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Steven's Rhabdoid Cancer BlogMarch 2007 Previous Month February 2007 Thursday March 1, 2007 Today the radiologists had finished their review of the CT scan from Friday last week, in addition to the tumor that had been removed by the surgery yesterday they have flagged an area in his left lung that is an as yet unidentified problem, feared to be a tumor. This was not something known at the time of the surgery, and in fact in an entirely different place in his body that couldn't have been reached through the entry point they used yesterday anyway. It was however consistent, and larger, than a previous CT scan taken at Davis. By end of day Thursday the plan was for invasive camera investigation, and biopsy, which was scheduled for Friday to investigate what this new problem area is. Being internal to his lung this increases the risk yet further. Pathology probably won't have results until Monday or Tuesday, and depending upon the results from pathology he may be in for another surgery next week. Friday March 2, 2007 By early afternoon he went in for surgery, and by about 4pm the surgeon discussed the results with Jenn. They had inserted a camera into his chest to see the lungs, which are quite transparent, so they were able to view the internals of the lungs by only inserting a camera into his chest, and not all the way into the lungs. Finding nothing with the camera they physically touched his lungs, which apparently are very soft, and thus a tumor would have easily been felt. Dr Guzzetta, the surgeon, and Dr Dome, the oncologist are both very happy about the news, the hypothesis of what was seen on the CT scan is that is must simply have been a little piece of collapsed lung masquerading as tumor, and having found no tumor is great news. Still it's an unfortunately high price to pay, Steven has three more 1" long incisions on his chest, and has a pipe draining his chest from fluids due to bleeding from the surgery. We were told it would take 2-3 days before they could remove it. On the much more positive side, he's already responding and looking alert, and with pain management working much better than with the epidural used in the last surgery he seems happier than last time. There's discussion of discharging him on Tuesday. Saturday March 3, 2007 Monday March 5, 2007 Thursday March 8, 2007 Friday March 9, 2007 Sunday March 11, 2007 We also talked at length about radiation therapy with Dr Z, apparently no one has survived Rhabdoid cancer without radiation therapy, although this may be a false correlation as practically everyone receives radiation therapy by default, so there are simply no statistics illustrating the survival rates of patients without radiation therapy. However, the effects of radiation are so crippling and horrendous that there are serious doubts that a radiation therapist will even consider treating Steven as ethical. After some discussion we now understand why: the belief is that he will need to have his entire abdomen and pelvis irradiated, after the pain and sickness for 6-8 months, and even apart from the increased incidents of cancer 10-20 years after irradiation, the biggest issue is that everything irradiated will cease to grow, including his bladder, bowels, intestines, and pelvis. Given the poor odds of success, and the guaranteed pain and damage radiation of this type will cause it simply doesn't seem like the right path to take. Monday March 12, 2007 This experience has been a rollercoaster, the lows from Sunday's news combined by the ecstatic highs of the possibility of a new technology and set of options Jenn discovered Monday. Saturday March 17, 2007 We outsourced some research to Dad and Lynn for radio therapy technology, and Jenn researched cancer detection machines - even calling some of the manufacturers of the hardware. Unfortunately most things haven't gone our way, a PET (or PT) scan although more sensitive doesn't appear to be an option for infants because they move too much and they can't be sedated for a PT unlike a CT scan. There's some doubts as to whether IMRT is suitable for Steven as it only works if you have a few very distinct areas of cancer and know where they are from the scans. It's specifically not for targeting large areas that may contain small clusters of a few cancer cells - which takes us back to square one with the broad area radiation that causes an intolerable amount of radiation damage. The research has depressingly taken us full circle - however we're now a lot more knowledgeable and can ask the right questions when we get to talking to a radiation therapist. Today he was sitting up unsupported on his own for the first time that I've seen him do it. He had been starting to do this three months ago, but having had his abdomen cut open three times has made it rather challenging for him, but although his weight has been effectively flat for three months now, he seems stronger and perhaps even taller. Friday March 23, 2007 Today he spent five hours at the infusion center receiving platelets but is back home again. Grandpa and Lyn arrive tonight for a couple of weeks. Monday March 26, 2007 Friday March 30, 2007 Steven - sitting up on his own, March 30, 2007 Saturday March 31, 2007 On the other end of the spectrum Dr Ducore had spoken to the radiation therapist at Davis who indicated she felt that given the size of the area needing to be irradiated the damage would be so severe as to make the treatment unethical and she did not want to irradiate him. We are now trying to get a referral to see a radiation therapy specialist at Stanford. We finished up the day with some more good news, the fourth chemo round (Doxorubicin (Fri and Sat), Vincristine (Friday only), and Cytoxin (Friday only)) was only a one night stay unlike the previous three rounds of three days each, so Jenn brought him home this evening and thus far he hasn't seemed anything like as beaten up or sick as the last couple of times. |
© Roland Wooster, 2007. All rights reserved.