Today I emailed the doctor at John's Hopkins to let him know Matt's chemo treatment plan and also to see if they had received the slides from pathology. In less than 5 minutes I received this reply:
"I did receive the slides and pathology is reviewing the material now. I plan on presenting Matthew's case on Tuesday morning and then I'll be in touch. I forgot to ask, who is the treating oncologist?"
I am so THRILLED that they will be reviewing his case in just TWO days! It makes me want to move to Baltimore so these doctors can handle Matt's care. I thought the question about Matt's treating oncologist was a little tricky since I've never actually met her... I mean, can any doctors reading this tell me if this is normal? It seems so bizarre to me that the person who is supposed to save my sons life has never taken the time to examine him, or look me in the eye so I can decide to trust her. Maybe I'm overreacting, but it really ticks me off!
So, everyone can anxiously wait with me to see what these different doctors say!
Have a happy weekend everyone!
Love,
-Alli
P.S. Tonight we had a nice 'breakthrough' moment! Matt and I were talking in the car. He is so tired right now and he was all curled up in a blanket, resting. I asked him if his stomach felt okay (Carb is supposed to make you very ill). He said his stomach was a little bit sick, but he didn't need any medicine. I started to explain that he might need some extra medication for his sick stomach when he interrupted with, "I know, Mom. The chemotherapy helps the tumor but makes me sick in other ways." I almost cried at this level of understanding from him! It is so rare that he remembers what is going on (i.e. that he even WENT to chemotherapy this week), that I was blown away by this comment! I think everyone's prayers are helping. THANK YOU!!!
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8 comments:
It's amazing what these kids understand.
I have to admit I do find it a bit weird that you've never met the treating oncologist. We met Kelsey's oncologist right before she was released from after her tumor resection. She went over the possible treatments and let us make the decision. But we did talk with her and meet her face to face. Oh yeah and we met with her once a week while Kelsey was undergoing radiation therapy and chemo. And even now that she's on chemo only we see her before she starts each round. Lastly, a lot of the families that I've met have seen the oncologist face to face before each chemo infusion.
I'm so glad that someone who has BTDT also thinks it is odd. I do understand that these doctors work together. They discuss all patients as a group and make all decisions together, but each patient has an oncologist who is their main doctor and it bugs me we haven't met her. It gives me the feeling that either:
a) she has too many patients and is too busy to give my child the care he requires.
or
b) she doesn't think his tumors are 'serious' enough to justify her time. This idea bugs me even more. Like, the tumor has to spread even further and show resistance to treatment before she thinks we are 'worth' her time.
Perhaps there is a rational explanation, but you can't expect me to be rational right now! :-)
I honestly believe that you should call her office and insist on a meeting. You are your son's advocate!! It is your JOB to feel comfortable and safe in what is going on. You have every RIGHT to INSIST on WHATEVER you feel like is necessary -- for you to be comfortable and for you to feel that he is getting the absolute best of everything that he can. I have not ever been in your exact position, but I have been in a situation that someone else was dependent on me for his care and well being-and it was scary, and I usually felt quite inferior- and that would make me doubt myself. It is absolutely imparative that you feel completely safe and comfortable with all decisions and all people related to his care, which includes meeting and feeling good about the person in charge of his care. I agree that it is extremely odd that you have not met her- -- Sorry, I seem to have gotten a little carried away with my opinion- I want you to know that I think that you are absolutely awesome! I can't imagine being in your position-and you are doing such a wonderful job! If what you are doing has anything to do with it, Matthew will be fine- you are all in our thoughts and prayers constantly-we love you all
Cristy
I don't know if he can help at all, but Mark Ott is an oncologist and chairman of the Department of Surgery at LDS Hospital -- and he is a former Belmontian. (I personally prefer "Belmontizoid".) He was bishop of the Belmont 2nd ward for quite a while. If you feel like you need a friend on the inside, you could try contacting him.
I'll agree with everyone else and say I think it does sound odd that you haven't met the main oncologist. I think a lot of time doctors forget that even though they've dealt with these life-changing diseases for years, their patients are just starting to know the disease and need cared for on more than just a physical level.
I'd call the office and give the doctor the benefit of the doubt, saying something like, "I'm sure it was just a miscommunication or oversight, but we've yet to meet with Dr. X. We have some questions for her, and would like to schedule a time for her to get to know Matt and his case."
I'm sending off a package today for you...so watch your mail!
Allison,
Sam Smith here- I haven't had a chance to read everything here, but I noticed you were upset about not meeting the primary oncologist. I believe you have a right to be. Is there an appointment scheduled to meet with her face to face before treatment starts? If not, then I find it unacceptable. As far as her examining him, I believe that is important in the sense that they make physical contact and create and association, but as for actual physical findings, the CT scans are far more important and are ultimately accepted regardless of the physical exam. In short, you have a right to be upset, and I agree that you should insist on meeting ASAP. I also agree with you seeking a second opinion at a well known institution. Overall, I can tell you as a physician, that much of the quality of the process that will occur will be based on your involvement and your asking questions and keeping informed- I hate to say it, but occaisionally there is a Health Care Provider that really takes on this role, but most of the time it doesn't happen without the family insisting on it. Really careful and caring Doctors are scarce, in my opinion...I know a few....and I work everyday with many who are not (I'll skip most of my philosophy as to why). But even those who believe they really care (i.e, myself, perhaps) can get sucked into the a healthcare trap, which is extremely busy system and made to run and think like a machine.....and even the best of physicians can act less carefully on some days (not at their best), and caring and more competent on other days. I'm not justifying your Oncologists lack of personal involvement, but am letting you know that civil, polite but firm persistence in the health care system to make sure things go the way they should for your child is usually needed (in complex cases especially) to ensure the highest quality, careful, and creative methods are applied in the care of you or your child. It's sad that it's that way....but after years of doing this I have seen it everywhere in heathcare. Patient overload closes in on the best of them....emotional callouses also develop quickly.
Let me know if I can be of help in defining any terms or processes, or in areas you need more data since I have a relationship with some very good medical oncologists, radiation oncologists, and oncologic surgeons.
God Bless,
Sam
Allison:
You should have absolutely met the oncologist....that is the person who is ostensibly running the show at this point. After the biopsy/resection the neurosurgeons sort of fade from the picture so there has to be a doctor who is coordinating matters and that person is the oncologist....I really don't understand the situation there. Who obtained the consent from you for the chemo...in our hospital, that is always done by the doctor giving the chemo.
Nice to hear about that breakthrough moment though... :)
Bob C.
I suppose some clarification is in order here. We have met with AN oncologist, just not the Neuro-oncologist who is calling the shots pertaining to Matt's care. We have been meeting with the hematologist/oncologist who is in charge of patients with Lukemia and other blood cancers. Each time we see him, though, he makes it clear that he is passing along Dr. Bruggers treatment recommendations, etc... I just think I should be hearing the recommendations from her, so I can clarify things and ask her direct questions. See, so am I just being a whiner wanting the 'best' doctor? (I suppose that a child with a brain tumor justifies seeing a Neuro-oncologist though...)
Katie, I love your idea of the way to frame it when I call. I think I'll call tomorrow since it seems I'm not crazy and this is sort of weird!
Karen, how could I forget Dr. Ott?!? Warren and I have been racking our brains trying to find an oncology contact - thanks for the reminder!
Thanks to my doctor friends, too! I knew some Belmontions (um... Belmontizoids) would pull through for me! :-)
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