The San Diego Brain Tumor Foundation has been with me since the beginning. I became a member in 2009 when I was first diagnosed and am still a member today. I look forward to the support group every month. SDBTF also helped me financially during my surgical and treatment period. Having emotional and financial support from the foundation has made this process much easier. Thank you San Diego Brain Tumor Foundation!
It has been a really hard road for my son and our family. He started treatment on March 2012 with Radiation and Chemotherapy. We watched as my son became very weak and lost most of his energy but even then he showed us what a strong boy he is. Never complained about getting up at 6:00 am in the morning to go and have his treatments. This went on until April 28, 2012 when he completed his radiation treatment. Left only with chemotherapy he continued to fight his battle never giving up and never asking “mommy, why me?” I don’t to this day really know if he understands the whole cancer thing but he just says “let’s just hurry up and finish this so I can get better”
As a mother with four kids this has been a really hard struggle in all aspects of my life. Children’s Hospital has been very kind and helpful to me and my family. They connected me with this wonderful organization, the SAN DIEGO BRAIN TUMOR FOUNDATION. I had not being able to pay my rent and had been given my 3 day notice to move out. I was devastated and not knowing what to do. The San Diego Brain Tumor Foundation stepped in and rescued us. The foundation was able to in one day call my manager and take care of all the details so that I would not be evicted. It was an angel sent at the right time to help my family.
Again so many things have happened and I can be here writing all night but there is only one word I can say to everyone at San Diego Brain Tumor Foundation, thank you and God Bless you all.
PS. John Carlo as of November 2012 has finished his Chemotherapy and is now on a 6 month pill treatment. Things are looking brighter! His last MRI and came out clean!!!!
With Great Gratitude,
Claudia Campos and Family
AJ was first diagnosed with Glioma of the brainstem when he was 3 years old. He has had chemo and radiation therapy in the past with no response. We decided to observe the tumor for about two years without treatment until we decided to go on another treatment called “Avastin.” AJ is on his second month and has about three more months to go. He first had two doses of Avastin till they performed another MRI of the brain. His doctor believes the treatment is responding as the tumor has decreased. We then decided we would continue on with this treatment as AJ is doing very well on it. He hasn’t had any side effects and so far so good. AJ is a strong boy and always has been, he handles it like a champ and we have no doubt he will get through this.
On Thursday, December 11, 2008 I was diagnosed with a left acoustic schwanoma. The brain tumor was growing in the left balance nerve. I elected to have surgery on March 4, 2009. As a result, I’ve lost hearing in my ear and now have a severed balance nerve. With the severing of that nerve I’ve had severe vertigo for several months. To this day I still experience various levels of dizziness. It’s a daily challenge to walk or talk but it’s important for me to continue to work and get back to a daily schedule. Unfortunately, after a few months a new tumor appeared in the same area. At this time I am evaluating all options available. In closing, I look to staying positive and making each day count. I have no regrets of the choices I’ve made personally or professionally. From those choices I’ve gained lots of experiences which have made me a stronger person. I am grateful to my family and friends for their support and I look forward to the future come what may!
The San Diego Brain Tumor Foundation provided financial assistance within the foundation’s guidelines and prepared my family for the upcoming months of my illness by explaining the process of this medical procedure. I thank everyone who has made donations to SDBTF. Without those donations, the services that I have utilized would not have been available to me or the many others that have been stricken with a brain tumor.
Ethan was diagnosed with a brain tumor in 2010 at age 5. Today Ethan is 11 years old, full of spirit and life getting ready to go to middle school. He still uses a walker to get around but we are so happy that he is alive and enjoys life with his three Brothers, Mom & Dad. Thank you SDBTF for everything you have done to help him, he is truly grateful.
I’m Melanie and just over 4 years ago I had a seizure in the middle of the night, and woke in the emergency room to the ER doctor telling me that a scan showed an egg sized mass on my brain. No one knew what it was and an immediate biopsy didn’t tell us anything. However, a biopsy during my first resection showed that it was a grade 2 Astrocytoma, brain cancer. That surgery did not remove everything and unfortunately we had never attended a SDBTF support group or looked into their website or my husband and I would have known to check out what type of brain surgeon the doctor was as not all brain surgeons are tumor specialists. I was referred to a neuro oncologist from that surgeon and the oncologist had my case reviewed by the hospital’s tumor board whom decided that I needed another surgery as less than 50% had been removed.
My 3rd surgery was more successful but still left about 10% of the tumor in there as it’s difficult to tell in low grade tumors the difference between tumor and normal brain tissue. Over the next year and a half my tumor grew quickly and I ended up having a 4th surgery with another tumor specialist who ended up doing a full resection. My oncologist decided that I should do a year of chemo, so after that surgery I did a year of chemo. The SDBTF has taught me a great deal as doctors are always discussed and I picked my 4th surgeon based on the experience of others. I have also found their support groups beneficial as they all know and genuinely understand what I go through on a daily basis. The caregivers who attend can all relate as well as they know like us survivors what it’s like to be thrown into this position. The friends I have met there I would not have met without this tumor, so sometimes I see this tumor as a way to have meet some of the most amazing people there are in this world. As some in the group say “we’re the best group, you never wanted to be a part of.” I owe so much of my health and sanity to this group as does my family! Thank you SDBTF for all you have done for my husband, 4 children, and me!!
My name is Mariela. My husband was diagnosed with glioblastoma stage 4 on February 2012. He had surgery and had 100% of the tumor removed. He then had radiation for 6 weeks. After that he started on chemotherapy and has been on since then. He had been doing great. No side effects. Living his life as normal as possible. He was able to work and continue with the same level of energy. In October 2013 he had his first seizure while at work. Since then he has lost his energy, balance and strength. He was also diagnosed with hypothyroidism in December. Alex was taken off the chemotherapy in hopes that his body could recover. He was looking a bit better and decided to go back to work in February 2014 but 1 week later he was back home on disability. We also found out his tumor returned and he was immediately put back on chemotherapy. He recently had an MRI on June 2014 and found out tumor is growing. Treatment is not responding. My husband sleeps most of the time. He has trouble remembering things that happened the day before or even a few minutes ago. There are times that he is doing very bad that require me to stay home from work. It has been really hard financially, emotionally and physically. We are fighting the best we can for him. He will be starting radiation again on August and a new chemotherapy treatment after that in hopes that the tumor shrinks and he will be able to have more time.
Thank you again for your help. You have relieved some of my stress financially. I am forever grateful to you.
Just ten weeks after turning 8 years old, he started having horrible headaches. Each day he got worse and within a week he was unable to sleep. January 30, 2012 the MRI was ordered and completed. Before James could get out of the MRI machine, we were told he was being admitted to Ray Children’s Hospital because he had a brain tumor.
James had brain surgery on February 2, 2012 and was diagnosed with a Medulloblastoma tumor. He started six weeks of radiation. Fast forward to today, he is still with us and receiving treatment.
Tim was diagnosed with Aplastic Anemia in 2005. He had a bone marrow transplant in Feb. 2006. His older brother was his donor. Tim’s health steadily got better and he returned to school and his life in the fall 2006. Over the course of the next few years he didn’t have a single health problem. In the fall of 2010 he started having flu like symptoms. We took him to the E.R. after a week of his symptoms not changing and they found a mass in his brain. He was diagnosed with Anaplastic Medullablastoma in August 2010. We then came back to our family at Rady’s. He has since undergone treatment for the brain tumor which included brain and spinal radiation. Due to his previous illness, chemotherapy was a challenge for his body to take and up until last summer we were still receiving blood and platelets. Chemotherapy treatment also resulted in hearing loss and Tim has neuropathies that make his left side weaker. He wears leg braces and is able to be mobile on his own. He was in a wheelchair for some time and then we held him up and walked to help build up his strength. His father lost his job in Jan of 2013 and we have been struggling to get by with our bills and continued treatment for clinic and hearing aids and other specialties and appointments.
The San Diego Brain Tumor Foundation has been able to help pay some of our outstanding bills. This has been a huge relief to us.
I’ve been diagnosed with a terminal brain cancer since June 2012 and was given two years to live. The tragedy of my diagnoses has changed my life for the worst and that was the worst possible time of my life. The San Diego Brain Tumor Foundation has been there for me and helped for the past two years when I needed help the most.
I’ve turned to many organizations for help with the cost of the medical premiums, but got no help. SDBTF was the only organization helped me when I really needed it. I’m on some medications with high co-pays and I’m on a fixed low income. The financial assistance for my insurance premium that I receive from SDBTF is helping me to continue receiving medical care and to feel that I have some support.
SDBTF is still helping me and I feel truly blessed to have such nice people in my life and am forever grateful.
God bless them all and I’ll never forget what they have done for me.
In early 2015 my New Year’s resolution was to lose weight so I decided to exercise and while doing so I felt a very bad headache so I stopped. This was the beginning of many headaches so my doctor sent me to neurology where they did a neuro exam and then an MRI. The MRI was done on 9/23/15 and days later, the neurologist herself called and said they found a mass and by the looks of it, it is a memingioma, An appointment was scheduled a few days later when I received the news that my only option was to have surgery on 11/4/15.
I got everything ready for surgery for my children and family. Even after the surgery I would need radiation treatments to deal with the tumor which will happen after I am well enough. Unfortunately while recovering in the ICU, I had a “mini” stroke and remained in the hospital for one month then transferred to Sharp Memorial Rehabilitation on 12/4/15. I was an inpatient for 3 weeks then discharged. I went home as an outpatient and started community re-entry program 12/29/15. The neurosurgeon told me I would need 30 radiation treatments at UCSD and La Jolla which completed 3/30/16. The San Diego Brain Tumor Foundation arranged transportation from my home to appointments and I am so grateful for the assistance.
Two years ago I was happily married with two small sons, had just completed my Bachelor’s Degree and was newly promoted to manager at King’s Fish House in Carlsbad. I was excited that my life was on track and that after a lot of hard work I had accomplished two huge goals: completing my education and obtaining the promotion I had been seeking. All of that changed when on January 16, 2010, I had a seizure at work and the life I had known ended. The next days, weeks and months are still a mass of confusion to me, but I do know that within three days of the seizure I had brain surgery and woke up to a world of incredible pain and a paralyzed right side. I was told that I had stage three brain cancer, that they were unable to remove the tumor and that in the process of the surgery my brain had been damaged and though there was nothing wrong with my right arm and leg, my brain could not control them and I could no longer walk.
During the next year my life was focused on reducing the tumor through radiation and chemotherapy and learning to walk again through physical therapy and exercise. In the beginning I was confined to a wheelchair, could not even complete simple math problems and had to have constant help to eat, bathe, dress myself and get in and out of the wheel chair. I spent the first two months after surgery at Sharp Rehabilitation Center relearning basic skills. My wife had to be trained to administer injections and numerous medications, how to transport me in and out of the wheel chair and car and how to make our home safe for an invalid. Becoming more independent has been a slow process and there have been many obstacles along the way including dealing with the side effects of radiation and chemotherapy, scheduling rides to and from UCSD and finding childcare for my children while we were at the hospital, several emergency room visits for seizures, falls, allergic reactions to medications, and numerous infections due to my weakened immune system.
In my own personal war against cancer I have made many life altering changes. I radically changed my diet, replacing processed foods with fruits, vegetables and lean proteins, and lost 70 pounds. I quit smoking, and started a daily exercise plan to strengthen my body and regain muscle tone and movement. I started going to church, gaining comfort and faith and learning to trust God for my future and I simplified my life in as many ways as I could. My body and immune system have gotten stronger and although I still cannot control my leg, I have learned to walk again by using a brace and moving my leg like a wooden peg and I almost have full use of my right arm.
You asked for a list of the trials that I have had to face and there are so many it is hard to write it all down. Cancer has caused so much devastation in every aspect of my life. Physically, my life is drastically altered. Although the tumor has shrunk, I continue to have frequent seizures, headaches and vertigo making any type of employment impossible and severely limiting what I can do each day. I can no longer drive a car, run, play ball with my sons, or swim with them in the ocean. I have to carefully plan my day to avoid being over tired and I walk and move very cautiously to avoid falls. Bright lights or sudden movements cause instant vertigo, limiting my interactions with crowds and many activities with my friends and family. Financially, I have had to move my family from our home to live with my mother because the $1,500 I get monthly from Social Security is not enough to pay for rent, food and utilities for a family of four. As the medical bills have mounted I find myself cancelling services like physical therapy and routine checkups and not replacing medical equipment like boots and leg braces rather than add to growing debt.
But the biggest fight is the emotional one. Some days I just feel like I am drowning. I have lost so much and I am so afraid of losing more. I am afraid that there will not be enough money to continue treatment, to keep a roof over our heads, to give my sons a normal childhood. I am afraid that I am less of a dad, and less of a husband and that I have placed a huge burden on my wife and sons because of it. I hate the helpless looks on their faces each time I have a seizure and each time I fall. It breaks my heart that my nine year old has frequent nightmares and to hear him cry out in his sleep that he doesn’t want his daddy to die, and to watch my wife work so hard to finish school, to take on the role of caretaker and to deal with the depression that comes with both. I am afraid the tumor is growing, afraid of losing time and most of all I am afraid of the future and what new trials and struggles it will bring.
First thing that come to mind when someone ask me about Yuntasha is that she is a wonderful, beautiful, kind hearted, best spirit person I have ever met (I’m not saying that because I’m her mom). Yuntasha is a 14year old young adult that has been through a lot, in 2005 Yuntasha was diagnosed with her first cancer called neuroblastoma. The tumor was behind her left lung and was found at a very early and during that time there was no need for any radiation or chemotherapy needed. At the age of 10 her battle with neuroblastoma came to an end because she was cured from it (yeah). During those years from 4 to 10 Yuntasha had other health problems that occurred she was diagnosed with a learning disability which later was acknowledge to be moderate retardation, which has resulted in her attending Specialized Education Classes or the new term Special Day Classes, she also has asthma and ADHD.
In 2015 I received the worse news that I have every felt, once again Yuntasha has cancer and this time it’s brain cancer. I thought that the world had ended for the both of us. The type of cancer Yuntasha has is unidentified but it is a Grade 4. When the doctor told me and my husband it was shocking and overwhelming for me, but Yuntasha wow she took everything like a pro she never went in with a frown, sad, or mad face; she has always smiled, happy, and very polite. Even now we spend a lot of time back and forth at the hospital, due to her diabetes inspidious (water diabetes) which she has because of where the tumor was in her brain. Yuntasha stills smiles all her nurses or any nurse that has had her as a patient has said she has the most beautiful spirit they have seen. Even with all this going on Yuntasha graduated from middle school with honors and was inducted into the San Diego Urban League.
To sum up who Yuntasha is me and other people that has been touched and is still touching would be she respectful, loving, kind hearted, high spirited person, and with everything she has going on physically and emotionally I’m truly blessed to have her as my daughter.
This August (2016) Levi celebrated 5 years of being tumor free. We’ve started a tradition of celebrating the day of his surgery, calling it “Tumor Termination Day”. On this day, we add special treats like frozen yogurt or donuts and make a point to talk about what our family has been through and how this has changed our family–for the better. Levi’s Craniopharyngioma gave us the gift of perspective and requires us to slow down and approach life differently than we had expected or perhaps than we would have chosen. Levi continues on with left sided weakness, although I seem him growing stronger and reaching new milestones all the time. He also lives with impaired vision and panhypopituitarism, but navigates both impressively.
Anybody who meets Levi remarks at what a lovely, well mannered boy he is. He’s a charmer and that is for certain. He absolutely loves to engage with people and from the moment he wakes up, he’s inquiring on all aspects of life. He enjoys school, riding his bike and most of all talking!
We thank the SDBTF for the support they provided us when we needed it the most.
Life has not been easy for our only child Ben. He is borderline autistic (high functioning) and has struggled with communication skills and social dynamics all his life. He experienced seizures starting at about 18 months old and was eventually diagnosed with Epilepsy at around 12 years old and put on daily medication.
Ben’s journey with cancer started on November 15, 2015. It came about because after being unemployed for a little over a year, he finally got a seasonal job at Wal-Mart. His first day on the job was November 13th which was orientation, the next day he had training. It was on his second day he experienced double vision while trying to focus on the training program, which was done on the computer. After expressing his vision problem, we took him to Urgent Care the very next day.
Sunday, November 15th, we headed out to Urgent Care where the doctor examined his eyes and noted that he had no upward gaze and that his eyes were dilated. We were told to go directly to the Emergency Room. We headed to Sharp Memorial ER and we were seen right away. They did a scan of his head and the ER doctor informed us he had a tumor in his pineal gland and that they were going to admit him to the hospital. The next day the “on-call” neurosurgeon came by and pretty much said the same thing that the ER doctor said, “You have a pineal gland tumor”. He mentioned they would be doing an MRI and some blood work and a spinal tap the next day.
Three days later the doctor came in and announced that Ben needed to have a drain inserted in his brain because he had developed hydrocephalus, (fluid on the brain). Because of where the tumor was it was blocking the cerebral spinal fluid from flowing through his brain and we had to do this soon as it was impacting Ben’s balance and causing nausea and vomiting. Friday, November 20th at 5:00 p.m., Ben had his first surgery for the Ventriculostomy. After this surgery Ben was put in ICU and had to lie in bed at a 30 degree angle, unable to move his head due to this drain being in there. It was very painful and uncomfortable for him and was the beginning of many more challenges to come. We changed neurosurgeons and Ben was transported to Sharp Grossmont on November 25th. The next day Thanksgiving, November 26th Ben awakens in a new ICU room at Sharp Grossmont Hospital. On November 27th Ben has surgery to put a ventriculoperitoneal shunt in his brain. This replaces the 1st drain that was put in by the first doctor.
Ben had surgery to remove the tumor on November 30th He remained in the hospital until December 8th, his 22nd birthday. After completing his 3rd round of chemo he ended up having to be admitted into the hospital for 1 night for a blood transfusion due to a low red blood cell count. He completed his 20 days of radiation on April 15th and the after effects of this has been short term memory loss and he continues to have vision issues which means he cannot drive. At this point, we are not sure what Ben’s options are in the future. We are so grateful for the San Diego Brain Tumor Foundation for being there to help with paying some of Ben’s medical bills and transportation to radiation appointments. We appreciate so much the assistance you have given our family. Thank you so much.
My name is Katrina, last year my daughter Emma was diagnosed with a high grade glioma. In the beginning, she didn’t look good but now almost a year later my daughter is almost 15 months old and is doing great! She’s more like a 6 month old but that’s fine. She’s really a sweet and happy baby and I wish everyone could meet her and love her as much as I do. After her diagnosis the doctors said that she wasn’t going to make it to her first birthday, but I can give you picture of her first birthday and more! I just want to let you and everyone know that if it wasn’t for the San Diego Brain Tumor Foundation and the social worker from Rady Children’s Hospital my family would not have a safe and healthy place to live. We are able to be a family and not have to stress about every little thing. Being a single mother to not only Emma, but to her twin brother Cody and her 2 year old brother Aden can be really tough. We just want to say thank you for all your help and support.
My name is Bruce Urquhart, and I have been a member of the San Diego Brain Tumor Foundation (SDBTF) support group for six years, beginning in April, 2010.
In December, 2009, I was suddenly unable to speak more than a few phrases. A MRI scan showed that I had a brain tumor, which was surgically removed four days later. I was told that I had glioblastoma, and the prognosis was 3 months to live without further treatment, or 18 months to live with radiation and chemotherapy.
As I went through radiation therapy and chemotherapy I had further complications (a blood clot and shingles), but I was able to return to work in March, 2010, appreciating the diversion of something else other than my prognosis. As the months progressed I found myself weakening. A blood test indicated internal bleeding, and a PET scan, endoscopy, and colonoscopy were ordered. These tests showed an additional brain tumor, plus tumors in my thigh, groin, stomach and small intestine. After numerous blood transfusions, surgery was performed to remove a third of my stomach, a portion of my small intestine, and the tumor in my groin. The remaining tumors were to be monitored with brain MRIs and PET scans on a periodic basis.
After the second surgery, the stomach and brain tumor tissues were compared, and matched with the first surgery. The misdiagnosis of glioblastoma was changed to stage 4 melanoma. While this is still a frightening diagnosis, unlike glioblastoma, the body’s immune system is able to assist in the fight against melanoma.
As I recovered from the second surgery, I was accepted to participate in a clinical trial for the drug ipilimumab (Yervoy) being developed for advanced melanoma patients. I was hopeful that this could be the “magic bullet.” Since that time my body has responded well; my thigh tumor has resolved; and the remaining tumors have not grown.
I’m extremely thankful that after six years I am still here to share my story. I give credit to the staff at Sharp Memorial Hospital, a positive outlook, a supportive nurse practitioner, Shirley Fett, and an intense exercise regimen that includes running marathons and ultra-races. Participation in the San Diego Brain Tumor Foundation, led by Connie Reeves-Campbell, has also been a key in my recovery. My spouse/caregiver, Jacque, and I attend the group in Point Loma regularly, and have gone through the emotions that only a support group can share. After our first meeting I left with a sense of hope that I desperately needed, and it has stayed with me to this day. We have met many courageous and strong individuals – both patients and caregivers – through the group. I’m very grateful for the sharing and compassion the group has provided, and with a positive outlook (and a little luck) we’ll hopefully be group participants for many years to come.