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Kerrie’s Update: May 2016 by Glenn Prettitore

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Again, I’d like to thank all of you who continue to keep Kerrie and the rest of the family in your thoughts and prayers. Also thank you to all who have emailed, sent videos or visited Kerrie. As you know, it is these types of gestures that are critical to Kerrie’s progress.

I apologize for the delay since the last update, but you all know how this goes by now! Kerrie is still at The Ridgewood Center (Genesis) and continues to show painfully slow, but definite signs of improvement since this all started. Of course there have been many ups and downs, which I will explain, but we remain hopeful for continued improvement.

On a very positive note and towards the end of 2015, Kerrie had the opportunity to be part of an ongoing study on neuro-recovery at The Rockefeller University in NYC. While there, she underwent 2 days of specialized diagnostic imaging/testing as well as other assessments. It was a wonderful experience and the doctors/staff were simply amazing. It was incredibly comforting to be surrounded by such caring, intelligent people who knew just what Kerrie and our families are going through. Simply put, we received a good education on brain healing and learned that although Kerrie has lost brain tissue, the belief is that she has enough tissue remaining to continue to improve with supportive treatment (PT, OT, Speech Therapy, etc. as well as stimulation from friends and family). In one imaging study while in an MRI machine (functional MRI) Kerrie was asked to visualize swinging a tennis racket with her right hand. Her brain activity was then monitored in real-time to see her reaction. We were told that during the command, Kerrie’s auditory system was active, indicating that she was listening to the command. The brain activity then shifted to the part of the brain that is associated with visualization. Kerrie appeared to be performing this task! We don’t know what exactly she was visualizing, but the point is that her brain appeared to be doing what it is supposed to be doing during this task and she was visualizing something. With other imaging, we discovered that Kerrie’s EEG has improved dramatically since the initial injury. It is hard to convey all of the other technical results in this update, but to summarize, we know that Kerrie’s brain has been healing ever since the injury, and hopefully will continue on this course going forward. Obviously we don’t know where all of this will lead us, and progress is sometimes measured in years, but it was great to discover that her brain infrastructure still offers her the opportunity to get better. Needless to say, we remain very thankful for this Rockefeller University opportunity.

As I’ve stated in previous updates, Kerrie remains in the minimally conscious state, with some signs of emergence from this state. I know the term doesn’t sound that great, but it is the first major hurdle to overcome after a brain injury. Unfortunately, people can stay in this state for a long time (years), but that doesn’t mean that they can’t improve. The opportunity for improvement is definitely there, and we are thankful for that as well.

As for day-to-day occurrences, Kerrie continues to answer some basic questions (with some inaccuracies), and has occasionally come out with new phrases (Such as “Hey!” when she saw me). She is able to follow some basic commands such as nodding yes or no, winking, showing a happy or mean face, giving high-fives and blowing a kiss. One day I walked up and said “Hi Ker, how are you?” and she replied “Good, how are you?” I then said “Good” and she replied, “That’s good”. When I tell her she looks beautiful she often replies “Aww. Thank you”.

I’ve been asking her to finish words or phrases from time to time. When I asked her where she grew up, I prompted by saying “New Hyde…….” And she said “New Hyde Park”. When I asked what she does for work, I prompted with “Graphic…..” and she clearly said “Graphic Design”. About a week ago, I asked Kerrie the town where her mom lives and she quickly, clearly and accurately responded “New Hyde Park”. This is an obvious improvement from weeks earlier. Kerrie was also able to finish the name of a previous work client company without any prompting. I occasionally call Kerrie on the phone when Elaine is with her, and sometimes the basic conversation seems completely normal as if nothing ever happened. The “back and forth” of words with Kerrie seem like I’m talking to a tired Kerrie (not long sentences but one to a couple words at a time).

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For those who really would like to visit Kerrie, but may be nervous or unsure of how to manage their emotions, please consider going. I know that there are a lot of you out there. I would be happy to put your mind at ease and hopefully make the visit happy and uplifting for you and Kerrie. Every single person that has visited Kerrie has told me that they were initially very nervous, but ended up truly enjoying their visit. All of them have said that they were looking forward to going back. For those that are on the fence about this, we have to put behind us the negativity that keeps us away, and focus on the positive effects of re-establishing a friendship. For those of you who would like to go but feel funny because you only knew Kerrie on a very casual basis, please consider going also. There is no reason why you can’t develop a new relationship with her. Simply introduce yourself again and talk about whatever comes to mind. Show her pictures of your kids or from a recent vacation. Sometimes we take for granted the world around us, including current events. It is extremely important for Kerrie to be kept “up on the times” in all areas of life, from politics to celebrity gossip. It ALL matters to someone struggling to adjust to the world around her. As I have stated in the past, we have friends (who see Kerrie often) that would share their experiences to make you more comfortable to go. I would also be happy to speak to you or even be there during your first visit if needed.

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Things are definitely not the same, but I can assure you that many of Kerrie’s traits are still there. They are just hard to see sometimes, or may be hidden until the day when they fully emerge. All of you who know Kerrie would agree that she was never a big “talker”! She still loves to listen and respond with “uh huh” or the occasional “oh really?” She still expresses herself a lot with her eyebrows! Kerrie remains her stoic, gentle, quiet self. Amazingly and perhaps most importantly, I have NEVER seen any sadness or anger in her face except for the occasional grimace with an uncomfortable movement. Kerrie remains the “matter-of-fact” woman who meets any challenge with a sense of incredible calmness and grace. Throughout this journey, we have heard from countless people (clinicians, etc) who, upon meeting Kerrie, describe an enormous feeling of energy in her presence. It’s amazing that all of these people see the same thing that we’ve always known, without Kerrie even being fully conscious. I’m sure you will all agree that Kerrie has always had that quiet, powerful presence.

With respect to the quietness, on occasion Kerrie doesn’t readily answer/talk to me or anyone else. That certainly doesn’t mean that she is not responding. There are a lot of complex things that have to happen to communicate verbally, and she may not always be prepared to do this. I can assure you that she is listening and enjoying our familiar voices and faces. On the occasions when I think Kerrie is less responsive, I often ask her to follow some commands to make sure she is listening. For example, if her eyes are clenched shut and she is not responding verbally, I would ask her to nod/shake her head or lift her leg. Even though at that moment you would visually think she is not responding, she would follow these commands for me 9 times out of 10. She is DEFINITELY hearing and listening to everything.

Several weeks ago, Kerrie had her eyes closed when we were at Bingo. On a whim I asked her to grab a bingo chip. She opened her eyes, leaned forward, grasped a Bingo chip from me and proceeded to place in on the Bingo board, and appeared to be trying to complete the chip line (B5!). B5 was not called, but we all know Kerrie’s artistic obsession with straight lines or things being incomplete/off center/etc!

Physically Kerrie has been working on grasping a water bottle or hairbrush and demonstrating functional use of it (bringing to her mouth or hair respectively). She is able to move both of her legs on her own (mostly gently lifting her lower legs in the wheelchair), and she is able to perform kicking motions on command. Kerrie is also able to shake my hand on command and give some hugs. She often leans forward to kiss the kids and I when we first see her. This week I asked for her to blow a kiss to Maeve. She did exactly that without difficulty! Kerrie is able to tolerate standing, but needs maximum help to get to this position. This week I saw her stand the best I’ve seen in a while at therapy. She required moderate to maximum assist but was able to stand for about 5 minutes.

She is now able to have all of her food and drink by mouth (pureed food with thickened liquids), but is dependent on others to feed her. She also has all of her medications by mouth. To put this into perspective, about 1 ½ years ago, Kerrie could not open her mouth at all and was being fed exclusively by a tube. We also need to remind ourselves that Kerrie was barely able to breathe by mouth on her own a year and a half ago.

I hope I’ve painted a relatively clear picture of Kerrie’s current progress to this point. I also hope that my updates continue to convey our positivity about Kerrie’s future progress.

Again I apologize for the delay in my updates. Honestly, I wanted to put this update out before Mother’s Day to honor a mom who has been through so much, yet still fights with all of her being to return to the life that she loves so dearly. Happy Mother’s Day to Kerrie and all the incredible moms who fight for what they love most. Enjoy and savor this day; we certainly will.

Thank you all for your continued, loving support!

-Glenn

Send a Message to Kerrie

You can help Kerrie's recovery. A simple message (a video, audio or email) can help Kerrie's brain rebuild connections. Even the shortest little clip can make a difference. Need a few suggestions? Shoot a video at your family dinner table of everyone saying 'hello'. If you're commuting home on the train perhaps a quick video reminding Kerrie of those commutes into the city. Be creative and fun. Send your messages to MessagesForKerrie@gmail.com.

Stop By to Say Hello

Even the briefest of visits can make a huge difference. If you're in the area, please consider stopping by to say hello in person. The staff at The Ridgewood Center are wonderful and will guide you to Kerrie's room. If you would like more info on what to expect during your visit, please contact us. The Ridgewood Center is located conveniently off of Route 17. Just a few minutes off the Garden State.

Show your support for Kerrie's Family and help spread the word about DPD Deficiency

14 Responses to “Kerrie’s Update: May 2016 by Glenn Prettitore”

  1. Helen Prettiore Somerset May 6, 2016 at 10:51 am

    Hi Glenn honey, thank you so much for your update on Kerrie. It brought tears to my eyes to hear how well Kerrie is doing and to know how wonderful you are to her. Many husbands would have given up by now – I pray for Kerrie but I especially pray for you -you are amazing and patient and remind me of your father. He was a wonderful patient man too – I loved him. Please continue with the updates and know that you are in all of our prayers – and if I can ever do anything for you or your family just let me know. God Bless you, love Helen.

    • Hello,

      I just happened to be on facebook clicking away and stumbled upon Kerrie’s story. Tonight my family (including my 7 yr old) and I said a prayer for your family. We will continue to pray for Kerrie’s recovery and strength for you and your family.

      There is nothing too hard for God. All things are possible. HE IS JEHOVAH RAPHA. The Lord our healer.

      May God continue to pour his blessings over your family.

      ♡♡♡Prayers for Kerrie♡♡♡

  2. It is wonderful to see the progress Kerrie has made this past year and a half. I often think of the times you and Kerrie came down to Memorial Pool with the kids. This is a beautiful tribute to a wonderful mother. I will continue to pray for her continued progress and for Prettitore family. God Bless!!

  3. Nancy Bengyak May 6, 2016 at 2:02 pm

    I have never met you or Kerrie, but I have been praying faithfully for your family since she was put in our church bulletin in February 2014 and will continue to do so until she is able to go home with you and your beautiful children. May God continue to sustain you through this journey!

  4. Claire prettitore May 6, 2016 at 2:34 pm

    Kerrie, you are so strong and try so hard……..the road is long…….but your strength and love from your family and friends and prayers from people you don’t even know will help you on your journey.Your aides at the center love you so much and every one calls your name. One lady Rosemary always sings a song to you “Kerrie with a K” and tells you that you are Beautiful! Which you are.!

  5. Anthony & Rosanna Prettitore May 6, 2016 at 4:48 pm

    It’s so wonderful to see and hear the progress Kerrie has made. She is undoubtedly a very strong woman and we know, in time, she will be home and well. Not a day goes by when she is not in our prayers. Please wish her a Happy Mothers’ Day from us.

  6. I had the unforgettable pleasure of meeting and briefly working with Kerrie several years ago at Harrison and Star. What a beautiful, spirited person– then and now. I have followed the ups and downs of her journey over these past months and more. What impresses me most is not only Kerrie’s unstoppable spirit, but also the love and incredible positive energy shown by her husband and incredible, beautiful kids. You guys are the real deal. I know that I must be just one of many friends who have been moved to tears of frustration AND tears of joy for all that happened. Kerrie and family, you are all in my thoughts. If you need anything, please know that there are many of us out here who have not forgotten and who will never forget a friend.

  7. Hi Glenn,

    It’s great to hear the wonderful update about Kerrie’s progress. As you mentioned, Jen visits with her often and would be glad to comfort and give guidance to anyone who is nervous to go at first.

    Happy Mother’s Day to Kerrie. Although this weekend is all about the Moms, you deserve so much credit, too. You are an incredible husband and father and a pretty good backyard pizza maker, too!

    Bill McCabe

  8. Dawn Hillenmayer-Berube May 7, 2016 at 12:51 pm

    Happy to hear the update on Kerrie…glad she is moving in a positive direction!!! And as I was reading I couldn’t help thinking what an amazing man, husband and father you are Glenn. Happy Mother’s Day to Kerrie! Wishing all of you lots of love and happiness on this crazy journey. XOXO, Dawn

  9. Stefanie Wood May 7, 2016 at 9:10 pm

    Hi Glenn, I used to work with Kerrie when she freelanced for us at what was then called The CementWorks. I love how you describe her as not much of a talker but a good listener. That’s exactly what comes to mind when I think of Kerrie. A woman of few(er) words than most in the ad biz ; ) I always appreciated her calm, assured and witty demeanor, as did most of us when in the midst of client/agency insanity. She is one cool lady. I’m so happy to hear about her progress, significant in so many areas. Thank you for providing that frame of reference. You have such a beautiful family, and I look forward to meeting you and the kids in the near future. All the best to you and Kerrie. Please give her a Mother’s Day hug for me. Xo Stefanie

  10. Hi Kerrie~
    I am friends with your sister Lauren and I want to wish you a Happy Mother’s Day. You are so incredibly strong and inspire me everyday. It is wonderful to see how much your family, friends and and strangers love you (when reading thought your website). It is promising to see all of the progress you have made.
    I am sending PTZ your way. Positive Thought Zone is the motto we used when my daughter was sick with cancer. We wore PTZ on bracelets to remind us of all the little miracles and progressive milestones during, and after her treatment.
    Have a blessed day.
    Andrea

  11. Donna Figliola June 6, 2016 at 3:13 pm

    Thank you for the informative update. My thoughts go to Kerrie’s strong family and friends. You all deserve recognition. This is a difficult journey. May you all find strength in each other when you feel weak. May you continue to feel the joy and strength from Kerrie.
    With admiration,
    Donna

  12. Serrena Stallmo August 31, 2017 at 7:12 pm

    My cousin lasted one week after her first 5-FU treatment before winding up in ICU. Within 10-days of her first treatment, the family made a decision to take her off the respirator. She passed away three minutes later.

    She died 10 days after her first treatment and we had no idea that DPD deficiency was a possible issue. It was never mentioned, never tested for and it was the cause of her untimely death. We buried her yesterday. She was 60 years old.

    • Hi Serrena. I’m so very sorry to hear about your cousin. We understand your grief and your frustration. I hope you and your family will eventually find peace and comfort in memories of you cousin.

      When you are in a better place, please considering sharing your story. I like to think that every story we share could potentially save a life. Someone may find it when researching the drug and warn a friend or family member. I think about that every day wishing that we had done more research for Kerrie.

      We are so sorry for your loss.

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