Thursday, October 22, 2009

At least it's not a six-month deployment to Iraq.

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.


  1. I don't think this is crazy at all. Once having made the decision to proceed with Interferon including the high dose and maintenance regime, this sounds a very positive and less invasive option to me. And the fact that it is a trial will mean the monitoring of Rachael will be up there with the best.
    Naturally it will be hard going through the initial month without Tom and Marc always there physically for you, but your family has proved its resiliance over the last couple of months and you know this will only make you stronger again.
    You have seen the ever growing bond between Marc and Rachael developing and it's lovely to see something positive arising from the depths of such an awful cancer.
    Thinking of you all, hugs from Down Under

  2. You are right. Make the best educated decision you can in the here and now, and go with it. Houston is a great place to be...they will take great care of you. And althought it is easier to say than do, I stopped worrying about the money part and just worried about the health part. Everything else fell into place. My attitude was...let them take my house and car and whatever, those material things don't matter to us as much as Brian and our family. I know some financial situations are harder than others, but we were living on two Missouri teacher salaries, we are young, and there wasn't much we could do about it but pray. The time will go fast and you will be back together as a family soon. And woo hoo on meeting Chloe...what a great kid and wonderful inspiration!

    Hang in there. We are praying for you all.

  3. I have no doubt that this is the best decision for your family. Not because I have any idea about chemical combinations and/or reactions. Not because I can even begin to understand emotionally what you are going through. Not because I know anything about either hospital.
    because you are an amazing mom and amazing woman. Who gives everything a lot of thought. Who researches, debates, and truly does all she can to know every card in her hand before playing one. Who loves the Lord and turns to Him in prayer.
    For all of that, I know that you have made the right choice.

    I love that the kids wanted to be "twinkies".


  4. You never cease to amaze me. You are able to keep a rational head and make well-thought out decisions under enormous amounts of pressure, and still set aside time to laugh with with your kids, when it would probably be easier to just cry. I can tell that you have passed these wonderful qualities on to Rachael and Marc. With your love, support and faith and their trust and resilience, and of course God's healing love, you will all get through this. I just hope your journey gets easier. As others have said, focus on your family - the rest will fall into place. We are continuing to pray for you and your family and have added you to the prayer list at church.

    Big hugs to you all!