Monday, May 20, 2013

Palliative Care

I know all of this has been a little jumpy. I guess it's been a little hard to put into words. I've found it to be a pretty exhausting process to go through, but as with this whole journey - it's a process. It's all about finding a place for all these various pieces to fit.

So as the story goes...our actual pediatrician left Kaiser, and we were in need of another. This was okay by us, as we were going to need to find another had she stayed anyway. She was really rigid and not open to suggestion. After the accident, my mom and I had taken Aviana for an appointment and she had said something so outrageously rude to my mom. I swear you all would have teamed up and plowed her over. My poor mom, I felt awful. Saying it to me, that's one thing. Taking your own aggression out on my mom for no good reason, especially after all she had just recently been through, well now we have a problem. I think she was on her way out and really just didn't care. It was time to move on anyway, but you know what an ordeal finding a new doctor can be. On top of that, when the time finally came to actually find another - I was shell-shocked so I just wasn't looking forward to it!

I eventually just picked one who looked good, hoped for the best and called it a day. I was actually dreading the appointment because I knew the content was going to be about something I wasn't comfortable talking to a brand new doctor on our first meeting about. My mom went with me, because at one point I wanted her to wheel Aviana out and walk the halls - for both of them...


But how did I arrive at the pediatrician you remember the game Frogger? I'm going to jump back for a second. I know, I've got hops! You should see what my mind has been like for the past month!! I swear this is concise!! 

Just follow me, I promise you won't get lost...maybe ; )


As I've said, after what happened last year - we 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. 

At first I did nothing. Then, I began my search for something of this sort. Who? Where are these sorts of people? Who could help us? Who could be of service to us and for us? Searching, searching, searching and then, there it was - there they were. I had never heard of them. I didn't even know they existed. As I read, I wondered. How could we have had a child like this for so long...made our ultimate wishes known to so many, for so long, and not one single person had uttered these words to us? Are they a secret? Are they another dirty little secret that no one wants to talk about?

Palliative Care 

Have you heard these words? I searched further and wouldn't you know it, Kaiser has their very own program. The very place where this failed liver biopsy went down...there's a Palliative Care Service Program. Had I been privy, they could have helped us! They could have been by our side to help decipher what was going on last year. Maybe everything would be as it is now, but who knows? I wish they had been included in that family meeting!! I knew I needed to get in first with that pediatrician and then with this department. This way, in the promise to Aviana would be that - a promise.

First things first. For those who have never heard of it -

 Affirms life and regards dying as a normal process
Neither hastens nor postpones death
Provides the relief from pain and other distressing symptoms
Integrates the psychological and spiritual aspects of care
Offers a support system to help members live as actively as possible until death
Offers a support system to help the family cope during the member's illness and in their own bereavement

- fully understand your illness and treatment choices.
- improve your comfort, strength, and well-being. This includes relief from pain, loss of appetite.
- ensure that all of us at Kaiser know your goals for how you want to live, given that you may have some chronic problems to live with.
- develop a plan for your future personal needs and care so that every member of the care team, including your family, understands and respects your wishes.
- complete an advance health care directive so that your family and medical team work as partners to support you, should you become unable to speak for yourself.

My gosh though, going to a new pediatrician, talking about this, ugh! I felt sick to my stomach before I left. As hard as it is, we know it's the right thing for our family. Palliative and Hospice have a lot of similarities and some differences - one thing that is always kept at the forefront with both is the patient, and what the patient would want. So...most importantly, it's the right thing for Aviana. If she could speak, she would want this and that is what pushes me/us through. I'm telling you though, this is the single hardest thing we have had to do since the accident!!!!!!!!!!!!!! It's hard to put yourselves aside and do what's best for her. It's hard to ultimately separate the two. Like I said, it's amazing what you can get used to, and Dave and I have honestly gotten quite used to this; more than I ever thought we would. It's really hard in one way - because we love her, and really peaceful in another - because we love her. Dichotomy - to the end.


Hippity Hop, I don't stop.

Back to the pediatrician : )


Someone was looking over me. The new pediatrician was heaven. He was a dream come true. He was gentle and loving. He was perfect with Aviana and my mom. After I sent the kids on their way ; ) I talked to him about the difficult stuff. I, of course, cried like the baby I am. Our new doctor was as sweet as sweet could be. He said he has never had to deal with Palliative and didn't know anything about it, but he would make sure to find out everything he could and point us in the right direction. He sent nice emails, and followed up on everything he said he would. He was just what I so desperately needed.

We next had our Palliative meeting. I wasn't nervous this time, because I knew these people were there to help us, to guide us. I did however know it was going to be really hard to hear the words falling from others' mouths. You know how it's one thing when you talk amongst yourselves, but a whole other story when it comes from the lips of another? I had a feeling that would be my biggest challenge, that and the fact that it would feel all too real.

Kaiser offices are usually so opened and inviting. This one was truly at the end of the road. It was on the 4th floor at the end of the hall, and recessed. We had to knock on the door and wait to be let in, so un-Kaiser-like. It felt kind of gangster. We were laughing in our own - laugh when things are truly heavy - fashion. As I was retelling the story to my Uncle, he was joking - did they ask, "what's the secret password?" In a whisper..."Palliative." We have to, or our heads would have blown off long ago!

The doctor and social worker were amazing. They had read all about us before we arrived, but asked about everything anyway. We explained how we felt in the beginning about quality, our journey through recovery, her liver, and how now all we want is for her to be as happy and comfortable as possible. We explained what happened the previous year and how we don't want her to suffer anymore. Above all, we don't want anymore pain as she has seen far too much in her short life. They agreed and said they will help us with our goal every step of the way. They will be there to help us with decisions as to if ways of her passing are comfortable and peaceful, etc. I don't want any of you to think anything is happening right now, but they will be there for us as things come up.

We talked for a while and at the end, they asked how we felt it went. I cried. I told them I thought it went great. We talk as a family about keeping her comfortable and happy, and out of painful situations but we've always felt there isn't much we can do other than what we already have by way of Kaiser, etc. I explained that knowing they are there for us, and having a resource in them makes me feel good and confident moving forward. I wish I'd known about them years ago, I would have definitely sought them out.

The meeting was hard, harder than I thought it would be. This kind of stuff sticks with you after returning home and thereafter. I just have to remember one thing though - as long as we follow Aviana's lead we will always be ok.


  1. I have been off internet cuz I fractured my wrist & it is too hard to type with 1 finger and might I add that at 53 is not the time to have your first cast. But seems I can’t walk & take a picture at the same time & it was of a new calf. (I thought you might like a smile)
    The Lord touched me tonight & said to check on my girls! So I read what has been happening & I know that yall are making the right choices. Palliative Care is awesome because it was there for my mother-n-law. Make sure that you let them know that yall will also need Rainey to be there too! Know all of you will continue to be in my thoughts & prayers. What a wonderful family you are and know I LOVE yall!
    Julie - Texas
    P.S. Don't check my grammer or spelling CUZ I only got 1 good hand & it is tired now *HUGS*

    1. Ouch!! Yes, thank you for telling why, and I would expect nothing less from you ; )

      Thank you for your comment and thank you for loving us so much to type so much with one finger...that means the world to me.

      I hope you are better sooner than later, as I'm sure you have an entire animal kingdom just waiting for you : )

  2. I"m so glad you found them and a new wonderful doctor. Wish you would have found them sooner but it's nice to know you will have the support when you need it.

    1. I agree. When we needed all of them most, they all fell into place...thankfully!

  3. Jen -- You know when you make a decision (especially the HARD ones) and you feel RELIEVED after you've done it? That's how you know you made the right choice. It sounds like this is a relieving decision. It sounds like there will be another team of people "on your side" when you are facing tough stuff with Avi. And it sounds like you made this decision in such a mindful way - keeping in mind your feelings and her needs. I'm so glad Palliative Care feels like a good fit!

    1. You are so right. Yes, I have talked to them further this past week...much further. I can't tell you how amazing they are. We are right where we need to be. It's water under the bridge to say should have known about them years ago, but gosh I wish I did. For some reason we weren't supposed to know...I will just have to have peace in that, as I do believe everything happens for a reason.

      Thank you Stephanie : )

  4. Broken record. I'm so sorry. Life sucks. The unimaginable becomes reality. You laugh through your tears. You laugh so hard people passing by must think you are there to celebrate a loved one's new baby when in reality you are being smacked over and over with a brick to the head (I tried writing this three times and every time it came out as a somewhat pun to what happened to Aviana. There's that dark humor).

    You know I love you and support you and your family NO MATTER WHAT!!!! You know Beya and the rest of my family love and support you NO MATTER WHAT!!!! The decision is you and Daves alone and whatever it is it is the RIGHT one.

    You know I'm always there for you emotionally and when the time comes I'll be there physically. I will tell you (and wholeheartedly mean it, you know I don't blow smoke up people's asses or just spout off some BS) exactly what Holly told me:

    "It's ok if you don't want to see me, or have anything to do with me, I just need to be near you. I don't want you to worry about taking care of me, I'll have a rental car and a hotel. I just want to BE there for you if you need it and if you don't then I'm being selfish by being close to you."

    Those were HANDS DOWN the best words I could have ever heard that horrific week. I thought I could handle it on my own. I didn't need anyone. I could do it MYSELF. Holly kept asking if I wanted her to come and I kept saying no, there was nothing she could do. In reality I needed her more then than any other time in my life and somehow, she saw through my unintentional lies. She was literally my lifeline at a time when I would have leaned on sissy. She had been through the death of her father. In fact Trina and her dad died exactly 20 years apart, to the day. It was just so, I can't come up with the right word so I'll substitute a completely inadequate one, good to have someone with me who had lost someone so close to her, had lived it and who also knew there was no magic phrase to be said and didn't mince words. Oh we laughed. I laughed harder with her than I had in a long time, definitely harder than with anyone else other than sissy. And I also cried harder with her than with anyone else. It was just so nice to have someone "get it" even though our situations were very different.

    I know you have a super strong support system but if/when the times comes I'll be there for you in every way possible, emotionally and physically. And who knows, maybe in the middle of tears you can teach me to make a pie! After all, when we stress out we bake! Two stressed bakers in the same room makes for some serious cleanup (you) and some whirlwind messes (me) and some killer desserts (us).

    I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you.

    1. Hello my sweet. I understand what you are saying, because like you...I'm always the one who's like, "I got this. I don't need anyone." I too would be saying no, no, no, no. I never want to inconvienience anyone and I always honestly think I got this. And most times I do. But it's just nice to have someone, isn't it. And yes, especially someone like your smart ass, dark humor, get it, loving, caring, at the end of everything could wrap me up and love me self : )

      I so love you and thank you for all you do and are to me. Thank you so I thank you enough? I sure hope so.

      I love your pie talk. You sure have that right ; )

      I miss you.

  5. I think if I looked in the dictionary under the meaning of grace I would find your name. Your Aviana's story is told with such love and dignity. You honor her with your beautiful writing. Thank you for teaching me what faith, hope and charity look like. You and Dave have been given the divine roll of being Aviana's parents. You as her parents have and will continue to be her voice. Have faith that whatever decisions you make for her will be the right ones. Your family rocks!

    1. Oh beautiful. Every single sentence. In my days of doubt, I know I will come back to all of these words - searching to make sure we did everything we could, turned every stone, made sure...and you know what - I know yours will definitely be amongst the words on my journey. I thank you.

  6. I've been catching up on the past few posts...and I just want to hug you. A lot has happened since we last talked. When I got my diagnosis awhile back, I was told that my only option was palliative care. There is no cure. No research being done. So I marched ahead, advocating for myself. And then BOOM. My liver decided to act up. Then it was possible hospitalizations, an abrupt stop to infusions, withdrawal, and talk of maybe not being a candidate for a transplant should I need one. It sucks.

    On a more positive note, palliative care can be a great thing. You find some very wonderful people working in palliative and hospice care. They really do care, and they really do want the best for the patient and their family. I am glad that you found them, as back alley gangster as they are. ;)

    Will Avi be able to start hippotherapy this summer? Much love, Jillian <3

    1. This comment has been removed by the author.

    2. Hi Jillian ~

      Yes, it has been way too long. I can't even remember the last time we've seen each other? It sounds like you have been through so much! I am wondering where you are now, and would love to catch up sometime if you would too?

      Yes, I think palliative is heaven on earth. I feel we are right where we need to be. I talked to them for over an hour last week and I can't say enough great things about them!

      Avi is finished with all of her medical stuff for Ride to Walk, I just need to organize it with her summer school schedule and her visit with Uncle Roger now : )

      I hope to see you sometime, I miss you ❤

  7. Oh, Jen...this is all so hard to read. I try to put myself in your place and my heart just aches. No mommy should have to decide these types of things. I remember for about a week while Audriana was in her coma, and we didn't know if she would wake or not, or the quality of life she would have, and I had a lot of time to stare at her and think, think, was agonizing, thinking the "what if's" for hours on end, days at time. One thing I knew for certain was that I would not prolong her life if she were hurting, suffering, and had no quality of life. As hard as it would be for me to let her go, I would do it...for her. Only a love so strong could find courage to do that. You know this, because you are living this reality. You love Avi so much that you would let her go rather than have her suffer. A mother's love. So strong.
    Love you, thinking of you always...

    1. Thank you so much Trina. The most selfless thing I have ever done in my entire life was let Kama go, and letting Aviana go will be the second most selfless thing I ever do. It will be so hard, but I know it will be the absolute right thing. From the day she was in the hospital, we knew if she had no quality - it was the right thing to do. As you said, if you were in that knew, and would do it too.

      So hard and my just wouldn't wish it on anyone.

  8. Jen and Dave,

    Please please please call me or Sue if you need anything, we are always here for you guys. Stay strong Cuz.

    Love you so much,

    Steve Remedios

  9. Reading this gives me a pit in my stomach for you but I definitely feel you're doing the right thing. You're in my thoughts always

    1. I know it does,

      Often times it does for me too.

      It can be so difficult,

      But then so peaceful at the same time...

      Thank you

  10. Every decision you make for Avi is so carefully thought out with love for her. It just radiates off the page. I'm so grateful that you have created your own village.

    Although I doubt this was ever your intent, you have taught the rest of us so much.

    Love you,

    1. Thank you so much Dixie.Your comments mean so much to me...every single one!!!

      Love, love, love YOU!!!!

  11. Praying for your family! I have followed this blog for awhile but never comment. I pray for peace of mind and comfort for you. I commented a long time ago mentioning the Johnson family and their son Owen. You're an amazing woman!


    1. Thank you so much Kate, I really appreciate it. I unfortunately have a terrible memory sometimes, I wish I could remember Owen and The Johnson Family?

  12. I know this was a big, HUGE step for you guys. I know a lot of families who use Palliative Care and Hospice. It's almost like no big deal in our world. But I just put myself in your shoes for a hot second and it was a HUGE deal.

    I know Avianna will show you what she needs. And you'll follow.

    Sending love.

    1. Thank you Shauna! Yes following Aviana (who she was then and now) will never lead us astray. I'll always keep her at the forefront of my mind ❤ As you know, even though they don't speak words...they speak volumes with their eyes and sweet sounds.

      Yes this was a huge step for us, although we have always known this was the road we would follow if there were not any real progress. Palliative is huge in having people there to support us and talk to, instead of only having ourselves. It is also nice knowing they are there in order to avoid what happened last year. In talking to them, I found out that Aviana would have been able to be kept comfortable and would have avoided that hell week, during that failed biopsy where all her doctors told us to continue. I was told they made their decision based on fear. Knowledge sure is power, and with power we can move mountains : )

      I was confused though when you wrote this, "I know a lot of families who use Palliative Care and Hospice. It's almost like no big deal in our world." I know there are lots of different families, but I was trying to imagine for whom end of life decisions would be no big deal? For us, this will be the single toughest decision we've ever made in our entire lives. It has kept me up many a night in the beginning, caused too many headaches, left me completely nauseas at times, and still and probably to some degree will until and after.

      I think of other families in our position and my heart aches in indescribable ways for anyone who has to go through these varying meetings and emotions; with any loved one, but especially their child. I wonder if they have simply been misunderstood or hadn't explained themselves fully due to time or emotions, or if they were brushing the severity off as a coping mechanism because the hurt is too extreme? If I am understanding, which maybe I'm not...people in everyday life, who don't read my blog and know the intricate, details as to why (which don't even scratch the surface of the depths of our decisions) might very well say the exact same thing about us. And…it is what it is, so be it. But, I would hope that the death and dying of our loved ones is still a big deal in our world today.

      Anyway, I hope you know, I'm not trying to be combative; I'm just trying to understand.

      Thank you for sending your comment and your love!