Our journey with Glioblastoma Multiforme began on April 4th, 2017, as most of you close to him know. Daniel had two bad headaches, along with some very temporary visual disturbances that happened, only twice, over a 3 week period prior to discovery. The second headache was so bad that he drove straight from work to the ER, which, if you know Daniel and how stubborn he is, we knew something was up.
As we sat there in the ER waiting, it never crossed our minds or prepared us for what we were to hear hours later. "We found a large mass on his CT scan, we need to do an MRI with contrast, he is being admitted".
Though our family and myself were extremely distraught and scared at that point in time, once Daniel got IV steroids (to bring down pressure and swelling in his brain) along with some pain medication, Daniel remained positive and adamant to kick this unknown things a**, never losing his spark/determination.
Before his biopsy and shunt placement (brain surgery) he was the one comforting me telling me that he would be okay and that everything will be fine right before he went back. We were all scared that we would possibly never see him again, being such a high risk procedure.
Even though by the looks of the MRI, we had already been informed by his wonderful neurosurgeon Dr. Zhu that it looked like a very high grade glioma, we still remained hopeful, especially Daniel.
On April 7th, Daniel underwent an approx 6 hr procedure where they biopsied a few different areas of the 4 by 4 cm mass, along with inserting a ventricular peritoneal shunt.
Due to the placement of his specific tumor, on the thalamus, part of the brainstem, his tumor was blocking normal CSF flow from the brain to the rest of the body, hence his headaches-he had terrible hydrocephaly. The shunt enables the CSF to pass through, around the tumor, and flow in a more natural fashion and can be there for up to 30 years.
Daniel woke up from his surgery (which went very smooth) at about 9 pm that night pretty doped from the anesthesia and pain medication but still adamant that he was "late for work" and that he had to "hurry up and get the hell out, to be on time" his wonderful nurses were laughing as were our family and I, that's our Daniel. He was pretty with it once everything wore off within a few hours. He remained very positive and hopeful, he had a wonderful hospital stay, from the nurses to the physicians, we will never forget how wonderful they all were.
He was discharged and we went home from norfolk general two days later on April 9th, when we got home he was so happy to see the kids and just to sleep in our own bed.
A few days later, April 12th we had an appointment with Dr. Zhu with sentara neurosurgery to discuss the results. As we were all very anxious to hear them, we all believed that they would come back benign and that it would be as simple as a another surgery to remove it.
That day was life changing as Dr. Zhu explained the results and the prognosis. He explained that it is grade 4 brain cancer and the worst and most agressive kind to have and that at some point this cancer will win, that there is no cure and that his tumor is inoperable due to where it is, unless there is shrinkage, which he explained was not impossible but highly unlikely. He explained that median survival is 18 months and that we needed to get our affairs in order for our family. He explained how sorry he was but that there was nothing he could do other than to offer us to try radiation and chemotherapy along with optune, which of course we said yes.
From there the next month or so was a whirlwind. A scramble, to still try to find some small ounce of hope and to get other opinions while he was being treated. I called all over and sent records and his images across the US to different highly sought after facilities to see if someone could give us an answer, a cure, something.
After receiving a phone call from Dr. Friedman himself at duke, he explained that it was inoperable as well, fear amongst many other feelings began to set in.
We decided to get married on a Friday and the following Thursday, april 27th, we were husband and wife. An entire wedding was thrown together in less than 6 days, it was perfect and beautiful and something that we will never forget. We will never forget how our friends and family came together to make that happen for us, and how wonderful it was, and how Daniel and I could focus soley on love and friendship that evening. It was a true labor of love and a gift that is still overwhelming and unreciprocable (if that's a word). We will never forget it.
Daniel completed 30 days of radiation at vb general and concurrent oral chemo, he tolerated it all very well, only tired, and very slightly sick throughout.
Once he completed radiation, on june 21st we had our first appointment with Dr. Dina randazzo, our amazing Neuro oncologist at duke brain tumor center, we had his repeat scan in hand for her to review, again we were hoping for some shrinkage and good news. Dr. Randazzo reviewed it with us and said that it was too soon to tell if there was shrinkage and that she would know more at the next scan. She reiterated that it was inoperable and also informed us that the optune would have no effect on his tumor because it's in the middle of his brain. She recommended for daniel to do 3 cycles of 5 day temodar (oral chemo) as this is the standard of care for gbm's. So, 5 days of temodar, 23 days off.
He made it through two cycles (two months). In July he started having double vision, by August it was worse.
Daniel can look side to side but not up or down, due to muscular deficits. On August 17th he had a repeat MRI and we had a return visit to duke to see Dr. Randazzo. She informed us that it had grown by 30%, and that she is changing his plan of care, due to progression and obvious no response to chemo/radiation. The new plan of care is a new intravenous chemo med CPT 11 and an additional intravenous med avastin that is supposed to cut off the blood supply to this very vascular tumor. She explains he will go every two weeks for about 4 hours to get the IV treatments.
And here we sit, with Dr. Cross's amazing nurse Barbara every two weeks for a few hours. Praying that this avastin shrinks it and helps his vision correct itself, as the neuro-ophthalmologist can't do anything for him.
As anyone would with a prognosis as this, Daniel is having a very hard time coping with this unwanted/unwelcomed evil. He has been angry and has isolated himself since we were given the prognosis on April 12th, understandably, but now he is less angry and more sad, but being more open, coming downstairs more.
He is being overseen by a Neuro psych Dr. Vashnaivi at duke for his mental health, he has tried therapy but says it's not for him.
What makes Daniel the happiest is to be around his close loved ones (good friends and family) and to eat good (unhealthy) food. Also, watching ESPN.
He is pretty weak and off balance, and gets out of breath from taking a shower, his memory is a little dusty, he needs help with almost everything (but rarely accepts it). And this is where we are at now, on this road.
We don't know what the future holds, but we do know that these days, Time is precious. His next treatment is September 28th, then again on October 12th. We go back for a repeat MRI on October 18th and also the same day to duke to see Dr. Randazzo.
I will do my very best to keep everyone that loves Daniel updated and informed on what's going on through this platform. All I ask now from all of you, is to be strong for Daniel like he would be for any of us, and to support him and show up when you can and bring some laughs.
Please feel free to come by the house and visit anytime, the door is always open. You can text me or call me at 757 755 6448.