Pediatric palliative care research study. Please read if you are interested/know anybody who is interested.

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My Dr. JoRo is conducting a study. Please see the information below. Thanks!

 

 

We are inviting those aged 18 or older to participate in a research study intended to explore the experiences of those who utilized pediatric palliative care for their child before and during his or her death. The purpose of this study is to determine the individual, familial, and societal effects of this experience and to improve standards of palliative care for families of dying children. Another purpose is to gather information about which attitudes and actions parents found helpful to them, and which ones they found unhelpful or harmful. Our goal is to improve a model of compassionate caregiving and intervention that fosters resiliency at every level. Our team consists of an experienced researcher (Joanne Cacciatore, PhD, FT), a doctoral student (Kara Thieleman, MSW), and a master’s level social work student (Angela Lieber) from Arizona State University. If you decide to participate, one of these three individuals will arrange an interview with you. Interviews will be recorded and transcribed. Interviews may last between an hour to two hours. Your participation in this study is voluntary and your identity will remain anonymous. If you choose not to participate or to withdraw from the study at any time, there will be no penalty or loss of benefit. Participants will be provided with a list of bereavement resources and we will gladly provide you a copy of the final paper upon completion.

Please contact Dr. Joanne Cacciatore-  jcaccia@me.com – if you are interested in being interviewed for this study.

Yesterday, I ended Valentine’s Day just as I should have. By barfing all over myself in the car.

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Ronan. I am a high functioning sad person. At least that is what I told my agent, Nena today when she texted me to ask how I was doing. She responded with, “High functioning sad… Boom! Keep writing!” That made me laugh. I also love that my agent checked in on me and she knows with me she is never going to get the easy answer which is, “I’m doing fine! How are you?” She knows with me I will always bluntly tell her how I really am doing. Today, I am sad but as I said before I am a high functioning person who is sad. I am not a sad person who stays in bed all day. Not that there is anything wrong with that, but for me, if I stay in bed, I die. I know this. I am a sad person who makes a choice not to stay in bed and die. I choose to wear my lip gloss and go on about my day, the best I can. Even if that means I only make it to the grocery store and Target to take care of the things we need around the house. To me, even those days are victories.

Today was indeed a day of accomplishments. I’ve slowly started to get some things ready for Poppy. I have had a hard time, preparing for Poppy at all. I don’t have a nursery done. I don’t even have a room for her. I put the kabash on all of that for fear of jinxing myself. I was thinking that I was crazy, but come to find out, this is the way a lot of my jewish friends do things too! Many of them don’t allow anything in the house until after the arrival of the baby. So I’m not crazy at all! I’ve just decided to take the jewish route on all of this. My friend, Sarah Y asked this of me in the very beginning of my pregnancy. For me, it makes sense and I was happy to follow her advice. Having everything ready for Poppy before she gets here hasn’t sat well with me at all. Call it being superstitious, but I think at this point in my life I’m just listening to what feels right. As I said earlier, I’ve slowly started to get some basic things ready. Today, I went to see my friend Katie and she helped me order Poppy’s infant seat and stroller. I’ve been stressing about this for weeks and it was nice to get it done today. For now, I just need to take care of the basics. Although the basics do not include the Poppy rain coat and purple leopard print Ugg baby boots that Rachel and I found in NYC last week… but seriously, who could pass those up? I don’t even care that we live in Arizona and the rain coat won’t even fit her until she is one. I might have squealed out loud when we found both of those things;) Best dressed Poppy girl for sure;)

After I got the stroller taken care of, I went to meet my friend, Melissa for a quick coffee so we could catch up. She had sent me a text this morning after reading my blog and it simply said, “Here for you.” I know she is always here for me. She has been from the first time I met her right when you were diagnosed. Her text meant the world to me though. Truly. She is always there for me without judgment, but careful advice instead. That is a very fine line to walk, but she always does it so gracefully with me. I am so very blessed to call her my friend. We caught up with a quick coffee and then I ran to meet Fernanda and Stacy for lunch. See, I told you I am a high functioning sad person! Look at all the people I saw today that I know a year ago I would have hidden from! The 3 of us caught up on some foundation things, life things, Poppy things, hot doctor things;);) etc…. Fernanda had her hand on my Poppy belly for most of our lunch. Your sister is already so feisty! I swear she is kicking, moving, punching, and dancing inside of me all the time. There does not seem to be much quiet time with her at all. She must be trying to prepare me for what’s to come. You know I will love every second of whatever your baby sister throws my way. Just as we were wrapping up lunch, Stacy looked at me and asked if I was alright. You know the answer to that, Ronan. I sat with my friends, told them no, and cried at the restaurant table. It’s nothing new. Crying in restaurants is pretty much a given now. I parted ways with my dear friends, thankful for them as always. I am truly blessed in that aspect of my life.

I started this a few days ago. Too much has happened for me to remember which is why I hate taking a break from writing. I don’t want to take breaks from my writing, but lately I am just so tired it’s all I can do just get through my day. This last trimester of being pregnant has me wiped out and that’s an understatement. I spent yesterday, Thursday, or some may have called it Valentine’s Day, doing some things for you. I am not a fan of Valentine’s Day. I’m pretty sure I went off about it on here last year, but as of now, I just don’t have the energy to do so. I renamed yesterday, “Happy Cupcake Day!” due to your love of cupcakes. I took some down to the clinic at PCH, just like we used to do on this “holiday,” when you were here. I saw some of your favorite peeps and caught up with them for a bit. Mostly your Sharon who I always love to visit and I miss so much. She was always so good to you. I left the clinic and went to spend some time with our Mr. Sparkly Eyes. I made sure to bring two cupcakes from you of course and we sat and ate them together. Not before I took my cupcake, smashed it into his, and said, “Cheers to Ronan!” We sat for a while and caught up while your Poppy sister was going crazy in my belly the entire time. We sat and laughed about that and I made him feel her moving all about. I am obsessed with feeling your Poppy sister. I also love it when everyone around me touches my belly as well. I welcome it with open arms as it makes me smile. I talked to him about some other things that have been bothering me in my head. My over analytical mind. He called me eccentric and told me that I am not crazy like I often refer to myself. I ended our day with my usual, “Where do you think Ronan is question?” that I’ve probably asked him 50 times before. It’s mostly always the same answer. I just like to hear him tell me over and over again, because it gives me a little peace of mind. At the end of his answer he always tells me you are still around me, you are smiling and saying, “Look at my amazing mom and all the good she is doing in this world.” He promises me I will see you again. I believe him.

I picked up your brothers early from school. Spent some time with them and took them to basketball practice. On my drive home, I literally threw up all over myself in the car. Seemed like a pretty fitting way to end Valentine’s Day a.k.a. stupidest day ever. I’ve said it before and I’ll say it again. I don’t need one day a year to have shoved down my throat of why I love the people in my life so much so and why I should show them my love by buying commercialized crap. I am thankful for the people I love, every single day. Even on the days that I hurt so much. Your daddy is the same way, Ronan. I am told every single day how much he loves me and he does not need to go out and buy me some fancy jewelry to prove his love for me. At the end of the day, fancy jewelry will not save your sick child. At the end of the day, fancy jewelry is not fucking important. And if your daddy would have come home with flowers, he would have been punched. He knows this. You know what he got me, Ronan? A beautiful picture of you and he let me sleep alone in my bed for the night because that is what I asked him to do, due to me being sick with an awful cold/not wanting to get him sick. He would have done this on any day, not just because it was Valentine’s Day. In my head, your daddy brings me flowers every single day of the week. That is a true man right there.

Now it’s today. Today where I had an ultra sound. Today where I got to see your Poppy sister with her massive amounts of hair, full Ronan lips, fat cheeks, long legs, head down, getting ready for her arrival into this world and all I could think about is what I have been obsessing about for weeks now. How am I going to do this, without Ronan here? I can’t stop thinking about the picture I have in my head of watching Liam and Quinn walk into the room to see your Poppy sister and you are not there with them. I left my ultrasound and popped over to see Dr. JoRo where we sat and looked at her pictures and I sobbed and sobbed and sobbed for pretty much the entire hour and a half that I was there. I sobbed and talked. She listened, asked questions, make me do some mental work, and I listened to her as she rubbed my feet. (best therapist ever! no drugs, just feet rubs;) We sat while she rubbed my belly, left her hands there for a good 5 minutes while your Poppy sister moved all about. I watched the tears run down Dr. Jo’s cheeks as she felt your sister. She said she didn’t think she had felt a baby move about since she had her own baby boy about 17 years ago. That made the special Poppy time with her even more amazing. We talked about a birth plan and what that will look like for me. We talked about in which ways I will bring you with me. So much to do. So much to think about that my head is spinning. I am so thankful for her love, support, and guidance. I’m home now. Still crying up a storm. Exhausted from the day/head-cold/being pregnant/lack of sleep.

This is all I can write for now. More on my Dr. JoRo stuff to come. I love you. I miss you. I hope you are safe.

xoxo

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