Meet Our Fighters
Birthdays, they never meant that much to me. But, there we were, two weeks after his diagnosis, sitting in a hospital room. It's was decorated very nicely. That's where he spent his second birthday. Sadly, at that point, we knew that he wasn't guaranteed a third. The Beast, as he is affectionately known, is a fighter. He doesn't know any better. And, sometimes, because the forces of nature bring like souls together, he was drawn to another warrior. That warriors name is Lilly Bumpus. Similarly, we were drawn to her mother, and her to us. We became more than just friends- cancer has a way of creating those bonds. We were no longer fighting alone. Days became weeks, weeks became months, and his third birthday was quickly approaching. At some point during our time together, Trish had learned that Mateo had spent his last birthday in a hospital room. Just the though of that brought so much sorrow to her heart. So, she stepped in to make certain that his his next would be something special. For several months, Trish, and her army of supporters (Team Lilly), conspired to throw Mateo a birthday party fit only for the superhero that he is. For an entire year, we'd been witness to so many changes, there were so many ups and down. Cancer had changed us. But, nothing changed us more than that third birthday party. There was love in every detail. There was hope in every decoration. There was a unity, somehow made possible by cards from all over the world. Birthdays, they never used to mean that much to me. Now, they mean everything. Thank you Team Lilly. -Erika (Mateo’s mom) *we are heartbroken to report that Mateo has relapsed.
My daughter Emily Janelle was diagnosed with sPNET Brain cancer at age 4, one day before thanksgiving. We then found ourselves spending Christmas in the hospital after a second resection for a tumor that came back. She started her first round of Chemo on New years eve, little did we know that those would be just a few of the holidays we would spend in the hospital. When we switched to CHLA to finish treatment, we quickly learned about Lilly's Magic, A mom and daughter duo backed by thousands of people who wanted to make the holidays behind the hospital glass just bit more magical. I have witnessed that magic, the look in the eyes of kids, when they walk in to a room filled with love, and with people ready to give them a holiday/ party like no other, where for that one instant they can enjoy themselves and just be kids. Kids like my daughter Emily who fight everyday just to see a brighter future. A future where cancer doesn't exist. - Oliva (Emily's Mom) *Update* We are sad to report that since writing this, Emily has relapsed.
With the help of Trish and Team Lilly my daughter Bailey was able to have a huge magical 2nd birthday. We didn't know at the time it would be her last with us but it was fit for a princess. Cards covered walls on the outside of our house, balloon arches and balloon animals, party favors for a life time and 3 different cakes all came for Bailey. Bailey wasn't feeling well at her party but I'm so grateful we went through with it and have those beautiful professional pictures that trish arranged. I'll never forget my sweet girls birthday and I'll never forget her sweet tea party in heaven when it was the first time we spent her birthday without her. Trish gave me a very special little glass angel she found and it sits on my counter today. The love team Lilly shows is bigger than anything. They have hearts of gold and love deeply. We thank team Lilly for loving our sweet girl. - Julia (Bailey's Mom)
Sometime this month, not sure when Gemma will be getting a MRI because Gemma due to chemotherapy and all ended up getting a infection called candida since last year July and it was in her brain she has been on so many antibiotics. now she is on one that the doctors think has done it praying to god that we can take her off it. Some people think children with cancer just deal with chemotherapy and that's it, but it isn't the case there is so many things that can happen to there body's due to chemotherapy. Gemma is still going strong through treatment I pray to god we will get through this keep moving forward . I want to thank Team Lilly Foundation for their love this month and previous months. We have been struggling horrible with bills food everything it's been hard. I have been really private about it and didn't want any one to know but this month has been so hard and Team Lilly helped us with food and dippers for Gemma. Thank you so much Team Lilly god bless you thank you to all that help and give because god knows we are going through a tough time and he puts angels our way like Lilly. I told Lilly's mom trish Gemma is starting to talk more and said "Lilly !" I still have to catch it on camera but I make sure Gemma knows that we aren't alone that Lilly is with us always we love you #lillybumpus - Lesly (Gemma's mother)
Every time your son, daughter, neice, nephew, grandchild, any child in general gets hurt, think of the pain it causes you to see them like that get an owie or a boob boo. Imagine seeing that pain everyday, without being able to kiss the injury better & sending them on their way to play like nothing happened.That child you love has to get poked with countless needles, put through strange machines for scans, be bothered in the middle of the night by strange nurses & doctors when they are already completely exhausted mentally and physically. That is only the begging of their diagnosis that doesn't begin to cover chemo therapy, physical affects of hair loss, not being able to go to school, see friends, & why mom is following them around with a can of Lysol and colorx wipes because their little bodies cant fight infection anymore. These are just a few things that have flipped my whole world upside down within just weeks of my daughter being diagnosed with all Leukemia. My daughter Blaykelynn, has just a love for life, adventure, & just pure joy for making other people smile with her sassy attitude and all. Before being diagnosed we were always out and about just enjoying life, until cancer came and changed everything. Long story short, I noticed my daughter not being her wild self. She seemed more pale, tired, and I knew it wasn't just your common virus with how long this had been going on. I had her blood tested and on August 15, 2017 Blaykelynn's fought with Leukemia had begun. After many tears, sleepless nights in the hospital from worry, and trying not to smother the family members who sleep good the night before, my family became closer than ever. My daughter is amazing & a real life hero in my eyes, along with all the other kids fighting cancer. She still has her same love for life but it has been diluted by all the horrible drugs in her system that while are saving her life are also killing her. We found a blood clot in her right arm above her pic line 3 weeks ago, resulting in removing the pic & her receiving 2 shots everyday for a few months. She gets up every morning and says " mom, its morning time for my shot lets do this thing & get it over with!". She gets worked up but always says " I don't wanna do it, but I know I have to!", if that isn't strength i don't know what is. I explained to Blayke her blood was very sick & the chemo was going into her body to fight the bad guys( cancer) that were in her blood. She asked me, "why momma?" If my heart wasn't already broken that's the moment it shattered, I explained to her because god knew only a true superhero could handle this sickness, that's why he picked you because he knew how brave & strong you were! After that she told me, " So since my hair is going to fall out does that mean you'll never brush it again? & I can have a blue wig??". These kids fighting cancer are giving up their lives & doing it with a smile on their faces most of the time. Their lives are being turned upside down before they are even given a change to live it, kids shouldn't live their childhood growing up in hospital beds! My daughter is stronger than caner and I know she will beat this, its just another adventure in her book that we weren't prepared for but we will never stop fighting! People need to be more aware of what children go through and how much time and attention ISNT focused on them! I'm going gold this month for Blayeklynn because she deserves for than the 4% that she & all the other kids are given for childhood cancer awareness. If it weren't for the community we live in, the family support we have, friends who have became family even more so through this battle, I don't think wed have even made it this far. We haven't even started the hard part of Blaykelynn's journey yet, but I know with the support and huge hearts that have already done so much for us and continue to support us through this & for all the big and little things that we wish we could repay them all for we will get through this together. Nobody fights cancer alone. I wish we could individually thank every person but for now we will keep fighting the battle together, knowledge is power & my community has shower us that and then some!!! - Bailee (mom)
Karin is a loving and feisty little 2 year old girl. She was diagnosed on June,23,2015 with (AML)Acute Myeloid Leukemia she was 6 months. Karin has relapsed twice to AML. On December 12,2016 she received her bone marrow transplant unfortunately only after seven months of being cancer free the cancer came back. She recently underwent very strong chemotherapy to get her into remission for a possible second transplant. Karin has endured so much through out her short life the hospital is all she knows she has been more in the hospital than at home. She will soon have a bone marrow biopsy to see if the chemo got her into remission. No parent should have to be afraid of losing there baby to cancer. We are hopeful this will work Karin is a very strong little girl she will get through this just like she has before. -Angie (mom)
Madison was diagnosed in January 2011 with a rare form of brain cancer. Maddie's diagnosis is brain cancer with hydrocephalus and also cancer in her spinal fluid with a spot on her spine. It's called choroid plexus .She was the youngest dx there at only 4 months old. She endured so much in 8 months ..!she was in ICU for 7 weeks during that time she had Tumor removal , drain put in her brain to drain the fluid from her brain, Broviac ( line ) put in her chest and immediately started chemo . Then the day before we got discharged she had Shunt placed. She had a total of 11 cycles of chemo all before she turned 1. To many MRI's, spinal taps and inpatient stays in that short 8 months. The drs put her in remission when she was 13 months old ( October 2011)She still was getting spinal taps, MRI's every 3 months . Everything was going well , she was finally free living outside the glass. But unfortunately after her 9 month scan and I was 7.5 months pregnant with Avah her dr called and told us that she had relapsed with two new brain tumors. She immediately went in and had a port placed and began outpatient chemo. But Nothing was working , so on September 11, 2013 she underwent another tumor removal and had a tumor marker test done and it came back with 4 different chemos/ meds that will hopefully get rid of her cancer/tumors. She started the treatment the end of September 2013 and she is still on this treatment today .It is a clinical trial and not knowing if she will beat this. She gets 4 different chemos orally every single night at home. 3 of them are liquid and the other one are capsules that she chews with Reese's peanut butter cups bc she can't swallow them yet. She goes into clinic 1- 2x a month for counts check, urine check and to meet with her drs and she gets Iv pentamidine to help her fight off certain types of pneumonia. Maddie is 6 years old right now , but will be turning 7 September 4th she has been fighting this battle for almost her whole life .We are basically taking it month by month. She was taken off the clinical trial in September 2016 bc her body was just to tired . The treatment was Doing more harm than good to her body , she was on it for 3 years and it was time to stop. We have no idea what the future holds for Maddie but all we know is that she is strong and she will continue to fight. She will continue to have spinal taps , echos, EKG and MRI's of the brain and spine every 3 months. The Drs will watch her closely and unfortunately if the cancer spreads that are only a couple options that they have discussed and that is a biopsy or a complete tumor removal But the risks are to high to do it .. We have had two neurosurgeons tell us that 99.9% she would not wake up herself meaning not walking , talking or something. So we don't want to take that risk. But we are just taking one day at a time. She is having so many side effects from hearing loss to losing some of her eye sight to tremors , no taste buds , short term memory loss to severe PTSD and OCD. -Tracy (mom)
This is Teah. She is the most loving, giggly, slobbery kiss giving baby you will ever meet. When Teah was born, we found out she had down syndrome (despite the 8 ultrasounds we had of her) Everyone kept asking us how we felt about it and, honestly, we we're so happy. We knew she was meant to be ours. Throughout Teahs short life, we have seen many obstacles. They told us she wouldn't nurse, crawling would be delayed, she would have significant health issues, including heart surgery. They we're wrong every time and this fighter defied the odds. When they told us leukemia would be a chance, we chalked it up to "Yeah right, she is healthy and happy, there's no way she has leukemia." We we're wrong. Teah will be just 22 months old when she starts treatment to fight for her life. When children get cancer, it makes you question everything. The doctors do their best to treat as we watch this ugly monster called cancer wrecks a childs body. These kids deserve so much more research and so much more than 3%. - Alyse (mom)
Cecilia Amelia Gonzalez was diagnose with Acute Lymphoblastic Leukemia "ALL" Pre B Cell high risk on May 17, 2016 at the tender age of two years and eight months. Ceci will be turning four on September 06, 2017. Towards the end of the month of April Ceci kept complaining of her jaw aching. I took her to the dentist and I was told that all four of her back molars were coming. After, having a fever for a week I took her to the urgent care for the first time. I was told by the urgent care doctor to continue on the Tylenol and Motrin for the pain and fever. On the second visit to the urgent care, Ceci was seen for her stomach been bloated. The doctor said to me that her stomach was bloated due to constipation. Which it did not make sense to me because Ceci was having her daily bowel movements with no problem. (Later, we learned that the cause of Ceci's bloated stomach was due to her liver been swollen and over lapping her stomach). On the third visit, Ceci was seen at the urgent care due to a reaction to Motrin. After three weeks straight of fever Cecilia became allergic to Motrin! The doctor prescribed a type of steroids to stop the allergic reaction. After a week, I noticed bruises on Cecilia's little body. Cecilia was not been her self and I had a feeling that something was wrong!!! I took Cecilia to the urgent care for the fourth time, it was then that the doctor decided to send her to get blood work. On our way back home I got a call from a nurse asking for me to return with Cecilia to the ER because her blood work had come back abnormal. My heart dropped, and started thinking the worse. We then arrived to the ER at 8:50pm admitted by 9:00 pm. It wasn't until 12:00 midnight that the Pediatric doctor came to the room and said to me the words no parent should hear "your daughter has CANCER"! At this moment my heart froze, I looked at Cecilia's eyes and told her, " baby, we are going to get through this! You are not alone!" And I hugged her not wanting for her to see me cry. Cecilia started her chemotherapy treatments as soon as she was diagnosed. Ceci is a strong and brave little girl. She has gone through many difficult obstacles since her diagnose. Ceci is our inspiration to keep moving forward with a positive heart. Cecilia began the Maintenance phase treatments on January 2017. The team of Oncology doctors had given September 2018 as her last chemotherapy treatments. On July 15, 2017, Ceci was admitted to the hospital for a high fever. Two hours after of her admission she went into a respiratory distress. Ceci was intubated immediately to the ventilator! Soon after, we learned that Ceci was fighting against a virus that attacked her heart. Ceci was diagnosed with a heart distress and pneumonia. On July 29, 2017; Ceci almost passed away in my arms! As the doctor, nurses and respiratory therapist surrounded us waiting for our Ceci to react to my voice. Then, Ceci reacted by grasping for air, swinging her arms and kicking! The doctor and respiratory therapist took over. Cecilia has had a total of four attempts of her been extubated from the ventilator. All four were a failure! We are praying that her fifth time been intubated will be the last and a success of her been extubated with positive outcome. Cecilia or "Ceci" how everyone has learned to know her by has been courageous! Ceci has proof that she is truly a warrior and she is not giving up on this fight! Together we fight because no child should fight alone! Mean while, when a child falls sick, sibling(s) too experience a roller coaster of emotional and behavioral responses to the advent of the illness. This could be due to changes in lifestyle, caregiving, relationships and interactions that the family has to undergo during the course of cancer treatment. As the focus is largely directed towards the sick child, sibling(s) often feel lonely and neglected by their family. As a parent, I asked to keep Ceci and her siblings in your prayers. We are warriors and we are not giving up on our Ceci, not today! - Reyna (mom)
On August 1st, 2017, William woke up with extreme pain in his stomach and begged us to go the dr. I had already set up an appointment with his Pediatrician earlier in the week, because both myself and my husband suspected something was wrong. His usual slender stomach, had changed and now was distended and rock hard. When he woke up I knew from the look in his eyes that this was serious and couldn't wait for his appointment time, so my husband took him to the local ED, and I proceeded to work and my husband promised to update me as developments came. Nothing could have prepared me for what we were to learn was wrong with our beautiful, sweet baby boy. Our son was flown by Enloe Flightcare from Chico, Ca to UCD within a couple of hours of presenting at the ED. The ED Physician had prepared us that he suspected that William had lymphoma, when those words hit my ears I had no control over the loud shriek that came out of my mouth. This was my worst nightmare, and all I could think was he was going to die, suddenly the walls of the ED felt like they were coming down on me and I couldn't breathe. My husband had tears pouring down his cheeks. We were met by a team of pediatric hem/onc physicians upon arrival at UCD. The physicians were pretty certain it was lymphoma but had to do a biopsy to confirm. The CT scan confirmed that he had huge tumors encasing his pancreas, behind his heart and in his lung. I was so scared, I broke down multiple times in an all consuming body sob. How could this happen? He was an otherwise healthy boy, no other medical issues. He was taken to surgery where another team of pediatrics surgeons biopsy one of the tumors in his chest and also placed a port-a-cath. After surgery we were transferred to the PICU where we spend two days until he was stable enough to be downgraded to a pediatric unit. His team of physicians had confirmed the results of the biopsy revealing that he had stage 3 birkett cell lymphoma, which is a highly curable cancer (80-95%), so this was great news. They also confirmed that his brain and spinal fluid were clear and had no cancer cells. This was another win. Although I was over the moon happy it was curable, they assured me we had a long battle ahead of us with intense chemo, and scheduled inpatient stays. When you have a sick child nothing else matters but getting them healthy and you do whatever it takes. As a parent I had to dig deep and find an inner strength that you hope you never have to use. I had to stay strong for William. We just finished his first full round of chemo, which went from a 7 day planned hospital stay to a 17 day stay because his lab were horrible and he developed awful mouth sores a known side effect of chemo. With that being said his scans revealed the tumors have shrank by 50% with one treatment!!! We are getting ready to start our next round on August 30th. Please keep #warriorwilliam in your prayers! -Amanda (mom)
Diagnosed on July 30,2013 at 17 months old. high risk stage 4 Neuroblastoma . She had tumors from her neck to her toes and cancer in her bone marrow. Finished treatment November 28, 2014 Cancer Free January 15,2015 8 rounds of chemo 20 rounds of radiation, bone marrow transplant, immuno therapy and multiple surgeries. Now 5 years old and started Kindergarten. -Olivia (mom)
Ona was diagnosed with a baseball sized brain tumor (Medulloblastoma) in June 2011 at the age of 7. After 10 months of intense chemo and radiation she was NED, just weeks after celebrating her 5 year anniversary a routine followup MRI, on 4/17/17, showed a new tumor had grown. Ona's tumor was removed and she was left with what we knew as reactive cells in her brain stem. After beginning chemotherapy she began to have symptoms of increased pressure on her brain. A new MRI showed that the "reactive cells" were indeed a tumor and had grown, leaving us with only radiation for treatment. Ona has completed Radiation and because of the type of tumor DIPG (diffuse intrinsic pontine glioma) we have been unable to find any continuing effective treatment here in the United States. Ona has been accepted into a program in Monterrey Mexico that offers us hope of quality life beyond the median survival time of 9 months post diagnosis. Patients from all over the world have traveled to be treated by the clinic due to the positive results that have been seen there. -Jenna (mom)