>CONTACT INFO: EMAIL: thejeremylukefoundation@gmail.com INSTAGRAM AND FACEBOOK:The Jeremy Luke Foundation

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>On September 15 2017 Aidan's mom decided to take him to the emergency room on a hunch something was wrong. He had been feeling sick the week before and had a limp although that went away the sick feeling did not. He was not himself at all he was actually telling his mom he was tired and wanted to sleep.(if anyone knows Aidan, he doesn't sleep) This was alarming. Fast forward three days and demanding we figure out why he wasn't eating they did a stomach ultrasound and a parent's worst nightmare came true. Aidan's mom said ¨ I literally felt like I was in a movie ,except this was real life¨ She was heading out to get lunch when the doctor asked if I would be long she said she knew right then it wasn't good she told the doctor It could wait ¨ I'm just waiting for someone aamd we would like to come in and talk”Is what the doctor told her. She notes that was it. She ran in the room looked at her husband and said¨ this isn't good ¨ he was mad because of course shes being negative right? unfortunately she was right. The doctor sat down and gave them the devastating news, ¨ we found a large tumor on his adrenal gland and we're pretty sure it's Neuroblastoma. ¨ She said the rest was a blur after that. After many tests they came back with the staging and Aiden has stage IV (4) high-risk Neuroblastoma. It is (was) all through his bone marrow, tumor on the adrenal, mass on the dura of the brain and lesions all over his bones and spine. He lost 1 inch of height and has three broken vertebrae. They have completed 5 rounds of chemotherapy mixed with immunotherapy, one major resection surgery. His cancer still wasn't clearing so they decided to transfer care to Sloan in New York City. There they have completed 4 out of 7 rounds of Immunotherapy and completed 14 sessions of radiation. On September 28 2018 Aiden had his first clear scan with No Evidence of disease (Also referred to as NED) This was short lived because he relapsed December 28th 2018. They are seeking further treatment and are looking option that their insurance will approve h1> Kid of the week #2: Luke

Luke was diagnosed with Type one Diabetes in 2010. Type One Diabetes is an autoimmune disease. Without going into the science of it your beta cells attack your insulin cells and your pancreas stops producing insulin without treatment the side effects can become permanent . Luke was 6 when he got a diabetic alert dog. The dog whose name is Jedi. Will alert Luke and his parents when he is low or high. Together they're fighting diabetes one day at a time.

Week 3 kid of the week: Julia

Days before Julia's cancer diagnosis she was just a normal kid. The only symptom she ever had was a stiff neck. No one would've thought what was going on inside her tiny body was one of the most aggressive and rare cancers there is. On October 31st 2018 they found a mass on Julia's brain. This wasn't the family's first battle with cancer either. While all of this was happening Julia's grandfather was losing a battle with Melanoma. On November 2nd 2018 she had a biopsy done. What'd they had hoped for (which was an infection) turned out to be wrong. On November 8th 2018 strategy struck Julia's family once again as her grandfather had passed away peacefully in his sleep. On November 9th they found her diagnosis and aggressive brain cancer called ATRT mortality is at 30% with treatment and with no treatment it would kill her. As of November 10th 2018 her treatment plan stood The first ideal step was surgery to remove as much of the tumor as possible."Unfortunately her tumor is in a very bad spot. Being near the brainstem is not in itself an issue, but the oncologist today explained that the problem is it's partially wrapped around/connected to her throat. Ear/nose/throat specialists will need to be involved, and they are currently discussing with neurosurgery if this surgery is possible, or if it's just too risky."(These were her mother's words) Whether or not surgery is an option, she will start 6 rounds of intensive chemo. We've been warned that this is VERY intense chemo. So intense that they respect guardians wishes if they decide not to do it at Chemo would mean 3-5 days inpatient at the hospital in philadelphia for the drugs delivered into a chest port she will have installed. And then "ideally" we are home for the rest of the month while the chemo works, her body recoups, and her white blood cell count is up for the next round the following month. Realistically though you have the chemo side effects and a mild fever is an emergency in her case, so it is unknown how much time she would actually be home. Normally with older people with ATRT they would do radiation but with her still developing brain that could cause side effects after treatment like taking the ability to walk,talk, and see. Rather to do radiation or not would be discussed at her 6 month check up. November 13 2018 cancer did not appear to have moved out of the original tumor. It didn't hire her survival rate but it also didn't lower it either. On November 14th 2018 her eyes went "weird" They wouldn't focus and went cross eyes they verified this was from the tumor. Her surgery will go on the following Friday. Her chest port was put in on November 15th 2018. On November 16th 2018 at 8:00 am Julia had brain surgery which last eleven hours and ended at 7:00 pm. The drs said the surgery was successful they were ready to proceed to the next step.On November 19th 2018 Julia had a fusion surgery. Julia had to where a brace called a halo for at least 6 weeks. On November 24th 2018 Julia's doctors were sure how to bring her out of sedation because of her breathing tube. They decided to switch her current breathing tube out with a more durable one. As of November 26th 2018 the switch went fine. On November 27th 2018 it's discovered Julia does not have ATRT she has a much more rare brain cancer one her oncologist (Whom has worked for decades) has only seen four time in his entire career. It's called clival chordoma. On December 3rd 2018 she came off the breathing tube. Unfortunately she had to be put back on the breathing tube December 5th 2018. Fast forward to December 12th 2018 th doctors decided it was best to have a surgery to have a trach put in instead of the breathing tubes feeling she was still to weak to break on her own. She also had a g tube inserted that same day.On December 15th 2018 a scan revealed no new tumor growth. December 18th 2018 a bacteria is found in her throat they upped her antibiotics. December 20th 2018 her left eye stopped responding to light and her left arm continued to be weird. Julia started physical therapy December 26th 2018. On December 31st 2018 they got the results of her last set of scans and it was not good the cancer was growing at an alarming rate. On January 3rd Julia finally got her halo brace off. It was on January 6th 2019 Julia's family had gotten the worst news possible. The cancer had spread yet again sense the last scan and she now had a week to live. Time skip to January 18th exactly 1.5 weeks after getting the terminal they had another MRI taken. They had also been using alternative therapies to try and slow cancer progression. January 19th the cancer continued to grow but not as quickly they are officially going to try chemotherapy to try and fight this. Januart 22 -January 26 2019 1st round of chemo starts and ends. January 27 a healing day of what they call a booster for Julias immune system. That's where we are now. If you pray please do so for this family they need it.

KID OF THE WEEK #4:Bradley

Bradley was very outgoing, happy, and loved to dress up “He’s also my hero because he’s faced many battles in his young life. “(his mom) He was born with a diabetes, with a blood sugar of over 400 and as far as we know his body has never produced insulin. So he has had an insulin pump since he was 6 weeks old. He also has problems breaking down and digesting food and has lived on a feeding tube and IV nutrition almost his entire life. The central line IV had to be removed in November due to a viral infection. He wasn’t allowed food by mouth until he was over a year and then only 2-3 tablespoons a day. He now eats everything and anything he wants but he still doesn’t digest it or absorb it properlyIn December of 2016 he was hospitalized for low platelets, was treated and life went on until June 2017 when his platelets dropped again. Between June and December he was hospitalized 10 times with low platelet counts, low white blood cells and low hemoglobin. He had to have 8 blood transfusions and 7 other transfusions in 6 months. Through all of this he has been a trooper and very brave. While he had his central line I could draw blood using the line and he didn’t have to get poked but since November he’s needed to get poked for blood draws and iv lines placed during hospital stays. During a 6 day stay, he had to have 7 iv’s placed and was poked 13 times for blood draws. He handled them like a trooper and still insisted on giving the nurses and phlebotomists hugs and high fives when they were done poking him The doctors had known since Bradley was only a couple of months old that he had an autoimmune disease but didn't have a diagnosis, genetic testing was done when he was about 4 months old, but found no answers. In November of 2017, just after his 5th birthday, he was finally diagnosed with a STAT3 GOF genetic mutation. This is a very rare condition with only about 35 people diagnosed world wide. To put this in perspective, a rare disease is any disease or condition with less than 200,000 people affected. From my limited research, not a lot of information out there, Bradley is the youngest to have symptoms present, he was born by c-section 3 weeks early due to weight loss. His blood sugar was 400 and he had trouble with digestion almost immediately. His symptoms have also developed more rapidly than anyone I have found. Many other patients don't develop symptoms until they are elementary school age or even teenagers. Many of the doctors that we see, don't know what condition they will find Bradley in, but they definitely did not expect the active, happy, energetic little boy that they found skipping and laughing when they open the door. Due to the early onset and rapid development of symptoms, the doctors feel it is important to be aggressive with his treatment. They have recommended a Bone Marrow Transplant and we have decided to follow their recommendations. He was tested to find possible matches in the bone marrow registry and found 9 possible matches. 5 were tested and one was found that was a 10/10 match, plus having the same blood type. Bradley had been going through a lot of testing to prepare for his BMT(bone marrow transplant). He has been such a brave little trooper through it all. He had blood draws, IV's, CAT scans, and many more evaluations with almost no tears, no meltdowns, and he has been charming everyone he meets. Bradley will be starting the process in the next couple of weeks with the insertion of a central line, an IV line that goes into the artery leading into the heart. He had one for almost 5 years but it had to be removed due to a fungal infection. The next day he will start chemotherapy for 3 days. A week later he will get a different chemotherapy and then the next week it is Day 0, he gets his new bone marrow. The chemotherapy is to destroy his immune system so his body will not reject the new bone marrow. His immune system is already severely suppressed from his own body destroying his blood cells. Because of the immune suppression he is very susceptible to infection and he is unable to fight off the infection. History: Bradley had come to live with his guadians when he was almost 3 months old and, 2 weeks later he was admitted to Johns Hopkins Children’s Hospital in Baltimore, MD. He was on the school age floor because they deal with diabetes the most, and that was his primary diagnosis. He was the youngest diabetic ever seen, at that time, at JHCH. We knew he had digestive issues and they were finally being addressed and that actually ended up being our biggest challenge. We started force feeding him 4 oz every 3 hours and sometimes it took the entire 3 hours and then we had to start the next bottle. Once a day they would allow to skip a bottle, so he could sleep without us force feeding him for 3 hours. The problem was, he was putting out almost what we were putting in, and it came out VERY explosively and 18-20 times and usually requiring a full wardrobe change! He wasn’t digesting anything, that’s why he wasn’t gaining weight. He was starving to death because he wasn’t digesting, or absorbing his food. I had been concerned that he wasn’t making any eye contact, he didn’t follow movement or respond in any way. I also noticed that he very seldom made any voluntary movements on his own. At times he seemed totally unresponsive, now we know he was probably unconscious at times. He was started on IV nutrition and a feeding tube was placed from his nose into his stomach. I hated the feeding tube because it was taped to his cheek and the tape irritated his skin, so that it was always very red and sometimes bleeding and that made it not stick very well. I removed it at times just so it would have to be replaced to the other side to give that cheek a break, and often he would pull it out accidentally. He started out at 3 mls of a very diluted formula an hour which means he received one ounce every 10 hrs. This gave his digestive system a rest and allowed it to heal, but just enough food to keep his digestive system moving and nutrition being absorbed by his gut. Once he started improving, the medical staff learned very quickly we had to proceed very slowly because when they tried to increase his feeds to quickly, he would relapse and he would need to start back at 3 ml. They would increase the calories per ounce by one, the first day and then increase the mls per hour the next, and the next day they would make no changes. Eventually we were able to bring Bradley home. He had a few more hospitalizations through the years for simple things until 2016 and the we started on our journey with STAT3. Sadly on 12/8/18 at 7:37 AM Bradley passed away. He fought so hard to live the life that was trying to be ripped away, he showed everyone what it’s like to be a hero.

> Jeremy's story:October 23th 2016 was the day they looked at my dad and step mom and said"Your child has Stage three neuroblastoma" from there he had 1 CT scan 3 MRI's, MIBG scans, 2 bone marrow biopsy,1 tumor biopsy, 1 hearing test, 1 kidney scan,1 central line placement surgery,40 home health care visits,22 dressing changes, 6 inpatient hospital stays,26 CBDI appointment,22 weekly or bi weekly CBC labs,countless critical blood counts,6 rounds of chemotherapy, a laundry list of prescriptions,1 NG" tube placement,numerous antibiotics,mulitple bouts of nausea and vomiting,2 centeral line repairs,3 trips to the er,more than 150 line flushes,1 resection surgry until he was announced... NED(no evidence of disease)