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.
Thursday, March 13, 2008
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.
Friday, March 7, 2008
Transfusions
It started with a trickel, just a slow, steady tricle of blood from his nose, at about nine o'clock yesterday morning. With platelets in full nosedive mode, a nosebleed is nothing to . uh, sneeze at. Since they were down to 13k on Wednesday, after three hours of drip-drip-dripping, we decided to call the clinic for guidance, even though Jordan had an appointment already scheduled for two pm. They said to come on down, so we called Hank, our chauffeur for the day, and made haste for the clinic downtown. Labs showed the platelets had fallen to 6k, the lowest to date! Hemoglobin was at 9.0 (low, although it has been lower), so they decided to fix him up with a couple of units each of platelets and packed red blood cells. Jordan and Brianna were comfortably ensconced in a private room, compliments of St. Luke's Regional Medical Center, until nearly 11 pm, when the transfusion was finished and Dan transportted them home. That pesky proboscisbleed didn't stop until about nine pm! Hmmm, even though they made it home before the midnight hour, the transfusions appear to have had a transformative effect upon Jordan. 
Before
After
March 6:
WBC 0.2
RBC 3.05
HGB 9.0
PLT 6.0
Neuts 0.00
Tuesday, March 4, 2008
Count Them One by One
It's definitely good times when Jordan's home, buuuut, when he's home, it's back and forth every single day, rain or shine, feeling bad or feeling fine, to check those temperamental blood counts. You never know who to put your money on, the WBC's, hemoglobin, the platelets, or what. It's a real horserace. One count pulls ahead, almost reaching an acceptable level, then suddenly, it loses its place and falls to the back of the pack. Another count slowly starts to make its move, steadily gaining ground, and then, oh! down he goes. Now come on, you reds, whites, neuts and platelets, you're getting Neupogen injections, plenty of transfusions, and chemo to knock out your opponents, so let's get going.
Saturday, March 1, 2008
Our Hall of Thanks
Jordan is home! Everytime he's released from the hospital and he and Brianna walk through the door, it feels like a holiday. He tolerated this cycle of VCD better than the first cycle while inpatient. At that time, violent vomiting caused small hemorrhages of his eyes, and he reacted poorly to several antinausea meds (antiemetics). No Compozine, Zofran, or Aloxi for him, ever. The latter decreased his heart rate from a norm of about 70 beats per minute for an adult male, to the mid 30's for a couple of days, and the former produced a strange sensation that he was unable to communicate until it subsided. Calling it discomfort would be an understatement; and calling it pain would be inaccurate. Dr. Z. explained it as an allergic reaction that causes the synapses to fire randomly, sending mixed signals throughout the body. Fortunately, he responds well to Ativan and Marinol, which he takes as needed, and 30 minutes or so before meals. Presently, fatigue is his main side effect, but we are on the lookout for those dreaded mouth sores, which proved so distressing from about 10 days after the first round of chemo and persisted for 2 interminable weeks. He is diligent about salt and baking soda mouth rinses, in hopes of staving them off completely this time. He began the first of 7 Neupogen injections yesterday to stimulate white blood cel production, and this should safeguard him from them as well. So first in the hall of thanks....is Jordan.
In no particular order, other recipients of our sincerest gratitude include the following:
For posting blog comments:
Julie, Amy, the Chipmans, Dave & Kathy, Lucinda, Barb, Jamie, Amy & Matthew, and Rebekah
For knitting the beautiful afghan:
Cindy, Cross's mom
For the cheery cards and posters:
Jana and the Primary children, Lucinda, and Sister Wheeler & Sister Tupa
For chauffeuring us to labs and appointments:
Karen, Lorrie, Jolene, Cindy, Erin, Verna, Gladys, Diane, Kirt, Joyce, andprobably many more to come
For prayers:
So very many faithful friends and family members
For flowers and crafts:
Don & Janet, Joan, Jean
For food:
Karen, Cindy, Kirt, Lorrie, Jana, Lois, and Joan
For big surprises:
Nauvoo's Christmas delivery, a huge stocking from an unknown Santa, for Greg and Neil's wild, wintry ride from Denver to Boise, the Lims' gift, and an unnamed gift from the Victory View ward
Family visits from far away, visits from friends close at hand, all the phone calls, e-mails, posts from CLLC Friends and Nauvoodles, mean so very much to us. Many thanks to the doctors, nurses, social workers, technicians and to the charity of St. Luke's, for a multiplicity of highly-specialized, invaluable contributions
To our Father in heaven, we are most deeply indebted.. And we will never, ever forget.
In no particular order, other recipients of our sincerest gratitude include the following:
For posting blog comments:
Julie, Amy, the Chipmans, Dave & Kathy, Lucinda, Barb, Jamie, Amy & Matthew, and Rebekah
For knitting the beautiful afghan:
Cindy, Cross's mom
For the cheery cards and posters:
Jana and the Primary children, Lucinda, and Sister Wheeler & Sister Tupa
For chauffeuring us to labs and appointments:
Karen, Lorrie, Jolene, Cindy, Erin, Verna, Gladys, Diane, Kirt, Joyce, andprobably many more to come
For prayers:
So very many faithful friends and family members
For flowers and crafts:
Don & Janet, Joan, Jean
For food:
Karen, Cindy, Kirt, Lorrie, Jana, Lois, and Joan
For big surprises:
Nauvoo's Christmas delivery, a huge stocking from an unknown Santa, for Greg and Neil's wild, wintry ride from Denver to Boise, the Lims' gift, and an unnamed gift from the Victory View ward
Family visits from far away, visits from friends close at hand, all the phone calls, e-mails, posts from CLLC Friends and Nauvoodles, mean so very much to us. Many thanks to the doctors, nurses, social workers, technicians and to the charity of St. Luke's, for a multiplicity of highly-specialized, invaluable contributions
To our Father in heaven, we are most deeply indebted.. And we will never, ever forget.
Thursday, February 28, 2008
Catching Up Is Hard to Do
From Bonnie on 12/13/07
From Bonnie on 12/17/07
I hoped the doctor was making a mistake in suspecting leukemia, and he apparently was. But that didn't turn out to be good news. The nationally known pathologist thinks this may be a metastatic rhabdomyosarcoma (RMS). Jordan will have a CT/PET scan Wednesday to investigate further, and another appt with Dr. Z. We are just now reading about RMS. It occurs mostly in children younger than 10 years of age, and has a 70% cure rate if caught early. The outcome is poor if it has become metastatic, as this appears to have done.
Because Wednesday's PET scan was negative, and rhabdomyosarcoma usually presents with a primary tumor site, Jordan's medical data was sent on to Stanford University for evaluation by a second pathologist. A very slow pathologist, it turns out.. Appointment after appointment, we heard, "Sorry, still waiting on Stanforrd." From Dec. 17th to Jan. 10th, we waited for that report. As a small diversion, the possibility of neuroblastoma was raised, sending us on another fruitless hunt. John, from the CLLC Friends site even sent us an article he found on rhabdomyosarcoma mimicking acute leukemia, which we passed along to the oncologist way back on Dec. 17th, but I can't say if it ever saw the light of day.
At long last, Stanford's report arrived, with an article referenced in the footnotes which led Dr. Z to confirm the diagnosis of rhabdomyosarcoma. Ironically, the article in question, Hematologic masquerade of rhabdomyosarcoma, is very similar to the one we had offered 3 weeks earlier.
The first two rounds of chemotherapy, while uncomfortable and difficult, have brought about marked improvement in the bone marrow's production of red and white blood cells and platelets. Transfusions are becoming necessary less frequently, and our hopes rise as the blood counts creep upward. It's true that Jordan has spent more time than he'd like in the hospital, but on two occasions, he was given a four-hour pass for a change of scenery. He requested a drive in the mountains, and Dan made it happen. I tucked a borrowed sled into the car, just in case Brianna could be coaxed into giving sledding a try. For a girl who grew up in southern
China, this would be monumental. It took only a little arm-twisting, and a lot of courage, and she was off! Better yet,, Jordan followed suit! And now, friends, we're all caught up. :)
We so hoped for a conclusive diagnosis today, but it still isn't in. According to the doc, a sample of bone marrow has now been sent on to the premier bone marrow pathologist in the nation, Kathryn Foucar at the University of New Mexico. Unfortunately, he still suspects Jordan has either ALL or AML, not the B-12 autoimmune deficiency. Jordan was discharged from the hospital on Monday, but will return if the diagnosis of either leukemia is confirmed. Until it is, I guess he will be treated with antibiotics and blood transfusions. He had his first transfusion last Friday, and will likely have another this Friday. Counts improved for about 3 days, and are heading down again. Platelets went from 38k on Monday, to 28k today. HGB went from a low of 6.6 last week pre-transfusion, to 10.something on Monday. But now they're at 8.8.
From Bonnie on 12/17/07
I hoped the doctor was making a mistake in suspecting leukemia, and he apparently was. But that didn't turn out to be good news. The nationally known pathologist thinks this may be a metastatic rhabdomyosarcoma (RMS). Jordan will have a CT/PET scan Wednesday to investigate further, and another appt with Dr. Z. We are just now reading about RMS. It occurs mostly in children younger than 10 years of age, and has a 70% cure rate if caught early. The outcome is poor if it has become metastatic, as this appears to have done.
Because Wednesday's PET scan was negative, and rhabdomyosarcoma usually presents with a primary tumor site, Jordan's medical data was sent on to Stanford University for evaluation by a second pathologist. A very slow pathologist, it turns out.. Appointment after appointment, we heard, "Sorry, still waiting on Stanforrd." From Dec. 17th to Jan. 10th, we waited for that report. As a small diversion, the possibility of neuroblastoma was raised, sending us on another fruitless hunt. John, from the CLLC Friends site even sent us an article he found on rhabdomyosarcoma mimicking acute leukemia, which we passed along to the oncologist way back on Dec. 17th, but I can't say if it ever saw the light of day.
At long last, Stanford's report arrived, with an article referenced in the footnotes which led Dr. Z to confirm the diagnosis of rhabdomyosarcoma. Ironically, the article in question, Hematologic masquerade of rhabdomyosarcoma, is very similar to the one we had offered 3 weeks earlier.
The first two rounds of chemotherapy, while uncomfortable and difficult, have brought about marked improvement in the bone marrow's production of red and white blood cells and platelets. Transfusions are becoming necessary less frequently, and our hopes rise as the blood counts creep upward. It's true that Jordan has spent more time than he'd like in the hospital, but on two occasions, he was given a four-hour pass for a change of scenery. He requested a drive in the mountains, and Dan made it happen. I tucked a borrowed sled into the car, just in case Brianna could be coaxed into giving sledding a try. For a girl who grew up in southern
China, this would be monumental. It took only a little arm-twisting, and a lot of courage, and she was off! Better yet,, Jordan followed suit! And now, friends, we're all caught up. :)Wednesday, February 27, 2008
A little history
It Was a Peaceful Sunday Night. But then Jordan called with shocking news. He had gone to the doctor with what he thought were several minor, meaningless symptoms, mostly to placate Brianna, and had had a CBC (complete blood count) test, with alarming results. A few of the pertinent findings:
WBC 1.32@@ x10^9/L
WBC - White Blood Cell (leukocytes) Ref. Range 3,900 - 10,000 (mm3)
Measures the amount of white blood cells. These immune cells form in the bone marrow to help fight infection. High levels may indicate infection. Low levels may result from treatment or disease.
NEUT# 0.45 x10^9/L
Neutrophil Count (Absolute) Ref. Range 1.8 - 7 (x1-3uL)
A low number (neutropenia) increases risk of bacterial infection.
RBC 2.29 x10^12/L
RBC - Red blood cells (erythrocytes - eh-REETH-ro-site) Ref. Range 4.20 - 5.70
Cells that deliver oxygen throughout the body and make blood look red. A low RBC can indicate anemia.
HGB 8.5 g/L
HGB - Hemoglobin (HE-muh-glow-bin) Ref. Range 13.2 - 16.9
Hemoglobin is a protein used by red blood cells to distribute oxygen to other tissues and cells in the body. Low levels indicate anemia.
HCT 22.7HCT - Hematocrit (he-MAH-to-crit) Ref. Range 38.5 - 49.0%
Percent of your blood that is occupied by red blood cells. Good indicator of anemia.
PLT 36@@ x10^9/L
Platelets Count Ref. Range 140,000 - 390,000 (mm3)
Platelets are cells produced by the bone marrow to help your blood clot in order to stop bleeding from injury. Decreased platelet count is called thrombocytopenia.
Right away, the doctors suspected aplastic anemia. Oh no, our frantic internet searches revealed that if this were the case, Jordan would need an allogenic bone marrow transplant! E-mails and phone calls flew back and forth as we strove mightily to make decisions and gain information. At last, everyone agreed Jordan should get to America just as soon as possible for treatment. A few e-mail excerpts from this period.
From Bonnie on 12/04/07
I got Jordan's CBC into the hands of my doctor today. I prayed he would take a personal interest since I'm already his patient, but I didn't think he would. I know doctors sometimes strive to maintain a professional distance to prevent being devastated by the constant sad cases they must see. He did take an interest. He is leaving town on Thursday, and he wants to make sure Jordan is cared for before he leaves. At first, he had the scheduler tell us to take him to the ER when he arrived in town, but not to let them do anything to him, draw blood or anything, or page the on-call physician, to have them page him instead. We thought that was pretty sweet. But then, he had her call again, and this time he said skip the ER, he was writing orders to have him admitted to the hospital as soon as he got into town. He asked if he'd had a BMB, and the scheduler said he was lining up tests, writing orders for them. So I think Jordan may be having a bone marrow biopsy tomorrow, and other tests, and I pray, a transfusion! I am so relieved to know that if we can get him here safely, help will be waiting for him. Greg read that high altitudes can trigger bleeds in patients with SAA, severe aplastic anemia. That's why we must continue to pray for him to make the trip in safety. Also my heart goes out to Brianna. If you spoke with her, yours would too. She is so sad to be parted from Jordan, but knows that it is best. She wants to be able to join him in two weeks or less. I fear that will not happen, but I will pray that it does. Dan is working with our local congressman on expediting her visa.
From Brianna on 12/05/07
He told me he felt good this morning. But he still looked very pale. He was very optimistic and joked a lot as usual which is good.
The doctor said someone had to watch him 24/7. Please asign people to watch him when he is home. If he falls or anything hits his head, his brain might bleed and it would be deadly. I read the website found by Jessica. Jordan has most of the signs and symptoms the website said: Fatigue, shortness of breath with exertion, rapid heart rate, pale skin, frequent or prolonged infections, unexplained or easy bruising, dizziness and headache. Last Saturday Jordan told me that he was not feeling well. His throat felt weirdly sore these few days. It was like prickling along from his throat to his heart. He saw fire dancing many times a day. He said there had been small brown spots on his chest for a few months. He didn't have an appetite. He was very picky about food and ate very little. He always wanted Mcdonal's. He wanted it again this morning, but I didn't let him have it because I thought it was unhealthy. My mom cooked some rice for him instead. I hope I was not too controlling. I hope you can make a lot of delicious and healthy food for him when he's back. He almost fainted at school last week. Many people said that he looked very pale. These two days, Jordan said he felt like he didn't have enough oxygen. He felt pain when he felt excited or yawned. It sounds really bad when I try to piece his symptoms together.
So we went to the hospital in Dongguan on Monday. We went to an oncologist. When she saw Jordan, the first thing she said was 'He is so pale. He doesn't have enough blood. He looks like a leukemia patient.' I almost cried. Then she measured Jordan's blood. It was normal. I felt relieved. And I thought that was it. But she asked me to take Jordan to have his blood tested. I wondered if she was just trying to rip us off. We did what she said anyway. We paid and went to the blood test place.
While we were waiting for the results, we went to see a skin doctor. I described the brown spots on Jordan's chest. The doctor said it was tinea versicolor. It was nothing serious, and he asked us not to worry about it. He gave us a prescription. I felt relieved again. When the CBC results were ready, the nurses and the other doctor looked very surprised and seemed quite nervous. The doctor told me his white cell count was very low and the red cell count and the platelets were low also. I asked the doctor what's wrong with that. He said it seemed Jordan had aplastic anemia. I cried, and I cried non-stop the following two days. They tested two more times to confirm his blood test result.
We took the result back to the oncologist. She said it seemed Jordan had aplastic anemia. And she said she knew Jordan didn't look like a normal person the first time she saw him. He seemed abnormally white. She told us we needed to visit a hospital in Guangzhou immediately. It was the best oncologist hospital in Guangdong province. Jordan was calm the whole time while I was freaking out. I felt bad that I just cried and cried and my crying would not help Jordan any but only worry him. But I just couldn't help it.
We told you about it and we decided to go to Guangzhou the same day. We spent a night in Guangzhou. We went to the hospital the next morning. There were a lot of people in that hospital. We waited in the line for about 2 hours. We showed the doctor Jordan's CBC results from the hospital in Dongguan. She said Jordan might have aplastic anemia and he was in danger. She asked if Jordan was exposed to any toxic chemicals and radiation. We said no. She asked if we lived in a freshly modified house. I said our apartment the school provided was pretty new. She didn't ask more about it. So I didn't know if it was caused by the apartment or what. She asked me how much Jordan's salary was and if we were able to afford the treatment. She said Jordan needed a blood test that morning and a bone marrow biopsy that afternoon. She said Jordan needed to live in the hospital the next day and have treatment. She told me to go back to Dongguan to pack Jordan's clothes and bring at least 20,000 RMB and I needed to have around 70,000 RMB. She prescribed some Chinese medicine which cost about 2,000 RMB. Before we left, the doctor asked me to watch Jordan very closely. I should not let him be alone for one second. I needed to be with him even when he was in the bathroom. If he fell, his brain might bleed and he would probably not be able to live. He should not wash his hair either. I was really not sure if Jordan should get the treatment there. Probably he should go to America immediately, but at the same time, the doctor said his situation was really bad. If he was not treated in time, he might die. We discussed for a few minutes, and we decided to tell you first. We found an internet cafe. And I realized that Jordan was for real leaving me and it could be forever.
I need to be with my baby very very soon because we were really happy together. Please take good care of yourself and of Jordan.
Jordan arrived in Boise on 12/05, and went straight to the hospital from the airport, as planned. The first of three bone marrow biopsies in one week's time were performed early the next morning, Thursday, 12/06. Dr. Z. broke the news to us the same afternoon that there were abnormal cells in the tissue sample. Immediately, I realize that this ruled out aplastic anemia. Even though I tried (and failed) to patiently wait, I began reading about ALL and AML, two forms of acute leukemia, that very night.
From Bonnie, 12/07/07
We had a long day today. Greg and I tried to make it to the hospital in time to see the doc who is covering for Dr. Z while he's out of town over the weekend. Even though we got there at 7:15, we missed him. He told Jordan that he has no vitamin B12. Cancer can cause that, pernicious anemia and/or megaloblastic anemia can cause it, and it can mimic leukemia. So they are doing tons of testing to try to find out why he has no B12, and still, whether his condition is due to an anemia or a leukemia. Still don't know. Hope it's anemia because our impression so far is that it is easier to deal with than leukemia. If leukemia, perhaps AML is most likely. Too soon to say.
Jordan got 2 units of blood today. He was trying to sleep all afternoon (it's his usual sleep time on China time) but of course, people come in and out to check his vitals, draw blood, and so on. He got two bags of saline with sodium bicarbonate to prepare him for chemo if it starts soon. He also got an injection of B12 and some folic acid to help with that deficiency. It looks to us as if the docs are being aggressive in the search for a diagnosis, running test after test, and making preparations for several possibilities at once.
The on-call doctor was mistaken. More testing. More waiting. More transfusions.
WBC 1.32@@ x10^9/L
WBC - White Blood Cell (leukocytes) Ref. Range 3,900 - 10,000 (mm3)
Measures the amount of white blood cells. These immune cells form in the bone marrow to help fight infection. High levels may indicate infection. Low levels may result from treatment or disease.
NEUT# 0.45 x10^9/L
Neutrophil Count (Absolute) Ref. Range 1.8 - 7 (x1-3uL)
A low number (neutropenia) increases risk of bacterial infection.
RBC 2.29 x10^12/L
RBC - Red blood cells (erythrocytes - eh-REETH-ro-site) Ref. Range 4.20 - 5.70
Cells that deliver oxygen throughout the body and make blood look red. A low RBC can indicate anemia.
HGB 8.5 g/L
HGB - Hemoglobin (HE-muh-glow-bin) Ref. Range 13.2 - 16.9
Hemoglobin is a protein used by red blood cells to distribute oxygen to other tissues and cells in the body. Low levels indicate anemia.
HCT 22.7HCT - Hematocrit (he-MAH-to-crit) Ref. Range 38.5 - 49.0%
Percent of your blood that is occupied by red blood cells. Good indicator of anemia.
PLT 36@@ x10^9/L
Platelets Count Ref. Range 140,000 - 390,000 (mm3)
Platelets are cells produced by the bone marrow to help your blood clot in order to stop bleeding from injury. Decreased platelet count is called thrombocytopenia.
Right away, the doctors suspected aplastic anemia. Oh no, our frantic internet searches revealed that if this were the case, Jordan would need an allogenic bone marrow transplant! E-mails and phone calls flew back and forth as we strove mightily to make decisions and gain information. At last, everyone agreed Jordan should get to America just as soon as possible for treatment. A few e-mail excerpts from this period.
From Bonnie on 12/04/07
I got Jordan's CBC into the hands of my doctor today. I prayed he would take a personal interest since I'm already his patient, but I didn't think he would. I know doctors sometimes strive to maintain a professional distance to prevent being devastated by the constant sad cases they must see. He did take an interest. He is leaving town on Thursday, and he wants to make sure Jordan is cared for before he leaves. At first, he had the scheduler tell us to take him to the ER when he arrived in town, but not to let them do anything to him, draw blood or anything, or page the on-call physician, to have them page him instead. We thought that was pretty sweet. But then, he had her call again, and this time he said skip the ER, he was writing orders to have him admitted to the hospital as soon as he got into town. He asked if he'd had a BMB, and the scheduler said he was lining up tests, writing orders for them. So I think Jordan may be having a bone marrow biopsy tomorrow, and other tests, and I pray, a transfusion! I am so relieved to know that if we can get him here safely, help will be waiting for him. Greg read that high altitudes can trigger bleeds in patients with SAA, severe aplastic anemia. That's why we must continue to pray for him to make the trip in safety. Also my heart goes out to Brianna. If you spoke with her, yours would too. She is so sad to be parted from Jordan, but knows that it is best. She wants to be able to join him in two weeks or less. I fear that will not happen, but I will pray that it does. Dan is working with our local congressman on expediting her visa.
From Brianna on 12/05/07
He told me he felt good this morning. But he still looked very pale. He was very optimistic and joked a lot as usual which is good.
The doctor said someone had to watch him 24/7. Please asign people to watch him when he is home. If he falls or anything hits his head, his brain might bleed and it would be deadly. I read the website found by Jessica. Jordan has most of the signs and symptoms the website said: Fatigue, shortness of breath with exertion, rapid heart rate, pale skin, frequent or prolonged infections, unexplained or easy bruising, dizziness and headache. Last Saturday Jordan told me that he was not feeling well. His throat felt weirdly sore these few days. It was like prickling along from his throat to his heart. He saw fire dancing many times a day. He said there had been small brown spots on his chest for a few months. He didn't have an appetite. He was very picky about food and ate very little. He always wanted Mcdonal's. He wanted it again this morning, but I didn't let him have it because I thought it was unhealthy. My mom cooked some rice for him instead. I hope I was not too controlling. I hope you can make a lot of delicious and healthy food for him when he's back. He almost fainted at school last week. Many people said that he looked very pale. These two days, Jordan said he felt like he didn't have enough oxygen. He felt pain when he felt excited or yawned. It sounds really bad when I try to piece his symptoms together.
So we went to the hospital in Dongguan on Monday. We went to an oncologist. When she saw Jordan, the first thing she said was 'He is so pale. He doesn't have enough blood. He looks like a leukemia patient.' I almost cried. Then she measured Jordan's blood. It was normal. I felt relieved. And I thought that was it. But she asked me to take Jordan to have his blood tested. I wondered if she was just trying to rip us off. We did what she said anyway. We paid and went to the blood test place.
While we were waiting for the results, we went to see a skin doctor. I described the brown spots on Jordan's chest. The doctor said it was tinea versicolor. It was nothing serious, and he asked us not to worry about it. He gave us a prescription. I felt relieved again. When the CBC results were ready, the nurses and the other doctor looked very surprised and seemed quite nervous. The doctor told me his white cell count was very low and the red cell count and the platelets were low also. I asked the doctor what's wrong with that. He said it seemed Jordan had aplastic anemia. I cried, and I cried non-stop the following two days. They tested two more times to confirm his blood test result.
We took the result back to the oncologist. She said it seemed Jordan had aplastic anemia. And she said she knew Jordan didn't look like a normal person the first time she saw him. He seemed abnormally white. She told us we needed to visit a hospital in Guangzhou immediately. It was the best oncologist hospital in Guangdong province. Jordan was calm the whole time while I was freaking out. I felt bad that I just cried and cried and my crying would not help Jordan any but only worry him. But I just couldn't help it.
We told you about it and we decided to go to Guangzhou the same day. We spent a night in Guangzhou. We went to the hospital the next morning. There were a lot of people in that hospital. We waited in the line for about 2 hours. We showed the doctor Jordan's CBC results from the hospital in Dongguan. She said Jordan might have aplastic anemia and he was in danger. She asked if Jordan was exposed to any toxic chemicals and radiation. We said no. She asked if we lived in a freshly modified house. I said our apartment the school provided was pretty new. She didn't ask more about it. So I didn't know if it was caused by the apartment or what. She asked me how much Jordan's salary was and if we were able to afford the treatment. She said Jordan needed a blood test that morning and a bone marrow biopsy that afternoon. She said Jordan needed to live in the hospital the next day and have treatment. She told me to go back to Dongguan to pack Jordan's clothes and bring at least 20,000 RMB and I needed to have around 70,000 RMB. She prescribed some Chinese medicine which cost about 2,000 RMB. Before we left, the doctor asked me to watch Jordan very closely. I should not let him be alone for one second. I needed to be with him even when he was in the bathroom. If he fell, his brain might bleed and he would probably not be able to live. He should not wash his hair either. I was really not sure if Jordan should get the treatment there. Probably he should go to America immediately, but at the same time, the doctor said his situation was really bad. If he was not treated in time, he might die. We discussed for a few minutes, and we decided to tell you first. We found an internet cafe. And I realized that Jordan was for real leaving me and it could be forever.
I need to be with my baby very very soon because we were really happy together. Please take good care of yourself and of Jordan.
Jordan arrived in Boise on 12/05, and went straight to the hospital from the airport, as planned. The first of three bone marrow biopsies in one week's time were performed early the next morning, Thursday, 12/06. Dr. Z. broke the news to us the same afternoon that there were abnormal cells in the tissue sample. Immediately, I realize that this ruled out aplastic anemia. Even though I tried (and failed) to patiently wait, I began reading about ALL and AML, two forms of acute leukemia, that very night.
From Bonnie, 12/07/07
We had a long day today. Greg and I tried to make it to the hospital in time to see the doc who is covering for Dr. Z while he's out of town over the weekend. Even though we got there at 7:15, we missed him. He told Jordan that he has no vitamin B12. Cancer can cause that, pernicious anemia and/or megaloblastic anemia can cause it, and it can mimic leukemia. So they are doing tons of testing to try to find out why he has no B12, and still, whether his condition is due to an anemia or a leukemia. Still don't know. Hope it's anemia because our impression so far is that it is easier to deal with than leukemia. If leukemia, perhaps AML is most likely. Too soon to say.
Jordan got 2 units of blood today. He was trying to sleep all afternoon (it's his usual sleep time on China time) but of course, people come in and out to check his vitals, draw blood, and so on. He got two bags of saline with sodium bicarbonate to prepare him for chemo if it starts soon. He also got an injection of B12 and some folic acid to help with that deficiency. It looks to us as if the docs are being aggressive in the search for a diagnosis, running test after test, and making preparations for several possibilities at once.
The on-call doctor was mistaken. More testing. More waiting. More transfusions.
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