Wed, 12 May 2004

Analysis results

Hey guys - - We got a call late this afternoon from our Dr at Huntsman Cancer Institute and she said the molecular analysis for Jade came back negative so he isn't able to take the oral chemotherapy drug Gleevac. We were quite disappointed and sad. She also gave us the CT report which shows the growth doubling again from the previous scan. We are actually back to where we were a year ago with the largest tumor being 10 x 15 cm (they describe it as being like a small cantalope) with the other 6-7 tumors previously seen as larger and more new ones present. It seems like it's almost quadrupled in two months time. The scary part of having CT scans with DSRCT is that they are notoriously underdiagnosed. So what shows on the CT is usually only part of the iceberg.

Our Dr is wanting Jade to have a central line put in on Monday and start chemotherapy on Monday as well. Since he has had two lines in before there is scar tissue on both sides and she wants a surgeon to put the line in. Jade will be on a 21 day chemo regimen with one week (five days) on chemo and two weeks off. He will have cytoxin and topotecan. Jade had the cytoxin last year and it's what gave him hemorragic cystitis of the bladder so we'll do mesna IVs to help protect his bladder along with fluids.

Jade has been feeling fairly uncomfortable the past few weeks. Surgery will become an option if the Dr is able to see some shrinkage in the tumors with chemo. If it is responding to chemo then we may debulk the tumors. Otherwise, surgery isn't a good option since this cancer is so aggressive and obviously is doubling/tripling each month.

Needless to say I was fairly devastated this afternoon. I was really hoping the oral chemo would come through since Gleevac has had such positive results. I couldn't sleep last night and found a website of a woman with DSRCT too who had the quote, "Faith means trusting in advance what will only make sense in reverse." - Phillip Yancey. It's a good thing I read that at 4:30 am since I have relied on that a lot through today. I know God is aware of us and this will all make sense with hindsight. It's just baffling in the moment. Just when I think I have cried out all my tears today, my stupid body goes and makes more.

We are very appreciative of your kindness and love. We have so much support from family, friends, neighbors, co-workers and even kind strangers. We can't imagine going through this roller coaster without your concern, prayers, faith, emails and encouragment. Thank you for hope.

We'll keep you posted as we get more information about next week. Take care...............

Love......................Tanya and co.