to 101.? Dr. Z said he'll try to get the Seattle appointment for next week. Ugh. This week. This week!

Our Prayer

Just as we thought he would,, Jordan received two units of packed red blood cells along with the unit of platelets on Friday afternoon. Still, he didn't get that little boost he sometimes gets after a fresh supply of blood products. At first, he thought we were making a fuss about how much, or little, he was eating, but in the last day or two, he agreed that it's a valid concern. He's tried to eat whatever we've prepared, even making suggestions, but he usually takes one or two bites, and he's done. He's not hungry, his appetite is just AWOL! His mainstays have been water, Sprite, ginger ale,, Dreyer's frozen Fruit Bars,, and 3-oz orange and vanilla ice cream cups. Throughout the week, he's nibbled a bit of a pasta dish, a bite of a grilled tuna sandwich, a few grapes, some pretzels, maybe ten peanuts, and he got down a smallish slice of pizza on two occasions. When he drank not one but two strawberry smoothies yesterday, we were cautiously exuberant. Too much sugar, we wondered? This morning we tried a thin soup of chicken broth and potatoes smoothed out by a few seconds in the blender. He got all of it down! Maybe four or five ounces worth! True, it was like taking a big dose of medicine, all for the noble cause of nutrition. But then, oooooooooops, it didn't stay down. Back to ginger ale. And how about some raspberry yogurt? Yes? Good, here you go.

At this point, Shane and Brianna and I departed for church, leaving Dan and Jordan with strict instructions to get the labs done before we returned. We anticipated spending a nice, quiet afternoon together, doing some reading, a writing project, a little paperwork, mainly relaxing. When we pulled into the garage, we noted Dan's car was there, and we thought all was going according to plans. While at church, several friends had greeted us happily, concluding that Jordan was home and doing well since Brianna was with us. We tempered the conclusion a little by explaining he was home, but he wasn't feeling as well as we'd all like. When we walked in and Jordan was nowhere to be found, it was a let-down to learn that he hadn't been able to come home because he had a fever. Brianna swiftly gathered clothing, the laptop, books, a little food, and Dan took her to join Jordan for at least one night in hospital. His throat has been slightly sore for a couple of days, so maybe the blood cultures will turn up something this time. For now, he's receiving saline, antibiotics, and TPN, total parenteral nutrition. From Wikipedia: "TPN is the practice of feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas containing salts, glucose, amino acids, lipids, and added vitamins."

No one looks forward to a bone marrow biopsy, but we hope Jordan's will take place tomorrow nonetheless. We feel we're on a tight schedule, needing to do the BMB, allowing pathologists ample time to process the tissue samples, and then traveling to Seattle before the week is over. Unless Heavenly Father has another plan, a better plan, this is what we're praying for.

Here We Go, or Don't Go, Again

Back on Feb. 6th, a time we called our day of desperation, Dr. Z. walked into Jordan's hospital room with a bombshell of an announcement. "I may have to transfer you to Ohio for treatment," he stated, setting off waves of confusion and panic within us. We flew to the phone and the computer in search of treatment options closer to home, only to be encouraged to remain in Boise after all. Seven weeks later, no one so much as batted an eyelash today upon hearing that Jordan may be sent to confer with a sarcoma specialist in Seattle. This time, we are more than ready and willing to go! A consultation with a specialist is far less daunting than being packed off for months and months of treatment in a faraway place, and we have felt all along that we need a specialist on board. So, on Monday, when Jordan goes in for a bone marrow biopsy, we hope to learn more about this possibility. They couldn't recall the Seattle doc's name, only that it was Douglas something or other. A few minutes alone with the internet, and I think I may have found him. Could it be Dr. Douglas S. Hawkins? Stay tuned, for we shall soon see.

Jordan has been especially weak over the last few days, and he continues to be able to eat very little. He's lost another ten pounds, down about 30 pounds since Jan. He has one small mouth sore, and is in the midst of his first brush with thrush. It's in his mouth, and according to the doctor, it could very well be in the esophagus too. He started taking an antifungal, Flucanazole, and from more of our internet reading, he'll try to add a bit of unsweetened yogurt to promote the colonization of helpful bacteria that antibiotics often, or maybe always, destroy. Lots of antibiotics and a weakened immune system make candidiasis almost a given. The doctor also told us that he thinks he's figured out why Jordan was in so much pain last week. It was the Zometa. Humph! He wondered aloud if the high calcium reading was a mistake. Our feeling is that it was not. The calcium level slowly rose throughout the week. Now if the blood chemistry tests had been done every day, we could be certain, with no need for second guessing. We prefer a closer watch on all these crucial blood chemistry, and whatever else they're called, levels. Take LDH for example. We don't understand all we'd like to about it. We do know that when it rises, it's bad news, and when it rises a lot, it's really, really bad news. Oh, I hope that isn't too technical for anyone. Last week, it was at 1100. Today, 1584. Normal is about 200. That's bad news.

Jordan located one of his former role-playing buddies earlier this week, so he, Brianna, and Shane, along with the found friend, Ryan, and his wife, Audra, all enjoyed a six-hour escape into the world of fantasy games this evening. They plan to get together for another round of fun next Thursday. But next up on his agendum, Jordan gets two more bags of platelets tomorrow. They were down to 15K today. Hemoglobin was at 9.4. A little lower, and he'll be needing a serving of packed red blood cells along with those platelets. WBC's are abysmal at .1. We hope Neupogenn does its thing (stimulating WBC production), minus the bone pain!

So Long

Oh, we're not going anywhere in particular, just to do daily labs, but it was yesterday that seemed so long. With Jordan's youngest brother, Shane, on spring break from high school this week, Jordan really enjoyed having him as his chauffeur for the day. Having one of his brothers around gives him a boost of energy and well-being like nothing else does! Even the nausea cleared as the day wore on, and on, and on.

First stop was the clinic for a CBC (complete blood count). Wo Nelly,, it showed a trip to the hospital for a couple of bags of platelets needed to be added to the schedule. They had fallen from 21K to 9K in one day! It takes the hospital a couple of hours to prepare for a transfusion though, so that left plenty of time to visit Brianna's attorney who is helping her work through the labyrinth of requirements for gaining permanent U.S. residency. We've heard enough stories of botched immigration applications, and the stakes are so high, that we gladly forsook our mostly penurious ways to enlist the aid of an experienced immigration attorney. She gave Brianna a copy of the following letter written by Jordan's doctor for inclusion with the application.

March 4, 2008

To Whom It May Concern:

Mr. Washburn is suffering from metastatic sarcoma to bone marrow, stage IV. This is generally considered a fatal illness. The presence of his wife, Brianna, in my opinion, is considered essential to this patient's health at this time. His wife has been extremely helpful for allowing us to provide chemotherapy to this patient, keeping close records of his care and his side effects, and notifying when there has been a change of condition. The patient has required numerous hospitalizations for infections while receiving chemotherapy.

We are respectfully requesting that his wife, Brianna, be permitted to stay in this country to assist us in managing Mr. Washburn's malignancy.

Yours truly,
Norman Zuckerman

So yesterday's meanderings led through the clinic, to the attorney, the hospital, then on to Best Buy, Carl's Jr., and a place called All About Games. They left home at about 11:30, and didn't return until after 8 PM! You'd think retiring to bed would be the next move, but no, Jordan stayed up until a little past midnight. We were waiting and worrying at home during all these activities, but are pleased and happy that he had the stamina to go out and seize the day!