Life has finally afforded me the time to update everyone on Kerrie’s progress since our last letter. I sincerely apologize to all who continue to check the site in hopes of seeing any information on how Kerrie is doing. Constant battles at every turn, combined with trying to maintain our daily routines hasn’t afforded us the opportunities to keep everyone on the same page. Please do not mistake my lack of communication as any sign of disrespect to the countless people that love Kerrie. These updates have always been, and will continue to be, an enormous priority for me. Therefore, we plan on keeping everyone better informed from now on.
I’m sure all of you know by now, but Kerrie has defied all odds in surviving 5-FU chemotherapy treatment despite her DPD deficiency. Since this is such a unique case, she has always been “writing the playbook” on progressing from this terrible ordeal. The reason I am bringing this up is to explain our lack of previous, in-depth updates. We simply had no idea what to expect (then and now) for Kerrie’s recovery. The ultimate goal of this update is to attempt to create a current, accurate picture of Kerrie for all to see and experience with us.
As some of you may have seen in a previous Facebook post, Kerrie is now being treated at the Ridgewood Center (a Genesis facility) in Ridgewood, NJ after being treated at Kessler for approximately 10 months. Kerrie entered Kessler with extremely minimal alertness, the inability to move her arms and legs, and without any type of communication ability. Throughout this trying, but hopeful year, we feel that Kerrie has shown excruciatingly slow, but definite progress in the above areas, as well as in other, sometimes overlooked areas.
Below are some of the examples of Kerrie’s documented progress:
- Kerrie now is able to communicate by speaking and answering some questions, although this is not always consistent or accurate (I feel that the accuracy and consistency continues to improve). All in all, I feel like Kerrie’s communication is somewhat like talking to someone in a dreamlike state, even when her eyes are open. She continues to surprise us with new things that she is saying or doing to communicate. We have also seen some of Kerrie’s personality and favorite phases come through now and then (such as “It is was it is” as well as the little subtleties in her mannerisms during communication).
- Kerrie has been able to spell her name when prompted
- She is able to answer “yes” and “no” questions (again with varying consistency/accuracy).
- She is able to make occasional waving motions (when someone says hi or is leaving) and clapping motions her hands (when listening to some music).
- She frequently demonstrates spontaneous verbalizations by saying things like “I’m not feeling it today” or “it is what it is”. She has also said “bless you” to someone’s sneeze or “excuse me after a burp”, along with things such as “good morning” and “thank you”. There are also countless other things that Kerrie is saying with increasing frequency, but again, not as consistently as we would want.
- Kerrie often says “I love you too” to myself and the kids, as well as to the rest of the family. We have captured Kerrie blowing kisses to us on command.
- She will say “ouch” when something hurts.
- Recently Kerrie has even responded appropriately to a “knock knock” joke!
- She has recently greeted me with a “Hi Sweetie”.
- In Kessler, she was able to say the kids’ names and answer some yes/no questions about our family. On a particular day, a therapist asked Kerrie “Is your daughter Mary?” and she responded “no Maeve”.
- She often says “Hi” and “how are you?” when greeted, but not all the time.
- A few days ago I hugged Kerrie tightly and said “I love hugging you” and she said “thank you, I love hugging YOU” (with the correct intonation which tells me she wasn’t just mimicking what I said). I squeezed her tighter and she then did the same along with the big-hug, happy “grown” that all of us do!
- Kerrie is now able to move both arms and legs, although the quality of these movements is hindered by neurologic spasticity (which is increased tone of her muscles, making them tight and rigid). However, this doesn’t stop her from making waving motions to say hi and bye. She is also able to kick her lower legs and lift her knee upon command (again, inconsistently). She now often leans forward in her wheelchair to kiss us hello or goodbye. She is now able to reach her face independently with her hand to try to wipe the hair from around her eyes, or move her sunglasses when she is outside with us. While at Kessler, Kerrie was able to advance her feet to mimic walking when supported by a harness to help her stand.
- Just the other day, I saw Kerrie look at Fiona and give her the biggest, most intentional smile that I have seen since all of this has happened.
- Kerrie has come incredibly far with regards to alertness. She now alert for most of her waking hours, but sometimes shuts her eyes and keeps them closed (we sometimes think maybe her eyes are bothering her, her vision may annoy her, or some other irritant, but no one really knows for sure). But this is significant improvement as just several weeks ago there would be longer spans of not opening her eyes for visitors, therapy, etc.
There are so many areas and examples of improvement that cannot be easily conveyed to all who have not seen her since last year. I hope this gives you all some type of mental picture of how Kerrie is doing. Of course, despite her incredible progress, we always would like to see more, and at a much faster pace. But at this point we will be grateful for everything.
This now leads me to, perhaps, the most important part of this update. Now that you have an idea of Kerrie’s current place in her journey, hopefully you realize just how far she has come. Of course there have been countless people who have facilitated this progress, but Kerrie has demonstrated all of the fight to this point. Therefore, I am asking that family, friends and neighbors help us going forward and become more present in Kerrie’s journey if you choose to do so. Basically, she now needs our help and company to help her through this. I know many of you may want to visit or do something for Kerrie, but are nervous or scared for what you might see or experience. I can assure you that Kerrie looks as beautiful as the day I met her! Visually, the only difference is the rigid muscles and some difficulty looking to her right side at this time. She spends most of her waking hours in a tilting wheelchair, but is able to sit up unsupported with some assistance. Here is a recent picture of Liam and Kerrie before her discharge from Kessler:
We have always felt that Kerrie has been in an internal (and external) struggle to regain her life, by “relearning” daily tasks or re-establishing brain connections for many things that we often overlook. This also includes re-establishing, or “finding” past human voices, laughs, love, energy, touch. I equate this to walking into a room and smelling something that reminds you of your mom’s or grandma’s cooking many years ago. Along with that thought, your brain suddenly fills with thoughts surrounding that point in your life. Your brain is re-establishing those smells with your life experiences. So a simple “hello” from a friend will help her to re-establish these connections. Some friends just come and talk about life, and some simply read current celebrity gossip in US magazine (a Kerrie favorite over the years)!
Again, I ask all of you to please feel free to visit Kerrie any time or any day. I am certain that she would be so happy to see you, but more importantly it will help her get better. You can contact any of us (The Prettitores and Matteos) if you have any questions before your visit. We have also provided a visitor journal to help you, our family as well as future visitors. Simply sign it and write about your visit with Kerrie. Maybe she smiled or said something new that we would all want to know. It is also a good resource to provide other visitors with ideas on what to do when they are there.
Another option is to provide audio or video for us to play for Kerrie, which is also extremely important (please let us know if you would like us to play it for her in private as we can definitely do that). Feel free to upload your audio or video to MessagesForKerrie@gmail.com. Letters from friends are also helpful and can be sent to this email address.
Again, please know that although we haven’t kept in closer touch as much as we would’ve liked, we truly appreciate your continued love and support. We are truly blessed to have such loving, supportive family, friends, neighbors and community that are willing to do anything for us. Thank you to all who have supported us financially, spiritually and emotionally through this journey. The funds raised had enabled Kerrie to stay at Kessler for an amazing amount of time, and continues to help us cover ongoing medical, legal and home expenses. Not only is this support critical to Kerrie’s recovery, quite honestly, it remains the fuel that keeps me going every day. You all have supported Kerrie’s medical journey to this point, now it is time to “bring out” the Kerrie that we have all come to love, respect and cherish.
Thank you from the bottom of our hearts, and we look forward to seeing, talking and re-connecting with each and every one of you.
– Glenn and the Prettitore, Moore and Matteo Families