Rachel

So, a couple of days ago, I read on Rachel's site that her parents have received the dreaded news: The doctors gave them "the talk" and have told her parents to consider stopping treatment.
Back when Rachel was first diagnosed, her mum Jodi, swore that she would not give up. She would run down every avenue, follow up every possible treatment, do anything possible, to get Rachel her cure. And she has. Jodi has written about countless hours researching E.S. (the type of cancer Rachel has), numerous phone calls/email/talks to try to find a way to rid Rachel's little body of this cancer. They've tried different hopsitals and clinics, trying to find their little girl a way out of this crappy cancer world.
However, Rachel's doctor feels that her body cannot be helped any longer. The chemo is doing more damage than good, and is making poor Rachel feel terrible about 90% of the time. Side effects from chemo are causing hospital stays, which are lasting longer and longer each time.

From Rachel's Caringbridge site (it's been edited - to read the full version of Jodi's entry, head on over to www.caringbridge.org/mn/rachelhansen):

What a difference a day can make. Heck, what a difference 30 minutes can make. We went to clinic yesterday and I fully expected to be talking about different chemotherapies or reduced amounts or something along those lines, but I wasn't prepared for leaving the hospital with a migraine headache, an upset stomache, and the dry heaves.

I got sat down and got told "the talk" yesterday. I wasn't expecting it, I wasn't prepared for it, and I didn't like it. It's one of the days that we prayed would never come. I got told that "it's time to stop treatment and let her die". How's that for a punch in the gut? How's that for pulling the rug right from underneath you? How's that for turning on the waterworks?

Yes, Rachel's primary oncologist feels that Rachel's counts are taking too big of a hit from chemo and that she just can't recover fast enough for chemo to do her any good. And she feels that if she reduces the amount of chemo she gives her that it won't hit the cancer. "Let's face facts," she said, "over the past two years we were able to keep the cancer at bay for six months at a time but now I can't even get a second round of chemo in." She's concerned about Rachel's platelets and how we've had to be in everyday for transfusions and says, "That's no life." She also said, "I can give her more chemo and then you can spend a month in the hospital again. That's also no life." Well, maybe not to her but if we're getting rid of the cancer--even if ever so slowly--we'll do it. So, she thinks we should stop treatment, we should enjoy her while we have her, and let her die.

Her doctor said that there is no right or wrong answer. She said we could choose to go down fighting and that there's nothing wrong with that but then does Rachel enjoy life? I looked at her and said, "So, what's the difference between Rachel being in excruciating pain from the tumor pushing on organs until she dies, or giving chemo and dieing from a bacterial infection?" She said that she can't make decisions for us nor could she even say what she would do if she were in our situation with her own child. She said that all she could do was tell me what she's seen from standing on the outside. She said that those families who quietly accept that their child is going to die from the cancer go on and do things that they haven't been able to do during treatment (ie. take trips, etc.). They make memories with that child and enjoy each day, each hour that they have with them. The child is included in decisions about their death and that the entire extended family and community is able to help and knows how to help (oh, really????). When you continue to fight you don't get to make those memories and the child isn't part of the decisions. She also didn't think that we should tell Rachel about the decision at hand and that we should just make the decision and tell her about it once it was made. (Uh, we included her when she was FOUR, how do we not include her now?)

Mark's comment to all of this when we were together and I reiterated it for him was, "Blah, blah, blah." Mine was, "Oh, really?" You can hear the sarcasm, right?We're hurt, we're angry, we're disgruntled, we're confused, we feel hung out to dry.


So, what now? We don't know. We don't know what we're going to do. Her doctor said it was time to stop the research. That gets a resounding, "I don't think so" from me. It's all I have right now. I will research until I find that there's nothing else out there. Every stone will continue to be overturned until there's no more to turn over. That's the only way I could live with myself. I can't take what she says at face value and just wither away and watch my child die. I have no idea if we'll do more treatment or not. I have no idea what I'll find in my research. I don't know if anything will even work or if she'll even qualify as a candidate for many things. But we won't know unless we try. Giving up isn't in the vocabulary yet. Not yet. Next week could be different, but not today.

I know that if we do find a treatment plan to do, Rachel's doctor won't start it until her platelets have leveled out a bit more so we've got a little bit of time to work on this. We've got some time to make some big decisions. We don't know what we're going to do. We don't know which direction we're going in.


What an incredibly tough thing to have to face. It's impossible to know what you'd do in that situation. You don't want any child to have to suffer, or be in pain, but you're not ready to let them go, and to lose them forever. The expression "stuck in between a rock and a hard place" comes to mind - in the most extreme form. What do you do? The worst of all decisions. So many CaringBridge families have had to face it though, and it's so unfair. Unfair doesn't even really seem to cover it though, does it?

Let's hope whatever decision that Mark, Jodi and Rachel make fills them with peace, and comfort.