I was wondering if anyone has experienced or know of someone who was able
to have their child receive chemo in their hometown hosptial with
doctors located at a different hospital?
My son is currently receiving treatment at Nemours children's clinic in
Jacksonville, FL; but I am not fond of his oncologist. My son was
misdiagnosed and I feel that his doctor and I are just not on the same
page. We recently went to St. Louis, MO and while there met with a
neurosurgeon and a nuero-oncologist. While there they wanted to do a
few special MR scans (perfusion study and DTI). We did get good news
which was great!! The problem I now face is whether to relocated to St.
Louis and work with the docs there or stay here in Jacksonville. The
doctors in St. Louis are willing to work with us and the docs here so
that we can remain in our home surrounded by friends and family.
However, the docs here in Jacksonville are not willing to work with us
and have the docs in St. Louis as consulting docs.
I am very frustrated and want to keep life as normal as possible for my
son. I don't understand why the docs here are so unwilling to work with
us in this regard. We have a scheduled conference with the docs Monday
afternoon and I am trying to do as much research and find instances of
where children were given treatment in their hometown and had docs (from
brain tumor programs) who consulted with the hometown docs.
If anyone has any advice or suggestions I would greatly appreciate it :-)
I have to tell you, I have some experience through volunteering on a cancer floor not to mention going through this now for the second time with a child in our family, and I have never heard of doctors being so unreasonable about working with other oncologists. Most pediatric oncologists are part of the COG (Children's Oncology Group) and a standard practice is to share results and consult with other doctors across the country, offering the parents treatment options. Kendall, the child in my life, has recently relapsed with JMML. When the first new tumor was found, our doctors here in New Orleans suggested a clinical trial at St. Jude in Memphis that might help him. Now that more tumors are being found, they are trying to stave off the leukemia entering his blood stream so that he can take part in a trial at UCSF in San Francisco. He would go to California for testing and then return here to New Orleans with a supply of the drug to be administered by the doctors here, all this just so that the family would not have to relocate. I'm so sorry that you find yourself in this position where it seems as if what's best for your son is being placed second to your Jacksonville doctors' own opinions. I can give you these examples, but as for what to do? Maybe you could contact St. Jude with your problem, or research the COG to find examples of treatments to ask about during your conference on Monday. Maybe you could contact the doctors in St. Louis and ask them to contact your doctors in Jacksonville so they could personally discuss findings and treatments and open up a path of communication between them as professionals. Different hospitals work differently, but should also work together to find the best path to follow. Most importantly, the final decision is yours! You're the parent. Don't let yourself be bullied against your own instincts into a treatment plan that you don't feel right about. Doctors are professional and second opinions about something so huge should be encouraged and not taken personally.This is the most difficult thing a parent will ever have to face. Not getting along with your medical team will only make a nightmare situation even worse. I don't know your personal situation or how difficult it would be to relocate, but I wish you the best. I hope this was helpful in some way.
Thank you for your response Benji. I am so very sorry to hear of your son's relapse. I will keep him your family in my prayers!
The problem is not necessarily the treatment plan. Both hospitals recommend the same treatment plan. The problem I face is the experience. The hospital here in Jacksonville does not have a brain tumor program and only sees a handful of new cases a year. Whereas the hospital in St. Louis does have a brain tumor program with neuro-oncologists who do nothing but brain tumors and see approx 100 new cases a year. My son was initially diagnosed with a JPA here in Jacksonville and after second opinions at a few large institutions (St. Louis, CHOP, and Boston) we found out that it was not a JPA but a fibrillary astrocytoma. The hospital here will not admit that they were wrong (I do not want an apology) I just want to know that we are on the same page in regards to what we are dealing with. While the treatment protocol is the same, a fibrillary astrocytoma is significantly different than a JPA. They are both low grade tumors but act very differently. The infiltrating nature of my son's tumor alone makes a scary situation that much scarier.
While I have not ruled out relocating to St. Louis, I would prefer to keep my son here in his home, around his friends, etc. He is already having a difficult time with this whole situation and to remove him from what he knows would make it that much worse. I just don't understand why the docs here are being so arrogant and unwilling to do what's best for my son. All I am asking is that the docs who have the expertise and knowledge to be involved.
It's very frustrating and as you said makes a horrible situation that much worse!!
Again, I thank you for your response and I wish you and your family the best and I will keep you in my prayers!!
You mean that the doctors in Jacksonville actually want to treat him for a JPA, even though experts with more experience have diagnosed it as a fibrillary astrocytoma? Even if the treatment is the same, the arrogance is unimaginable. If my anger and frustration for you is this bad, how must you be feeling? I'm not sure what advice to give you now. How do you reason with someone who is unreasonable? The only thing I can think is that you stay in communication with the doctors in St. Louis, even if your local doctors won't. Share every detail of your son's treatment with them. Although I'm not sure that would even be realistic, as it would amount to free medical help.
One thing I can tell you is that your doctors don't have to like you, just treat your son to the best of their ability. Technically, they work for you. It can be hard to be so confrontational, but make them give you the answers that you need. They're doctors, not gods. They're fallible, as you know. Kendall's parents, (thank you for your prayers; he's not my son, but I've known him since the day he was born, helped to raise him, and spent about half the nights with him in the hospital during his first battle), used to get upset with me when I argued with his doctors. I'll admit that sometimes the arguments got heated, but we were his primary caregivers. We needed to know everything that was happening and why. The parents often thought I went too far, but the nurses applauded me. I know you don't have time for this rambling. The point is to not be afraid to piss off your doctors in order to get to a place where you feel confident that your child is being cared for as he should be. Keep in mind the pressure that they're under; they care for many children whose lives are in their hands, but you're there for just one. No one will care more than you, and so no one will be as thorough as you. I want to help you so much, but I'm not sure that I am. What I can do is to keep your family in my thoughts, and hope for you as hard as I can. I will, every day.