I want to set the record straight for a minute. If the doctors act as though we are only in the hospital for neutropenia (low blood counts) then of course I am going to fight for us to go home given how long we've been in the hospital. The doctor at USACW did not show any concern for the continued blood in my child's urine. For a week he has continued to have blood in his urine and to have clots and they have said and done nothing other than give him platelets. They have not once asked for another opinion. I trusted what they were doing with that and did not argue even once about it. I pushed to go home thinking they were comfortable with what was going on in his diapers...then he passed this....
(keeping in mind we weren't going anywhere anyway)
Obviously, I am no longer comfortable with it. After receiving this picture from my mother who was with him at the time, I rushed to the hospital. I requested a meeting with the hospital administrator, charge nurse, oncologist and who ever else could be there. Finally, the mounting problems at this hospital were going to be brought to someone's attention. Little did I know what I was walking into when I was called to say that everyone was in the conference room.
We started the meeting by going over a couple of major problems we have had with the hospital that illustrated some communication problems within the hospital. The hospital administrator and the charge nurse seemed eager to learn more and try and address these issues. The oncologist however did not dare want to admit any wrong doing on her part.
Her answer as to why they did not show more concern about the blood in his urine over the past week was because I wanted us to go home. "I" didn't say anything else about it and "I" wanted to go home so she didn't realize things weren't better. If she didn't notice something, that doesn't fall back on me. She is the doctor and she has a large staff to let her know what is going on. It is their job to recognize when there is a persistent problem. I feel badly as it is that I didn't push for them to do more over the past week, but I will not take the blame for them not taking any further action than what they did.
She then proceeded to twist around everything that I would say. It went so far as to her claiming that in our phone conversation from the previous day that I said, "I demand a copy of...". And I defended myself saying that I did not "demand" anything, I "asked" for copies. She replied, "You said, "I demand". I again replied that I knew I did not say that. It was at this time that she did it. She said, "your lying".
There are no words to explain how I was feeling at this time. I was not lying I knew I had asked and not demanded something and she was accusing me of lying? I told her that she was the one lying that I did not "demand" anything. As a matter of fact, I have two co-workers that heard my end of the phone conversation the previous day and can confirm that I did not "demand" anything. This woman did not like that she was being called out and so she was trying her best to paint a picture of me as an emotional crazy mother, who apparently lies too. It felt as though I was being attacked by this woman that she was twisting my every word into something it was not and now she was not only lying about our phone conversation from the day before, but she was accusing me of lying?
I might be a lot of things from time to time, but I am not a liar. I admit when I'm wrong. I will admit if I make a mistake. I do not have too much pride nor am I too stubborn. I can be emotional and I know that I am a very involved parent, but if I have no reason to question a doctor's judgement, then I will not. There have been plenty of doctors that have made calls I wasn't always sure about, but I trusted them because they were the doctor and I had never been given any reason to doubt their judgement. The other parties at this meeting were truly interested in helping, however this doctor was not. She tried to accuse me of everything left and right tried to argue most of the points I would make. Tried to act as though I either heard the doctors at MSKCC wrong or misunderstood them about some things that I know I had a clear grasp on. Tried to imply that I must be mistaken about the story of a little boy who underwent a COG protocol and then did antibody treatment with COG. Tried her damnedest to make me look like nothing more than a crazy mother. It was the most unprofessional thing that I have ever witnessed in my entire life. Thankfully, I have a long list of doctors, some of which I have a four year history with, that would quickly dispute her claims about me making it "too difficult" to treat my child. Many of those doctors even work for or with USACW. They could all confirm that I have never questioned their judgement. They have never given me any reason to. There are things she tried to tell me I was wrong about that a simple Google search could clear up. Things like Children's of Philadelphia being the other top hospital for neuroblastoma beside MSKCC.
There are not words to express my disappointment with yesterday's events. I am just appalled at the situation. I have learned that I can trust no one here. Once we get out of here we will not come back and I will be sure that if I am ever asked about a recommendation on where someone should go for cancer treatment, that I will recommend that they go elsewhere. If I am so crazy and difficult, then why am I not the only one that has had such a hard time here? Why are there other families that feel just like me? Do we need to start banding together? Because we can. This situation is not right. It is disappointing, it is hurtful, it is appalling. And sadly, it will probably happen again with another family. After my experience, I will likely never again bring my child to his hospital for anything related to oncology, however, I will happily recommend the following doctors affiliated with USACW:
Dr. Ladonna Crews (Peds attending)- this woman told me my son had cancer. She is a wonderful compassionate woman who works hard and digs deep to look for answers.
Dr. Martinez (Genetics)- This man has searched for gene mutations in Clayton since before we were ever diagnosed. He is a very nice, very brilliant man that has been very helpful to us for about a year or so.
Dr. Beall (general surgeon/urology)- Wonderful man. Since the beginning, he has been inquisitive and eager to help look for answers. He did Clayton's biopsy and even gave me his cell number and told me to call him if I had any problems or needed anything. Yesterday evening after I left our meeting, I texted him the picture of Clayton's clot and he called me before I was off the ramp at Malbis. That is a doctor! He has been very helpful multiple times throughout this process.
Dr. Terry (urologist)- I love this man. I met him when I was pregnant and in anticipation of Clayton's kidney issues he was waiting on his arrival and even came to the hospital while I was in labor. Then while he was visiting his son in Birmingham, he came and visited us while we were in the NICU there. He has been there for us many times over the years including during our trials with cancer.
Dr. Kohaut (nephrologist)- Very smart and interesting man. I enjoy seeing him. He has been a very good doctor to us for years. He works mostly at Nemours in Pensacola, but he also consults with USACW.
I want to add that they also have a great sedation team that does the sedation tests in their imaging center. They are all so nice!
Now I could try and continue to raise cain about what has transpired, but here is the thing: I want it to be done. I want to get out of here. I feel as though I have been beaten and bruised by this place and the apparent "attitude" that I am this nasty person. Because of this doctor and this experience I HATE this hospital and that is a very sad thing. But right now it is true, I HATE it! I hate that I am being made to be this crazy person. I hate that I am being made to be the bad guy here. I will not apologize for looking after my son. I will not apologize for standing up to get him the best medical attention possible. If I apologize for anything it will be for the fact that when I am emotional and upset I can curse more than normal. But that is it. I am an amazing mom and I know it and yet it is as though I am being shunned on the 5th floor for advocating for my son and questioning his care. When did it become a crime to question a doctor? Things are definitely very one-sided around here and I am more eager than ever for us to get out of here as soon as it is safe for Clayton. God please let that be soon...please! The hell (life with cancer) I have been living in for months has just closed in a little more. I want desperately to move on from this place and I will move on, but I will never forget what has happened here.
When people read this they need to remember that sometimes I am sad when I am writing and sometimes I am mad and depending on my mood it will can make things sound different then how they are meant. I try to get things out as I mean them, but I don't always hit the mark.
This is the public web, but this is my place away from medical people. It is my place to share the highs and the lows of our journey with the our friends and family and any other mothers going through a similar experience. It is not here to be used as a tool against me or to be thrown in my face in any way. So please if you are not a friend and you are not family and you are not another mother looking for comfort then go away...This blog is not for anyone to judge. It is where I can cry and laugh with people who have love in their hearts for my family. So if you do not have love for my family and our story then I beg you to please go away...
*UPDATE*
Five years later and I still hate that hospital. Leaving was the best thing we ever did. There is no comparison between the care we received there and the care we receive elsewhere. From our many many experiences I know that in order for a hospital to function for the patients, it starts with attitude and values that are passed down from the top to the bottom. USACW lacked that from everything we saw. I truly hope that changes one day. Clayton is now followed by Nemours in Florida and MSKCC for oncology and we adore both of them and have never had a problem that could not be worked out cordially by all parties involved.
Amen!!!!
ReplyDelete