Tom and I have made a difficult decision this week that seems a little crazy on the surface. We have decided to do the high-dose IV interferon in Houston. Which means that Rachael and I will basically be moving there for a month. I have many reasons for wanting to do this, even though it means we will be separated and financially it is scary but it comes down to this: We cannot make decisions that we will later look back on. This is a common refrain, especially among Melanoma Warriors because so much of the treatment has mixed results at best. We have to make decisions we know that we will not be able to regret.
We have been offered a trial for Rachael's treatment of interferon. The standard way of administering it has been four weeks of high dose through an IV, followed by 48 weeks of a subcutaneous injection done three times per week at home. The trial would mean the same high dose IV, however the "sub-q" injections would be done only once per week and the intereron would be "pegylated". I asked her oncologist, Dr. H. what this means and he said, "pegylation is a chemical process that prevents a medicine from being cleared from the body as quickly." He said that he believes the 3x per week injection is actually out of the system within a few hours but he thinks they will find that they pegylated interferon stays in the body throughout the week so that she will have at least a low dose in her at all times.
Are there any chemists out there who can explain all this to me?
This trial appeals to me for many reasons. First of all, there is mixed research about the effectiveness of continuing after the one month high dose. The results of going ahead with the additional 48 weeks do not seem to offer much additional benefit. Having said this, her oncologist, as well as the oncologists of the other parents I have spoken to who have children with melanoma all believe we would be crazy to not do it. I've actually written about my angst regarding interferon here. So the idea of a trial which Dr. H. has said it is essentially the same medication and they expect it to perform much the same way and which might just show better results and saves Rachael 96 injections over the course of a year sounds like something I want to sign up for.
I think this is a better plan for our mental health. Because I know the results are mixed I can absolutely see in three or four or ten months into this thing we will have moments of "This is stupid! Why are we even doing this?" Being in a trial that may help pave the way for better treatment will help us in those moments. That thought won't necessarily help Rachael but avoiding the 96 extra shots would get her vote.
Then there is the fact that we can always opt-out of the trial but we only have one chance to opt-in.
There is just the one big down-side to all this and that is we cannot do any of our treatment at our local children's hospital. It must all be done in Houston which means of course the temporary move there for the month and frequent trips (probably once a month with a few overnights here and there) for the next year.
This is going to be hard but I have to say, after my experience in a different - albeit wonderful - hospital, I am honestly really relieved that we won't be splitting her treatment. I know our local hospital is very good and I've heard great reports and if we had started here I probably wouldn't want to go anywhere else. I just feel better doing it all at MD Anderson. It's our hospital.
So, we're working things out and making arrangements and it looks like I will go there on the evening of November 11th. We have the opportunity to meet another little Melanoma Warrior, Chloe, who is 10 years old and was diagnosed when she was 8. I hope we can have dinner and give the girls a chance to play that evening before they return back home on the 12th. On a side note, we are very excited to be sending out Christmas cards this year designed by Chloe! Her angel was chosen this year by the Children's Art Project.
On a completely different note, while the kids were getting ready for school yesterday Marc kept running into my bathroom asking, "Can Rachael wear my belt?" "Can Rachael borrow my socks?" I'm all like, "I don't care," he runs out pumping his fists going, "Yesss!" I hear them being all giggly and cute and when it's time to leave I see that my very different children who I wasn't even sure liked each a few months ago came out all matchy-matchy.
They are really going to miss each other.