7/21 marked five weeks that Kerrie has been at the Kessler Institute for Rehabilitation in West Orange, NJ and we felt this was a good time to provide a detailed update on her condition and prognosis and describe ways that you may be able to help. We apologize for the delay since the last update as well as the lack of details with the previous posts. When Kerrie entered Kessler on 6/16 her vital signs had stabilized and she was breathing on her own, while still having the tracheal tube in place for added safety. She would at times open her eyes and make eye contact but spent the majority of her time in a comatose state. She would slightly move parts of her body but could not respond to commands or would not “track” visitors when she did make eye contact (i.e. follow visitors with her eyes when they moved around the room). She would respond to some strong stimuli such as pain or anticipated pain. While she was at Valley Hospital Kerrie received a number of tests on her brain including MRIs and EEGs to determine if she had suffered brain damage from the 5-FU toxicity. None of the tests revealed evidence of significant brain damage but the last MRI performed days before she left Valley did not show as much improvement as we had hoped and this gave us some cause for concern.
In her first week at Kessler her doctors removed the tracheal tube and replaced it with a special valve that provides additional airflow when needed. She immediately began receiving three or more hours of physical and occupational therapy as well as experimental drug and sensory therapies. Since then her condition has improved but the gains have been slight. We are told that at this stage of brain injury recuperation the patient’s improvements are very nuanced. For example, in her second week at Kessler, Kerrie responded to what’s known as a “startle” test where her therapists try to get her to respond to a loud noise played on each side of her head. She had not responded to this test upon admittance so this was considered an improvement. Another example of modest improvement is that she appears to be able to support her head and body weight more fully during physical therapy treatments designed to build up her strength.
Kerrie spends most of her mornings receiving physical and occupational therapy and rests in the afternoon and evenings. When not in therapy she spends much of the day in a special wheelchair with head support. The doctors at Kessler feel that rest is an important part of the recovery process for brain injury patients so they limit therapy to three hours per day. Kerrie is often tired in the late afternoons and evenings and will be in a restful state during these times. She will open her eyes at times and will sometimes make eye contact but she will not do so on command.
Kerrie is more responsive in the mornings when she receives treatment and will open her eyes for most of the therapy sessions. Glenn will often be present during these sessions and he has seen her make slight improvements over the past weeks.
At this point Kerrie’s long term prognosis is still difficult for her doctors to predict. Kerrie’s case is extremely rare and very few people have survived what she has been through – actually the experts who have been advising us have never seen someone survive from the condition she had been in back in April. The experts at Kessler have signifiant experience treating traumatic brain injuries of all sorts and in helping patients emerge from comas. While we are told that the treatment is geared toward the patient’s “clinical presentation” (i.e. the physical signs and symptoms which help lead to a diagnosis) rather than the cause (i.e. the 5-FU toxicity), Kerrie’s case is highly unique and there are many unknowns and few if any comparable cases.
The bottom line is that we are still hopeful that she can make a full recovery but this is not guaranteed. Her timeline for recovery is also difficult to predict. We are hopeful that she can continue to recover and demonstrate enough improvement in the coming weeks to remain at Kessler in the coma emergence program and eventually transition to a more participatory physical therapy program as she emerges from her coma. If Kerrie’s improvement plateaus in the coming weeks we may need to transfer her from Kessler to a long term care facility to give her additional time to regain consciousness.
To date we have received incredible and humbling support from our friends and family, the community, coworkers and many generous people we haven’t even met. This moral, spiritual and tangible support has sustained us through very difficult times and made us realize what a wonderful and caring world this can be. At this time we ask that you continue to keep Kerrie and her family in your thoughts and prayers as we try to get her through this last phase of her recovery. She survived for a reason and has come too far to be held back from rejoining her family. She is a fighter and has shown incredible resiliency and we continue to be positive. Please keep her in your thoughts and prayers and send her strength.
We have continued to be active in advocating for Kerrie and we are regularly conferring with her doctors and other experts in the field of 5-FU toxicity. We are open to suggestions and advice from you or your network of friends and family – particularly those in the medical or research communities who may have experience with neurotoxicity, coma recovery, traumatic brain injury, neurology or experimental drug therapies. Please contact us if you have information or contacts that you think may be helpful.
Another way that you can help is to visit Kerrie at Kessler to encourage her in person. For those able and so inclined, Kessler’s visiting hours are 8AM – 8:30PM and visitors are welcome nearly all day except for certain times when Kerrie may be receiving treatment. Please note that most times Kerrie will have her eyes closed and will not recognize visitors or respond to commands or questions. This does not mean that she can’t hear you and understand what you are saying. There are so many “unkowns” with brain recovery and we should speak to her normally in hopes that she understands everything but lacks the ability to respond back to us. She does react though at times when she hears new voices and we feel that she makes contact in her own way at times with visitors. If you’d like more context before visiting please don’t hesitate to reach out to Jamie Prettitore (Glenn’s brother) at email@example.com and he will reach out to you to prepare you for your visit.
Thank you again for all of your love and support over the past several months. Words can’t express our gratitude.
Glenn wants everyone to know how truly thankful and and appreciative he is for all the support he has received. His hope is that he may be able to send thank you notes when the time is right and he is sorry that he has not yet been able to do this.
The Prettitore, Moore and Matteo Families