Abra, 27 year old double cancer diag...
...needs your help. I am currently battling a brain and spinal fluid diagnosis..stages 3 and 4. In June 2012, I started to lose vision in my right eye. I saw an eye doctor locally who said it was a swelling in my optic nerve which could be caused by many things. The doctor recommended I see someone who knows a little more about the issue that I was having, so they sent me to Pacific Cataract and Laser Institute in Centralia. The doctor said pretty much the same thing - optic nerve swelling, could be Multiple Sclerosis, could be a tumor, could be nothing...and then referred me to a neurophthalmologist in Seattle for further testing.
I saw the specialist in early July, did an MRI, and found a mass on my optic nerve. The doctor aid it was a tumor, but that it was definitely, *DEFINITELY* benign (meaning non-cancerous). The doctor was so sure that it was not cancer that he decided to just treat me himself with at-home steroid injections (which had no effect), and after seeing him again 3 weeks later, I did another MRI which showed that the tumor had grown, my vision had worsened, and this delayed my treatments by about 3 weeks. I was then referred to a neurosurgeon at the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment. The neurosurgeon I saw ordered another MRI, and although he also agreed the tumor was benign, because of my worsening vision, he suggested we do an open craniotomy to biopsy the tumor. At this point I was also informed that the tumor is inoperable so they can't remove it, but they would need to take a piece to test to just MAKE SURE it wasn't cancer. I go and see the neurosurgeon, set up my surgery date, and wait. By this point, my right eye had gone completely blind and I was told there was no way that the damage could be reversed.
On August 3, 2012 I underwent the surgery and biopsy...and that benign tumor they were SO sure was benign ended up being malignant (cancerous).
I was diagnosed with a stage III (stage IV is the absolute worst, most aggressive form) astrocytoma. Primary brain cancer. Specifically, a glioma which is a nerve tumor. Because of the location, my left eye will likely also go completely blind if we can't stop the growth of the tumor. I just had an MRI about a week ago and it has grown by 40% within a month.
We are putting chemotherapy and radiation on hold right now. I am in Texas currently until September 26th doing this alternative, non-toxic treatment before I do anything else that will make me sick and make my hair fall out and possibly not solve the problem at all. The worst case scenario right now is nothing happens at all, and I will continue with another form of treatment. A lot of people who die from cancer die from the effects of radiation, not the cancer itself. Also, if I do radiation, the doctor said because of where the tumor is located, it will destroy my pituitary gland, I will not be able to have children, I will go into menopause and I will definitely lose my other eye. I want to try and prevent these problems if at all possible, hence why I am taking this route in the first place.
Thank you for taking the time to read this and thank you for any help you can provide.
Here is another story provided from my grandfather:
"My 26 year old grand daughter was recently (within the past few months) diagnosed with an inoperable stage III (possibly IV) malignant astrocytoma located on her optic nerve and it growing into the optic chasm. Within approximately a month, MRI's showed that the tumor had grown by 40%. It is extremely aggressive; The first sign that Abra experienced was loss of sight in her right eye....she went blind. The tumor's growing very quickly and my daughter, thru her employer, borrowed money to begin treatment with Dr Burzynski in Houston. She's there now and is scheduled to leave on the 26th to return home to Washington State. Abra's sight in her good eye is now getting worse. A major problem with Burzynski is the cost and unless you're wealthy you're prevented from completing, much less starting, his treatments so we're interested in trying to get as much assistance from any outside source we can possibly accumulate. She will need to be on treatments continuously for at least a year, and these treatments will cost on average about $7,600 per month. Any and all help is greatly appreciated"
They say the hard part is over, but right now, it sure doesn't feel that way.
Abra is survived by myself and her brother, Colin, and her step-siblings, Austin, Annie and Gracie. Also, Abra's awesome stepmother, Mary and Mary's husband Peter, my incredible friend, Roby, and my partner, Tommy. People who were all with me during the final days and moments of Abra's life.
Abra wanted to be cremated. I am trying to plan a Celebration of Life for her on what would have been her 28th birthday, August 11, 2014. One of her friends has set up another GoFundMe page to assist with Abra's final expenses . . . because
I still have paid only a small portion of the debt I incurred taking her to The Burzynski Clinic for a useless treatment, which was the reason for this page. And while that was a huge mistake, at least I have the peace of mind of knowing I did everything in my power to save her and keep her with us for as long as she was able to stay.
I knew my daughter was special, but had no idea how very loved and admired she was. They are expecting a huge crowd for her memorial and her wonderful, loving friends are right now securing a venue large enough.
I just came back to work today. Not sure how that's going to be, but they need me here and gave me so much time off while she was alive - when it mattered - that I feel obligated to at least try.
I want to thank all who have continued to offer their love, concern and support, and for those who are still trying to stop Dr. Stanislaw Burzynski from doing to anyone else what he did to us.
Thanks for everything.
Abra's other GoFundMe page can be found here:
Once Abra had been home a few weeks, her condition seemed to stabilize and, for the most part, she did well . . . or as well as can be expected for someone in her condition. What I was finding was that it was so much work for me, there is no way I could continue to do it long term. Her paid caregiver was only allowed a certain number of hours per month, I didn't want to take advantage of the kindness and generosity of my best friend by expecting her to be there too often, Abra's brother had to go back to work and her step mother, the few times I asked, was not available. This left me to do the majority of the care by myself, and it was round-the-clock. No weekends off. No holidays. And I had to arrange for help if I wanted to do anything for myself or with my partner outside the home.
The six weeks came and went and, thank God, Abra's condition has continued to remain stable. I now was faced with returning to work full-time. My employer has been above and beyond supportive of me throughout this ordeal that began with Abra's diagnosis back in August of 2012. I absolutely HAD to get back to full-time work and hospice doesn't provide enough support at home to enable me to do this. Sadly, there was only one option. Abra would have to go to the SNF I had originally intended to keep her out of.
This was the hardest decision of my life, and it was met with much resistance on Abra's part (and understandably so). However, I saw no other option. Whatever the alternative, the most important thing was to have her somewhere where she would be safe and attended by a person or people who were capable of meeting her many needs at all times.
Abra is now on her tenth day in the SNF and she is not happy there. I feel extremely guilty and sad about this choice I had to make. My goal is to decorate her space even better than home so she feels comfortable. There are definite pluses to being there over being home. For instance, Abra LOVES visitors and can now have them whenever she feels up to it. This was NOT the case in my home. In fact, it was the source of a lot of tension between us. She can even have to occasional overnight guest. Someone has donated a futon to Abra and as soon as I can arrange to have it moved for her, she'll have a place for her frequent friends to sit, or even crash, when they come to visit.
Apparently, the food is very bad. I've heard this confirmed by every single resident that I've spoken to. In fact, it's kind of a joke among residents. I'm looking into a mini fridge and a microwave so I can stock her room with soups, noodles and other canned and packaged foods that she can fix herself. Plus, we can put some fresh stuff and/or leftovers in a mini fridge. We just need the funds to do so.
The SNF takes residents on outings and field trips but you need and electric wheelchair to participate. Since Abra is on hospice, the insurance will not buy her an electric wheelchair. We found one in fairly decent condition for $150 that needs new batteries and a charging cord I found on EBay for $19.99 plus shipping costs. You have to replace two batteries when they go dead. I found a deal online for two online for $149, which this includes the shipping. Once we get these installed, Abra will be able to go out on nice days and buzz around town. I think it will make her feel good to get out of the place when she wants to.
As far as Abra's continued health status, we just don't know. Swedish doctors said this will be a "day to day" experience and that she could experience anything from a sudden rupture of the tumor blood supply causing a brain bleed that would result in a coma; to a slow shut down of the major organs.
I spent the day with Abra yesterday for Mother's Day and noticed that she has severe edema in her feet and lower legs. She was also having issues with pain because she was refusing her pain meds saying they made her nauseous. This is because the SNF staff had her on the wrong meds. I think I got the medication issues straightened out with the nursing supervisor today.
I ask that you all just keep praying for a miracle recovery and/or no suffering and that Abra adjusts well to her new living situation and is happy with it.
If you feel comfortable doing so, please share this page on Facebook and get the word out.
Thanks for caring and taking the time to follow up on her story.
Abra began experiencing difficulty walking and was falling frequently by late January. She was also having leg tremors and pain and low back pain, in addition to some other problems. Her appointment with the Ivy Brain Tumor Center at Swedish in Seattle was rescheduled to a sooner date, as they were very concerned about the rapid change in Abra's condition. The day before the appointment she fell and hit her head so hard she had to go to the ER for stiches. When we arrived at the appointment, Abra began experiencing a sort of panic attack and was unable to participate in her MRI (which would have taken over three hours). She was in severe distress and ended up being admitted to the hospital then and there. They later did the MRI under anesthesia. The results that came back were devastating.
Basically, the doctors said that the Leptomenengial Carcinomatosis had progressed at an unbelievably rapid pace and her spine was covered in inoperable tumors that were compressing the spinal cord. This explained the leg and back pain, twitching, falling and other problems. Apparently, the tumor in the brain itself was growing again as well. Sadly, the doctors and social workers pulled together to meet with us and told us there is nothing more they can do medically to help Abra and it was time for hospice. The prediction for her life expectancy was 1 to 6 weeks as of March 8, 2014.
The Swedish team began making arrangements on their end right away, but told me it would take several days. All in all, Abra was in the hospital in Seattle for about 10 days. In the meantime, I had a few days to decide where Abra was to go from Swedish. Would we send her to a skilled nursing facility (SNF), or try to care for her at home? Initially, all my family and friends suggested a SNF. Although I was in shock and experiencing grief, I had to make the best decision for Abra. I sought answers everywhere I could. I did internet research. The Swedish social worker gave me a very small list of SNFs in our area. Several of these were crossed off by me immediately due to their horrible reputations. A few of them I called said they had no openings, or they actually did not take hospice patients. This left two to choose from. One was full and my partner and I toured the only choice we felt was available.
After the SNF "tour," I left in tears. I didn't feel it was appropriate for a young girl (especially MY daughter) to spend the last weeks of her life in a place like that. Suddenly, a SNF didn't seem like an option and I had to switch gears and see if it was possible to muster the resources to do hospice at home, which I knew nothing about. I called Swedish to let them know I had changed my mind and wanted to bring Abra home, not having any idea what was involved. The Swedish staff quickly made the arrangements for home hospice. I had commitments from Abra's friend and paid caregiver, my best friend, and Abra's stepmother (an RN who lived north of Tacoma) to assist me in caring for Abra at home. Abra's brother also took six weeks of unpaid leave of absence from his work to help us out.
By now, Abra was unable to walk at all. She had (semi) walked into the hospital on February 27th (we had to bring a wheelchair because of the falls and because she couldn't walk long distances without help) and she was paraplegic by the time she was sent home on March 8th. For anyone who hasn't experience hospice, it was all a learning experience for us all. As it turned out, Abra's stepmother really wasn't able to help. She lives a 90 minute commute one way from us AND she has 9 children and commutes to Seattle for work. God bless her for offering, but the commitment was too much for her with what she already had on her plate.
Once we got Abra home, it became apparent that taking care of a paraplegic is so much more daunting than could ever be imagined. And home hospice doesn't provide nearly the support that is needed to care for a loved one in the condition Abra was in. They don't provide any kind of nursing care at all, except for the twice weekly visits of the Hospice Nurse following the case, where about 30 minutes is spent talking about how things are going. Hospice provides a bathing aide a few times a week, a social worker (who I saw 2 or 3 times in 2 months), a chaplain, prescription medications, supplies and equipment (like a hospital bed, commode, oxygen tank, and eventually, a Hoyer lift). That's it. The Hoyer lift allows one person to move her from place to place, but it is large, awkward and cumbersome. And it takes time so if someone has to go to the bathroom quickly, for instance, forget it.
IF Abra were able to walk and do some things for herself, it would be totally different. However, that was not the case, and it was easy to see once we started actually doing it. Transferring her from bed to wheelchair, wheelchair to commode to chair, etc. was impossible for one person to do. The first few days she was home, her caregiver and I had to set her down on the floor rather quickly, rather than drop her, because it was apparent that the transfer was not going to be successful. I even had to call 911 once to come pick her up off the floor. Once we got the Hoyer, it enable one person to care for her alone, but it was very time consuming.
STORY TO BE CONTINUED~~~~~~~~~~~~~~~~
Abra reading this brought tears to my eyes. The world would be sad here without you so I pray for you daily and I pray for you to have the strength u need to be a survivor and get through this. Your a beautiful young woman and I am blessed to know you. I will continue to pray that you can make it past this all and that we can continue to see the beauty from you daily. I enjoy seeing your posts and pics all the time. I would love to make a date to bring baby to see you. We love you!! xoxoxo
I so far sent 79.50 to your paypal the next show I have is September 6th.......luvz
well small start but I made 38 dallors so far. I want to help more and I will
Abra, we are praying for you! I have shared this site with many people. I sell jewelry for premier designs. I plan to help so I have let both my churches here in vancouver know that my jewelry shows will help fund you. My first show is july 20th at round table pizza in salmon creek vancouver. We love you and hope to help!
hey abra...just wanted to leave a comment wishing you the best =) better late then never right?
Abra, I had no idea....I just saw all of this and read once I was invited to it. We don't know each other that well but we went to the same highschool. I am praying for you strength during this time and do know that God will heal you! I am keeping you in my prayers darlin and will be posting this on my facebook page right now. xoxo Please let me know if there is anything else I can do for you. Fight it girlfriend!!! Many blessings, Alicia Gonzales
Abra, I don't know you directly, but Terry and Bre are my dear friends. I donated last night to help with your treatment. It wasn't much, but it was something and I am going to post the crap out of Facebook with this page.
You got this Abra, kick it in the ass and stay strong we are all praying for you!
The benefit concert that I am personally putting on is on November 3rd so anyone that can come please do, all the door money (and any extra donated) goes to Abra's cause and 20% of all food sales. The event is has a page on Facebook at https://www.facebook.com/events/480294875344371/ any bands that want to play please contact me (Leon House) on Facebook or Abra.
Take care Abra my prayers are with you.
I'm sorry that I spilled beer on your school book that one time. Hoping any little thing will cheer you up! You can beat this thing! Just stay positive and know that we're all here for you.
Be strong!You are loved,and you will get through this as a winner!
Hey Abra, I wish you the best of luck. Stay strong and keep ur head up. I will do what I can to help
HUGS TO YOU BB!
HUH ... THAT WAS A LAME COMMENT I LEFT V V V DOWN THERE... WAS TRYING TO SAY I GOT FAITH IN YOU ...I HEART YOU !!!!!!!
Stay strong girl, I am talking with my boss to see if we can host the bands and put donation jars up for you, if we host a fundraiser we will be able to make money for you, I love you Abra
Abra, my dear friend Billy, aka Ditch, shared this with me. He lived with me and cared for me when I first learned about my own brain tumor which also affected my optic nerve, although mine is in the pituitary gland. Although "benign" he knows and I do that this word did not mean it wasn't benign to fear and reduction in your quality of life, ability to work and live your life on your own terms. Now, you are faced with malignancy. I cannot imagine the fear you must be feeling. It sounds like you have the best healing tool there is...love and support. On payday, and on every payday after that, I'm sending you what I can. You have hope, something can be done and you will get through this. Never ever give up hope, girl. If you need someone to lean on...I'm good ears. Find me through here, or through Ditch.
Love you abra!!!!!!! You can beat this in its face!
Praying for you sweetie! Stay Strong! Gods got you:)