NPCFighter: Family Initiative
Families with a child currently battling cancer or in remission are invited to join our NPCFighter Program. Our families are the heart of voice of the National Pediatric Cancer Foundation and with your help we can shine a light on pediatric cancer.
- Submit your family’s story with pediatric cancer to NPCF here
- Story will be shared on social media sites
- Story will be shared as a profile on our website – see profiles below.
- Your family will be added to our database and will receive all emails regarding event participation
- Start your own DIY fundraiser. Click here to learn more.
If you are interested in joining our NPCFighter Family Initiative please contact Miranda Chapman at mchapman@NationalPCF.org or 813-269-0955. We look forward to working with you.
Adrian G., 14, Tampa, Fla.
Adrian was diagnosed with Pre B cell Acute Lymphoblastic Leukemia (ALL) in September 2012, a few days before his 11th birthday, since then he was under treatment with chemo but had some trouble with respiratory viruses and pneumonia that sometimes required up to a month inpatient at the St. Joseph’s Children’s Hospital. Our small family was separated for weeks, Adrian’s brother was 15 at the time of diagnosis and pretty much was alone all those long weeks while Adrian was in the hospital; even though Alejandro is a good teenager, he was spending his time alone at home, playing video games but not really expressing his emotions or fears regarding his brother’s condition. Their father had to work harder to support the family since I had to get time off from work without pay to take care of Adrian. Adrian is now 14, finally at the end of treatment and keeping in a good spirit… Also doing very good in school and going to High School!!… The warrior has won!!… God bless all the foundations, organizations and people that have helped us in many different ways and prayed for us. Thank you!!!
Aiden P., 12, Springhill, Fla.
We found out Oct 22, 2015. Two days before he was playing on the trampoline and a friend fell on his head. He started getting headaches and throwing up so I took him to the hospital and they did an MRI and found a cyst on his brain. They did a CAT scan to double check and the results showed that Aiden had a brain tumor. They took us by ambulance to All Children’s in St. Pete. On the 23rd he had surgery to remove the liquid from his brain. Since Nov. 30 he has been receiving chemo once a week for at least a year and half. It’s been pretty rough. There are a lot of things he can’t do that he used to love. His attitude has changed so much. When he goes in for chemo he has really bad anxiety and it breaks my heart to see him going through this. As a family we get through it all day by day. We will never give up.
Ava R., 7, Seffner, Fla.
Cancer has made a huge impact on our family as it changes the entire family’s life. Ava was diagnosed just before her fifth birthday during a routine visit to the doctor to get her yearly flu shot. When we were at the doctor receiving her shot they found a mass in her belly that ended up being a 2.5 pound tumor in her kidney. We were very blessed to have found this since she had NO symptoms or complaints at all. Her cancer was already Stage 3 (of 5). We then got on the roller coaster of surgery, chemo and radiation. Our family was forever changed on that day. Thankfully we rallied as a family and with help from friends and family and support from NPCF and other foundations and organizations we are happy to say that Ava is now just over 2 years off treatment!!!!
Brittany B., 4, Tampa, Fla.
Brittany was diagnosed with Hepatoblastoma at 15 months old. We were blindsided by her diagnosis. We sought chemotherapy treatment locally but traveled out of state for surgery where we lived for a cumulative month. We have three daughters, Brittany being the youngest, so during treatment we struggled to maintain a normal life for our two daughters at home. We lived in fear. Fear of losing our daughter, fear of the chemotherapy drugs, fear of surgery, fear of relapse. Now, three and a half years later, the fears most certainly remain but we have learned to push that fear to the back of our minds. It no longer controls us and no longer dictates how we live our lives. Cancer was a torturous and terrifying event that left us knowing that nothing can be taken for granted. Every day is a gift-every smile, hug, and kiss should be cherished.
Cayden R., 8, St. Petersburg, FLa.
Cayden’s battle with cancer started when he was just 11 months old. Finding out that your infant has cancer is very hard for any parent to hear yet alone hearing that your baby has a very rare Brain Tumor is devastating. In 2008 that is the diagnosis we received about our youngest son. Early on in Cayden’s journey we learned how much he was going to live up to the meaning of his name. Our little “warrior” faced numerous setbacks as he fought his battle with cancer. After a relapse in 2009 and finally completing two years of chemotherapy and radiation Cayden was finally “Cancer-Free”! Hearing those two magical words was music to our ears. As we approach our five year anniversary of being cancer-free, we are reminded that life is a gift and we are to celebrate it every day.
Connor H., 17, Riverview, Fla.
My name is Tracey. I am a single mother of three boys. Joshua and Jacob are my 19-year-old twins and Connor is 17. The twins are completely healthy and are currently in college. Connor has never known the luxury of being healthy and has only been able to attend regular school for nine months.
Connor never had a first day of kindergarten nor has he been able to make the memories that we all have had the opportunity to make during our grade school days. Why, you may be asking. The answer is cancer. Cancer has robbed my son of making normal memories. He has lost too many friends to this horrible disease. Connor was first diagnosed on June 1, 2003 (age 4) with Acute Lymphoblastic High Risk Leukemia. It took a little over three years for him to complete chemotherapy and radiation. After being off treatment for a little over a year we were given the horrible news…again. On April 28, 2008, just shy of his 9th birthday, Connor’s cancer had relapsed. Connor was admitted to the Oncology floor that day and was not discharged until Nov. 10, 2008.
Our family was literally separated for seven months. I stayed in the hospital with Connor, Joshua stayed with his grandparents, and Jacob stayed with another set of grandparents. Connor was discharged on Hospice care. After being under Hospice care for two years, he was discharged from their services. Connor is thriving and doing well. He does suffer from many long term affects from chemotherapy that affect his everyday life. Connor should be entering his senior year this fall. Sadly, he will not be able to attend regular school. Cancer has forever changed our lives. We learned to fight as a family and to never give up hope. We all live our lives to the fullest and look at every day with Connor as a gift. My boys and I have dedicated our lives to serving as advocates to the Pediatric Cancer community. Our family motto is: Never ending HOPE!
Hannah T., 15, St. Petersburg, Fla.
Our 15-year-old daughter Hannah was diagnosed with High-Risk Acute Lymphoblastic Leukemia this January. She had never had any health problems and we were so proud of her accomplishments during her freshman year of high school. Hannah was in advanced classes and orchestra. She has two siblings, two years old and under, who adored spending time with her in between studying and extracurricular activities.
Hannah started chemo almost immediately after being diagnosed with High-Risk ALL. At the time, it was estimated that she would spend around 2-3 weeks in the hospital to treat the side-effects of the chemo. One complication after another led to a nearly three month stay in the hospital. There is nothing more difficult than watching your own child dwell in pain for this period of time with limited options to minimize the discomfort. Hannah missed out on her second semester of her freshman year participating in her favorite activities and being surrounded by the comradery of being in high school. Her 2-year-old brother would ask about his ‘Hanny’ daily, not to mention the effects of having one parent being in the hospital while the other raises two small children.
Hannah began a new phase of treatment in March. The typical time for this phase from start to finish is eight weeks. After spending several weeks in the hospital due to severe side-effects of the chemo, this phase of treatment will end up taking almost six months. In additional to the physical pain Hannah has endured, the emotional stress of the superficial effects chemo has had on her appearance has also taken a toll on Hannah. She has always been very confident with her sharp and quick-witted personality, but as a 15-year-old girl, appearance and self-confidence plays such an important role of development at this age.
The emotional effects of the diagnosis often trump those of the physical pain. Fortunately, there is light at the end of the tunnel, and Hannah is surrounded by an excellent team of doctors who work tirelessly to relieve the pain and push through the ongoing complications of her treatment plan. We are optimistic about her future, but there is still a long road of physical and emotional struggles that accompany a diagnosis like ALL for a 15-year-old.
Imani H., 7, St. Petersburg, Fla.
Our whole life has changed. It really hit us hard when she was first diagnosed with Polycystic astrocytoma brain tumor. We lost a lot. We were lost. But we knew she was a fighter and we knew she would overcome. After the original surgery she couldn’t do anything. She couldn’t talk, eat, or walk. I was so scared for her but it was her determination that taught me not to be scared. She is still fighting now to walk on her own. Three years later and my baby can talk, and eat. She also just graduated first grade. Next school year she prays not to be in her wheelchair.
Jackson C., 11, Clearwater, Fla.
Our oldest son, Jackson, was diagnosed with Osteosarcoma in September of 2014. After undergoing chemo, the removal of his tumor and a prosthetic leg, he has now been cancer free since May of 2015. Jackson is living life like a normal 11-year-old who views cancer as an experience in his life and doesn’t let it define him or his future. He has a new outlook on life and finds joy in encouraging other children and families who have been newly diagnosed. As a family we have experienced firsthand the importance of love, family and the advancements of science and medicine. We are hopeful and encouraged that there will be a cure for pediatric cancer in the future.
Jake W., 4, Tampa, Fla.
On Jan. 29, 2014, after several trips to the pediatrician over the course of a few weeks, I knew something just still wasn’t right with my son. I decided to take him into After Hours Pediatrics for a second opinion. The physician there ran a few tests and decided to do blood work. Shortly after that, the doctor returned to the exam room with the news that Jake’s white blood cell count was critically low. He needed to be admitted to the hospital immediately and further testing began right away at St. Joseph’s Hospital. My husband Chris, and I, were told that Jake could be suffering from viral immuno-suppression or possibly something more serious. Within a few days, our world was turned upside down when the doctor shared the results from Jake’s bone marrow biopsy. The doctor arrived to our hospital room with the dreaded news, “Well, it is leukemia.” Our hearts were broken and our lives were turned in a direction we never imagined.
Jake’s treatment would need to start right away and would continue over the next 3 ½ years. The intense treatment to fight this cancer would involve toxic chemotherapy drugs, high doses of steroids, frequent hospital admissions, numerous blood draws, bone marrow biopsies, spinal taps to inject chemotherapy into his cerebral spinal fluid, radiation, body scans, arm and chest catheters, etc. The next day following this heartbreaking diagnosis, Jake began chemotherapy. On day 28 we received yet another blow when we learned that Jake still had 28% blasts/leukemia cells.
My husband Chris and I quickly began scouring the country for research and began contacting the top doctors in the field for their professional advice. It eventually became clear that a bone marrow transplant (BMT) would be the best course of treatment for Jake and it slowly became clear that the best place to do that would be Seattle Children’s Hospital (SCH). Jake received most of his pre-transplant chemotherapy at All Children’s Hospital (ACH) in St. Petersburg, Florida. After five months of intensive chemotherapy, Jake finally achieved remission and we traveled with him to Seattle for his BMT in early July 2014. We would be in the Seattle area for about 4 ½ months for his transplant and pre and post-transplant care/treatment. On Aug. 8, 2014, Jake received a peripheral blood stem cell transplant (PBSCT).
During the process, Jake lost all of his hair, he lost his appetite completely for several weeks (and took several months to get it back to normal), he suffered several skin and intestinal infections as a result of the conditioning treatment and his very limited immune system. Jake was on several doses of IV morphine, as well as several other medications daily. Eventually Jake was able to tolerate non-IV medications, although he needed a nasal-gastric tube to get them down as he had 30 plus medication doses per day for several months (and he was unable to swallow pills). Jake required around the clock anti-nausea medications for several weeks and received weekly blood transfusions for the first month or two after his transplant.
After spending about 85 days in the hospital, and about 100 days after Jake received his donor cells, he was cleared to return to Tampa. Since the end of Nov. 2014, Jake has been at home in Tampa with his family. He is seen for post-transplant care at ACH, and he remains in the immune system rebuilding stage, although his body has come a long way on the road to recuperation. He is currently almost two years post-transplant. He has been given statistics cautiously as they are hard to judge given the advancements in treatments and technologies. According to some doctors, Jake has about a 50-70% chance of long term survival without relapse. The risk for relapse decreases with each year as he gets further out from transplant. If a leukemia relapse occurs with a kid like Jake, the statistics are poor.
We are so grateful for the skilled doctors that have committed their lives and minds to fighting this disease. We have felt incredibly thankful for what we believe has been the best possible care by our team of doctors in Seattle and here in St. Petersburg. The acute stages of treatment have been a rough season of life to see our toddler suffer through so sick many days. It is only by our faith in the Lord Jesus Christ and the incredible support of our family and friends that we survived such a difficult and exhausting time. Truly taking it one day at a time, and sometimes moment by moment, we were able to put our greatest fear (of losing our son) out of our minds and focus on the One who is in control. We have maintained through this trial that we don’t know what the future holds, but we know who holds the future; and we know He will get us through whatever He calls us to walk through. We pray daily that Jake will never relapse and that he will have no serious long term negative side effects from all the harsh treatments he has endured at such a young age.
After enduring such a process as a PBSCT, I couldn’t be more grateful for the “fight” Jake has within him! I am confident this has served him well in this battle. As hard as it was to watch him suffer, it has been equally as wonderful to see him heal and strengthen. Aug. 8, 2015, marks two years since Jake’s PBSCT!
Jaylin G., 12, Tampa, Fla.
As a single mom hearing the words your daughter has three weeks to live, due to a tumor the size of a football in her abdomen, was unbearable. My world fell apart. My family was devastated. Steven was four and Jaylin was just two and a half. Going through six rounds of chemo, radiation, surgery, stem cell transplants, 3F8 antibodies, Accutane shots and numerous visits in in and out patient, within Tampa, St. Petersburg and New York City was my life for almost five years.
Trying to fight for my daughter’s life was a challenge. It still is. We do it every day. Jaylin was NED (no evidence of disease) at the end of 2007. Almost nine years later, she has side affects you can’t imagine from treatments. Hearing loss, neuropathic pain, asthma, and chronic diarrhea are just a few. We deal with her side effects every day, with many medications that are part of her life on a daily basis, knowing without them she won’t function. Jaylin says we have a pharmacy. We do. Having to go to her 37 doctors on a month to three month basis is sometimes overwhelming. Traveling to New York every four months is now normal for us. It’s the only way we know. But knowing that she’s still with us is worth it. We are thankful for every day, every moment, and every single second. We enjoy life to the fullest not knowing what tomorrow will bring. We are truly blessed.
Josh F., 8, Tampa, Fla.
Joshua is a happy little 6-year-old boy. When Josh was 2 1/2 he was diagnosed with Acute Lymphoblastic Leukemia. It is commonly referred to as A.L.L., it is a blood cancer in which cancer cells penetrate every part of his body. It is treated with heavy amounts of chemotherapy, and in some cases radiation and bone marrow transplants. What this leads to is a long, hard roller coaster of daily chemotherapy, transfusions, spinal injections, hospital stays, frequent trips to the cancer clinic, a compromised immune system and many other long term side effects. He has been very strong throughout all of his treatment. Josh is an inspiration to us all and is the strongest little boy we know. He has endured over 1200 doses of chemotherapy over a 3 1/2 year time period.
In August of 2014 his cancer was officially in remission and he ended his chemotherapy. He still suffers from side effects from the treatment and is at a much higher risk for other cancers and side effects due to the treatment. He loves all sports including football, hockey, soccer, basketball and baseball. He memorizes players numbers and positions and cheers on his favorite teams. Like many other children he also loves playing with his brothers, being outside and swimming in the pool. His favorite foods are fruit and of course chocolate bars. He is shy around new people at first but once he gets warmed up his fantastic little personality shows through. Josh lives life to the fullest and though he still has some side effects from treatment he gives maximum effort at everything he does. We as a family are very active to support research for pediatric cancer to get rid of this horrible disease and prevent other children from having to endure such harsh treatment. We are grateful and blessed for each day.
Joshua G., 14, Apollo Beach, Fla.
Joshua was diagnosed Nov. 13, 2008. Joshua was a very active, healthy 6-year-old until that October. He came down with a cough! The pediatrician and I both agreed that he had probably gotten bronchitis because I had just been on antibiotics for bronchitis. After two weeks of treatment Joshua wasn’t any better. He had lost a lot of weight and his stomach started to push out so I took him back to the doctor. It was then determined that Joshua’s spleen was enlarged. After ultrasounds and X-rays Joshua was diagnosed with a very large tumor that was sitting on his chest and starting to wrap around his heart.
We were immediately checked into the hospital and treatment began. Within three days Joshua’s tumor was gone! He was considered RER – rapid early responder. Within eight days of treatment Joshua was free of leukemia in his blood. Unfortunately with leukemia, treatment for boys is three and a half years. Joshua took some form of chemotherapy every day for that entire time.
Having a child diagnosed with cancer changes the entire family dynamic. We called it going into gypsy mode! Bags were always packed and ready for the hospital because we never knew when Joshua might spike a fever, which is an automatic admission. During that first year Joshua and I were in inpatient for 186 days. Every holiday and birthday was spent at the hospital. It literally became our second home.
Our family made some incredible friends during our journey and we learned that life can change with just a phone call. Every day is a blessing. Today Joshua is a healthy 14-year-old getting ready to start high school, playing hockey and hanging out with friends he met through treatment and new friends along the way! Joshua’s favorite saying during treatment was “Be strong and of great courage.” He still believes that today!
Lauren S., 9, Lakeland, Fla.
On June 24th, 2011, at the age of 3, our daughter was diagnosed with a rare, aggressive cancer called alveolar rhabdomyosarcoma. She woke up that morning with a stomach ache, like any other child does from time to time, so we thought nothing of the issue. By mid- morning, she was crying uncontrollably with severe abdominal pain.
I will never forget the look on the ER doctor’s face when he came back to give us her CT results. “We found a large mass between her stomach and her spine”, the doctor told us. Lauren should see a specialist at a children’s hospital is all I heard, the rest was a blur.
We arrived at St. Joseph’s Children’s Hospital around 4:00 p.m. The paramedics wheeled Lauren’s gurney through the automatic doors and down the hall on the first floor. The elevators were on the right and the sign in front of us read Hematology & Oncology. As we walked closer I prayed “Please God, turn right, please turn right”. We wheeled straight through the doors for the Oncology ward. My knees nearly buckled underneath me. They wheeled Lauren into her room where she was moved onto her bed which would be her home for the next three weeks.
Lauren’s oncologists developed her protocol. She underwent 43 weeks of chemotherapy and 29 days of radiation which she had to be anesthetized for daily. We hit some road bumps along the way; she lost a significant amount of weight during her radiation treatment, so she had to have a feeding tube placed for supplemental feedings; one of the chemotherapy drugs (Vincristine) caused neuropathy in her legs which caused her to use a walker and eventually a wheelchair; and, we were admitted many times throughout treatment for high fever and neutropenia.
Lauren has also had some post treatment side effects from the harsh chemicals and radiation. Her immune system was severely affected, so she developed multiple ear and sinus infections. Lauren eventually had to have her tonsils/adenoids removed and tubes placed in her ears. The Vincristine also weakened the muscles in her eyes which developed into strabismus. This required her to have surgery in both eyes. She has also been diagnosed with a low heart rate which is currently being monitored.
Through all this, we are so happy and blessed to say that as of May 24, 2015 Lauren has been in remission for 3 years. She recently graduated from every 4 months to every 6 months scan rotation. Lauren is our strength, our courage, and our hero. She reminds us daily to enjoy life moment to moment. Cancer is not prejudice; it can strike anyone at any time. We continue to fight along Lauren’s side and look forward to celebrating her 50, 60, and 70 year cancer-free anniversary!
Maybin H.,4, CUMMING, GA.
Maybin was diagnosed October 2015. We were living out in Seattle when she was diagnosed with a new house, two dogs and a cat. During the first month, Maybin did not reach the treatment milestones and her treatment plan was adjusted to a much more intense treatment. Being a single mom I had most of my family fly out to help take care of things that first month. We decided that in order for us to make it through the long journey ahead we need to be closer to family. At the end of the first month we re-homed two of our pets, sold our house, and moved to GA to be with her grandparents. The last year of treatment has been extremely difficult. We have been admitted to the hospital several times, rushed to the ER because of fevers, taken countless amounts of oral chemo and medicine, and gone into the cancer clinic weekly for IV chemo. Despite all of that we couldn’t be more grateful for the people we have met during this journey. Maybin has been a part of numerous events for cancer kids, which has helped her stay positive. In August of 2016 we reached Maintenance. This is the last phase of her treatment and we only have oral chemo and monthly clinic visits. She was able to start Pre K on time and has been very active in dance and play ball. She is truly taking advantage of the healthy days she has. She gets to look forward to ending her treatment February 24th, 2018. Maybin truly has a joy like no other and through all the tears and pain from both of us she has been stronger than she seems.
Millie S., 7, Bradenton, FLA.
July 1, 2013 was a day that turned into every parent’s and grandparent’s nightmare. Hearing that your granddaughter has a brain tumor will be forever etched in my memory. Little did we know at that time, but Millie had a predisposing genetic disease that caused her Optic Pathway/ Hypothalamic Tumor, Neurofibromatosis.
Millie has endured three years of chemotherapy since that day. She spent the last year of treatment inpatient every other week because of the harsh side effects of the protocol she was on at the time. November 6, 2016 was a great day that we celebrated in style. Millie ” Rang the bell” at All Children’s Hospital and we were looking forward to returning to a normal routine.
Sadly, that normalcy did not last long. In late February 2017, Millie came home from school and told us she had lost the vision in her left eye. She was already legally blind. A scan revealed the tumor had grown. We were put on watch and wait. Millie’s doctor felt the tumor might stop due to a hormone shot Millie takes daily now. You see, the tumor has damaged Millie’s hypothalamus and caused a surge in growth hormone. If left untreated, Millie could grow too much, a condition called Giantism.
As weeks went by, Millie began losing her appetite and sleep cycles were interrupted. We were anxious and had the MRI moved up. Millie’s oncologist, Dr. Stapleton, recommended that we return to treatment. Millie will have a biopsy during the month of July. Choosing a biopsy is risky, but hopefully will pay off by allowing us to choose a targeted treatment for mutations the tumor is harboring. There is not an end to this story. We will continue to walk in faith and live by Millie’s motto, “Today is the best day ever!”
Natalia R., 11, Land O’ Lakes, Fla.
In 2013, Natalia was eight years old when she was diagnosed with a localized Ewing’s sarcoma tumor on her left femur. She underwent a year of chemotherapy, limb salvage surgery, radiation, and multiple other surgeries as a result of her cancer. Her most recent surgery was this August of 2016. Natalia draws her strength from her Faith in God! She is currently 24 months (off treatment) and CANCER FREE!!! We are giving Glory to God for helping us get through the toughest fight of our lives!
Nick W., Tampa, FLA.
Nick was diagnosed with PNET, a rare form of brain cancer on Memorial Day, 2011. We were told he had a 50% chance of surviving 5 years. He underwent a craniotomy to remove a tumor the size of a racquetball. He had profound weakness on the left side of his body afterwards. He did his own physical therapy at home using a wii fit, and was walking again in less than a month. After he received 31 radiation treatments to his brain and spine. He had radiation burns, and he stopped eating, needing a gtube placed to give him nourishment. He then underwent 6 months of chemotherapy. He had many hospitalizations for infections and transfusions. His body showed what he went through with more than just surgical scars. He was beginning to have difficulty producing hormones, his spine showed damage from radiation, and he had lost the ability to write numbers and letters. But his attitude was fierce. He was determined to live life to its fullest. His MRIs showed no sign cancer during his treatment and for 9 months afterwards. His prognosis was not what any parent wanted to hear. Over 90% of children with relapsed PNET pass within a year, and less than 1% survive. Nick had a second craniotomy, cyberknife radiation, and started a phase 1 clinical trial, that was to be 26 months. During this time, we made as many memories as a family as possible, Nick tolerated his treatment well for 15 months. He then developed an autoimmune disorder which did not respond to conventional treatment. Unknown if his chemotherapy was involved, it was decided to stop. At this point, his MRIs showed no evidence of cancer for nearly 2 years, which is incredibly rare with relapsed PNET. Unfortunately, he relapsed quickly and was placed on hospice care in December 2014. Nick amazed everyone with his determination to keep fighting, but he passed May 10, 2015. As we often say, we have a Nick shaped hole missing from our lives that can never be filled.
Skyy m., 7, Charlotte, NC.
Cancer has impacted my family in so many ways. It has taken so many of my family members including my dad and grandmother within the last two years. Also within the last two years my only child was diagnosed with stage 4 wilms tumor two months after I suffered 3 brain aneurysms and survived them with surgery. Immediately after while trying to heal from the surgeries I tried to take in everything I needed to In regards to what needed to be done for skyy. A removal of her left kidney, special medications at home each week for 3 years so far. Many hospital stays because of her immune system bottoming out in addition to the many hammorages from her nose because of not having platelets due to the chemo. Every week she’s having to get between 2-4 transfusions with a compromised immune system because as soon as her blood counts reach a safe level she’s back in the hospital receiving chemo again. This horrible night mare skyy and I are experiencing I can’t begin to put in words how much depression and grief it’s caused. At times we’re forced to stay indoors because of her immune system being so low. There’s many family events she can’t attend because of it in addition she have to be home schooled because she’s unable to physically be in school because of her immunity. In addition to many other situations I can’t remember off the top of my head, there’s many of things we’re deprived of because I’m unable to work, 1 because I must take total care of skyy with no help and two the things I suffer with from my aneurysms. Being I was denied my disability because of not being able to make all of the appointments I need to for myself it makes things far more difficult especially our living situation. When we’re around other folks I always smile because I guess I’m trying to cover up all the pain and grief were going through. I pray everyday all day in hopes someday someway something will happen to keep us happy instead of sad the majority of the time. There’s more to this story of our life but at the moment I’m unable to remember because as I speak she’s having a transfusion now.