Friday, May 17, 2013


So where was I? Oh yes, I signed and vowed. Signed and vowed. Well that wasn't enough. I knew we needed further guidance - from people who understood what we were going through. We needed a group who we could talk to, people who would empathize. Those who would be able to help us with our goal for Aviana, that being comfort above all else.

It took me some time to recover from that week at Kaiser. I didn't do anything at first. I think I was shell-shocked. I haven't written about this once, as I was and still am so deeply affected by it. Like I said, when something truly rocks me, I turn inward. So much so...I can't even utter a word about it. I stuck up for the doctor who did the liver biopsy to everyone I knew. He was by far Aviana's best doctor! He loved her, and us, always.

Every time we came back from The Institute, he was right there waiting with opened arms and as supportive as could be. Please understand, often times, traditional doctors don't always embrace what they at The Institute are doing, or prescribing. I always appreciated our doctor because he had an opened mind and saw that it made perfect sense. Above all - he wasn't too proud to admit that what The Institute recommended for her diet and well-being was working over what they at Kaiser were attempting! For that reason, he always ordered all the insane amounts of blood work we needed, and did everything he could in support of our efforts to and from Pennsylvania every 6 months, etc. He and his office were Johnny on the Spot, they were like white on rice. I made sure to always let them know how I felt about them. In fact, I made a point to skywrite it all over Kaiser! That's how much I loved this office.

So when all this went down, he was first and foremost still our doctor! I think you all know my take on things and I'm the first to always say - accidents happen! Things happen! We are not perfect beings! If you've escaped things, it's by some sort of grace, but this all could very well happen to you too! Well that's the same take I had about the failed liver biopsy. I still loved this doctor and I knew full well it was an accident, and was treating it as such. Of course I wasn't thrilled with all Aviana was potentially about to embark on, so that is the reason we had to back up and re-evaluate the situation. We explained our reasoning to all of the doctors involved, and our main doctor seemed to understand with his entire heart. He even said if in her situation he wouldn't want to live that way and has made it known to his wife. So I knew he understood where we were coming from.

After the family meeting, Aviana was rushed back into surgery. As the worst week pressed on I continued to see Aviana's other doctor whom I also love, but someone was clearly missing and in a big way. I gave it time. Scratched my head. Looked at Aviana lying there day after day. Felt really lonely. Finally, as the week was closing in, my sadness turned to anger. Where the hell was our doctor? The one who has loved and supported us most in the last 3 years? The one who has been there for us? I had to get out of there. We had to get out of there. On the second to last day, when something so traumatic happened that I will never write about it, my anger turned to downright rage. Why hasn't he even bothered to check and see how we are doing? Just once?!? Why hasn't he even picked up the phone to call? Where was Johnny, the star of Johnny on the Spot? I felt so betrayed.

After many days home from the hospital, he finally called to check on us. I was flat and deflated. Indifferent. He asked if I had any questions. I said, "we're fine, no questions" and basically hung up soon after. I was instantly pissed at myself. Idiot. That's not at all who you are. My heart was racing. I quickly gathered my thoughts. I wanted his honesty. I really wanted to know the truth. I wanted to hear his heart. We had come too far to go down like this. I decided to ask my one and only question gently. I wanted to truly know, my gosh...I needed to know. I called right back and said, "yes, I do have one question. This was one of the hardest weeks for our family and I just wanted to know, where were you?" He said he was in some meetings, then on vacation, then asked if I saw someone from his office there, because he asked this person to represent his office. I said no, I didn't see or hear from anyone from his office. I could not believe my ears. So much flashed before me. My eyes were stinging. Not yet. After everything we had experienced - meetings, vacation, and the tone of his voice, so nonchalant. I explained I had my answer, I understood. Before I could even hang up the phone, the tears. Our perfect relationship was over. All of the support I once knew for our daughter, up in smoke. I hung up and crumbled.

I was left to wonder. Wonder: was this whole situation too much for him? Especially when we decided to maybe let her go? Doctors are used to fixing, fixing, fixing. He was the absolute perfect doctor with a spotless record; did this rock him in an indescribable way? Did Kaiser ask him to take a leave after what happened? Did they ask him to keep distance from us? Was it true that it would have been like burning her at the stake? Was that total cya? Why did I stick up for him, when he couldn't even check on us once? Were all of our best doctors looking out for our best interest? I'd like to think so. Am I naive? Always like to see the good in people? I've kind of always been that way, but this whole Aviana thing has made me grow up some, and open my eyes. I so love this group of doctors, so in the dead of the night, when everything is quiet and the thoughts start dancing...I sure hope everything was handled with only love and good intentions. I still miss our main doctor so much, and that is why the pain is so deep. A piece of my heart is broken.

I once again veered into the unforeseen, so I never got to what I meant to write about.


  1. You stuck up for him because you are a loyal person who gives people the benefit of the doubt.

    The non-chalant voice you describe to me says it all. Where are people's compassion?

    but after you explained that no representative came by, to me he should have apologized in a sincere and genuine way, if for nothing else than for that miscommunication.

    To me what are the odds that his vacation is scheduled for right after a negligent incident? A little to co-incidental for me, but I'm a bit of a cynic. In an ideal world he should have shown his face and carried on as being Avi's doctor and seeing to her best interests. This is just my opinion for what it's worth but I think there were most likely things going on behind the scenes with Kaiser's legal/risk management department. That does seem to be the most logical explanation. Now why he was so cold & callous on the phone I can't explain.

    It is just such a shame that yet again, for reasons beyond you & Avi's control, yet another loss was suffered. Besides what Avi went through physically, and you emotionally, now she has lost what previously was a great doctor.

    I cannot imagine the frustration on all levels this has brought you & Dave. I really can't. I don't know what else to say but that I love you guys and no one deserves any of what you have been put through. It is all just so mind-blowing.

  2. Just thought of something else. Maybe he didn't come to the hospital because he couldn't. Maybe they suspended his hospital privileges while they conducted an investigation? Just thinking out loud here. I am in no way making up excuses for this loser.

  3. I've probably already said this to you, but only two possibilities seem logical. One, that his higher-ups told him to avoid you because you might sue (although does anyone win a law suit against Kaiser?). And, two, that he was so sad/upset about what had happened that he couldn't face you. I'm betting on the former, but either way it's a huge slap in the face to you all. I know that when you find a compassionate doctor or nurse, they can make all the difference and I am as sad as I was a year ago that he let you down.

    I hope he reads your blog and knows how you feel.


  4. Jen. You are such a courageous woman and a wonderful mother. I'm so sad for everyone involved that the wounds on your heart just keep being forced to open again. I too hope that dr reads your blog. How much better it would have been to show compassion for your family. I wish I had had wise words at dinner the other night. I pray for peace and comfort for your whole family. Love you Sarah

  5. I'm so sorry for all you're going through. I have had severe health problems (not like aviana though) and have developed deep relationships to doctors who I thought were like gods...I know what it feels like to see nope, you're just a regular crappy person like most ppl (yes, I'm jaded). Sorry you felt that betrayal. It's the last thing you needed with all you're going through. I used to always see the good in ppl too...dealing with all the ppl I've been dealing with since hurricane sandy flooded my home (nothing like your problem, I know), I've come to dislike ppl even more. I love animals. They're intentions are always pure, agenda. Thinking of your family.

  6. I'm so sorry. When we saw you the week after this happened and I heard you talk about this doctor I could hear and see the pain and anger you had. I was so heartbroken for you.

    As you well know, we've had a doctor fail us but yet I continue to go to him. I know he feels bad about misdiagnosing sissy. We saw him the day after her diagnosis and he was still giving us hope that it might not be cancer. He has gone completely the opposite way and at times I feel that he is overcompensating with our family. Ordering tests to make sure it's just a virus, having bloodwork done when most doctors wouldn't, etc....

    But the one doctor who I think of almost daily is Trina's surgeon. He had done her original cancer surgery back in 1992. We could see his pain when he told us the lump he had just removed was, in fact, cancer.

    17 years later when she was diagnosed again he insisted on being the surgeon to do everything. Her biopsies, port installation, port removal (turns out she was a rare one where the port came dislodged), port reinsertion etc.....

    I will never forget the week she was in the hospital. She was admitted Saturday morning. I was there on Monday afternoon when a random doctor came in and told her she was going to die. I was also there later that evening when her surgeon came in. Mom pleaded with him to do something, to make her better. He looked at her with confidence and said "yes, we'll get through this." I could see in his eyes he believed it with all his heart. He was absolutely heartbroken when there was a "family meeting" Wednesday afternoon and we were told no, this was it. I know he had pored over her records, trying to find some miracle cure for her. He had called everyone he could think of, trying to find something that he might have missed.

    I still keep in contact with him. I send him photos of Asa at least once a year. Those notes I send to him are emotionally exhausting. He replies to every single one with paragraphs of memories that he has of Trina. The most obscure things that are imprinted in him, that Trina left on him.

    He has never forgotten her nor do I think he ever will.

    You know me, once someone hurts me or worse yet hurts my family I cut them out of my life completely. I don't give second chances. I can only imagine what it must be like to have trusted this doctor, to have leaned on him, to have let him in and then he just walked away.

    I'm so sorry. Broken record time. I'm so sorry.

    To what he did to you, to betray you, my family, I tell him simply:

    "fuck off you damn asshole."

  7. I know what it is like to have that relationship with a doctor come crashing down. It sucks. Big time. I can't imagine having that happen at such a critical point in time. I agree with the others. Either he couldn't handle things emotionally, or he was told to step back professionally for whatever reason.

    I know how bad it sucks to find another "perfect fit". The lack of that has me paying out of pocket to see the doctor and his CPA that I really click with. They don't accept my insurance. The thought of searching for another doctor and building a relationship again makes my anxiety go sky high.

    When I was failed by a doctor, and had to deal with their callous behaviour, I told them to fuck off as well. And then my husband called, and told them again to fuck off.

    We miss you guys. Love and light to all of you. <3

  8. What are the odds the doctor REALLY had a pre-booked vacation? It's not outside the realm of possibility. Is it possible this doctor had a family-related crisis of his own? Doctors are people too. When my best, most favourite, beloved, three-generations-of-my-family have been his patient practically since dinosaurs roamed the earth dermatologist appeared to have fallen off the face of the earth while I had a serious medical crisis (and had been his patient for 22+ yrs at that point, my dad for 30+ yrs) in a MOST uncharacteristic and seemingly unprofessional manner, I was initially livid but willing to give him the benefit of the doubt. I'm SO glad I did.

    His uncharacteristic unprofessionalism? Why would he do this?? A major family crisis of his own -- turns out that his youngest son (early 20s at the time) had been developing schizo-affective disorder (a severe mental illness) during the previous six or seven months and stabbed his mom (my doc's wife) one fine day. It made the evening news. Yes, my dermatologist dropped the ball on me... but he's a person too. And, honestly, if our kid became sick and attacked my hubby one night, I too might behave in an unprofessional manner.

    (My dermatologist apologized to me, profusely, shortly afterwards and I'm still his patient).

  9. I suppose he could be telling the truth, but with the way things work I could guess a possibility would be the hospital was trying to protect itself from a potential lawsuit and told him to stay away. It's sad but that's they way our system seems to work.

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