Chemo Day

10/04/06 Chemo day. I am as we speak in a meeting with the hospital medical director, the chief nurse of the hospital, the chief nurse of pediatrics, Sara – the PIH pediatrician, and myself, I am in an ethical dilemma in my head – as they all sit here discussing whether or not we should do chemotherapy – I am typing. The doctor I work with who was trained at Dartmouth and is now here running pediatrics, wants to start chemo on this girl. Today. She wants to start today. She is anxious because this girl has sat here since this summer with a tumor that at this point is probably as large as her head, sticking out from the side of her head. It sticks out from her right ear and cheek and protrudes out in a way that people just don’t see in the U.S.

Of all soft tissue tumors I hear that rhabdomyosarcoma is the most common in 2-6 year olds and 11-23 years old. It commonly occurs in the head and neck as it is in this girl but can occur in other parts of the body as well. It is important to be able to stage a tumor like this – so I learn. If we were in America staging would have included a bone marrow biopsy and other tests. Here we just did a CT scan and to her doesn’t look like any metastases, but we don’t have sophisticated tools like U.S. so can’t be sure. In U.S. she would be treated with chemo, radiation and possibly surgery. This would be true even for a very advanced stage that has metastasized. Under the best of conditions, there is a fairly good chance to cure this cancer. But it really depends on how advanced the disease is and how good care is. We don’t have anyone in this room who is expert at giving chemo care. No district hospital in Rwanda has every given chemotherapy, and no where in Rwanda is radiation available. Not even the best private hospital built by the Jordanians in Kigali. And we don’t have a hospital set up to provide intensive care. One option is not to treat her cancer. We know that if we don’t treat it it will eventually kill her. It’s already growing quickly and will invade her meninges and invade her airway or advance to her brain in some way. She has already lost hearing and sees double on the side of her face where the tumor is. It creeps in and around cranial nerve five and is her sinus covernosum.
The other option is to do chemotherapy and if so, whether or not we want to do it here. A pedi oncologist in the U.S. has been advising her from the states about how to give it. And she has somewhat modified the protocol knowing we can’t modify side effects and risks. So obviously chemo has a lot of risks and very possible we could kill her. And the father/child have been talked to about it and given their understanding, the dad wants to do whatever they can to help her. We told him:

Chemo drugs are toxic.
Cure rate is 60-70%, in the United States, with the best of care, if no metastases already – and this rate may differ given our resources and staff here.
Her treatment would be 3 medicines together (Dactinomycin, Vincristin, Cycolphosphamide), each given on same day each week for 12 weeks.

Dr. Adolphe right now is saying (in French, all my communication with staff here is about 85% in French, the other 15% speak English – but this meeting is French):
Not treating is not an option…Treat her here or somewhere else are our options…

If possibility to send her somewhere else w/ expert care than that is what should be done…

If not then we are all she has…

We aren’t the U.S. and it is unrealistic to compare…Bcs. There isn’t anything here at that level…in this entire country…(he seems somewhat exasperated when saying this, as if the sibling who is not performing as well in math is constantly getting compared to the sibling that does perform well in math and the sibling says – well I’m not him! I’m different – I have other strengths – but that’s not one of them – can we stop comparing)…he continues….

So we have to look at what we have here, he says.


Modeste (Chief Nurse of the Hospital):
All examsand labs can be done here at Rwinkwavu. Every hospital in the world has had to start somewhere. Everywhere had to have the first time they did something. This is ours. This is Rwanda’s district hospitals. Even places where they never did chemo, they had a point to start. There is no other option.

King Faisal sends a lot of patients home with tumors like this because they say it is too advanced and they don’t treat.
I’ve already sent a lot of patients there to be treated that are sent away.

Blaise:
Don’t have way to test:
K+

Na+

Sara:
I think we can do it just as well here as CHK…we care about her here…we are committed to her case…that means a lot….Most important is CBC 2xweek, creatinine, LFT’s once a week.

Lucy:
It would be better to send her somewhere else with the top of the line medical options and training. But we can’t keep doing that either.

Decision: Than let’s do it.

Want to cry. Don’t want to do it. Would prefer to send her to K.F. but if they are going to do this here, if that is the group decision, then I can’t watch with my hands tied. Because I have better experience here than any nurse. And to me it is unconsciousble to watch them flub up while I say, “I told you you couldn’t succeed.” So I am going to have to help. And then I think of the work involved, teaching how to do IV’s, hygiene, teaching how to keep track of constipation, urine output, hair falling out. All the –penias: pancytopenia, neutropenia…We will have to watch her closely I reinforce.

I told them, since we are a district hospital, and the first to do this, it would be ideal that our first attempt at chemo be a success. But in this case, I have very little hope that this case is going to be a success.

So the decision is yes, let’s do it. 5 people Blaise, Modeste, Dr. Adophe, Christine, Dr. Sara, are all a yes.

So 5:1.

I have said my peace. I have said I have very little hope that this is going to be a success. I guess the hard thing is, is that I hear this 60-70% success rate, and the statistics are U.S. statistics, and I want to say, docs in the U.S. don’t see kids like this. (see photo) and so my hope is 0% that this is going to work.

I guess that’s the big problem. I don’t think this is going to help. I think it’s too advanced for treatment to help. So we are going to kill her slowly with our chemo. That’s how I feel. At the same time, if the decision is to treat, I’m not going to not help. And not helping her is not an option either. Like I said, the best choice is to send her somewhere with excellent care. Like the U.S.

Maybe I will be the one who ends up looking like the fool. For being so overly concerned. For telling Sara I am dreading this. Maybe Sara’s decision will cure her. I hope so. I swear to God I hope so. I hope I’m wrong.

Only time will tell. I will deal with this one with the following rules. Generosity of knowledge, love, protection. Discipline of taking care of her and educating the nurses.
Patience with the process. Exertion to keep at it and keep doing a good job. Meditation and prayer that the nurses here really take care of her and that she heals. Knowledge that sometimes we are put in positions we don’t want to be in, and yet we are, and remember the world is much bigger than here. Transcendental knowledge that I am not even aware of. A higher reality and even than this another reality. Of the people outside Rwanda and Africa. Where things are run completely differently. And who is to say what the right choice is, except God.

PS I gotta’ go read up on chemo now. Since I’ve never started it before. I’ve just participated in the process and with patients and the care around them. I’ve never given chemo myself.