Honor Allen this holiday season with a contribution to CaringBridge. Help us reach our $1 million fundraising goal by Dec. 31. Make your year-end donation now.
Welcome to our CaringBridge website. We've created it to keep friends and family updated about Allen's progress. Get started by reading the introduction to our website, My Story.
PLEASE NOTE: The donations function is NOT for donations to the Parkes family. It is for donations to the nonprofit organization that makes these sites available.
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.
Most of us in life may never experience what I would refer to as an "out of body" experience. Perhaps a few spiritual leaders in history have achieved this via higher discipline of cognition and purpose. Unfortunately, this experience can more likely result from near death, confusion, and fear. In my efforts to understand the events of this past week, I realize that I have been faced with no less than 3 "out of body" experiences. Monday I was struck by a seizure while driving only blocks from my house after a morning at work. Without unnecessary detail this most certainly was the first such experience. Soon after came an ambulance and hospital experience which included simple questions for which I had all the answers but was unable to verbalize. As a result of this disconnection, confusion and subsequent frustration, I found myself for the second time in two days seemingly observing the situation from afar. Not an experience I have begun to comprehend.
Most recently my wife Andrea and I attended a meeting to discuss pathology results and treatment options. This perhaps was the most surreal and upsetting experience for me for the very reason that my wife herself experienced the same sensation. Together we seemed to be completely separated from ourselves, looking down and unable to comprehend the data. I still cannot explain this, and maybe never will be able to. The pathology report revealed Stage IV, Glioblastoma, an aggressive form of brain cancer. The prognosis we were given is perhaps what sent us out of body. I can tell you it was not what we wanted to hear, but we were informed it is simply an estimation and not an accurate number. We have a treatment plan and are looking at all clinical study alternatives as well. We will remain positive and vigilant for the sake of Ethan and Brandon. I will continue to give updates and insights as I can.
Well, it's been quite sometime since Allen or I updated Caring Bridge. Life with cancer has not been an easy one for us and if we mentioned ALL the details of what has happened over the past few months this would be one hell of a long journal entry! (Yes, much longer than it is). So let us start by summarizing in a shorter format to bring you up-to-date...... Here it goes:
1) May 20th was the "Dinner With The Parkes" fundraiser organized by our wonderful friend Debbie.... thanks again Debs! It was great to see so many people that mean so much to us; some of which we hadn't seen in quite awhile. Thank you for all your continued love and support!
2). In the beginning of June Allen went through a second round of radiation. It was a short, but high dose of radiation to his tumor site. Although he had already received his lifetime dose, we (including his Drs) felt it was worth the risk to see if his tumor would shrink.......well not so much......growth instead!
3). So Allen started a protocol of chemo (Irinotican), Cometriq (XL184) and Afinitor (Everolimus). According to the genetic mutations from Allen's tumor tissue, this combo may have a chance of shrinking the tumor. Cha ching, we found a winner!! In 5 weeks time his tumor shrunk about 50%!! But.....
4) We found the new combo was shrinking his tumor when they did an MRI while he was in the hospital for a pretty bad case of pneumonia. Not so good......lots of hospital time, lots of antibiotics, lots of PT to help him regain baseline strength and worse of all, his special cocktail to help his cancer put on hold.
5) Middle of August, after Allen's 9 days in the hospital and recovery from pneumonia we slowly started adding back in his previous cocktail of medication. End of August MRI shows us the tumor is relatively unchanged, still down about 50%! In the world of Glioblastoma and being off any protocol for a few weeks, makes this extremely good news!
6) Sept 9th lands us back in the hospital, but again not something that is directly related to Allen's Glioblastoma. After a few scans, lots of blood tests, and many different Drs, they found Allen had a grapefruit size hematoma (bleeding) near the tail of the pancreas. Drs did an angiogram and embolized the arteries that were actively bleeding. He also ended up having a blood transfusion because his hemoglobin was very low. The Drs believe they stopped the active bleeding which is not always 100% when doing the procedure. With the scans they also found a spot on the tail of the pancreas which might have something to do with the cause of the bleed. But more on that later. Allen's blood levels leveled out, pain subsided, all the signs he was ready to go home a week later. Yeah! We can go back on the medication that has significantly helped with his tumor!!
7). Not so fast.... Allen was home for not even 24 hrs and back in the hospital with a UTI.
This brings us to the present. As it stands this morning, Allen is schd to come home today (9/22) from the hospital. In a few weeks GI is going to perform an endoscopic ultrasound to determine what the spot is at the tail of his pancreas. But they need to be sure there is no active bleeding when this is done and his body has absorbed some of the existing blood. Surgical GI is leaning towards a cyst, but no guarantees until the scope is done.
Sending our love, gratitude, and appreciation to our wonderful family, friends, neighbors, and doctors! This journey wouldn't be possible without you!