Sunday, November 16, 2008

Always with us dear wife..

There are so many things I want to say my dear love. First of all it has been so difficult without you. Sometimes I feel in denial that you have passed and talk about my wife as if you are right by my side. I feel my heart is broken and I have lost the other half of me. I found that “diary” that you always treasured and never knew what was in it. When I was moving things I found it in your drawer and didn’t know it was a love diary that documented everything since we first met. You had all the dates from our first email, first time I said we have a future, first phone call, etc.. you were so organized it blew my mind.. We both knew that we found the perfect “one” from early in our courtship and if the concept of soul mates existed we found each other.. maybe we will meet again in another time. I learned so many things that you never shared with me and it is now one of the most priceless gifts in your departure. Every night, our daughter kisses your picture, prays together, and kisses your picture in the morning when she gets up. She will always know who her mother is because there is no one in this world who can replace you.

To all the family and friends who read this I have received so many emails and questions about what happened to Cheryl. On behalf of Cheryl and I, we want you to know that Cheryl didn’t want you to worry about her or feel any pain or anguish. For those who knew her well, she always thought of others first even above herself. I remember in the hospital she would ask us if we were hungry and if we wanted for her to cook something when she couldn’t even get out of the bed. I know she wants to communicate to all of you not to take the news as a measure of closeness but to help preserve the good times you shared with her. One of her wishes was to use discretion on who were informed and as daunting of a task it was… we had to respect her wishes. This is the best way to tell you all what happened without explaining it individually..

This is 16 months of our battle against brain cancer abbreviated…………. Sorry for being long but I took it from all her documented medical notes that I put in a journal along the way….
Cheryl started having headaches and nausea in her middle stages of pregnancy. We frequently went to our OBGYN appointments and they suspected she had sinus headaches. The unfortunate thing is that many of the symptoms of brain cancer are also masked in pregnancy (headaches, nausea, imbalance of equilibrium, etc..) Early June 2007, we went to visit San Diego to attend her niece Kendal’s birthday party. Cheryl started feeling severely ill with sensitivity to light and complained of extreme headaches. I immediately took her to a local neurologist in Hemet because she was symptomatic of migraine headaches. The neurologist told us to take her to ER immediately and she was admitted to a local facility Hemet Valley Medical Center on June 15th 2007. She was monitored by the maternity department and the neurologist performed a lumbar tap which indicated that her spinal fluid was contaminated. They suspected that she had bacterial meningitis and treated her with antibiotics until an infection specialist assesses her condition. Unfortunately, they were reluctant to perform an MRI because she was pregnant and the contrast / iodine may impact the development of the fetus. After the infection specialist determined she didn’t have meningitis they performed an MRI without contrast to discover a 6.5 cm x 3 cm lesion in the corpus collosum region of her brain (midline splitting the two hemispheres). We had to be transferred to the nearest facility that had a neurosurgery department. They attempted Loma Linda but 2-3 days went by and they couldn’t get her in and kept saying the reason why is that they have not discharged anyone. It was unacceptable and I couldn’t fathom that it would take that long to open beds at Loma Linda so I drove over there and had a discussion with the manager of admissions. I told them that while I was waiting to meet them and I witnessed at least a dozen people discharged and cleared up the misinformation from Hemet Valley Medical Center that she required an isolation bed. She was transferred immediately and the neuro department conducted an MRS (fine layering spectro versus MRI). The imaging indicated that she may have a brain abscess, possible benign brain tumor, and / or chance of brain cancer. They scheduled for a biopsy immediately for July 2nd. We were concerned about the baby and they assured us that NICU / maternity will monitoring her at all times. They performed a biopsy / craniotomy and preliminary pathology results indicated that she had either lymphoma (lower grade of brain cancer) or glioblastoma multiforme (stage IV highly malignant and most lethal form of brain cancer). They performed a partial resect / debulking of the tumor gearing towards suspected lymphoma with radiation and chemo to follow. The surgery went well and Cheryl was in post operation with restricted access.

The next morning I was informed that our daughter’s heart rate was dropping and was there while they performed an emergency C-section. Our daughter Cevan was born two months / 7 ½ months premature on July 3rd at 3 lbs. 2 ounces. On July 5th we received the bad news that pathology came back with GBM IV and they have to perform a second craniotomy or she would have an extremely short prognosis. They performed the second surgery with success and 90% debulking of the tumor mass. Although, we found out afterwards that the anesthesiologist made a “mistake” and accidentally punctured Cheryl’s lungs when administering the central line. I was extremely upset at the hospital for this mistake and told them she has gone through enough already. While Cheryl was in recovery I lived in that hospital going back and forth for 6 weeks between her and our daughter. Cheryl and I had a conversation and I asked her “what do you want to do from here? She asked me where I wanted to go and I told her back to our home in Northern California under the care of UCSF or Stanford. Cheryl wanted to be with her family so we vacated our new home in Northern California and my career transitioned to becoming dedicated to giving her more days in this world to spend with us. She underwent conventional radiation therapy in tandem with a specialized and calibrated proton radiation beams at Loma Linda for 6 weeks. Meanwhile, I had a meeting with the head of the oncology department to talk about her chemotherapy planning. He told me that the conventional approach was 6 weeks radiation and Temador which is the only FDA chemo drug approved for brain cancer. We had a dispute about their method of therapy because I was concerned about only one option for treatment. What happens if it doesn’t work? I informed them that I have done research on clinical trials and experimental therapies. He argued that they are only “experimental” and you take the risk of unknown side effects. I closed our discussion with if the Temador doesn’t work, what do we have to lose?… and told him that we will be transferring her oncology to a “neuro-oncologist”/ specialists from this point.

I am just adding this in to this post: For those who were wondering the causal factors of brain cancer, the answer is that there is no proven cause. It is all theoretical at this point... Scientists and doctors believe that it could be 1.) Genetic predisposition or chromosomal abnormality (missing lines 4 and line 11 in the DNA sequence strain if I recall correctly) which makes you more susceptible to getting the disease. 2.) Exposure to EMF (Electro Magnetic Fields) such as telephone poles, cell phones, etc.. 3.) Exposure to toxicity - pesticides, artificial sugars (aspartame), etc.. The truth is there is no factual or proven cause that links the origin of this disease. A good example is when we are at the hospital we had a neighbor who was a 28 year old male. He was a triathlete who ran several miles a day, healthy diet, no genetic history, no cell phones, etc.. and had the same condition as Cheryl. He passed earlier on this year and our hearts go out to his family. There are ongoing research studies to help find some type of correlation but the cure lies within the cause. The average person afflicted by this disease is 54 male (i can't remember the exact age but around that) although the neurooncologists I spoke with said that it seems like they are seeing younger and younger patients.

I researched every alternative experimental therapy available for GBM IV and contacted every noteworthy brain tumor center in the country. The top neurooncologist and neurosurgeons helped narrow our options to Avastin (FDA approved for lung, colon, and recently breast cancer. It is an angiogenesis inhibitor administered intravenously that restricts blood supply / nutrients to the tumor) and dendritic cell immunotherapy (non-toxic form of treatment utilizing the patient’s own immune system early adolescent cells to target tumor lysate / cells)
These treatments exhibited low risk factors and high success rates in their earlier phases of clinical trials and were attractive since they were non-toxic (opposed to chemo) forms of treatment. As a prerequisite, they just required a frozen tissue sample that was immediately extracted during surgery and placed in a controlled environment. To our dismay, the head of pathology was on vacation and his residents were responsible for archiving the tumor sample. We discovered that they paraphin blocked (waxed slides) the residual tumor vs. freezing the tissue which is standard protocol. Without that sample, it eliminated our eligibility to many clinical trials since they will not have sufficient biomarkers (trace tumor type and efficacy). It dawned on us, whats next? We never gave up and I developed a contingency planning mentality that doesn’t hit any roadblocks since timing is of the essence. After 3 months, Cheryl completed the cycle of radiation and was on Temador but the first MRI showed that her tumor grew back by 50%. (I was so tempted to take the MRI back to that department head of oncology and tell him that he has other people’s lives in his hands and its time to change his perspective) Our last resort was to put a request into our medical insurance to approve an experimental / non FDA approved treatment with the Avastin regimen. It was a 50/50 shot but I already planned for contingencies including contacting the manufacturer of Avastin (Genentech) to qualify for financially assisted programs, insurance appeal process and turnaround time, etc.. since the treatment is ridiculously expensive and can devastate families financial disposition but there is no price on giving my wife more time on this world. Fortunately, we already transferred Cheryl’s care to Cedars Sinai (as many of you know is one of the best facilities in the country) and the clinic handled everything with immediate turnaround and got us approved immediately to start Avastin the following Monday. I have to say that these two neurooncologist doctors gave me a newfound respect for the medical profession for their compassion, devotion, and brilliance in treating the disease. I became very close to one of them and he became like another uncle and I wish every doctor was like them. We drove to Cedars Sinai practically every week for 2-3 days from San Jacinto for anything from her IV Avastin + CPT-11 infusion, neurooncology appointments, and MRI’s. In addition, I started running discussion forums in the brain cancer community on alternative treatments including homeopathic, holistic, and organic dietary protocols as a complimentary regimen to Avastin. I started researching causal factors of brain cancer and theoretical approaches to modify our regimen with a more sophisticated multi-faceted approach. After the first 6 weeks, Cheryl’s tumor shrunk by 80%.... After 3 months it shrunk by 95% with the doctors claiming that this is one of the best responses every seen to the treatment (even the manufacturer of Avastin / Genentech asked for a testimonial). We were so excited and started planning for Cevan’s Christening (baby’s 1st bday) and anticipating that the next MRI will show a clean scan with no tumor.
One month passed and her next MRI showed that the tumor mass stagnated with no changes. The subsequent month she started developing all the side effects to the chemo portion of her treatment (Avastin is coupled with CPT-11 as chemotherapy since Avastin alone is not very effective). We noticed a steady decline in her condition over a 4 week span and were in and out of the hospitals. We went Cedars Sinai where they performed our monthly MRI which showed that the tumor progressed again. I remember the doctors explaining to me that tumors are extremely sophisticated. He provided an analogy that they know when they are being attacked and create a channel with a pump system to pump out the chemo. One of the hardest things to deal with is when the doctors were trying to explain to her that there isn’t much they can do at that point and her response was, “don’t worry doctors.. I know my husband will make me better and take care of me” To this day it hurts to remember that day.

The doctors did a final blast of radiation known as salvage therapy to help with palliative treatment (decrease side effects of the tumor to make her comfortable) and still were willing to continue Avastin only (no chemo since she could no longer tolerate it) as a shot in the dark to decrease progression of the tumor. At this time, we were noticing cognitive dysfunctions and increased intracranial pressure caused by the tumor. We were given a short prognosis and I took this opportunity to invite her family and friends to see Cheryl at Cedars Sinai in her best light before any further development of her condition. We cancelled the Christening in San Diego and the family came to the hospital instead I lived at Cedars Sinai for 6 weeks straight 24/7 as well as 4 other hospitals over 5 dispersed months of inpatient hospitalization stays. We were discharged since medical insurance needed an acute reason to retain her at the facility and decided that she required 24 hour skilled nursing supervision due to her frequent infections (she was immuno-deficient or compromised) and constant need to be monitored. After a relentless battle with trying to get her into a skilled nursing facility after several denials, we got her into Devonshire Care Center in Hemet (after second reconsideration) to keep her across the street from a hospital and be close to both her mother and father. I disputed with the insurance and other doctors to keep her off of hospice with the glimmer of hope to continue her treatments and miraculously reverse the disease. The last time she spoke was the third week of August. I told her that her brother had a baby boy and she was so happy. We talked about our daughter and how Cheryl was feeling. Everyday since I waited by her side in hopes that I could just talk to her one last time. Her condition took its course with rapid deceleration and she went back and forth from Hemet Valley Hospital until the morning of Sunday November 2nd (all souls day for the religious). I was informed that her vitals were declining into low levels. As the hours went by, I watched her blood pressure drop, heart rate slow, and breathing decrease into a gradual passing at 9a.m. The charge nurse at the hospital said that she worked for hospice as her prior job and that with all the transitions of life she witnessed she said it was a very peaceful one for Cheryl. She wasn’t in pain or seem like she was suffering at time. She surpassed her time of prognosis given to us and had her extra time to spend with us. I was right by your side my love until your last breath and the last beat of your heart.

On behalf of Cheryl, Cevan, and I we would like to express all our gratitude to our parents, siblings (which includes my frat brothers and best friends), cousins, aunty’s and uncle’s, and dear friends for their support in those difficult times. Just to let you know that we heard all of your prayers, received all your emails and voicemails, kept all your cards, and knew that even though some may have been far away you were always there with us. Cheryl, my love, know that the same devotion that I gave to you will always be there and will be with our daughter as she grows up in this world. I will honor every promise made in those talks we have had about the future. Almost every day I prayed that I can take your place to take away your suffering and if it was possible I would have made that ultimate sacrifice without hesitation. As difficult the hardships, I will do it over and over again just to be by your side. You are now in a better place and in peace with God. For I know that you are smiling down on us from heaven and will be celebrating living your life through all of us…….. for an eternity….

1 comment:

ryan said...

Evan, what a great blog.