Dylan is 8 years old and was diagnosed with (ALL) Acute Lymphoblastic Leukemia (VHR) in December 2015. This was especially hard since his mother went down this same road with her mom who eventually passed from Leukemia. Dylan has 3 siblings who all adore him and without a doubt, he is the entertainer of the family. When your told "Your child has Cancer" your entire world turns upside and things revolve around saving your child. That means bills start piling up, rent falls behind, food gets low, etc.... all your time is spent at the hospital or in clinic watching your child get chemo. New treatments are desperately needed to treat our children and funding for research is the only access to new drugs!
On June 27, 2016 Charley and her friends were swimming in the neighbors pool, eating popsicles and enjoying the first few days of summer vacation. The next morning Charlie woke up with a small strange bruises all over her forearm. With no other obvious issues her parents called the doctor. Blood work was ordered just to be on the safe side and hours later the family was sitting in the emergency department with the doctors explaining that Charlie has leukemia. Just like any other parent, Charlie's weren't prepared to hear your child has cancer.
At 3 1/2 Charlie was diagnosed with B-cell acute lymphoblastic leukemia, ALL. Her course of treatment is on track to be completed in September 2018, making her 6 1/2. Most of her treatment is done weekly in the clinic at Rady Children's Hospital. During this time she will undergo numerous lumbar punctures blood draws in a variety of chemotherapy.
Surprisingly Charlie is your typical four-year-old. She loves her family and friends, Loves to ride bikes, and play dress up. She will do anything for a good laugh, even if that means getting in trouble. What her parents admire most about Charlie is her strength, humor and her ability to see the joy and happiness in every situation.
Cancer does not discriminate, it affects all ages, genders, and races. Their greatest wish is that the cancer research done today would be so successful, that no family ever has to hear the words that their child has cancer.
Hazel was a typical 9 month old, enjoying learning to crawl all over and busy playing with her big sister Raya and their dog, Zara.
Her mother took Hazel for her well baby check-up and took some blood to check iron levels. They were borderline low so were told to go to Rady Children's Hospital for some more blood tests. It was Monday, August 3rd, a day they will never forget as they were called to bring Hazel to the hospital for more tests. The next day Hazel's bone marrow was checked check for Leukemia.
Ten days later on Thursday, August 13th, they got the news that Hazel had Acute Myeloid Leukemia (AML), a rare form of blood cancer that only 500 kids get each year. They were admitted into Hotel Rady on Sunday and for the next 5 months Hazel went through intense chemotherapy to get her into position to receive a bone marrow transplant. Everything went well that Hazel achieved remission.
Unfortunately Hazel relapsed and dispite every efforts made, she recently passed away. She may have been little but she was the fiercest Warrior of them all! We miss you sweet Hazelnut xoxo
One day Myer was riding his scooter and got a scrape on his knee, which got infected. They were given antibiotics and told it would take care of things. However it turned into stomach pain and when they went back to the doctor they were told it was a virus. So after his fever was 104.0, so he rushed him to the Rady Children’s Hospital ER where they took a lot of blood tests. Ok that day, October 26, 2015, it became the longest day of their lives and the most life changing day as their 4 year old son Myer, was diagnosed with ALL (Acute Lymphoblastic
Myer was immediately rolled up to the second floor of Hematology Oncology floor and were given a room and told they would do a bone marrow test in the morning to get the official diagnosis. They were stunned, exhausted, and hoping it was all a big joke and everything was going to come back fine. Unfortunately that wasn't the case.
So what comes next you ask? You step up to the plate and fight. Somehow Myer seemed to know that something serious was wrong with him so he handled the news like a champ. They helped him create his own Superhero which has helped him all of us through this entire journey. He created the name Superboy and a logo of a triangle with green stripes and an orange lightening bolt in the middle to show his strength and fight against Leukemia! Those who fight along with him are a part of the Superboy Crew!
After their initial week in the hospital they had to get used to their new life back at home. Myer had been going to Pre-K full time, and now he wasn’t able to go anymore and he was home with his mom full-time. They were also isolated from most of their friends because his immunity level was so low that he could get sick very easily. From day one of this journey they lived by the motto "One Day at A Time" and that has been what has gotten them through many tough times.
"They say that Leukemia is random and there is nothing that we did or could have done to prevent our son from getting it. I believe we all get something in this life and this is what we were given at this point in ours, so we are doing our best to live the life we were given! Myer is in the Maintenance phase of his treatment and now goes in once a month for chemo and is in full remission and is doing great! He started Kindergarten last week and is playing baseball again!" Said Katie, Myer's mom
Although Myer is in remission, he will continue on his treatment plan until February 22, 2019 and he will be medically followed for the rest of his life. At the end of the day, cancer should not be what defines these kids. They are so much greater than their diagnosis and with your generous fundraising efforts we can continue to make sure they can enjoy just being kids and take one day at a time knowing there is hope for their future!
Gideon was a typical high energy, playful, somewhat mischievous 5 year old that had been in good health, nothing unusual there. Then in August, 2015 he was diagnosed with CRMO (Chronic recurrent multifocal osteomyelitis). It's a mouthful, but basically it's his body attacking his bones which accounted for the pain and inflammation.
A couple of weeks before his next appointment he was feeling tired all the time, looking even more pale, but they said that it was probably because of the CRMO so they ran blood tests. The following day they received a call that you don't want to get... they needed to go into Rady Children's Hospital in San Diego as fast as possible. They began immediate transfusions of blood and platelets, and started more blood work screenings. The next day we received the shocking news, they found lymphoblastic leukemia cells. After a couple of days of waiting in agony for further test results, they for the details they never thought they would hear. "Gideon has ALL (Acute Lymphoblastic Leukemia), type B."
The news was a hard pill to swallow at first, but with the help of Rady Children's Hospital San Diego and further research we learned that with his age, and that we caught it so soon, there is a 90% chance to cure him in the next 3 1/2 years. There will be weekly visits to Rady Children's Hospital and a daily regime of medications, but we are all grateful for this, it is hope in the middle of bad news.
He's been a trooper through this all, taking his meds and going through procedures with little complaint. His strong will and determination is an inspiration. Even receiving the nickname "IRon Gideon"... he is a REAL Superhero!
Sophia was diagnosed with ALL, Acute Lymphoblastic Leukemia, July 22, 2015. Sophia had nothing short of a spiraling journey that is Childhood Cancer. When she was DX we thought that we would just breeze thru the treatment since they stated she had testing completed that told the Doctors that the cancer would respond to treatment. What they didn’t tell us and they don’t know that she might not respond well to the treatment. Sophia's journey had been a rocky one, she is allergic to two of the medication that treat the Cancer, has side effects from most of her medications and after 2 rounds of high dose Decahedron ( Chemo), she was diagnosis with osteonecrosis of the hips and knees, a painful disease caused by lack of blood flow to the bone. This a rare reaction , which happens after long term use, but for Sophia, it happen after just two doses, the last being in Feb of 2016. In January 2017, she was diagnosis with a collapsed femoral head of the right hip with new signs of disease in the left hip. She will need hip replacements but not until after treatment is finished at the end of this year. She spends lots of time in bed due to the pain, but she refuses to let it stop her from school and being active.. Sophia was a very into sports, competitive cheer but most of her loves, Gallo and Wildfire ,her horses. She is active in her community speaking out against the effects of Childhood Cancer and helps to raise money for local charities, she is Miss Teen Mountain Empire, involved in FFA (Future Farmers of America) and hold a 3.75 GPA thru this whole adventure. She is an inspiration and a joy to us all.
Bob was diagnosed with stage 4 fNHL In December 2003. Incurable but treatable. - until it stops responding. He had chemo every 6 months until 2012, when it stopped responding to the chemo. The only option was a bone marrow transplant . However we were told that his cancer was so rampant, that he couldn't have a transplant. They sent us home...
Three weeks later the UofM contacted us and said there was a phase 2 clinical trial , research study specific to eradicate fNHL. Bob would be the 5th person to receive the protocol. The only required eligibility was that you had no other choices.
The research study was with NK (natural killer ) cells. The concept was that Bob's NK cells no longer recognized the cancer as "foreign" so they quit fighting. We needed someone else's NK cells, to hopefully come in and knock the cancer down by at least 50%. Both of our children were a match for Bob and Austin (because of his size at the time) donated his NK cells. The protocol was 3 weeks in the hospital, and to give Bob the same amount of chemo over 6 days, that they normally use over 6 months, 3 weeks apart. Then on the 7th day, transplant Austins NK cells .
With no infections, Bob was out of the hospital in 3 weeks, on schedule. Further scans showed that the study had worked. Bob could go to transplant!
Drs like to have the patient in remission for 90 days, to recover, before transplant. However given the past lack of response to the chemo, they sent us back 30 days later for transplant. The transplant was the same protocol Bob had 60 days prior. This time it was excruciating. Normally bone marrow transplant patients are in and out in 30-45 days. Because of all the prior chemotherapy Bob's Cells were not growing back. 45, 50, 60 days went by but nothing was happening . At about 66 days the numbers were low but the Drs told bob that even with the low numbers, they thought he should come home. The next day - his numbers were moving ...
It's been a long slow recovery, with few bumps in the road but Bob is 4 years out as of 2-07-17.
No Meds, no restrictions and just starting to get his stamina back and do everything that he used to do. We are so blessed to have had the love and support of so many family and friends in the Arabian horses. God is Great!!!
On Aug. 8, Cate was diagnosed with ALL (Acute Lymphoblastic Leukemia) at Rady's Children's Hospital in San Diego. It is hard to believe this active, funny, feisty five year old was learning to surf in the California sunshine days before her life altering diagnosis.
This precious girl is gearing up for quite a battle. Her medical team believes her outlook is hopeful, but her treatment plan is going to be a 2.5 year journey. Those who know Cate recognize her feisty warrior princess spirit and phenomenal support system will undoubtedly carry her through this challenging time. But the Kingston family has been told to expect the unexpected -- often by taking two steps forward and one step back.
So much GRATITUDE and HOPE for this precious warrior! So battle ready and onward! #CATESTRONG
At 10 months old Emma James started bruising easily, she was extremely clingy, and wouldn't let me put her down. At a regular checkup I mentioned the bruising to the doctor. They drew blood and ran a CBC. 4 days later I got a call insisting I rush her down to Rady Children's Hospital. Her platelet count was 26,000 when it should be 150,000-450,000. After numerous tests, scans, and bone marrow aspiration and biopsy. we received the news that Emma had AML M7, a very aggressive form of leukemia. Emma had a 50/50 chance of living. Treatment started immediately. She had a Hickman line placed to administer all the different medications. Emma went through three rounds of Chemotherapy and a bone marrow transplant was necessary for her survival. Each round of chemo consisted of 7-10 days of administering anywhere between 4 to 5 different toxic chemotherapy medications to wipe out her leukemia filled bone marrow. After the chemo administration we would wait for her blood counts to bottom out... then climb back up. It usually took 25-50 days. During these days Emma would experience endless side effects nausea, vomiting, rashes, mouth sores, fatigue, hair loss, diarrhea, muscle and nerve problems, and neurological changes. She would be immunosuppressed for weeks at a time, which meant we were isolated to our room on the hematology floor. She developed C Diff 3 different times. Emma has went under sedation more than 8 times for lumbar pictures and bone marrow biopsies. She had to have two Hickman lines, and a port implanted and removed due to line infections. We received news that they had found a 22 yr old German male as her bone marrow match. The chemotherapy she received right before her bone marrow transplant was extremely toxic. It wiped out her bone marrow in order to infuse her new donor cells. 10 days after the donor cells were administered Emma developed a very awful rash all over her body. The blood vessels to her liver were blocked which caused her liver to go into failure. We were sent to intensive care unit. Her liver swelled up to 4 times its normal size, her kidneys were on the verge of failure, she was teetering on being intubated and put on dialysis. She had a Foley catheter to empty her bladder. She was on a bipap machine to help her breathe as she couldn't do it on her own. She had feeding tubes, and the fluid she was receiving were an input/output battle for weeks because her kidneys and liver weren't functioning properly. She had painful mouth sores that went all the way down her esophagus. She had the most hideous painful rash all over her body. She was so jaundice she looked green. We were so very close to losing her that the doctors had started discussing Hospice/ end of life care. My daughter was in a coma state for over a month. On easter morning she finally opened her eyes. She had to get physical and occupational therapy... relearn to walk, talk, eat, and function like she did prior to this nightmare. 7 weeks after she woke up we were discharged to go home. We are now a year post bone marrow transplant. She's had a bone marrow biopsy every 6 months to make sure her bone marrow is 100% donor. We have 1-2 doctor appointments a week. She sees her oncologist, dermatologist, urologist, and occupational therapy. She's been immunosuppressed for 8 months... no crowds, dirt, or germs. She can't be in the sun due to medication and graph vs host disease. Graph vs host disease (gvhd) has been the most harsh side effect from transplant. She can't be in the sun or the gvhd flares up which causes inflammation in the gut, or a severe rash on her skin. The GVHD can last months or even a lifetime. She's on 7-10 medications twice a day, and we have to put creams on her multiple times a day. While it's overwhelming and feels never ending we are forever grateful the cancer hasn't returned. Even after transplant she still has a 50% chance of the cancer returning. Cancer has turned our lives upside down but we have learned so much during this journey. Most importantly just how precious this life we are given can be and to not give up.
On January 15, 2016, Kelly and Jared took their daughter Kaylee to the Emergency Room with a fever of 106! They were told at previous doctor appointments that Kaylee just had a virus. However, Kelly is a nurse and more importantly a Hemoc nurse. So she followed instincts and after continuous pressing for answers, a blood panel was ordered and an IV was placed. Results came back with irregular "blast" cells in Kaylee's blood and instantly Kelly knew her daughter had leukemia. After a bone marrow test it was confirmed, Kaylee was diagnosed with Acute Lymphoblastic Leukemia (ALL).
Kaylee is currently in the maintenance phase of her treatment and starting to get back into the routine of a typical 3 year old. However she is constantly at risk of being around anyone who is sick, even a common cold, as her immune system is still compromised. These kids and their families dealing with leukemia it literally changes the way you view germs and the sound of someone coughing is alarming.
As part of Kaylee's treatment she has to take steroids for 5 days every month. It is very difficult for Kelly and Jared to watch their happy little girl struggle with emotions that can last about a week. It's a huge side effect of the steroids. These kids really go through so much. Kaylee will continue with her treatment until mid year of 2018!