Big Day is tomorrow

Tomorrow is a pretty big day. I (Rick) am not a "jinx" person, so I can be honest. I think tomorrow the doctors are going to tell us that Madelyn is NED (no evidence of disease). This means we'll be stopping treatment, removing her port, and scheduling regular checkups to monitor her status. If not, I don't know what they could say. The MRI showed nothing in the preliminary images. The MIBG was negative with the exception of a very very faint spot in the R chest where she never had disease before. The MRI showed nothing, but it wasn't clear due to some atelactasis (deflating of the lung) which probably would not have occurred had we done the MRI first and the bone marrow biopsy last like we have the other 3 times. This is the reason that I haven't really gotten too excited, because its no EVIDENCE of disease, not 100% without disease. With the knowledge that we are limited by the technology and testing parameters, something could be missed and stopping treatment can pose some risk. That's my worry. I said it. Now that it's out in the open, I am very hopeful that the worst, from a physical perspective as far as what Madelyn has endured, is behind us. We know we'll get uneasy every three months for scans. We worry about relapse. We are afraid to stop treatment. Will the chemo she has received predispose her to leukemia later? Again, a rant.

We await the news with guarded joy. We normally wouldn't admit this out loud but all signs point to a good outcome and I feel we should be allowed to embrace it, even if only for a moment.

As her father I feel its my #1 job to staunchly defend my daughter's right to live. I need to be strong for my wife. Early on, it was easier for me because we had such a learning curve and when she had questions, I generally had the answers. Now the situation is so nebulous that I have had to say recently that I just don't know when asked what criteria would make surgery an option, or what's the likelihood of so and so, what patients relapse the most, etc. Every day I question my ability to make these decisions and be strong for my family. Most of you who know me probably wouldn't think that about me. I am generally very clear that I think most of the time I am the smartest guy in the room. Well, that's OK when it comes to little stuff. It's OK when a mistake now and then is acceptable. Madelyn is the one who gets sedated, cut on, poked with needles, is at risk for infection, throws up at the sight of the activity center at the hospital. I hope one day she knows that I would much rather it be me than her, not just so she wouldn't hurt, but because I could handle it better than watching her endure it. It hurts more than trading places.

Mark this one down as a therapeutic entry for me. Writing here helps me deal with this and whether or not anyone reads it, it serves a purpose.

Thank you for your continued support and prayers. With all of the things Madelyn is learning, we haven't started to teach her to pray yet. I'll work on that this week.

Love
The Bell Family