Catching Up Is Hard to Do

From Bonnie on 12/13/07

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. :)

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.

Armed to the teeth to fight ARMS

Jordan moved his command post to the hospital today in preparation for the third round of chemotherapy, a protocol known as VCD+IE. You don't really want to know the names of these agents, do you? Ok then, the odd numbered rounds consist of Vincristine, Cytoxan, and Doxorubicin. The evens, Ifosfamide and Etoposide. While these heavy-hitters mount a devastating counteroffensive on the ravaging rhabdoblastic hordes, Jordan sustains unavoidable collateral damage. Along with the skillful medical care he's receiving, we boldly ask for your prayers for strength, comfort and healing in his behalf. In return, we ask God to reward you openly for your silent, sacred service.