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Steven's Rhabdoid Cancer BlogDiary of Events - January Previous Month
December 2006
New Year’s Day 2007 Last night we returned him to the hospital for medication, which
has now been reduced to a shot twice a day for the blood clot, once or twice a
day orally for blood pressure, and he’s now off the IV, so has been fully
unhooked from the array of cables and pipes, except the broviac which he keeps
for the duration of the chemo course. Tuesday Jan 2 2007 Thursday Jan 4 2007 Friday Jan 5 2007 Dr Z at UC Davis got in touch with Washington University who had received the sample this morning and were already looking at it. They were also having trouble due to the high necrotic nature of the sample, but were cautiously optimistic they would have a result by Tuesday. So we're waiting again. We have an appointment with Dr Ducore on Monday who may be able to piece together the various results and provide a more complete picture, but at this point it's looking like everything's dependent upon the results we hope to get Tuesday from Washington University, or next I suspect a second biopsy will be required. We also have an appointment with the plastic surgeon scheduled for Thursday to check on his arm which appears to be doing pretty well. We got some Tylenol with Codeine to help Steven sleep as he needs to keep up his strength for what is ahead, which may be working as he's asleep right now. Saturday Jan 6 2007 Tuesday Jan 9 2007 As a backup plan we have a bone scan scheduled for Thursday, this involves doping him with radioactive isotopes so they can scan his bones. Additionally, as part of the backup plan, the operating room is being scheduled for Tuesday next week to get a second biopsy if Washington comes back with no definitive result. Steven seems to enjoy being at home, sometimes he's happy and giggles while we play with him, others he cries in pain. Nikki is playing doctor and helping with some of Steven's care at home. Wednesday Jan 10 2007 Thursday Jan 11 2007 We met with Dr Ducore doctor today who was great, we really like him. We re-did the urine test, did a bone scan, a couple of X-Rays, and perhaps a CT scan too I'm not sure about that Jenn was with him at the time. Additionally Steven was admitted as urgent Thursday, the tumor has grown enough that Dr Ducore convinced the surgeon, Dr Marr that if at all possible the biopsy should be taken Friday, rather than waiting for our scheduled time of Tuesday next week. The challenge is getting operating room time. Steven spent the night at the hospital with Grammy. Friday Jan 12 2007 Dr Ducore had pathology start processing the sample Friday afternoon/evening and expects someone he has worked with for several years to be working with it over the weekend. Not all the results are expected by Monday, but at least some of them. As had been forewarned, the sample hasn't been sent out to Washington University yet, the issue is simply you can't just toss the sample in the mail and hope it gets there, there needs to be someone setup to receive the sample before anyone will send it, this wasn't possible to prepare Friday evening. It will probably have to wait until Tuesday morning before Davis can get in touch with someone at Washington and get it sent. However, Davis are working on it over the weekend so that's great. I spent the night with Steven, he seemed to be in some further increased pain so we gave him morphine which helped him sleep longer, at least an hour at a time. Saturday Jan 13 2007 Choices... Something isn't right, Steven isn't urinating. The hypothesis is that the tumor has grown enough that it's blocking the duct from his kidney to his bladder, which will quickly cause major kidney problems. By early afternoon the severity of the situation has again dramatically increased such that Dr Zwerdling said we might need to start some kind of generic chemo today just to reduce the size of the tumor or take some other surgical intervention. Grammy and I started researching the level of commonality of the drugs used for the various types of cancer he's facing, fortunately many of the same drugs are used for different types of cancer. By evening I was rushing to the hospital to meet up with Jenn and Steven, the pathology results were not in, but we were going to need to start chemo with the hope that the right drugs could be selected to reduce the size of the tumor rapidly. We discussed the severity of the side effects, ranging from what is likely - nasty sores and ulcers on his skin, mouth, intestines, and various other places, however, although extremely painful for a while they should be rectifiable and we need to expect him to be pretty significantly doped up on narcotics. It's the permanent damage that's terrifying, one of the drugs causes permanent heart damage in some patients, aging their hearts by 60 years, his obviously hasn't even had the chance to fully develop either. Fortunately this side effect isn't a sure thing but only affects some patients, and only after a certain dosage level which shouldn't be met in this first round of chemo. I used one of Nikki's favorite phrases 'what are the choices' to which the answer was basically: well we can wait for the pathology, but I don't think he'll make it that long. Not a great choice! Out of curiosity we asked Dr Z how frequently tumors grow so fast that they run out of time to get the pathology report. In the continuance of the bizarre nature of this tumor his answer was 'about once every ten years.' Sunday Jan 14 2007 This stuff is so nasty he's on a catheter for several purposes, first so they can monitor his urine for blood and several other things, and secondly his urine will be so toxic that it will cause sores on his bum if left in a diaper. In fact, we were told to wear gloves when changing his diaper as the drugs themselves were connected to causing cancer on the fingers of nurses working with chemo patients. Fortunately this nastiness only lasts during the chemo and for 24 hours afterwards. His urine levels were borderline satisfactory by this morning, so perhaps the tumor is already taking a beating. He's also gained a couple of pounds of water retention and has bloated like a beach ball again. However, now the urine levels are getting better Dr Z started talking about a diuretic called lasix which should dehydrate him. This is what was used last time he bloated up after the first surgery and worked really well over the course of a couple of days. Monday Jan 15 2007 Wednesday Jan 17 2007 A 3D CT scan was done of the tumor during the 48 hour chemo course, this is to measure the baseline size of it so it can be measured to determine the efficacy of the chemo upon it, his starting point is: 12.1 cm by 7.x cm by 6.x cm. UC Davis pathology is mostly done with their research, but alas nothing is particularly conclusive, they have some results but before finalizing their report they want to reconcile them with the results we're waiting for from Washington University, who should have received the sample this morning. It's likely they might have results by Friday and hopefully we might get the report either later Friday or Monday, although disappointingly at this point it's looking like an undifferentiated sarcoma, which means it's not well understood, there's no specific treatment course, and it's higher risk. Today Steven's staples were removed from the second biopsy incision, which fortunately was made in the same place as the first one, so he only appears to have been cut once. He's still on morphine, and now only orally, he's much more alert, eating well, had a few smiles and even a giggle today. Friday Jan 19, 2007 The bloating and puffiness is mostly gone, and his leg with the prior blood clot that hasn't entirely cleared up has gone back to an almost normal size. The belief is the lymph nodes had been compressed by the tumor and were causing problems with that leg. His tummy feels much softer and Dr Ducore seems satisfied with the results of the Chemo having reduced the size of the tumor, this having been deduced by touching his tummy rather than any official measuring at this point, which of course would subject him to unnecessary radiation just to measure him. He was sent home late today, Jenn came home with a box full of medicine, and more that I had to go get locally. All are orally administered except the Neupogen which is a shot in his leg, fortunately only once a day this time, he's not happy about it but it's better than being stuck in the hospital. A bit of a panic Friday night as he threw up at about 1am in his crib. Fortunately his temperature was fine so we cleaned him up and moved him to the swing where he slept much better. Saturday Jan 20, 2007 Sunday Jan 21, 2007 Monday Jan 22, 2007 White Blood Cells 1.8, Hemoglobin 9.5, Platelets 266K, and ANC at 50. It's the low ANC that's a concern, although that's expected due to the chemo. It should be at 500, and below 100 is dangerously low, it's the count of his white cells that fight infection, i.e. at this point he has no ability to fight infection, so we must keep him practically quarantined. Tuesday Jan 23, 2007 This evening we received the collaborative pathology report from Washington University and UC Davis. Jenn was on the phone with Dr Ducore for ages, when she returned to dinner with tears in her eyes I knew things were much worse than usual, Jenn's pretty tough. Of all the possible outcomes, just about the worst one was unleashed upon us, Steven apparently has a Rhabdoid Tumor. We had researched this along with several other tumor types, so I immediately knew what this meant, this has about the worst prognosis of almost any cancer type, below 20%. Hours after I stopped crying my eyes still burn. Now we're researching where the best possible place might be to take him, this is so rare that over the entire careers of all the doctors at UC Davis they have only a handful of cases. We need to find out if anyone else has more experience to hopefully do what we can to increase his chances of survival. Wednesday Jan 24, 2007 We had a major breakthrough Wednesday. Of the tiny handful of medical professionals that we had networked with, either as family members, friends, or friends of family we reached out to ask if they knew anyone working with Rhabdoid tumors, one happened to be our winning lucky find in a billion. Dr Jeffrey Dome was one of the few people we were asking questions to. We were amazed to find out that he's Chief of the Oncology Department at the Children's National Medical Center in Washington DC, and is chair of an international study on Rhabdoid tumors, having personally treated 7-8 patients. Any search on the Internet for Rhabdoid will return several of his published papers on this topic, and many other oncology studies. Thursday Jan 25, 2007 This morning my dad called with shocking news that my sister, Steven's aunt Julia, had been killed in a motorcycle accident earlier today on her way to work. I don't think it's really hit me yet. Julia Claire Wooster July 5, 1977 - January 25, 2007 Picture - July 2004 Words really aren't adequate for the situation. She was generous, loving, wonderful, and my little sister. The only consolation is that she was happy in her life, and died quickly doing what she loved. Ju we'll miss you.
This morning Jenn was able to get in touch with Dr. Jaclyn Biegel at the Children’s Hospital of Philadelphia, the pathologist that Dr Dome wants us to work with. She has a technique or study that is unique in the pathology field that will determine further information about the tumor. We were delighted with her availability to talk to us directly, and her incredibly insightful discussion with Jenn on the phone, however, she revealed one of the terrifying results she's looking for. There's an abnormal chromosome she's going to be looking for, it's expected within the cells of the tumor, but the question is whether it's in Steven's DNA, if so it likely means this is terminal. Jenn went to UC Davis to start the collaboration between Dr Ducore and Dr Dome, and to have the pathology slides, and biopsy sent to Dr Beigel. Steven was also seen by the plastic surgeon's who said his arm was healing up very well, and we no longer needed to paste it with Silver Sulfadiazine and dress it with a bandage every 12 hours, but could simply stop doing this and leave it uncovered. Further good news was he had his blood test today, and the counts are back up to low, but safe, levels, so he's no longer high risk for infection. Friday Jan 26, 2007 Saturday Jan 27, 2007 In all the craziness of everything over the last month a collection of presents for Steven from Christmas had been bundled up in a bag and left in his crib, after finding them Friday night we opened them up today. He loved the musical Octopus, and Nikki swiped his bath time floating dragons.
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© Roland Wooster, 2007. All rights reserved.