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Steven's Rhabdoid Cancer Blog

Diary of Events - January

Previous Month December 2006

New Year’s Day 2007
We were able to bring Steven home temporary for a few hours – between his twice daily medication, he was thrilled to get in his car seat and even happier at home – smiling from ear to ear.


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
We had a bit of a glitch with insurance coverage changing from one plan to another for the new year, but the Intel team and Cigna team responded very rapidly and we successfully got that resolved in time to bring Steven home Tuesday evening.

Also, the good news on Tuesday was they did an ultrasound of his blood clot and found a hole in it, meaning the blood is now flowing through the clot, so it will naturally dissolve over time, happily we could stop giving him shots twice a day with the thinning medicine.

At home we’re administering blood pressure medicine twice a day, but that’s just orally so although he doesn’t like the taste it’s very minor. And flushing his broviac once a day just to make sure it doesn’t clot, he’s more scared about what we’re doing to him (suspecting an impending needle) than actually hurt by the process, which I think is painless.

Thursday Jan 4 2007
Last night was pretty rough, Steven cried almost all night, we’re not sure if it’s just teething or something worse, by the morning when the lights were on, and Grammy was playing with him he was happy again.

Pathology continues to proceed at a snails pace, there have been a couple of missteps along the way (lost urine samples, and failure to ship stuff to other labs last week when expected) which is delaying the results. Further compounding the delay is the issue that thus far it seems to be an exceptionally rare type of cancer with the results not conclusively pointing to much yet, only pointing to what it isn’t. We get confirmation that a biopsy sample was sent to Washington University in St. Louis Missouri, and independent confirmation that this is the best pathology lab in the country.

The Utah urine results came back today, again negative results, making the statistically most likely: neuroblastoma, less likely. The only positive test result that has been returned points to something that’s a 1 in 20 million chance for kids under 10 years old, and probably significantly less likely in infants.

Friday Jan 5 2007
He slept a little better last night. Jenn took him to UC Davis to for a checkup of blood pressure and weight, pressure was OK but he's lost some weight. She also received the final pathology report from UC Davis pathology. The results were inconclusive. The biopsy sample was over 95% necrotic and they couldn't figure out the type of cancer.

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
The codeine seemed to work, he only woke up four times last night, a great improvement. The UC Davis pathology manager called us in the morning and made their pathology report sound much more promising than we had understood from the day before. Although she would not state what it was, and made it clear that their confidence level was relatively low, they do at least have an opinion or belief as to what it is. This provides us with much greater hope that Washington University may also be able to made a determination by Tuesday, and if they match with each other perhaps we'll be able to start chemo by end of next week, this is our best case hope at this point.

Tuesday Jan 9 2007
No real news other than Washington University is pushing out to Wednesday (best case) because they are finding it hard to read the sample. They have in fact requested extra material to be sent to them twice now.

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
Bad news from Washington University, they have been unable to figure out any results. We are now pretty much back to square one. The tumor has grown over the last three weeks and his abdomen looks worse now than it did a while back. The only result that Washington came up with was a negative result for the one test that Davis had a positive result. Reducing the probability of their diagnosis, which in a way is a good thing because the one test that worked at Davis indicated one of the worst kinds of cancer with the worst prognosis, now we're back to only knowing it's one of four types of cancer.

Thursday Jan 11 2007
Every decision has a cost.
Steven is scheduled for a bone scan today, it involves filling him with radioactive isotopes so he glows under the bone scanner, although less than ideal, this is necessary to figure out how far the cancer has spread and whether it's in his bones, a really critical indicator of the stage of the cancer, which in turn tells us how much longer he has, and what his prognosis will be. 

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
We were delighted that Steven was taken in for surgery and the biopsy was taken by 1pm today, well ahead of the Tuesday schedule. Although he has grown a lot in the last three weeks, this time there was no necrotic tissue, it's just the tumor has grown significantly. A small biopsy was taken, there was no attempt to de-bulk the tumor as had been the case the first time when much of it was necrotic. Dr Marr was happy with the biopsy, and everyone has great faith that it will lead to a successful pathology report.

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


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
Steven's chemo started around midnight. His first round is a combination called VDCy. First he received something to prevent nausea from the drugs to follow, then something to prevent uric acid crystallization in his kidneys (Mesna), as his urine will be exceptionally toxic with the chemo. Then one quick chemo drug for 2 minutes (Vincristine), another immediately after that for an hour (Cyclophosphamide), and one he's still on that runs for 48 hours (Doxorubicin)

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
Steven looks even more bloated, very uncomfortable, and appeared to be crying and perhaps scared today, although the doctors don't seem to be overly worried about the extra two pounds he's put on they are watching it. These are tough times.

Wednesday Jan 17 2007
The chemo course finished Monday midnight, he's suffered a urinary tract infection caused by the catheter and is now on antibiotics. He's lost some of the bloated water retention weight, and his abdomen circumference has reduced 3cm since it's peak this time. He's losing red and white blood cell counts, this puts him at severe risk for infection but it's the normal dangerous expected side effect of the chemo, the lowest point is expected 5-7 days after the chemo, so he's on medicine to help counter act this.

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
He's still on many medicines, Levaquin for the urinary tract infection, Morphine for pain, Enalapril for blood pressure, Neupogen to boost his white blood cells, and Silver Sulfadiazine cream on his arm.

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
The home nurse came, we're not happy with the company that Cigna has contracted with, as they don't deal with pediatric help frequently. This is the second time someone has shown up without a scale that will measure his weight, and although this time she brought a blood pressure measuring pump it's not automatic and because he wiggles so much the nurse couldn't get a reliable measure. Further the nurse knew she was supposed to take blood, but didn't know what for, and thus how much blood to draw. Annoying, but we're not sweating the small stuff.

Sunday Jan 21, 2007
A great weekend with no unpleasant signs of side effects. Today we took him outside with Nikki to the park.

Monday Jan 22, 2007
It turns out there was no need for the blood draw by the home nurse; don't you just love it when your kid receives medical procedures for no reason. Another blood draw was done by UC Davis who quickly turned around the blood count results.

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
When knowledge is worse than fear...

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
Winning the lottery...

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
New terrible lows...

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
It turns out that Dr Dome isn't available for two weeks, so we've cancelled the flights we had booked to go to Washington DC. Steven had a great day today not requiring any morphine.

Saturday Jan 27, 2007
Christmas returns...

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.


Sunday Jan 28, 2007
Last night was tough, Steven seems to be in lots of pain again, we've been giving him regular doses of morphine since Saturday evening. Jenn's parents arrived today to help out for a while. We have a meeting with Dr Ducore Monday and expect him to have a solid plan for the second round of chemo after hopefully being in contact with Dr Dome. 

Monday Jan 29, 2007
We met with Dr Lau, the nephrologist (Kidney specialist) he was pleased with Steven's blood pressure and told us to reduce the Enalapril medicine to once a day. Next was the meeting with Dr Ducore, although he hadn't been able to get in touch with Dr Dome, the responses he had received from his oncology partners at other hospitals recommended we follow Dr Dome's suggested protocol - the one that has been published in some recent research papers. Steven's blood was sampled again to measure his counts.

Tuesday Jan 30, 2007
He's certainly a fighter, his counts have returned a little faster than expected, so we're going to accelerate the next chemo round by a few days and perhaps start the second round on Friday.

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