Here We Are

When Jordan was eight years old, his grandpa spent several months in a hospital, located about three hours away from our home. We loaded up the family station wagon three or four times with our then six sons, telling them that we were going to Seattle. On one of our last visits before grandpa was able to return home, two-year-old Colin finally found the words to ask the burning question, "Who's Attle?? :)

For all who have hoped with us that we would See Attle this week, or more specifically, that we would be able to see Dr. Hawkins, we need to let you know that it was necessary to cancel the trip. We did, however, participate in a conference call, which included Jordan, Brianna, both Dr. Zuckerman and Dr. Hawkins, Jordan's parents, and other hospital personnel. It has been recommended, (and much thought and prayer are being given to the recommendation), that it is time to shift to a palliative approach to treatment.

You will be glad to know that the pain is under control once again. We would also like for you to know that we are in awe over Jordan's calm strength, his gentle consideration of Brianna, and all others, and the steady, unfailing courage we see in him each day. Don't discount our admiration for him because he is our beloved Jordan, for many have spoken to us of his remarkable attributes and disposition in the face of this tremendously difficult trial.

This Is So Jordan: emailed from China on 3/21/2007

NOTE: Briannas answer will be first, Jordans answer second.

1. What time did you get up this morning? 9:15am / 10:30am

2. Diamonds or Pearls? "Probably pearls because pearls can be eaten." / (In reply to Brianna,"What???") Diamonds.

3. What was the last film you saw at the cinema? The mission impossible with Tom Cruise / Same

4. What is your favorite TV show? The Homeless (some japanese show) / Star Trek

5. What did you have for breakfast? Rice powder rolled in a ball with vegetable soup. / Chocolate

6. What is your middle name? Chinese people typically don't have middle names / McKay

7. What is your favorite Cuisine? Chinese Guangdong Province food / Rice and pork with spinage

8. What do you dislike? Hunger and being cold and sickness and being lonely / The question is broad enough that it would take me more time than I'm willing to spend trying to figure out some sort of a conclusive answer. If I just name a few things I dislike it would not really be an accurate representation. If I try to label a single thing I dislike I can always think of something I dislike more. For example, if I say "I dislike leg cramps" I then feel like erasing it and saying "I dislike it when my teeth hurt." (Since my teeth hurting is a larger problem than a leg cramp, not that either of them are large problems really.) But now I just noticed something, which is that both of the things I listed were types of physical pain. So I would say "Physical pain" as my answer except "leg cramps" and "hurting teeth" were only EXAMPLES and not actual things that I think of when I am thinking of things I dislike. Now you are beginning to see what happens though when I try to make a list of things I dislike (all these thoughts go through my head in like 2 seconds, over and over, in all sorts of variations) so I hope you can forgive me for not putting an answer to this question.

9. What is your favorite potato chip? Regular standard non flavored (but salted) chips / Probably KC Masterpiece or whatever it is flavored chips from America.

10. What is your favorite CD at the moment? Don't have CD / My WarCraft III CD.

11. What kind of car do you drive? Don't know how to drive and don't have a car / None, I take a taxi or what-have-you. We will buy a bicycle in the summer though, we think.

12. Favorite Sandwich? I don't eat sandwich / The one described in The Princess Bride, except substitute bacon for mutton.

13. What characteristics do you despise? Tons. Arrogance, Cruelty, I don't know now. / I would imagine most people don't realize that this question (along with many questions) are extremely vague. All the question asked is "What characteristics do you despise?" not "What characteristics do you despise, IN A PERSON." So I'm going to assume it is asking "What characteristics do you despise, in a bowl of rice." My answers, hardness, too hottiness, burnedness, not cooked well enoughness, and sogginess.

14. What are your favorite clothes? Stylish ones and good materials and fit me / My brown cargo pocket pants whatever those are called, and my green "lucky" shirt.

15. If you could go anywhere in the world on vacation? America / An undiscovered (in modern times) cave that has 15 billion dollars worth of jewels and gold and stuff in it, and I'm not trapped in it or anything..and there is nothing stopping me from cashing out on the contents or anything.

16. What color are your eyes? Brown / Green

17. Favorite brand of clothing? I don't know brands / I don't care

18. Where would you want to retire? Somewhere warm and clean with fresh air and beautiful / These theoretical questions are really tempting me. Where "would" you want.... it makes me want to type something like "A place where if I am there I instantly have infinity wishes and unlimited power." But I'll stick with a more normal answer and say "Where ever Brianna is."

19. Favorite time of day? Sleeping time / Sleeping time

20. Where were you born? Dongguan, Guangdong, China / Moses Lake, Washington, USA

21. What is your favorite sport to watch? Olympic games / Not sure

22. Who do you think will not send this back? Myself / I don't know... these questions are tricks anyways to try to get the people who fill these out to provoke others into sending them.

23. Person you expect to send it back first? Someone who hasn't done it yet / Whatever

24. Pepsi or Coke? Whats different between pepsi and coke? / None

25. Cats or Dogs? Dogs / Dogs, but I like cats too

26. Are you a morning person or a night owl? I was a morning person but I'm getting poisoned by Jordan / Night person

27. Pedicure or manicure? The one for your hands / whatever

28. Do you prefer funny or mushy cards? Funny / Funny

29. Any new and exciting news you'd like to share with everyone? We are at home (what she means is we are at her parents home in Guangdong) / No.

30. What did you want to be when you were little? Model or a movie star / a computer guy

31. What do you have in your trunk right now? I don't have one / "What you gunna do with all that junk, all that junk inside that trunk?"

32. What is your best childhood memory? Dancing out on top of a big car on chinese valentines day / Forts and stuff.

33. What are the different jobs you have had in your life? Worked at Giordanno, taught foreigners english. and worked with Jordan at MMOVP.com / Grape handler, worked for Shane Christensen for a bit, Fed Ex package handler, home loan call center, qwest DSL tech support call center, Ipod support call center, worked on flash for knowligent.com, worked at a haunted house some, off and on worked for myself selling virtual currency, worked at an english teaching center in china, currently working for mmovp.com...probably some other stuff

34. Favorite Holiday? Mid autumn festival / New year

35. What is your favorite dessert? Watermelon juice / so many ... i don't know

36. Favorite Summer getaway? Somewhere with a lot of fruit to eat / China, LOL!

37. Ever been to Africa? No / No, but I did sleep at best western last night.

38. Glasses or Contacts? I'm wearing glasses but I'd rather use contacts but my eyes cant handle them / Glasses

39. Ever been toilet papering? No / No

40. Been in a car accident? No, but a motorcycle ran into my bike once / Not really..if so I don't really remember

41. Favorite day of the week? Friday / Sunday

42. Favorite restaurant? The Steak restaurant where we get tons of free fruit / The Steak restaurant where I eat a lot of steak

43. Favorite flower? I don't know much about flower / Lilac

44. Favorite movies? Asoka and some Chinese stuff...but I like TV series more / LOTR and STAR WARS and many others... sci fi is good, and spy movies, and movies about smart people

45. Favorite Pastime? Yoga, resting, watching good TV shows, eating good food, spending time with my family / computer

46. Favorite fast food restaurant? KFC, but I don't like it much and don't eat there often / prolly subway, none here though that I know of

47. How many times did you fail your drivers test? N/A / 0

48. From whom did you get your last email? Bonnie / Bonnie

49. Sandals or tennis shoes? Sandals / Sandals for freedom and shoes for being able to run fast and stuff

50. Which store would you choose to max out your credit card? I don't know much about credit card /http://www.newegg.com/

51. If the speed limit is 60 what is the fastest you will drive? I don't know speed, but if I could drive I would drive pretty slow / 65 or so

52. Bedtime? 1-3am / Same

53. Who are you most curious about their responses to this? Shane / Bill Gates

54. Last person you went to dinner with? Jordan / Brianna

55. What are you listening to right now? Listening to Jordan typing / Listening to Brianna telling me what to type

56. What is your favorite color? Probably green, all colors are good though / Green or blue or something, sometimes red maybe, but I think green is overall my favorite color.

57. How many tattoos do you have? 0 / 0

58. How many people are you sending this E-mail to? 1, and I'm going to ask her to please send it to anyone else "on the list"

59. What time did you finish this e-mail? / Not finished yet.

60. What animal would you be reincarnated as? Human / I would not choose to be reincarnated as an animal because the idea of reincarnation comes primarily from Buddhism, and I have studied Buddhism some and, GENERALLY SPEAKING, found that a human is only reincarnated as an animal if he was really stupid and evil during his life. It is worse than being reincarnated as a poor, sick, deformed human. So if I was reincarnated I would like to be reincarnated as a Buddha (except thats not an animal), and a human is arguably not an animal either, so I'm going to have to go with "smart, well groomed, long and happy lifed monkey."

More Than a Request

The trip is in jeopardy. Pain escalated today. As of this afternoon, Jordan started running a fever, the first in two weeks. All oral pain meds are discontinued, the morphine drip is being turned up. Blood cultures have been drawn, and more antibiotics begun. A priesthood blessing has been given. We look to heaven, awaiting relief.

Many have prayed with us. Some have combined fasting with prayer. Pleas continue.

Soaking Up Sunday

Saturday's counts were HGB, 11.3: WBC, .2 (I've been writing it incorrectly as .02); platelets 22K. This mornings: HGB, 9.8; WBC still .2; platelets 18K. Dr. Z. is giving some real thought to getting Jordan off the morphine drip and finding effective oral meds he can take instead, so that we can make the Seattle trip this week. We can't set off on an eight-hour drive if Jordan's experiencing uncontrolled pain, fevers, nosebleeds, or is in need of transfusions. It all has to come together just so to work out!

The drip is slowly being titrated downward. It's down from 8MG/H to 4MG/H. Both immediate release and sustained release morphine pills are being used. The meds are worrisome, but pain, more so. Thankfully, Jordan feels well enough to spend several hours each day on the computer. In most of his previous hospitalizations, weeks passed without his giving it a thought or a glance! The CBC's tell one story, but his computer usage tells quite another, and it's our preferred version.

The Big 21

After last night's intense gaming session, this has been a quiet and restful day, a day for Jordan to be revitalized by the 32nd transfusion of platelets, and the 21st transfusion of packed red blood cells. With platelets at 12K, and HGB at 8.1,it was unquestionably time well spent. Boo hiss, LDH is on the climb, at 4,285.

Thanks to St. Luke's for giving Jordan, Brianna, Shane, Ryan and Audra the use of one of their conference rooms for all the fun, games, and snacks.

Platelets, More Precious Than Gold

First, we have three pieces of good news to share.
1. Jordan's platelets seem slightly improved.
2. He's feeling a whole lot better.
3. We have an appointment with Dr. Hawkins in Seattle, on May 1st.

Jordan received his 31st platelet transfusion just before midnight on the 22nd.CBC's are drawn early each morning, so the new platelets were still fairly well represented a few hours later, at 33K. Today, they're down to 20K. WBC's are worrisome at .1. And hemoglobin is at 9.3. A little lower, typically 8.5 and below, and a transfusion of packed red blood cells is ordered. we'll predict transfusions of both kinds will be called for by tomorrow morning. Unless, of course, something even better happens,and the tide turns in a more favorable direction. Thank you for your prayers, we know they're making a difference. As a small reward, how about a primer on platelets, for your edification.

What are platelets?
Platelets are tiny cells that circulate in the blood and whose function is to take part in the clotting process.Inside each platelet are many granules, containing compounds that enhance the ability of platelets to stick to each other and also to the surface of a damaged blood vessel wall. The platelet count in the circulating blood is normally between 150 and 400millionper millilitre of blood. (Our lab lists it as between 150K and 400K). The average life span of a platelet in the blood is 10 days.

What do platelets do?
Platelets are essential in the formation of blood clots to prevent haemorrhage -bleeding from a ruptured blood vessel.An adequate number of normally functioning platelets is also needed to prevent leakage of red blood cells from apparently uninjured vessels. In the event of bleeding, muscles in the vessel wall contract and reduce blood flow.The platelets then stick to each other (aggregation) and hold on to the vessel wall(primary haemostasis). The coagulation factors are then activated, resulting in normally liquid blood becoming an insoluble clot or glue.

What are the risks of a low platelet count?
The main effect of a reduced platelet count is an increased risk of bleeding, but this rarely occurs until there are less than 80-100 million platelets per ml.There is not a close relationship between the number of platelets and the severity of bleeding, but there is an increasing risk of haemorrhage if platelet numbers fall or if platelet function is impaired (for example by aspirin, which reduces the 'stickiness' of the platelets). There is a particularly high risk of spontaneous bleeding once the platelet count drops below 10 million per ml. The bleeding is usually seen on the skin in the form of tiny pin-prick haemorrhages (purpura), or bruises (ecchymoses) following minor trauma.Bleeding from the nose and the gums is also quite common. More serious haemorrhage can occur at the back of the eye (retina), sometimes threatening sight.The most serious complication, which is potentially fatal, is spontaneous bleeding inside the head (intracranial) or from the lining of the gut (gastrointestinal).

For all of the above, and more, go to:
http://www.netdoctor.co.uk/diseases/facts/thrombocytopenia.htm

Back in the Big House

Jordan was re-admitted to the hospital this morning. Oh! This is so old it's desiccated, antiquated, and we pray all meds will be potentiated. Also, we continue to pray for more platelets, and less pain! WBC's, .2; HGB, 10.1; platelets, 10K. No platelet transfusion today though. Just fluids, and morphine. The titrated morphine drip began at 6 mg/h. And the Neupogen injections have been discontinued.

"In the face of uncertainty, there is nothing wrong with hope." (from Love, Medicine and Miracles, by Bernie S. Siegel, M.D.)

"...I, the Lord God, do visit my people in their afflictions." (MSH 24:14)

A Little Snack...of Words

Did someone say that seeing Jordan's hemoglobin jump up to 13.0 was a nice surprise? Well, it wasn't. We've learned that the jump was a result of dehydration, which causes the blood to become concentrated, giving an artificially high HGB reading. Today's hemoglobin, after rehydration, was at 10.5; WBC's, .3; platelets were 13K. He had his third platelet transfusion in three days, the 30th. Pour on the prayers for platelet production, please!

He is home again though, for which we're all grateful. However, the dreaded, albeit necessary, Neupogen injections were begun yesterday, and already, he's needing Oxycodone, Tylenol, and Dilaudid to help with pain management. Ativan and Marinol are doing a good job keeping the nausea mostly at bay. He'll be receiving one liter of IV fluids each day when he goes in for labs, until it's certain that the dehydration is completely resolved.

Another great letter from the mission, from Pres. Johnson, was welcomed today, as were several phone calls, e-mails, comments, and other evidences of your friendship and concern. Love and thanks to each and every one of you, for all you do.

Blue Sunday

We hope it's just for the night, but Jordan felt so unwell when Dan took him up for his daily labs, that he was re-admitted to the hospital. Hemoglobin leapt up to13.0 today, a nice surprise. WBC's still at .2, which means Neupogen injections will probably resume...and so will the bone pain, the morphine, and its side effects.The on-call doc ordered another transfusion of platelets (the 29th) because they were only up to 15K despite yesterday's additions. But he got more missionary mail from Pres. and Sister Osmond, a surefire way to put a littlemore sun back into this Sunday.

Home

Today's hemoglobin, 11.6; WBC's, .2; platelets, 9K, prompting the 28th platelet transfusion. LDH at 2,816. The counts aren't where we want them, but Jordan is, he's home!

We brought home a few surprises for the grand occasion. So far, only Shane and Bonnie have been brave enough to try the fresh green wheat grass juice. But there's more in the fridge, just waiting for the next brave sipper. What did garner some interest were the new wok and bamboo steamer we picked up while doing a little grocery shopping this afternoon. Brianna immediately set about preparing an authentic Chinese dinner for us, or as close as we could get with our Wal--Mart provisions. Jordan's absent appetite and declining weight keep us looking for tempting, nutrient- and calorie-dense foods to serve. Forget nonfat and 2%, we've gone back to whole milk for now.

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.

E-fficient

Jordan had his 26th transfusion of platelets yesterday, and his 19th transfusion of packed red blood cells today. Monday's LDH level was 4,000 (200 is normal); today it rose to 7,662. In the spirit of knowing the enemy, here's a little about lactate dehydrogenase, LDH. It's one of a group of enzymes found in the blood and other body tissues and involved in energy production in cells. An increased amount of LDH in the blood may be a sign of tissue damage and some types of cancer or other diseases. More specifically, a substance released by tumors and found in the blood. So, we're sending our prayers up, asking for it to go down.

In another twist, the doctor now says that the pain is probably due to the rhabdomyosarcoma, or whatever it is, rather than the Neupogen injections. It has lasted too long and is too intense to be attributed to typical Neupogenic bone pain. The last injection was given a week ago. Unless there is a change for the better, we won't be able to make the trip to Seattle.

Our friend, Jane, came up with a brilliant idea though. Telemedicine! This is the 21st century, docs, act like it. and get connected - by phone, video, satellite, Skype, whatever it takes. Harness the e-miracle of e-medicine for Jordan, and for e-veryone. Like, tomorrow morning, please.

Live from St. Luke's

So I was supposed to leave for FL via UT today. But I just couldn't tear myself away. Brianna and I are drinking pineapple and V8 juice in the waiting room while Jordan gets a little shuteye. He had two units of packed red blood cells yesterday, his 18th such transfusion. Brianna checked our records, and he's had 25 transfusions of platelets so far, in case anyone was wondering.

I know I said the pain was under control on Sunday, but I was wrong. Jordan isn't ambulatory at this time because pain is too great upon attempting even a few steps. Keeping the pain at an acceptable level has been a constant challenge. He is on a titrated morphine drip. It was initially set at 1 mg/h, but it's now up to 6.5 mg/h, with bolus additions as needed. The doctor says the pain should be gone in the next day or so. His WBC's are up to .6 today. If it continues to climb, maybe this bone pain will have been worthwhile.

Dr. Z. was able to talk with the specialist, Dr. Hawkins, yesterday. Both agree that we should hold off on treatment until after next week's consultation. The whole diagnosis is up for review. We asked what should be done for Jordan while we wait, and Dr. Z. said that we'll just keep the pain in check and transfuse as needed. Fevers are still a problem, so that's why we're camping out here, enjoying St. Luke's hospitality. They really have been good to us here. We owe them a lot...and we're not just talking money.

Three Nights Dogged

Why does that have a slightly familiar ring to it? This is a time we'd certainly like to forget, and never repeat. For three days and nights, incessant bone pain from the Neupogen injections dogged Jordan's every waking hour. He's tried just about everything we could think of - to sleep more than usual, keep up on the pain meds, use a heating pad, warm water soaks, massage, shifting positions, staying off his feet, distracting himself with a movie, and a phone call from a friend. Patient, quiet, kind throughout, still, nothing worked. He was readmitted to the hospital this morning, where the morphine flows freely, and the pain is at last under control.

WBC's inched up to .5; neuts are at .4. Platelets all the way up to 48K on Saturday, slipped to 35K today. We hoped he might either begin some kind of modified treatment tomorrow, or return home. A fever of 101.9 showed up this evening though, nixing any hope of coming home tomorrow. When the doc makes his early morning rounds, we should be able to get off these pins and needles and find out the results of the bone marrow biopsy, and if treatment will indeed begin, or be withheld.

It's the Drugs

Jordan isn't feeling well. It's not from the rhabdo either, it's from the drugs! Believe me, not all chemo regimens are created equal. The six cycles of PCR I had last year were a walk in the park, (a really safe park) compared to the VDC + IE that Jordan's had. Give these same drugs to anybody, no matter how strong and healthy they are, and they'll soon be feeling like he's feeling right now. Amazing, or what? Read on for a list of possible side effects, many of which are only too well known to him.

But first, we think the following blurb is meant to be reassuring. Most people do not experience all of the side effects listed. Side effects are often predictable in terms of their onset and duration. Side effects are almost always reversible and will go away after treatment is complete. There are many options to help minimize or prevent side effects. There is no relationship between the presence or severity of side effects and the effectiveness of chemotherapy.

VINCRISTINE Partial or complete hair loss, constipation, low blood counts (puting you at increased risk for infection, anemia and/or bleeding),), abdominal cramps, weight loss, nausea and vomiting, mouth sores, diarrhea, loss of appetite, taste changes, peripheral neuropathy ( decreased sensation and numbness and tingling of the hands and feet)

DOXORUBICIN Low blood counts, hand -foot syndrome (Palmar-plantar erythrodysesthesia or PPE) -skin rash, swelling, redness, pain and/or peeling of the skin on the palms of hands and soles of feet, mouth sores, nausea and vomiting, low platelet counts (risk of bleeding), weakness, hair loss, constipation, poor appetite, diarrhea, discoloration of the urine (red/orange color) for about 48 hours after treatment, darkening of nail beds, interference with the pumping action of the heart. Delayed effects: There is a slight risk of developing a blood cancer such as leukemia years after taking Doxorubicin.

CYCLOPHOSPHAMIDE Low blood counts, hair loss, nausea and vomiting, poor appetite, loss of fertility, discoloration of the skin or nails, diarrhea, mouth sores, bladder irritation and bleeding (hemorrhagic cystitis) Delayed effects:There is a slight risk of developing a blood cancer such as leukemia or myelodysplasiaafter taking cyclophosphamide.

IFOSFAMIDE Low white blood cell count, hair loss, nausea and vomiting, poor appetite, blood in the urine (the medication mesna may be given to prevent or decrease the severity of this side effect), central neurotoxicity (including sleepiness, confusion and occasionally hallucinations). Delayed effects: There is a slight risk of developing a blood cancer such as leukemia after takingifosfamide. Fertility may be affected by ifosfamide..

ETOPOSIDE Low white blood cell count (increases risk for infection), low platelet count (increases risk of bleeding), hair loss, loss of fertility, nausea and vomiting low blood pressure (if the drug is infused too fast), mouth sores (especially at high doses), diarrhea (especially at high doses), poor appetite, radiation recall, metallic taste during infusion of drug, inflammation at injection site, peripheral neuropathy (numbness in fingers and toes, can be irreversible). Delayed effects: There is a slight risk of developing a blood cancer such as leukemia years aftertaking etoposide.

Whew, we hope this list doesn't lose us any readers of our blog, because we greatly value your support! A cheerier update is forthcoming.

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.