NorthWest Biotherapeutics Inc (NWBO)

[Lykiri]

Matt Henkel
April 9, 2021

Matt here.... I hope everyone had a great Easter with family. It has been awhile since my last update. In this time, I have met with my Neurosurgeon,Dr. liau, and also my neuro-oncologist, Dr. Cloughesy, both at UCLA. I set up appts with both, as I wanted to have the benefit of hearing my situation and having a plan moving forward.
The plan: I have pulled out of the clinical Trial I was participating in. I did so Because while in it, I received all 3 dcvaxx shots and was left to wonder if I was also getting the trial drug, keytruda , or a placebo.today, I couldn’t tell you either way. Extreme fatigue and cognitive fog is what is hampering me right now, which can easily be attributed to the start of Avastin infusions. What’s Coming up....
2nd round of Avastin on the 15th. Back to UCLA on the 19th with my sister, Sarah, and our niece, Lauren Tarr. I’m looking forward to spending time with both of them. I will return home to hospice and Avastin infusions every other week. The Avastin is being offered Palliatively, so It is allowed on hospice . I’m hoping I am allowed to monitor the tumor with mri and if some treatment becomes available while I am still around, I can explore it, snd make hospice wait on me again. Thank you all for the continued thoughts and prayers as our family continues down this dark and unknown path.
All my love - Matt

Cammie Henkel
April 24, 2021

I saw this quote today and it spoke to me. Joy and Sorrow are never separated. When we are overwhelmed with grief we discover what true friendship is all about. If we try to avoid sorrow, we may never taste joy.
When I use the word grief it doesn’t have to mean a loved one dying. My family has been grieving for a year because a year ago my kids lost the experiences in life with their Dad. Matt is here with us but Brain Cancer is not easy to see. The brain controls all and losing functions of the brain big or small has terrible side effects. Matt lives a complex life because he is unable to do all the things he loves but wants so badly to do them which leads to overwhelming emotions.
Many have asked why Matt pulled out of the trial in California and there isn’t one reason but many little reasons. He received the most important part and the traveling became exhausting for him. The painful reality of it is his brain has been cut more times than a lot of people on this earth which leaves for many deficits.
With the help of so many great family and friends I was able to work most of the year. Today was my last day at school as I have taken FMLA and cut my year short. My sweet kiddos showered me with love and I am blessed to have a great substitute filling in. I will spend my days focused on my family and Matt. Thanks to some great people and the help of my Dad we will be trying to enjoy every little second together next week on a beach in Florida. Hoping the memories of this trip will give us the energy and positivity we need to continue this battle. With my leave from school and the focus on my family and the request of our teenagers I will be signing off for a couple months to be more in the moment. I know you all are invested in this journey and I appreciate that so much so please reach out through text anytime to check in on Matt. Sending you all giant hugs.

Cammie Henkel
May 19, 2021

Matt's 13 year battle with brain cancer has come to an end. He died peacefully at home surrounded by family a short time ago. For the sake of our 3 kids we would appreciate some time to grieve privately. Please pray for healing for me, the kids, and our extended families. Thank you for coming on this ride with us .