Warriors With Wings

#LoveLikeEmi

“Emily was diagnosed 11/26/14, the day before Thanksgiving, at age 4 with a SPNET (Supratentorial Primitive NeuroEctodermal Tumor). Emily had been misdiagnosed with allergies after suffering debilitating headaches for a few months, we pushed the pediatrician until she agreed to order a CT scan. After her CT scan Emily was sent straight to the emergency room. Emily had a brain tumor and was transported via ambulance to Kaiser Sunset, where she had surgery the day after Thanksgiving.”

“Thankfully there were no complications and by the grace of God, she was talking, walking and was discharged.  Three weeks later, doctors found the tumor had grown back.  Emily started chemo on New Year’s Eve, having a total of 6 rounds of chemo at Children’s Hospital Los Angeles and 30 rounds of radiation to the brain and spine. She was in remission for almost 2 years when she had scans in July of 2017 showing an area of enhancement.”

“On August 16, 2017, after having a seizure and being airlifted to CHLA, the area of enhancement showed growth causing her to relapse. Emi had a resection August 2017 in hopes that an immunotherapy trial with the University of Florida would save her life. While awaiting for her life saving shot, she reoccured 4 months later, the 4th tumor bled in Dec 2017 and she was put in observation. She had a 4th resection and started the immunotherapy trial. Just 3 months later she reoccured for a 5th time. During that 5th and final surgery, she suffered a stroke in the operating room, they induced a coma in hopes that the swelling in her brain would go down. During surgery the surgeon found out that the tumor had spread and there were now multiple tumors causing blood to be pulled to a different part of the brain and that caused the stroke. After a week of tests after tests, they declared her brain dead and she had to be taken off life support.”

“Emi gained her wings on March 27, 2018 at age 8, leaving us all heart broken and lost, but her legacy will live by inspiring others to love the way she did, to #LoveLikeEmi”

Story told by mother: Olivia Jarquin

FB: www.facebook.com/PrayersForEmilyJanelle

IG: www.instagram.com/prayersforemilyjanelle

Cancer Survivor Stories

Michelle’s Journey with Medulloblastoma

“This all started in summer of 2015. I was 40 years old and up until then I was an able bodied woman looking after my son who was 4 years old at the time. I had very bad headaches which I thought were migraines, so I took some painkillers but they didn’t do nothing. I still had the bad headaches. While walking my son to school one day I had to hold him as my balance was so bad while walking.  I also remember being sick and having dizziness like symptoms at times. It was after these symptoms that I thought something was wrong, so I went to doctor who then said I must go straight to hospital. At hospital they did a MRI, which when they told me I had a brain tumor in the area of my cerebellum, my life changed forever. My family were informed. After this diagnosis  I went to Addenbrooke’s Hospital in Cambridge for care . I was informed and given advice of what may happen. I  also was asked whether I agreed to consent to surgeries. I had two operations, which I agreed to. I can’t remember much after this time frame, as I had a very serious brain infection and I was in the intensive care unit for a while.  I also had two additional operations to remove the infection of which I can’t remember the details, I was too ill at the time, so my family informed me.   After this I recovered in the hospital for some weeks, not being able to walk far at all and was in a wheelchair for the most part. Even the most simplest tasks like toileting had to occur while in bed or in a bedside commode. I did have balance problems after operation, it wasn’t related to tiredness for why I couldn’t walk far. I also had swallowing issues, so I had stuck to eating yogurts in the hospital. After some time, I was moved to a hospital closer to my hometown of Suffolk near the coast. I was given a NG tube for feeding. I still did eat by mouth but it was mainly puree stuff, as I had swallowing difficulties. After staying there for months, my walking improved a little and I started to use a four pronged walking stick to walk short distances like from the bed to the toilet. I disliked having the NG tube, so they changed it to a peg tube in my stomach for feeding nutrition, which again I was still eating pureed food by mouth. After I left the hospital I went to live in a residential home with 19 other residents, whose were mostly disabled in some form. I had my own room and there were caregivers in the building 24hrs a day for help and to administer medications, etc. I had a physical therapist assigned to me for exercise, such as learning to walk again on my own and going up stairs.   I also had a speech therapist for swallow issues and speech exercises which I did. The physical therapy helped me enormously in getting back some strength in my legs and arms. Overall it gave me confidence and hope for the future. We moved again in January 2018 and since moving I have improved a lot. I am walking every day and don’t use a wheelchair. I really now only use a walker to assist with balance but balance is much better now than before. I have started using my four pronged walking stick outside for walking longer distances, as it is more steady.  I was a Christian and went church before my operations, I was baptized too. After a few months I had another scan revealing the cancer had come back and it was around the brain. The doctor came to me and my family and revealed I had a few months left to live, which was devastating. Thanks to my brothers, I went to church for healing. They prayed and put hands on me asking for healing. They also held prayer meetings for me.  The minister also came to see me directly and we had prayer sessions . After this, I had radiation therapy but was told it wouldn’t reach the location of the tumor. I had 30 sessions of radiation therapy which would only delay the progression of cancer and add only months to my life. I was  scared, obviously and couldn’t really understand what was going  on. After t received the radiation therapy, they repeated the brain scan and to everyone’s amazement the cancer was no longer detectable. I went to see my consultant, who had tears in their eyes down streaming down her face saying “this doesn’t happen, it’s a miracle!”.  It is now nearly 2 years that I have been clear of cancer. Unfortunately I lost my faith and became very angry at God for having this happen to me. But then it made me wonder “did God heal me?” “And did the radiation therapy help?” I don’t know but I now thank God for this healing revelation. I would encourage others to seek His help because miracles like this do not happen every day but I am so blessed. I am eating more normal now, although the speech therapist during my swallow evaluations still says to stick to a purée diet which I dislike now but I know I have to be careful what I eat. It is a risk but I am aware of it and I do worry that I may aspirate. To be honest, I know what I can and can’t eat and if I cough while eating, I stop or correct it. When I drink fluids, they tend to be more difficult, so I have to put thickener in it so that I can drink it. I have given up drinking any alcoholic beverage and glad I did.  My speech is clearer than last year but it is still a bit slurred. I practice talking as much as I can and sing, or try to. I definitely have more strength in general, as I have joined a gym. I would say being brave has helped me build confidence to this day and not being being afraid to try new things and to push yourself to do new things . My determination and bravery have helped me through all of this and I would say trying to be positive about my conditions to continue to make goals and to achieve them. I advise not giving up on your dreams. Cancer is hard but be thankful for things you still have and can do while not letting it rule your life.”

Michelle- from Cambridge