 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.
***MEDIA ADVISORY*** Golf Tournament Celebrates Child’s Life, Puts Spotlight on Rare Disease 11th annual event hosted by Liam’s Lighthouse Foundation to raise awareness and money for Hemophagocytic Lymphohistiocytosis (HLH) research. WHAT: Liam Schulze 11th Annual Memorial Golf Tournament WHO: Liam’s Lighthouse Foundation WHERE: StoneHedge Golf Course 55 Stonehedge Drive Tunkhannock, PA 18657 WHEN: Sunday, September 22, 2019 from 12:30 p.m. - 5:00 p.m. ET COST: $100 per golfer; $100 per team of 4 (fee includes green fees, cart, dinner, t-shirt, goodie bag, prizes); $30 for dinner only ATTEND: Register DETAILS: On September 22, 2019, the Liam Schulze 11th Annual Memorial Golf Tournament will be held at StoneHedge Golf Course to raise awareness about and money to support Hemophagocytic Lymphohistiocytosis (HLH) research. All proceeds from the tournament, hosted by Liam’s Lighthouse Foundation, helps to further cutting-edge medical research and find a cure for HLH. HLH is a life-threatening immunodeficiency that often go misdiagnosed or underdiagnosed as initial symptoms may mimic other problems such as common infections. Symptoms may include persistent fevers, rashes, enlarged spleen, liver and/or lymph nodes, etc. “Ten years ago we lost Liam to this horrible disease. HLH took my baby boy from the most beautiful blonde haired, blue-eyed, happy and active child, to a one that was unrecognizable and could not move on his own due to treatment. This horrible disease took everything from him and us,” said Michelle Schulze, president and founder of Liam’s Lighthouse Foundation. “We continue to celebrate my precious son Liam via the work of the foundation and at events like this year’s memorial golf tournament. The support from the community for the golf tournament and the foundation in general has been overwhelming and we are so grateful for everyone’s help in continuing Liam’s fight to make a difference.” Advanced registration for the Liam Schulze 11th Annual Memorial Golf Tournament is encouraged due to ticket demand. Event attendees will receive dinner, goodie bags, t-shirts, as well as other prizes as part of a raffle with prizes from local businesses. Anyone interested in participating, but not golfing, can attend the post-tournament dinner. To learn more about the Liam Schulze 11th Annual Memorial Golf Tournament, HLH and other histiocytic disorders as well as Liam’s Lighthouse Foundation, please visit www.LiamsLighthouseFoundation.org. About Liam’s Lighthouse Foundation Liam’s Lighthouse Foundation (LLF) is a non-profit founded in 2009 to support a grieving mother who lost her 20-month-old son to Hemophagocytic Lymphohistiocytosis (HLH). The foundation is focused on raising funds to support critical research for HLH and other Histiocytic Disorders, supporting families on their Histio journeys, and educating healthcare professionals, hospitals, and the community about the disease and treatment options. ### Media Contact Mary Sullivan Liam’s Lighthouse Foundation Mary@liamslighthousefoundation.org 401.339.2658 |
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