Sunday, February 12, 2012

And Then There Were Seven...Or Four.

I'm upset because my graph is ruined. You know, the one with X's and dashes to signify Malorie's progress through radiation? Yeah, that one - ruined. OK, fine, I didn't even remember to put it at the end of the last post. But I'm upset nonetheless.

Yesterday, a nurse attendant called Rachel to discuss the upcoming end of Mal's radiation treatment. She told Rachel that one of the other nurses had heard us talking in the recovery room about how Mal's treatment ended on February 21st, and so she was calling to correct us. According to her, Mal would be done February 16th. Rachel told her she was wrong, and went to get the treatment plan that Dr. Mansur gave us on the day of Mal's simulation. On it, in black and white, it shows the 33 treatments, three of which occur after the 16th. The nurse told Rachel that the treatment plan had changed, and insisted that Mal would be done this coming Thursday. The lady said that sometimes the doctors add a few "fluff" days to the plan. Rachel told her "Bologna" or other slightly less nice words that that effect, and then told the poor nurse attendant to go get a doctor and call us back.

It's not that we are patently against Mal's treatment only consisting of 30 treatments. In fact, the fewer treatments she gets, the less chances of long term complications from the radiation - and those can be pretty nasty. But the problem is that we were sold on being aggressive by Dr. Mansur when he was developing her treatment plan. He told Rachel and me that because Mal's cancer was a grade three, he was going to take off the kids gloves and go after it; 33 treatments, the max allowed. We gave him a paper with our signature for consent to his plan; he gave us a paper with a schedule for her thirty-three appointments.

But then something changed. Dr. Mansur created Malorie's treatment schedule, and even programmed it into the radiation machines that send the waves through her head each weekday morning. Then he moved to Cleveland. Dr. Mansur accepted a post at a children's hospital in Cleveland and left St. Louis during Mal's second week in treatment. He assured us that we would be in great hands with his interim replacement, Dr. Maholski, and that his plan would be carried out despite the change in doctors.

When the nurse attendant called back, I fielded the phone call. She told me that she had confirmed Mal would be done on Thursday. I asked her who had made the decision to change Mal's treatment, and she told me it was never intended to be 33 treatments. I called her out on that, and told her that I had the paper from Dr. Mansur in my hands and planned on bringing it to her on Monday. She then tapped furiously on a keyboard I heard in the background of the call, and told me that Dr. Mansur changed it before he left, as the prescription he entered only consisted of 30 treatments. I asked her if she could print me something with Dr. Mansur's signature and a date that showed only 30, and she gave me a solid "maybe." I tried not to shoot the messenger, but I did unload on her with some pretty heavy terms like fiduciary duty, communication breakdown, and extremely upset. Seriously, Mal has a team of 8 doctors caring for her - not one of them thought it important enough to call us to let us know they decided to change her treatment plan?

Rachel and I have an appointment with Dr. Maholski on Monday, and so we will be digging into this issue more then. I have some serious questions for him. I'm not sure if any of that will change her new plan, or if I even want it to. But I am going to unload on that man in T-minus 32 hours. Until then, we will ride out the weekend with all the joy and thanksgiving we can muster. We have faith that Mal will be fine whether she gets the three additional treatments or not. She has been terrific through all of this, and we are certain she will continue to do so. But, none of that helps me with what to do with my graph. And so, I'm upset.



  1. If there is anything I've learned in the last 6 days of about 18 hours a day on research, is that YOU ARE YOUR OWN BEST ADVOCATE!!!!! In Mal's case, YOU AND RACHEL ARE HER ADVOCATES!!!!!. I was a nurse for 17 years. I took care of many ICU patients, but none of them were MY DAUGHTERS! You have EVERY RIGHT to speak personally with Dr. MANSUR asap - I don't care if he's in Cleveland - Cleveland is in the freakin' U S of A that you defended for 10 years, by golly! If he changed his mind, you have a right to know that for sure, and a satisfactory answer as to why! (I'M STEAMED!!) Just 1 experience of this week of getting nowhere with something imperative until I burst into tears and the person went way and above what she truly had to do. Almost sobbing to her supervisor, I made sure she'll be recognized locally and nationally with FedEx for going above and beyond for someone who was rapidly getting out of control. (while still remaining very polite, I must say - just desperate!) And my issue is nothing compared to yours. YOU HAVE A RIGHT TO GET ANSWERS TO YOUR QUESTIONS FROM WHOMEVER YOU NEED TO SPEAK TO! Darn right I'm shouting!!! (deep breath taken, blood pressure lowering, continually praying.)

  2. I just re-read this, and I hope you know I was shouting at anyone who was standing in your way, not at you! You and Rach are Fiercely Strong parents, I already know that. Having been a nurse, it just really peeved me when I worked with nurses and med students who thought they could call all the shots, and who didn't treat the patient, and family, with respect. Didn't see it with many of them, but some I still remember after 30 years.
    much love!

  3. hoping for genuine answers for you this morning. your ferocity has already carried you guys so far. you are your child's best advocate.

  4. Prayers for you all- I hope you got your questions answered. You definitely have a right to be concerned, angry and upset.