E-fficient

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

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

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

Live from St. Luke's

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

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

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

Three Nights Dogged

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

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

It's the Drugs

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

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

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

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

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

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

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

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

Dorothy Has a Point

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

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

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

Ladies and Gentlemen, We Have an Appointment

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

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

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

Waiting

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

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