 Wishing you all a very Happy Thanksgiving Day!! 🦃💙 May your day be filled with love, fun, and lots of good food! 😍 We love you all!!
💙 Team Dynamite Special note from Jen: Thanksgiving Day is a day dedicated for giving thanks. I want to take this opportunity to express my thankfulness and gratitude. I am eternally thankful and grateful for Liam's Lighthouse Foundation (LLF) and everyone who has helped get Dynamites to our Histio Warriors and Angel Families. Michelle Schulze, Founder of LLF; Amanda & Eric Majusiak, along with the entire LLF team, and every single one of you have a very special place in my heart. Dynamite would not be where he is today without all of you!! Thank you all so very much!!💙🥰 With Love, Jen A few months ago, I was invited to attend Sobi’s Annual Employee conference in Nashville, TN, as a guest speaker to share Liam’s story. There was no doubt in my mind I needed to do this and was so honored to be asked to do so, but to say I was nervous was an understatement. I was terrified. Not only do I not like speaking in front of large groups of people, I didn't know how I was going to be able to speak out loud about Liam's journey to such a large group. Would I be physically and emotionally able to do it?! I got through it (I believe with the help of a little angel) and I am so glad I did it. The feeling I felt afterwards was one of great accomplishment. If I were to die tomorrow, I feel content in knowing that I made a difference by sharing Liam’s story and honoring his fight. It's a different kind of accomplishment than raising thousands of dollars with the help of so many and supporting our mission. It's a far deeper accomplishment. I cannot give him a hug or tell him face to face how much I love him and how proud I am of him. But doing things like this is how I continue to show my LOVE for him. Thank you, Sobi, for this amazing opportunity to educate others and to honor our son. And the biggest thank you of all to my mom for supporting me through it all!  Left to Right: Kathy Brewer [ECD Global Alliance], Amanda Majusiak [LLF], Dora Moustaka [Artemis Society for Histiocytosis], Michelle Schulze [LLF] We are excited to attend the 35th Annual Histiocyte Society Meeting in Memphis, TN USA. World-renowned experts dedicated to improving the lives of patients with histiocytic disorders meet to discuss the latest clinical advances in Histiocytosis Research. What is the Histiocyte Society? The Histiocyte Society, a nonprofit organization, is a group of more than 200 physicians and scientists from around the world committed to improving the lives of patients with histiocytic disorders by conducting clinical and laboratory research into the causes and treatment of this disease. What is the mission of the Histiocyte Society? To advance knowledge about and improve outcomes for patients with histiocytic disorders through clinical and basic research and education. What is the purpose of the Annual Meeting? The Annual Meeting of the Histiocyte Society allows physicians to meet with steering committees, present their latest findings and establish plans for implementing new diagnostic criteria or treatment guidelines. Learn More Our Part Liam’s Lighthouse Foundation, along with other Histio organizations are in attendance to understand the future publication trajectory, and plan for the next steps in funding research. We aim to bridge the gaps between patient organizations and physicians. How you can help: Sign up for emails to receive late breaking research information. Support awareness and fundraising initiatives. Participate in clinical trials. Participate in patient feedback studies.  After being ill all November and being turned away by 3 different physicians, stating his swollen eye was allergies, cold/flu symptoms, that his rash was fifth disease and his prolonged fever of more than 6 days were flu and fifth disease related. I knew it was more than a virus so I took Christian to the hospital where he was primarily diagnosed with Kawasaki disease (a disease commonly misdiagnosed for HLH). After 2 IVIG treatments his fevers weren't breaking but doctors were noticing his levels were increasing by thousands. On December 7, 2018 he had his first bone marrow aspiration to rule out leukemia, he came back negative but his hematologist said he had 6 out of the 8 symptoms for HLH and due to it being so rare he needed to be treated as if he had it for the sake of saving his life so that night our sweet boy began chemotherapy, high dose steroids and retuximab which was for his Epstein-Barr Virus that was extremely elevated. He responded so well, fever finally broke and his rash was gone. Our son responded so well he went into remission in March but unfortunately his EBV levels weren't going down like they would have expected, they recommended a bone marrow transplant, in April we met with the BMT physician from Texas Children's Hospital in Houston, Tx. She said it would take at least 2 months to find a donor but that a transplant was necessary due to the fact that his EBV could trigger his HLH again and possibly be worse. Of course we agreed to it, we wanted our sweet boy to live. Mid-April our son was granted a Disney trip with Make A Wish and we also were told they had found a donor and needed to be in Houston in May. So as soon as we landed back home we drove to Houston the following morning and my sweet boy and I stayed. May 15th, they began his "conditioning" to prep him for his transplant date May 30th and on that day he did well, a few complications but they were controlling his viruses with medications, so they thought. June 29th, it was brought to my attention that his EBV was still in his system but that they were waiting for his new cells to kick in and attack the EBV, his Adenovirus and enterovirus. July 2nd came and our sweet boy was able to leave and come back 3 times a week as an outpatient, he was so happy and I was even happier to finally sleep in a bed with him with no machines beeping or nurses coming in and out. Unfortunately his discharge was short lived, July 7th his belly distended so much it worried me so I took him into the ER to get him checked out and he came back positive with a very resilient UTI, one that needed to be given a very special antibiotic and a few days later his stool culture came back positive for C Diff, a bacteria we all have but can be very dangerous for someone who's immune system is compromised like Christian's was. His infectious disease doctors were able to give him a medication to help him out but our sweet boy's belly wasn't getting any smaller, our son needed a colonoscopy to do a biopsy of his intestines to rule out GVHD, a few days to almost a week later our son began having very bloody stools, platelet transfusions began to become a daily transfusion until he began bleeding bright red again that's where they decided to do another colonoscopy, his biopsy sites were bleeding. They were able to fix them but they didn't last long and we noticed a lump behind his left ear and 2 under his armpit, they did a biopsy on the one under his armpit and by then I had done my research and everything I read wasn't good, I spoke to my husband about what I read and how our son was showing signs of being tired because by that time he was pushing, hitting and yelling at staff to not touch him. He had always been so compliant and after all he had been put through I understood my sweet boy was tired, his belly was becoming painful and nothing was helping. Once we received the results from the biopsy which came back as PTLD Lymphoma, I knew there wouldn't be any options and if there was it'd be risky, they gave us 3 options, 1. Do nothing 2. Attempt attacking the Lymphoma aggressively but risk his quality of life by intubation, dialysis, basically put him through hell and for him to not make it out alive either way 3. Give him a milder chemo and begin steroids.. We wanted our son to go down fighting if need be so we chose option 3.. 4 days later we get told the chemo did nothing and in those 4 days our son was placed on oxygen and his oxygen levels was decreasing even while he was awake, they told us he had a few days to maybe a week but didn't have much time left. So we decided to keep him as comfortable as possible, he still complained about pain in his belly so they increased his pain medication, 3 days later our son began to show signs of being close to his time so we held and kissed on him a little longer every chance we got, he would wake up and ask for soup and milk until his medication was increased to the point where he slept and he held on as much as could and as he did that I held and sang told him it was ok to let go to go be with Jesus and I promised to see him soon. August 16, 2019 our son held the hand of God as they both walked into heaven. Join us in raising awareness this September during Histiocytosis Awareness Month by sharing the stories of your Histio Hero. Complete the form here.
Meet Your Mascot!Dynamite the Histio Warrior Dragon Mascot will travel to Cincinnati this weekend for the 2019 Histio Family Conference at the Cincinnati Zoo & Botanical Garden  Physicians and other healthcare providers will gather on Friday, Sept. 20, at the Cincinnati Zoo for an in-depth workshop where they will learn how to diagnose and manage patients with hemophagocytic lymphohistiocytosis (HLH) and Langerhans cell histiocytosis (LCH). Leading experts will discuss the latest research findings and treatments, and what is on the horizon for these histiocytic conditions. Patient Families and Physicians will gather for a private event Friday evening at the Cincinnati Zoo & Botanical Garden where Dynamite the Histio Warrior Dragon will make an appearance! Saturday, Sept 21st a Family Conference will provide general information to patients and families in the histiocytosis community as well as an opportunity for families to learn and connect with and support one another. The "Dynamite Care Clinic" table will provide coloring pages and check up stations for stuffed Dynamites. Please Note: Dynamites will not be available for request pick-up in Cincinnati and will be mailed to their residence after this event.  Boo Histio! 2019 Glow-In-The-Dark T-Shirt CampaignBy ordering a shirt, you will help ship a Dynamite to patients with Histiocytosis around the world! The Dynamite the Histio Warrior Dragon Program Re-Launches just in time for Histio Awareness Month and Dynamite's Birthday! See Dynamite the Mascot in Cincinnati September 21st!  As many of you know the Dynamite Program has had some struggles with funding; the request system has been down while we worked to improve the technical side of things and raise the funds we needed to continue the Dynamite Program.
Well, thanks to everyone who has donated and many long work hours, WE ARE READY! Dynamite’s new and improved system is OPEN for your requests! There are, of course, some requirements that must be met to ensure all our Histio warriors receive their Dynamite efficiently.
So far the Dynamite Program has donated over 600 Dynamites to Histio Warriors around the world! We are committed to reaching every Histio warrior who would like to receive a Dynamite. Please help us by donating and/or sharing our Facebook, Instagram, and Twitter pages. Thank you all so much! We greatly appreciate every single one of you!! Jennifer, Director of the Dynamite Program To increase awareness of HLH and support for families, Birmingham Women's Hospital, UK will host two parallel conferences on HLH this September: one for medical professionals and one for families of children with HLH. These conferences are supported by funds raised by the Mole family and friends in memory of Tom. Start: 21 September, 2019 at 8:30am End: 21 September, 2019 at 5:00pm
The day before Halloween in 2017 my 9 week old son spiked a 102.5 fever. He was a premie, born 7 weeks early. It was concerning he had a fever, not only because he was so young and we were good about keeping him isolated and away from viruses, but also because he did not have any other symptoms that would indicate he had caught a virus.
After about a month of frustrating hospital visits, fighting with doctors to get him admitted, declining labs, multiple blood and platelet transfusions, and a PICC line placement, our son received the diagnosis of primary Hemophagocytic Lymphohistiocytosis commonly known as HLH. I remember the day the doctors first mentioned HLH. It was before they did a bone marrow biopsy. The doctor was talking with us and said they are looking at two possible diagnoses, leukemia or HLH. I had never heard of HLH before, but in that moment I remember thinking, “anything is better than Leukemia so hopefully it’s HLH.” Once the doctor left the room I googled HLH and the first thing I found was about a family who lost both of their sons to HLH. I read about how the lack of awareness often led to a misdiagnosis and a quick death. I read that if it was primary HLH he would need a bone marrow transplant. I was so scared. This was all very overwhelming. As we were waiting for Nolan’s official diagnosis and genetic results to return I found an HLH support group on Facebook. This group connected me with so many people and organizations who were out there to help us in any way possible. It was so amazing to connect with people who understood what we were going through. It was a light in such a dark time. Through this group I heard about Liam’s Lighthouse Foundation and Dynamite the Histio Warrior Dragon. We received Nolan’s histio warrior in the mail about a month before his transplant! We chose Dynamite to be blue to represent HLH, but blue has actually become Nolan’s favorite color!
We do our best to share Nolan’s story to help encourage others and fight alongside them just as we had so many people in our corner during Nolan’s HLH battle.
Join us in raising awareness this September during Histiocytosis Awareness Month by sharing the stories of your Histio Hero. Complete the form here.
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Liam's Lighthouse Foundation - 5818 Charlois Court | Colorado Springs, CO 80922-2226 USA
EIN # 27-1309152
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