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.

No BMB Today

Why not? Jordan's platelets are too low, back down to 10K. HGB is already down to 8.5. He will get transfusions of both again today. The bone marrow biopsy is rescheduled for tomorrow. Fever bouncing around, down to 99.?, then up to 101.? Dr. Z said he'll try to get the Seattle appointment for next week. Ugh. This week. This week!

Our Prayer

Just as we thought he would,, Jordan received two units of packed red blood cells along with the unit of platelets on Friday afternoon. Still, he didn't get that little boost he sometimes gets after a fresh supply of blood products. At first, he thought we were making a fuss about how much, or little, he was eating, but in the last day or two, he agreed that it's a valid concern. He's tried to eat whatever we've prepared, even making suggestions, but he usually takes one or two bites, and he's done. He's not hungry, his appetite is just AWOL! His mainstays have been water, Sprite, ginger ale,, Dreyer's frozen Fruit Bars,, and 3-oz orange and vanilla ice cream cups. Throughout the week, he's nibbled a bit of a pasta dish, a bite of a grilled tuna sandwich, a few grapes, some pretzels, maybe ten peanuts, and he got down a smallish slice of pizza on two occasions. When he drank not one but two strawberry smoothies yesterday, we were cautiously exuberant. Too much sugar, we wondered? This morning we tried a thin soup of chicken broth and potatoes smoothed out by a few seconds in the blender. He got all of it down! Maybe four or five ounces worth! True, it was like taking a big dose of medicine, all for the noble cause of nutrition. But then, oooooooooops, it didn't stay down. Back to ginger ale. And how about some raspberry yogurt? Yes? Good, here you go.

At this point, Shane and Brianna and I departed for church, leaving Dan and Jordan with strict instructions to get the labs done before we returned. We anticipated spending a nice, quiet afternoon together, doing some reading, a writing project, a little paperwork, mainly relaxing. When we pulled into the garage, we noted Dan's car was there, and we thought all was going according to plans. While at church, several friends had greeted us happily, concluding that Jordan was home and doing well since Brianna was with us. We tempered the conclusion a little by explaining he was home, but he wasn't feeling as well as we'd all like. When we walked in and Jordan was nowhere to be found, it was a let-down to learn that he hadn't been able to come home because he had a fever. Brianna swiftly gathered clothing, the laptop, books, a little food, and Dan took her to join Jordan for at least one night in hospital. His throat has been slightly sore for a couple of days, so maybe the blood cultures will turn up something this time. For now, he's receiving saline, antibiotics, and TPN, total parenteral nutrition. From Wikipedia: "TPN is the practice of feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas containing salts, glucose, amino acids, lipids, and added vitamins."

No one looks forward to a bone marrow biopsy, but we hope Jordan's will take place tomorrow nonetheless. We feel we're on a tight schedule, needing to do the BMB, allowing pathologists ample time to process the tissue samples, and then traveling to Seattle before the week is over. Unless Heavenly Father has another plan, a better plan, this is what we're praying for.