Steven's Rhabdoid Cancer Blog

April 2007

Previous Month March 2007

Friday April 6, 2007
Every week for the next six weeks Steven's going to be receiving weekly doses of Vincristine. Fortunately these weekly doses of Vincristine are quick, taking only a few minutes. Today was the first of the series.

Saturday April 7, 2007
Today was Grandpa and Lyn's last full day here. In the morning we took the kids to the Folsom city egg hunt. Grandpa and Lyn have helped Steven get really close to walking over the last two weeks, he stands for long periods of time, and is able to walk when held for balance. He's been fussing quite a bit but we hope this is just teething. However, he has been throwing up an average of once a day for the last week, probably due to the chemo drugs.

Wednesday April 11, 2007
For the first time ever, Steven slept through the night,  wow. 11 months old today. It's time to start planning a huge birthday, it's his first, but might also be his last.

Steven - Easter, April 8th

Friday April 13, 2007
Steven received his second weekly dose of Vincristine, fortunately only a few minutes at the infusion center, unfortunately it seems to make him fussy all weekend.

In the early evening we tried to go out cycling as a family, both kids in the bike trailer, it's like pulling a 70lbs parachute. Steven hated it, he screamed the whole way, we figured he'd settle down after a bit, but after a mile it was all we could bear, and Nikki was in tears by this point so we gave up and screamed all the way home. 

His records were sent to Lucille Packard's (Stanford's) Radiation Oncologist to review and provide an opinion as to whether radiation is an option they would offer.

Monday April 16, 2007
Steven visited Dr Ducore for his weekly checkup today. A lump has formed in his abdomen, we hope it is simply scar tissue from the multiple surgeries opening him up, as it's in that area, but there's a very real risk the cancer has returned and would now be chemo resistant. He's scheduled for an ultrasound on Friday which may tell us one way or the other, or it may be inconclusive; but at least an ultrasound doesn't irradiate him further like a CT would. 

Friday April 20, 2007
Steven was scheduled for the 5th round of chemo and an ultrasound today. He started with the ultrasound which they didn't want to claim was definitive, but was certainly indicative of bad news. A CT scan was scheduled for later in the day. The results were read almost immediately. The lump in his abdomen is indeed cancerous, a tumor about 5cm long, and as if this wasn't bad enough - as that would perhaps be surgically removable. There were also 15 cancerous nodules spread across both lungs, an almost certainly fatal condition.

We were offered three options: 1. try some other chemo drugs that haven't been successful on Rhabdoid in the past and aren't part of the protocol, but they do work with other cancer types so they might do something for Steven, 2. try to find some other hospital testing experimental drugs, 3. take him off the brutal chemo treatments entirely and just use painkillers when needed for the short time he has left, which Dr Ducore believes is likely to be less than two months.

Irrespective of the options above, there seemed little point continuing with the chemo that obviously isn't working, so we came home Friday evening without having the 5th round of chemo.

Sunday April 22, 2007
The tumor is growing fast and is now shows a visible extension to his abdomen. Due to the severity of his situation we've looking into moving his birthday party forward two weeks - to this Saturday 28th.

April 21st, 2007

Monday April 23, 2007 - Our Last Shot
Steven met with an osteopath unfortunately although Jenn was impressed with the doctor due to the progressive level of Steven's situation he had nothing to offer.

Jenn then spoke with Dr Ducore who had contacted the Children's Oncology Group (mailing list of oncology doctors), most of the responses offered no hope. However, there were a few responses that indicated two drugs might be worth a last shot attempt, Irinotican and temoxil, but only one could be tried at a time, and one on its own although likely to slow the progression of the cancer has very remote odds of being a cure.

Jenn also spoke to Dr Dome. The initial discussion was around radiation therapy, apparently Dr Dome had not been able to find anyone willing to do radiation therapy based on the scans from 4 weeks ago - this being due to the size of the area that would have needed to be irradiated and the damaged Steven would have incurred from the therapy. Now that the cancer has spread there is no doubt that radiation is no longer an option at all. Dr Dome confirmed irinotecan was probably our best hope at this point, but offered very little hope for the situation. He reassured Jenn that we had done everything we possibly could have done, and left no doubt that radiation had never been an option.

Tuesday - Thursday April 24-26, 2007
Steven received daily doses of Irinotican. It's not considered a cure, but something that might extend his life, and might make him feel more comfortable by controlling the size of the tumor growth. Unfortunately it has been causing some nasty cramping and a progressively increasing amount of vomiting. By Thursday evening we decided to pull him off the medicine as the trade off of potential increase in quantity of life versus reduced quality wasn't worth it.

Saturday April 28 - Steven's Birthday Party - Pictures
Today we had Steven's 1st Birthday Party, his actual birthday is May 11th. We had a huge amount of help from a tremendous number of friends who arranged an absolutely fabulous birthday party. It was our family's largest event ever, with 160-200 people in attendance.

The kids loved Music Mike, the piñata's, bubble machines, face painting, and the play structures. We appreciate everything that everyone did to make it such a special and very memorable day for our family. Thanks for the generous gift cards which will make a huge difference to the children at UC Davis and the Infusion center, Jenn plans to go shopping in the next few weeks.

I've set up a whole website with all the edited images from the day. I'm pretty pleased with the site, so let me tell you about it before you visit. After you follow the link below I suggest you press the slide show button at the top right corner to see all the images automatically go through a slide show. You can also press the download button at the bottom right corner to copy a larger size version of the image you're viewing so you can print them at home or take them to some local store. I've also integrated it with Shutterfly.com who will print out the images and send them to your home. I've been very pleased with Shutterfly so can happily recommend them, that's where you'll get redirected to if you press the "order" button. Have fun with the photos - and if you see any problems with the site please let me know so I can fix it for everyone. Oh, and although Shutterfly will print them as large as 20" by 30" if you're going to print larger than 8" by 12" let me know and I'll send you a higher resolution file.

Steven's 1st Birthday Party - April 28, 2007

Main Page
May 2007