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!
Thursday, March 27, 2008
Tuesday, March 25, 2008
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!
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!
Saturday, March 22, 2008
A Long and Winding Week
Five days of fun with Ifosfamide, Etoposide, and Mesna are behind us, but the nausea and vomiting linger on. Jordan came home today with barf bowl in hand. He's made good use of it several times already, all antiemetics having become ineffective. After repeated attempts at eating or drinking a little something, someone asked him if everything just tasted off. "Either off, or awful," he replied. Again we wonder if this is a premature release, although we do so prefer having him home.
This week's challenges included a day or two of fever, low calcium levels (brought on by the Zometa administered to correct the elevated calcium level), and the major problem of severe pain. Clearly, adjusting the pain meds is a tricky business, but it's hard to comprehend why Tuesday and Wednesday (as well as many other times) were so pain-filled, given that on Thursday, with the first use of Dilaudid and Oxycontin he found relief. Not immediately, but by the end of the day, he was much better, able to get up and stroll about the halls for exercise and a break from the confines of his too-cozy (cramped?) room.
Heigh-ho, on a brighter note, Harold worked his magic on the laptop. It's back where it belongs, providing a welcome link to a wider world. We've also ferreted out a couple of leads on other treatment options to present to the doctor, although our data is still insufficient. He agreed to take a look at our findings if we brought him articles validating the efficacy of clinical trials. The search is on, but it occurs to us that progress updates (or whatever the proper term may be), on clinical trials may not be within our purview. Another question has niggled its way to consciousness since we spoke with him on Thursday which demands an answer, most likely at tomorrow's appointment. And it is: You're searching too, right?
This week's challenges included a day or two of fever, low calcium levels (brought on by the Zometa administered to correct the elevated calcium level), and the major problem of severe pain. Clearly, adjusting the pain meds is a tricky business, but it's hard to comprehend why Tuesday and Wednesday (as well as many other times) were so pain-filled, given that on Thursday, with the first use of Dilaudid and Oxycontin he found relief. Not immediately, but by the end of the day, he was much better, able to get up and stroll about the halls for exercise and a break from the confines of his too-cozy (cramped?) room.
Heigh-ho, on a brighter note, Harold worked his magic on the laptop. It's back where it belongs, providing a welcome link to a wider world. We've also ferreted out a couple of leads on other treatment options to present to the doctor, although our data is still insufficient. He agreed to take a look at our findings if we brought him articles validating the efficacy of clinical trials. The search is on, but it occurs to us that progress updates (or whatever the proper term may be), on clinical trials may not be within our purview. Another question has niggled its way to consciousness since we spoke with him on Thursday which demands an answer, most likely at tomorrow's appointment. And it is: You're searching too, right?
Monday, March 17, 2008
Trials and Smiles
Jordan's birthday celebration may not have been a blast, but it wasn't a dud, either. The German chocolate cupcakes, recipe compliments of Liz, were a hit, and the visits and gifts (games, movies,a handmade quilt, aww, even those wacky bug vision glasses) were warmly received. When a four hour get out of Hospital Free card was presented by the staff, Jordan lost no time in requesting a meal of Brianna's delectable barbecued chicken. The downside of the day, though, was having to hand over his nearly brand-new laptop to a friend for repair. Still, the upside is having a friend who's willing to work on it, maybe keeping it from being shipped all the way back to California. Thank you, Harold!
The fourth round of chemotherapy began today with the twin dragons of Ifosfamide and Etoposide. Already, for an unknown (to us) reason, his heart rate dropped to 47 beats per minute. The normal rate is about 70-90 bpm. Another concern is that just last Thursday, he required two units of packed red blood cells, and yesterday, only 3 days later, another 2 units had to be transfused. The results of chemo just are not meeting expectations. This morning, phone calls were made on Jordan's behalf in search of additional options and information. The NCI responded by supplying links to 2 clinical trials ongoing at the NIH, with a promise of more trial data to come. We've been told that another bone marrow biopsy and more testing will be performed after this round. If warranted, we would like to have a new strategy for treatment in place.
The fourth round of chemotherapy began today with the twin dragons of Ifosfamide and Etoposide. Already, for an unknown (to us) reason, his heart rate dropped to 47 beats per minute. The normal rate is about 70-90 bpm. Another concern is that just last Thursday, he required two units of packed red blood cells, and yesterday, only 3 days later, another 2 units had to be transfused. The results of chemo just are not meeting expectations. This morning, phone calls were made on Jordan's behalf in search of additional options and information. The NCI responded by supplying links to 2 clinical trials ongoing at the NIH, with a promise of more trial data to come. We've been told that another bone marrow biopsy and more testing will be performed after this round. If warranted, we would like to have a new strategy for treatment in place.
Saturday, March 15, 2008
Misdiagnosed?
The jury's still out on that question, but we do know that Jordan should not have been released from the hospital on Thursday, the 13th. He was absolutely miserable all night, with uncontrolled pain and nausea, and very little sleep for him or Brianna. By Friday morning, we called Doyle and Phil for a blessing, after which Doyle transported us to the ER. Blood-flecked vomit was the last straw, giving us the final push out the door. Once at the hospital, there were more blood draws, abdominal and chest x-rays, liters of saline, 8 milligrams of morphine, and then it was back up to 4th South for admission. Grrr, we're thinking, just try dislodging us while Jordan continues to suffer with the same symptoms.
No chance of that, instead, we are introduced to a new medical crisis, hypercalcemia. Hy per cal whatia? Hypercalcemia: An abnormally high concentration of blood calcium. In myeloma, and other malignancies, the breakdown of bone,which is rich in calcium, is the main cause of high blood and urine calcium. The high calcium can contribute to weakness, loss of appetite, nausea, confusion, lethargy, and other symptoms. Its normal range is between 8.7-10.4. Jordan's was at 14.3, a medical crisis. and what do we do in times of crisis? Pray. And then? Go online to access the collective wisdom of our support teams. Friday night, I sent out a plea for input from the Rhabdo=-Kids listserve.
An excerpt from the letter of a rhabdo-friend, James Atkinson of North Carolina:
Bonnie, They probably will be able to get the hypercalcemia under control fairly rapidly, which is great since nothing makes you feel sick and wrong faster than too much serum calcium. Almost all of the symptoms you mention on the blog page could be attributed to hypercalcemia: nausea, loss of peristalsis, chest pain...all of it. Calcium is vital to every neural system we have, so when it gets out of whack like that, the body just does not work right. Because of the many unpredictable things that hypercalcemia can do to you, hospitalization is necessary. I will go out on a limb and say that I think that the Neupogen issue is a red herring. It can cause bone pain, absolutely, but not the other constellation of symptoms that you describe. My money is on the calcium this time.
From several articles provided by Michelle, another rhabdo-friend, I ten to concur with James on attributing the past week's woes to hypercalcemia. Along with the pain and nausea, Jordan developed a 102,8 degree fever, and delirium. To our great relief, he began to improve with a 1 miligram per hour morphine drip (yes I know I said no more morphine, but that was then, this is now), with IV Ativan, IV hydration, and two broad spectrum antibiotics, Vancomycin and Cefatazadime. Due to his hallucinations, we now know what lies buried deep within Jordan's subconscious mind. Anyone got a guess? It makes perfect sense, knowing Jordan. Fortunately, he is now lucid, the ileus has cleared, he's been able to keep food and liquids down today, even walking about a little for exercise. For the record, Zometa is the medicine being used to treat the hypercalcemia.
Meanwhile, James has raised another question which must be answered once and for all. It will be most uncomfortable to rehash the rhabdomyosarcoma diagnosis with our doctor, a man to whom we are deeply indebted, but we feel compelled to do so for Jordan's sake. The pathologists gave a differential diagnosis of either rhabdo or an acute erythroid leukemia. Here is James's mind-spinning correspondence:
A differential diagnosis of ARMS or acute erythroid leukemia suggests to me not a lack of guts but rather (i) lack of definitive data and (ii) an unwillingness to get the additional data, perhaps because of stupid bottom-line economics. Treatment for the two diseases is markedly different. I am surprised that they had "guts enough" to proceed with one protocol over another based on what amounts to a guess. From a cost standpoint, nothing is more expensive than a botched diagnosis. The bean counters never believe that. Diagnosis of AEL (and myeloid dysplasias in general) is determined by specific standards --- percentages of certain kinds of cells in the sample, among a constellation of other things. To muddy the waters, it appears that right now there are older diagnostic standards (FAB, or"French-British-American") and newer diagnostic standards promulgated by theWorld Health Organization, and that there is some degree professional disagreement between the two schools. The same patient might end up with different diagnoses depending on which criteria the reviewing pathologistuses. If the pathologists at UNM and Stanford were using the FAB criteria, their report should include additional classification data: classification M6a orclassification M6b. These refer to specific presentations within the marrow sample they had in front of them. If they were using the WHO standards, they also should have included specific blast measurements/counts, etc., that they used in order to generate the differential. It's such an odd differential that they had to base it on something ... more than just "small round blue cells" under the microscope. The cytogenetics of ARMS vs. AEL are different, so, again, if you can get someone to run the appropriate genetic assay, you should come up with a definitive lean one direction or the other. There may be separate assays for ARMS and AEL. I will say this: as rare as ARMS is in adults, acute erythroid leukemiaprobably is only marginally less so, and especially in people who have not previously been exposed to alkylating chemotherapy or benzenes. If you'replaying the numbers, that is to say, a de novo case of AEL overall probably is less likely than a case of ARMS, which is saying quite a lot given the utter rarity of ARMS in adults.
And if that's not enough, here's one more little tangle to unravel from another rhabdo-friend, Chris:
Bonnie, just to add to your already complex situation, if your son had ifosomide it is possible that he may have fanconi syndrome, it also causes a lot of those symptoms. My daughter has acquired fanconi syndrome from ifos. It damages the kidney tubules and affects the way the body converts vit D,. this inturn disrupts all the calcium, alkaline phosphatase, potassium, phosphate, and uric acid and glucose. It's worth asking the question as it is easily managed and saves lots of heartache.
Chris mum to Sarah erms 21/2 years off treatment.
No chance of that, instead, we are introduced to a new medical crisis, hypercalcemia. Hy per cal whatia? Hypercalcemia: An abnormally high concentration of blood calcium. In myeloma, and other malignancies, the breakdown of bone,which is rich in calcium, is the main cause of high blood and urine calcium. The high calcium can contribute to weakness, loss of appetite, nausea, confusion, lethargy, and other symptoms. Its normal range is between 8.7-10.4. Jordan's was at 14.3, a medical crisis. and what do we do in times of crisis? Pray. And then? Go online to access the collective wisdom of our support teams. Friday night, I sent out a plea for input from the Rhabdo=-Kids listserve.
An excerpt from the letter of a rhabdo-friend, James Atkinson of North Carolina:
Bonnie, They probably will be able to get the hypercalcemia under control fairly rapidly, which is great since nothing makes you feel sick and wrong faster than too much serum calcium. Almost all of the symptoms you mention on the blog page could be attributed to hypercalcemia: nausea, loss of peristalsis, chest pain...all of it. Calcium is vital to every neural system we have, so when it gets out of whack like that, the body just does not work right. Because of the many unpredictable things that hypercalcemia can do to you, hospitalization is necessary. I will go out on a limb and say that I think that the Neupogen issue is a red herring. It can cause bone pain, absolutely, but not the other constellation of symptoms that you describe. My money is on the calcium this time.
From several articles provided by Michelle, another rhabdo-friend, I ten to concur with James on attributing the past week's woes to hypercalcemia. Along with the pain and nausea, Jordan developed a 102,8 degree fever, and delirium. To our great relief, he began to improve with a 1 miligram per hour morphine drip (yes I know I said no more morphine, but that was then, this is now), with IV Ativan, IV hydration, and two broad spectrum antibiotics, Vancomycin and Cefatazadime. Due to his hallucinations, we now know what lies buried deep within Jordan's subconscious mind. Anyone got a guess? It makes perfect sense, knowing Jordan. Fortunately, he is now lucid, the ileus has cleared, he's been able to keep food and liquids down today, even walking about a little for exercise. For the record, Zometa is the medicine being used to treat the hypercalcemia.
Meanwhile, James has raised another question which must be answered once and for all. It will be most uncomfortable to rehash the rhabdomyosarcoma diagnosis with our doctor, a man to whom we are deeply indebted, but we feel compelled to do so for Jordan's sake. The pathologists gave a differential diagnosis of either rhabdo or an acute erythroid leukemia. Here is James's mind-spinning correspondence:
A differential diagnosis of ARMS or acute erythroid leukemia suggests to me not a lack of guts but rather (i) lack of definitive data and (ii) an unwillingness to get the additional data, perhaps because of stupid bottom-line economics. Treatment for the two diseases is markedly different. I am surprised that they had "guts enough" to proceed with one protocol over another based on what amounts to a guess. From a cost standpoint, nothing is more expensive than a botched diagnosis. The bean counters never believe that. Diagnosis of AEL (and myeloid dysplasias in general) is determined by specific standards --- percentages of certain kinds of cells in the sample, among a constellation of other things. To muddy the waters, it appears that right now there are older diagnostic standards (FAB, or"French-British-American") and newer diagnostic standards promulgated by theWorld Health Organization, and that there is some degree professional disagreement between the two schools. The same patient might end up with different diagnoses depending on which criteria the reviewing pathologistuses. If the pathologists at UNM and Stanford were using the FAB criteria, their report should include additional classification data: classification M6a orclassification M6b. These refer to specific presentations within the marrow sample they had in front of them. If they were using the WHO standards, they also should have included specific blast measurements/counts, etc., that they used in order to generate the differential. It's such an odd differential that they had to base it on something ... more than just "small round blue cells" under the microscope. The cytogenetics of ARMS vs. AEL are different, so, again, if you can get someone to run the appropriate genetic assay, you should come up with a definitive lean one direction or the other. There may be separate assays for ARMS and AEL. I will say this: as rare as ARMS is in adults, acute erythroid leukemiaprobably is only marginally less so, and especially in people who have not previously been exposed to alkylating chemotherapy or benzenes. If you'replaying the numbers, that is to say, a de novo case of AEL overall probably is less likely than a case of ARMS, which is saying quite a lot given the utter rarity of ARMS in adults.
And if that's not enough, here's one more little tangle to unravel from another rhabdo-friend, Chris:
Bonnie, just to add to your already complex situation, if your son had ifosomide it is possible that he may have fanconi syndrome, it also causes a lot of those symptoms. My daughter has acquired fanconi syndrome from ifos. It damages the kidney tubules and affects the way the body converts vit D,. this inturn disrupts all the calcium, alkaline phosphatase, potassium, phosphate, and uric acid and glucose. It's worth asking the question as it is easily managed and saves lots of heartache.
Chris mum to Sarah erms 21/2 years off treatment.
Thursday, March 13, 2008
Too Much, and Not Enough
Too much pain. Too much nausea. Too much time spent in the clinic trying to pinpoint the problem. Too much gazing up at the ceiling of a hospital room.
Not enough food. Not enough fluids. Not enough relief. Not enough time for a reprieve before the next treatment begins.
Jordan spent the whole of Monday afternoon in the ER checking out chest pain. He spent Tuesday, from about 11 AM to 5 PM, in the clinic, looking for some help with pain management and nausea. Back again on Wednesday, he sought help for both again, with nausea and vomiting at an intolerable intensity. from 10:30 AM to 5 PM, they worked with him, sending him for an abdominal X-ray, administering morphine, enema, kytril and saline solution with potassium. Finally, he rushed home to pick up a few things, then proceeded on for admission to the hospital, where he seems to be improving.
Why all the discomfort of this week? The verdict (although it's felt more like a sentence), is that he was given "too many" Neupogen injections to stimulate white blood cell production, which led to excessive pain. Then, he was given too much morphine to control the pain, which led to a cessation of peristalsis, and/or iileus bowel obstruction; hence the nonstop nausea and emesis (barfing). Just for you, a couple of definitions follow.
Peristalsis: The wavelike movement of intestinal muscles that propels food along the digestive tract.
Ileus: Obstruction of the intestine due to it being paralyzed. The paralysis does not need to be complete to cause ileus, but the intestine must be so inactive that it prohibits the passage of food and leads to blockage of the intestine. Ileus commonly follows some types of surgery. It can result also from certain drugs, injuries, and illnesses. On listening to the abdomen with a stethoscope, no bowel sounds are heard (because the bowel is inactive). Also called paralytic ileus.
For his pain control, it's Fentanyl to the rescue. This is an opioid analgesic with a potency approximately eighty times that of morphine. Fenntanyl transdermal patches work by releasing fentanyl into body fats, which then slowly release the drug into the blood stream over 72 hours. Oh, and fewer Neupogen injections! The doctor said we'll cut back from nine to six next time.
For the ileus bowel obstruction, no more mor"fiend"! A diet limited only to clear fluids seems to be helping. Over the last few hours, he's been able to keep down some 7-Up and ginger ale.
All his counts are on the way down (HGB from 9.0 to 7.2 since yesterday), so he'll have 2 units of packed red blood cells today, and then, if all goes well, he'll be released later this afternoon. With the WBC's dropping from a high of 2.1 yesterday, down to 1.6 this morning, we hesitate to celebrate. After the first treatment back in Jan., the rising WBC had us on cloud nine when it reached 2.2, and the next morning when it dropped to .6, we were in despair, with good reason.. It meant the rhabdo was on the move again, in a big way.
What You Can Do:
Please continue praying for Jordan to be strong and well. And will you send him a birthday greeting? He turns 26 on Sunday, the 16th. Thanks a trillion.
Not enough food. Not enough fluids. Not enough relief. Not enough time for a reprieve before the next treatment begins.
Jordan spent the whole of Monday afternoon in the ER checking out chest pain. He spent Tuesday, from about 11 AM to 5 PM, in the clinic, looking for some help with pain management and nausea. Back again on Wednesday, he sought help for both again, with nausea and vomiting at an intolerable intensity. from 10:30 AM to 5 PM, they worked with him, sending him for an abdominal X-ray, administering morphine, enema, kytril and saline solution with potassium. Finally, he rushed home to pick up a few things, then proceeded on for admission to the hospital, where he seems to be improving.
Why all the discomfort of this week? The verdict (although it's felt more like a sentence), is that he was given "too many" Neupogen injections to stimulate white blood cell production, which led to excessive pain. Then, he was given too much morphine to control the pain, which led to a cessation of peristalsis, and/or iileus bowel obstruction; hence the nonstop nausea and emesis (barfing). Just for you, a couple of definitions follow.
Peristalsis: The wavelike movement of intestinal muscles that propels food along the digestive tract.
Ileus: Obstruction of the intestine due to it being paralyzed. The paralysis does not need to be complete to cause ileus, but the intestine must be so inactive that it prohibits the passage of food and leads to blockage of the intestine. Ileus commonly follows some types of surgery. It can result also from certain drugs, injuries, and illnesses. On listening to the abdomen with a stethoscope, no bowel sounds are heard (because the bowel is inactive). Also called paralytic ileus.
For his pain control, it's Fentanyl to the rescue. This is an opioid analgesic with a potency approximately eighty times that of morphine. Fenntanyl transdermal patches work by releasing fentanyl into body fats, which then slowly release the drug into the blood stream over 72 hours. Oh, and fewer Neupogen injections! The doctor said we'll cut back from nine to six next time.
For the ileus bowel obstruction, no more mor"fiend"! A diet limited only to clear fluids seems to be helping. Over the last few hours, he's been able to keep down some 7-Up and ginger ale.
All his counts are on the way down (HGB from 9.0 to 7.2 since yesterday), so he'll have 2 units of packed red blood cells today, and then, if all goes well, he'll be released later this afternoon. With the WBC's dropping from a high of 2.1 yesterday, down to 1.6 this morning, we hesitate to celebrate. After the first treatment back in Jan., the rising WBC had us on cloud nine when it reached 2.2, and the next morning when it dropped to .6, we were in despair, with good reason.. It meant the rhabdo was on the move again, in a big way.
What You Can Do:
Please continue praying for Jordan to be strong and well. And will you send him a birthday greeting? He turns 26 on Sunday, the 16th. Thanks a trillion.
Tuesday, March 11, 2008
The Trend is... There Is No Trend
From one day to the next, we don't know what to expect. Jordan has a few good days in a row, and then suddenly, he's back in the throes of nausea and pain. Last Thursday's 12-hour nosebleed and transfusions were followed by more nosebleeding late Friday evening, which precipitated a night spent in the hospital with yet another transfusion of platelets. Saturday and Sunday went well though, lulling us into believing all would be well until treatment time came around on the 18th, just after Jordan's birthday on the 16th, and ST. Patty's Day on the 17th. Good, thought we, all we'll have to think about for the next few days is planning a great birthday bash for our green-eyed ladie.
But no such luck. Jordan's second bout with bone pain was at hand. Wrist, shoulder, spine, and sternum, to be exact. One of the drugs in his chemo cocktail (Doxorubicin) carries the risk of cardiotoxicity. Oxycodone and Hydrocodone provided welcome relief when the discomfort began on Sunday, but when he began to experience increasing chest pain and shortness of breath on Monday, they were no longer effective. Our friend, Jane, usually a model driver, sped him to the ER on the recommendation of the medical oncology team. After an EKG, cardio panel, X-ray, CT scan, and maybe a few other things, it was determined that the pain was likely due to bone pain caused by the Neupogen injections, and not a cardiac event after all. Six milligrams of morphine sent the pain packing, and another four mg a little later, slammed the door in its face!
Oh, but that sneaky nemesis, nausea, slipped through the keyhole to continue the assault. Jordan and Brianna have had very few chances to go out and have a little fun together for the last three months. He's had his eye on a Vietnamese restaurant located just a short walk from the hospital, so they decided to linger for awhile, in order to enjoy an early dinner there, and wait for Dan to finish up at work and bring them home. They ordered two dishes to share, a pork and vegetable stir fry with rice, and a wonton soup, both of which met with their approval, and reminded them of their carefree days in China. Unfortunately, what made the meal most memorable wasn't the food or the ambience, it was Jordan suddenly grabbing the most accessible container, which turned out to be Brianna's bowl of soup, and throwing up in it. Over twenty-four hours later now, the nausea continues unabated. The bone pain also returned, more morphine was administered today, potassium too, and at this point, no one feels like venturing a guess as to what the night, not to mention the next few days, may hold.
Happily, he has successfully avoided all mouth sores this time. The bone pain, while more than annoying, has been less debilitating than it was after the first treatment, when it was nothing short of excruciating, and had us all running scareder than scared. We're hoping and praying for an uninterrupted string of good days, because the next treatment is just around the corner, sure to present its own raft of challenges to overcome.
But no such luck. Jordan's second bout with bone pain was at hand. Wrist, shoulder, spine, and sternum, to be exact. One of the drugs in his chemo cocktail (Doxorubicin) carries the risk of cardiotoxicity. Oxycodone and Hydrocodone provided welcome relief when the discomfort began on Sunday, but when he began to experience increasing chest pain and shortness of breath on Monday, they were no longer effective. Our friend, Jane, usually a model driver, sped him to the ER on the recommendation of the medical oncology team. After an EKG, cardio panel, X-ray, CT scan, and maybe a few other things, it was determined that the pain was likely due to bone pain caused by the Neupogen injections, and not a cardiac event after all. Six milligrams of morphine sent the pain packing, and another four mg a little later, slammed the door in its face!
Oh, but that sneaky nemesis, nausea, slipped through the keyhole to continue the assault. Jordan and Brianna have had very few chances to go out and have a little fun together for the last three months. He's had his eye on a Vietnamese restaurant located just a short walk from the hospital, so they decided to linger for awhile, in order to enjoy an early dinner there, and wait for Dan to finish up at work and bring them home. They ordered two dishes to share, a pork and vegetable stir fry with rice, and a wonton soup, both of which met with their approval, and reminded them of their carefree days in China. Unfortunately, what made the meal most memorable wasn't the food or the ambience, it was Jordan suddenly grabbing the most accessible container, which turned out to be Brianna's bowl of soup, and throwing up in it. Over twenty-four hours later now, the nausea continues unabated. The bone pain also returned, more morphine was administered today, potassium too, and at this point, no one feels like venturing a guess as to what the night, not to mention the next few days, may hold.
Happily, he has successfully avoided all mouth sores this time. The bone pain, while more than annoying, has been less debilitating than it was after the first treatment, when it was nothing short of excruciating, and had us all running scareder than scared. We're hoping and praying for an uninterrupted string of good days, because the next treatment is just around the corner, sure to present its own raft of challenges to overcome.
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