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Steven's Rhabdoid Cancer Blog

March 2007

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Thursday March 1, 2007
Steven had a rough night last night, although on half a dozen different pain killers through an IV. In a dramatic step up from morphine I believe he received fentanyl - this is the medical replacement for heroin, and 80 times stronger than morphine. 

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
Steven slept really well last night, almost 8 hours straight with no fussing. Of course that changed in the morning, as he was bouncing back fast. Very early in the morning the surgeon discussed with me that they were not just going to take a small biopsy, but planned to remove whatever it was in his lung, thus eliminating the need for another surgery the following week.

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
Although we had to sleep through the night listening to the gurgle of his chest pump Steven still slept well. By noon he had healed up so fast that the surgeons removed the chest pipe, and also removed his catheter. His only hookup now is an IV and several monitoring sensors. Aunt Ellen watched him overnight, and Sunday through his discharge date Jenn and Grammy are going to be watching over him.

Monday March 5, 2007
Steven has healed up very well from the surgeries, and was discharged today, earlier than expected. He'll be going back to meet with Dr Dome on Wednesday and then returning home on Thursday.

Thursday March 8, 2007
Jenn and Steven returned from DC today. Not wasting any time, on the return from the airport we went via UCDavis to get his blood drawn so they could get the chemo calculations ready for tomorrow. He's going to be back in the hospital all weekend getting his third round of chemo, we expect chemo to start Friday afternoon. 

Friday March 9, 2007
Steven started his third round of chemo, another round of ICE (Ifosfamide, Carboplatin, and Etoposide (a.k.a. VP-16)) They are all delivered within a 2-3 hour period, but once a day for three days, Friday night he received all three. Saturday and Sunday will be only Ifosfamide and Etoposide. For the rest of the time he's still permanently hooked up to an IV delivering a combination of drugs: Mesna to protect his kidney, something to reduce vomiting, and the standard saline solution you get for hydration through an IV

Sunday March 11, 2007
We received seriously bad news about the pathology report from the tumor removal. The fact that it had spread to his appendix and lymph nodes implies the cancer has moved to his blood stream and has spread, also that it has become resistant to the chemo. Although Dr Z didn't spell it out in the darkest of cold hard facts, we're drawing the conclusion that the underlying message is that his chances of survival have greatly diminished from the original 17% we were working with.

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
Jenn found some amazing new radiation therapy, IMRT,  at Los Angeles Children's Hospital, a collimated narrow beam radiation therapy where the beam isn't so much focused (radiation can't be focused) but is collimated (like a laser beam). By rotating the beam entrance and exit point around the body, but continually focusing on the tumor site the same level of radiation dosage can be applied to the tumor while dramatically reducing the damage to the rest of the body. We don't know that this is even an option for Steven but it's certainly promising.

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
It has been an emotional week, through Thursday Steven was visibly and measurably loosing weight. We suspect the anti vomiting medicine was making him also reluctant to eat. He's bouncing back pretty fast, and today was looking reasonably good. He's been super fussy 24 hours a day, and having a really hard time sleeping, we're trying to set and force a new sleep routine, but it's taking it's toll on us.

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
It's been a great week for Steven, he's been getting stronger, looking healthier. However, sleeping is still very difficult, he wakes up many times a night and it doesn't seem to be getting any better. His first tooth is poking out further and a second is on it's way. He started accepting solid foods this week, pureed banana.

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
Steven had a CT scan today and a visit with Dr Ducore. The blood tests drawn resulted in the good news that we could cease giving him the Neupogen shots. 

Friday March 30, 2007
Steven's fourth round of chemo started today. It was my birthday today; fortunately we were able to have lunch all together, even with Dad and Lyn too, before Steven went to the hospital in the afternoon. In the evening Dad and Lyn watched both Nikki and Steven at the hospital while Jenn and I went out for Himalayan food.

Steven - sitting up on his own, March 30, 2007

Saturday March 31, 2007
Jenn met with Dr Ducore this morning, he had good news about the CT scan taken earlier this week. Although the CT scan isn't particularly sensitive there was no visible evidence of any cancer. This only proves there's no large growth and not that he's disease free yet, but it's certainly good news.

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.

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