**Disclaimer…just so no one misunderstands the intent of this letter. I am not comparing cancer and histio, not weighing one against the other. I do not think one is better/worse than the other. I buried my father in 2005 at the age of 54 courtesy of a 13 month battle with cancer. I hate them both equally. I have suffered through them equally.
“At least it’s not cancer….” If we as a collective group of histiocytosis parents had a dollar for every time someone uttered that phrase, we could probably fund histiocytosis research a thousand times over. It almost always comes on the lips of someone only trying to say something positive, to sound upbeat, to make it better. Unfortunately, it’s like raking us over hot coals and makes us want to cry.
And it is ABSOLUTELY NO ONE’S FAULT. If you have received this in a link, or this letter itself, asking you to read it, that’s the first thing we want you to know. We are not angry at you, not by a long shot. 10 minutes before our children were diagnosed, we probably would have said the same thing to someone else…we had no clue. Some of us even had DOCTORS who said it. But that’s what we hope to change, to bring about the awareness of what this disease really is, so that this phrase doesn’t keep being uttered to histio parents across the world. That’s why you received this link.
I’m not going to delve into all the discussion about why some doctors do actually classify it as a cancer…there are scientific reasons, and not all doctors agree yet. But honestly, it just doesn’t matter to me as a mom what they call it. I know what it does, and that’s what matters. So…what does it do?
It causes lesions and tumors in various areas of the body including, but not limited to the skeletal system, brain, lungs, kidneys, liver and spleen. Those are the most common areas. These tumors and lesions can cause numerous health problems leading to organ failures that sometimes require lifelong medications and/or transplants. Histio diseases are treated a combination of one or more of the following…surgeries, steroids, radiation, chemotherapy and bone marrow transplants. The various forms of histio have different survival rates and recurrence rates, but they all share one commonality…they suck. They reap havoc on the bodies of those they afflict. Now, that’s all the technical stuff, let’s talk about what it *really* does.
My name is Kim and my son Dakota has been fighting histio for a little over 2 years. I’ll spare you the details of the 9 month struggle to get to this diagnosis; I’ll just say it sucked. So here we are 2 years in and this is what Dakota’s has been through to date…
-A water deprivation test…awful, pitiful test conducted in ICU where he lost 5% of his body weight in 2 hours to diagnose a secondary rare condition caused by the histio called diabetes insipidus (his kidneys don’t function properly because his pituitary doesn’t make the right hormone telling them to).
-5 brain MRIs, to keep tabs on the lesion in his brain that did the aforementioned damage to the pituitary.
-A lumbar puncture to rule out other possible cancers. From this he had a fluid leak that caused him extensive pain and he to be admitted to the hospital for 5 days to lay flat while it healed.
-A skeletal survey (26 xrays of his body), lots of other xrays, a PET Scan and a CT Scan…all to look for lesions or tumors in the other ump-teen places histio can strike the body.
-Surgery to place his port for chemotherapy. Upper GI scope with biopsy.
-9 rounds of IV antibiotics, most of which make him really sick. More ER trips than I can count.
-In two weeks he will begin round 8 of his 12 rounds of chemotherapy. 5 days in a row once every 4 weeks. Next week he’ll have an MRI of his back, and once again he’ll be under full general anesthesia for the 10th time in 2 years.
Histio attacked his pituitary which has now left him with, as I said before, no ADH hormone to control his kidneys, no thyroid function, no growth hormone, and possibly no puberty hormones, still not sure on that one. He will take medications for his kidneys and thyroid for the rest of his life. Chemo is rough at best.
And he is SOOOOO LUCKY.
I’d like to share with you the stories of two of our histio warrior friends, Ian and Sean.
Ian we actually met for a brief moment crossing paths in a waiting room, ONCE. It was the only time we would ever, in person, see another histio patient in a treatment facility. There just aren’t that many of us. However his mom and I belong to the same online group for families fighting histio. Ian went undiagnosed for most of his life, enduring many of the same problems as Dakota… diabetes insipidus, thyroid issues, loss of growth hormone, and so on. Only no one realized why. They missed it, completely, for 17 years. Seven specialists in two different states missed it. What happened as a result to Ian is called neuro-degeneration. It is, quite simply, the rotting of the brain. Cells start to die off. Patients can experience loss of functions such as walking or talking. They can be unable to feed themselves or suddenly forget where they are. The range is broad. The far end of the range is death. THIS is what keeps me up at night. THIS is what makes me cry suddenly for no apparent reason. For many histio patients, this ND can come years after treatment even. And for those of us with kids with histio in the pituitary, risk of ND goes up to 50%. FIFTY.
Once Ian finally got a proper diagnosis, he began a chemo protocol and has seen some improvement. But it is chemo, and it has its own risks. Ian suffered anaphylaxis during treatment…they think from the chemo meant to help save his life. It took some re-working, a different chemo and he is doing much better. While Ian’s mom rejoices in the miraculous strides he has made, nothing will ever take away the fear of what’s next. Will this hold up? Will he backslide? Will new lesions or tumors come back? This is their reality.
And Ian is lucky.
Sean is another of our warrior friends whom we have only met online. When only 5 per million a year are diagnosed, you don’t exactly *bump into* each other around town. At the time I read Sean’s story I nearly died on the spot. I absolutely cried. I had been seeing and hearing the same things you have…it’s not cancer. So in my mind…this wasn’t going to be that hard. Well, hard, but doable. At this point I’m still thinking *if* Dakota has to do any kind of treatment it won’t be rough and he’ll still be doing all the normal things all kids do. Then Sean. And truthfully, thank GOD for Sean, because he quickly opened my eyes to what I needed to face, the reality of this disease and what it can do.
I was directed to a photo album of Sean’s journey and this is the *description* on his album:
Two (2) destroyed & transplanted lungs, One (1) destroyed & transplanted liver, One (1) destroyed thyroid, One (1) damaged pituitary gland, Eight (8) pneumothoraces (collapsed lungs), Twelve (12) chest tubes, Sixteen (16) ERCP's with stent placements in bile ducts, Three (3) PICC lines, One (1) Hickman, One 6 month round of chemo treatments and one 12 month round of chemo with three radiation treatments. Two (2) ports (Outgrew his first by the end of the last chemo and I wouldn't let them just pull it since we will probably need it again), Hundreds (100's) of x-rays, CT scans, MRI's, Dexa Scans, Upper GI's, MRCP's, HIDA scan, etc, etc, One (1) GJ tube, One (1) Insulin pump, Hundreds (100's) of injections of epogen, insulin, desmopressin, growth hormone, Two (2) mastoidotomies, One (1) open lung biopsy, One (1) ASD repair, Two (2) skin biopsies, One (1) bone marrow biopsy, One (1) lumbar puncture, Five (5)+ bronchoscopies
And this…this is Sean. *Not for the faint of heart…
Yes, all 3, the same child. I’m pretty sure at this point I don’t need to elaborate much on Sean’s story. You can see all the pain and anguish right there. Except to tell you his battle has gone on since 2004. In 2013, Sean received his last treatment in July…barring any future recurrence, again. His mom will worry about every.single. little ache and pain that comes along for the rest of his life.
And Sean is lucky too.
These three boys are considered lucky because their names are not on this list…the ones we’ve lost.
What makes this SUPER hard is the lack of patients. That’s just HORRIBLE to say, we know. And we don’t wish histio on A-N-Y-O-N-E. But the sad reality is, if there were more patients, there would be more research, there would be more support. I’ve been really lucky that my fellow *chemo moms*, as we call ourselves, here locally have been SOOOO supportive. They recognize that despite what classification histio does or does not receive, it’s been pure hell. They see Dakota get deathly sick… just like their kid. They see him admitted and hooked up to all the IVs, they see his hair thinning, they see him crying from the aches and pains, they see how pale and grey he looks. As far as they are concerned, he is one of theirs, I am one of them.
But the difference is, they can share in the knowledge/hatred they have about one another’s diseases. Your kid has leukemia, mine too. Neuroblastoma…yea, us too. What protocol are you on? Have you had this side effect or that? What’s his/her *disease specific cell count*? No one…ever…says histiocytosis…yea, us too. No, never. They ALL say, “I’ve never heard of that.” Even our nurses say it, and most doctors have only READ about it. If you are unlucky enough to be admitted on a teaching day, you are the rare freak show all the med students *hope* they get to see. Awesome. And don’t get me wrong, NONE OF US *want* to be in ANY of these sucktastic clubs. But it’s really hard not to be around anyone who knows the specifics of what you deal with, what you face. Not to be able to look someone in the eyes and know they have been where you are. They know what your road is like. Again, my fellow chemo moms have been a blessing, not all moms and dads in other areas are so lucky.
Every trip to the endocrinologist’s office has us in the waiting room with other diabetic children…only theirs is NOTHING like ours. Parents will ask…”what kind of meter do you use?” I smile and say…”it’s not that kind of diabetes, it has nothing to do with blood sugar.” I quietly look at my phone and some will just say, oh, didn’t know there was more than one…others ask…well what is it? My response usually leaves them kind of shocked as they go…oh, wow. ---Never heard of that.
"Never heard of that" -- That’s the world we live in, that’s our reality.
So if you have read all of this, I thank you. Seriously, sincerely and with many thanks. And what your friend wanted you to learn from all this…wait, needs, you to learn from all this, is that “at least it’s not cancer” sooooo doesn’t make this any better. Even if they are only dealing with a single bone lesion, or single skin lesion *right now*…all of the above, is what they know is *possible.* It’s what’s laying in wait, and they will never, ever know if or when it is going to rear its ugly head and be unleashed on their child.
So say something commiserating…
“Man that SUCKS”, “oh, that’s just awful, I’m going to cry with you!!”
Say something supportive…
“We will pray for you all.” … “Is there anything we can do?”
Just don’t say … “at least it’s not cancer.”
With love and thanks!
--- mom of histio warrior Dakota, and all other histiocytosis parents.
**Disclaimer…just so no one misunderstands the intent of this letter. I am not comparing cancer and histio, not weighing one against the other. I do not think one is better/worse than the other. I buried my father in 2005 at the age of 54 courtesy of a 13 month battle with cancer. I hate them both equally. I have suffered through them equally.
You can follow many of us on FB, or find more info on the web.
Here are some links to some of the people you heard about above…
Owner Leigh Ann features Histiocytosis Awareness items on her website Bull Frogs & Beauty Queens . Read below for more information on BF&BQ and how you can snag one of these histio bags to rock around your town and help raise awareness!
Bullfrogs and Beauty Queens was born out of my love for expensive boutique style children's clothing. Unfortunately I recently lost my husband and I have 3 beautiful children that need to be provided for. My youngest child has had some health issues and sending him to daycare is not an option at this point. Since becoming a single mom I needed to find a way to keep my children in their stylishlooks while still being able to afford to dress them that way. So I taught myself to sew and here I am.
We are a handmade custom children's clothing boutique. Please check out our samples album to see many examples of the custom work I have completed. Items in the sample album can be made in any color, fabric, applique, monogram and anything else you can think of to make your outfit as special and unique as your child. Pricing is based on each particular outfit. I have posted pricing of the samples but prices can vary based on wants and needs of each individual.
Please pardon our progress as we are just starting this new venture. You can find great new items like LiVie & LuCa shoes here or visit our Facebook Fanpage below for great new styles of the season!
I look forward to providing you with a beautifully designed and reasonably priced outfit just for you!
Dear Prospective Participant,
My name is Katrina Tormos and I am a candidate for a Bachelor of Science Degree in the Criminology program, with a minor in Biology at the University of La Verne. I am passionate about working with patients who have been diagnosed with a histiocytic immune deficient disorder and their families. My passion for this area of research comes from my own personal experience of enduring the immunity disorder, Langerhans Cell Histiocytosis. I am aware of the difficulties that such deficiencies can bring and my hope is to provide agency for those whose life experiences have been impacted with a similar diagnosis.
Currently, there are very few studies that focus on the sociological perspective of histiocytic immune deficient patients, amidst an abundance of studies on biological perspectives regarding the actual disease. By participating in this study you will be making an important contribution to a new body of research. I want to bring awareness about rare immune deficiency diseases in order to allow others to understand the different forms of struggles that patients and their families must face on a daily basis.
I am looking for participants, of any age, who are or have been diagnosed with a histiocytic immune deficient disease. If the patient is under the age of 18, a family member will be asked to participate instead. The interview should take about 45-60 minutes to complete. Your identity and responses will remain confidential and will be disclosed only with your permission or as required by law. Confidentiality will be maintained by means of keeping all information stored in the researcher's personal computer with a secure password. If you have any questions regarding this study, please e-mail me at firstname.lastname@example.org, or my senior thesis advisor, Fatima Suarez, MSc. at email@example.com. Thank you for your time!
The Akin Foundation was started by Justin & Kristin Akin after losing two of their little boys to HLH. Following their tragic losses, they have found a way to direct their love for their sons into this heartfelt foundation built to help others. Justin Akin will soon lead another 700 mile bike ride to raise awareness for HLH.
1. When was the Akin Foundation first established? Why did you start this organization?
The Matthew and Andrew Akin Foundation was established in 2010 shortly after Matthew's death. Andrew had already passed away in 2009 and we knew we had to do something in memory of our sons to help make a difference in the future.
2. What is the mission of the Akin Foundation? How has it grown over time?
The mission of the foundation has changed over time but the key component has always been and will be to help families diagnosed with HLH. The current mission is to support the HLH Center of Excellence at Cincinnati Children's Hospital and their four core priorities of Research, Awareness, Clinical Care and Family Support. When we started the foundation, the HLH Center of Excellence didn't exist. I'm on the Parental Advisory Board for the HLH Center of Excellence so that is a big reason we are funneling our money into the center and working closely with the HLH experts on where to actually spend the money.
3. Can you tell me about the work your organization does and the program or programs you run?
Our foundation really has a myriad of projects. We hold two blood drives and at least one bone marrow drive each year. We also travel to various hospitals and medical schools around the country and give speeches about HLH. In fact, we've been asked to give a speech at Washington University Medical School next month.
In 2012, we donated 5 mobile therapy carts to the Music Therapy, Occupational Therapy, Speech Therapy, Physical Therapy and Child Life Departments at Cincinnati Children's Hospital. Each of the carts were filled with toys to help the therapists perform their jobs on a daily basis. Our organization also gives out a scholarship each year to a histio survivor who is graduating high school and going off to college.
When a newly diagnosed child with HLH checks into Cincinnati Children's for their bone marrow transplant, a social worker from the hospital reaches out to us and we send them a Toys R Us gift card for the child with $100 loaded on it. My wife, Kristin, and I are also volunteer bone marrow couriers. So we travel around the country transporting marrow between donors and recipients. Needless to say, this has been very rewarding! We're also currently working with Cincinnati Children's Hospital to figure out long term stay options for HLH families. This has been a top priority for our foundation since its inception.
4.) What are the biggest accomplishments of the Akin Foundation?
I truly believe one of the biggest accomplishments of our foundation is that we've helped save lives. For the past 3 years, we've purchased all of the keywords on Google associated with HLH. When newly diagnosed families are told their loved one has HLH the first thing they do is Google it. When they do, at the top of the page is the ad for www.matthewandandrew.org. In the ad it says "The world renowned HLH experts are at Cincinnati Children's Hospital." They then click on link that takes them to our website. From there, families either call or send me an email asking for help in getting their child to Cincinnati. I then help get them in touch with Paige Cripe, The HLH Center of Excellence Coordinator, who helps facilitate that process. Having families say "thank you" for getting their child to Cincinnati has been very rewarding. My goal all along was to get the hospital to start buying these keywords. Within the next month, this transition will finally take place. Another big accomplishment for our foundation is the book Kristin wrote, "Love Trumps Grief." It is the story of our journey with Matthew and Andrew and ultimately William, our adopted son who truly saved us. We've heard from friends, family members, strangers, doctors, presidents of hospitals, etc... that the book helped them in one way or another. The book has also opened many doors for us and provided a lot of opportunities to help make a difference.
5.)What do you think your constituents or beneficiaries would say is the best thing about your organization?
I would hope they would say we've helped raise awareness about HLH and saved lives. I would also hope they would say we've inspired them. We've been through every parent's worst nightmare, twice. But we're moving forward and having good things come from the tragedy.
6.) What are your goals for the next three to five years? What priorities will help you achieve them? What barriers are in your way?
Over the next 3 to 5 years, our goal is to help grow the HLH Center of Excellence at Cincinnati Children's Hospital. Being on the Parental Advisory Board, I have access to the Marketing Department, the Strategic Planning Department, etc... and even the President of the hospital who sits in on our meetings many times. Through the center, we will raise awareness about HLH, fund research projects and ultimately get a long term housing structure built for HLH families. Since we have the full support of the hospital, I don't see any barriers in our way. Kristin is also the only parent on the Leadership Committee at St. Louis Children's Hospital. Through that committee, she will help make a difference at hospital where we did not have a great experience.
7.) What is the 2013 HLH Ride for a Cure event ?
The 2013 HLH Ride For A Cure event is a 700 mile bike ride over 7 days. It starts on September 28th and we will be riding from Natchez, MS to the front door of Cincinnati Children's Hospital. There are 6 of us riding this year. Every morning, we will be creating a YouTube video dedicating that days ride to a child at Cincinnati Children's currently fighting HLH. I think I'm most proud that Sean Feltoe, a 23 year old HLH/BMT survivor is riding with us this year. We'll end up at the hospital the weekend of the HLH Conference where doctors from around the country will be coming in to learn from the HLH experts.
8.) When did it first occur? How has it grown overtime?
It started two years ago when the goal was to ride my bicycle from Amarillo, TX up Route 66 to Chicago, IL. Unfortunately, on day 2 I crashed and broke my shoulder. Last year, I went back to the site of the crash and rode the 700 miles back home to St. Louis. Another dad who had just lost his 5 year old daughter to HLH rode with me. With 6 riders this year, it is obviously growing. A videographer is coming along this year to film a documentary of our journey and to help raise awareness about HLH.
9.) How can our readers partake in this or future events?
Our events calendar is located at matthewandandrew.org. Outside of the 700 mile bike ride, we have a 14 mile bike/ride pub crawl coming up that is a fundraising event, a blood drive and a trivia night/silent auction.
10.) Where can our readers donate or watch your progress?
Readers can donate and follow our progress at www.hlhrideforacure.com. This is where the daily dedication videos are loaded each morning. Each rider's "Why I'm Riding" is also located on this website.
More on The Akin Foundation Online
This time last year we were contacted by a good friend looking to reach out to us because her neighbors' son had just been diagnosed with HLH. It wasn't too long after her and her husband had read the Philadelphia Inquire finding the article written on Eric and his drive to walk again and complete items off his bucket list. Weeks went on and Eric's health slowly improved and we became hopeful to meet little Sean over winter break.
But Sean grew weary and he asked the doctor for an X-ray because he felt something wasn't right. Sean had new complications developed and he went home to be with God on Sunday, January 6, 2013. Eric and I attended the services with such compassion and sorrow - awestruck over the power of love that was inside us for a little boy we never met. We were connected. Forever this little boy would hold a place in our hearts.
Connect with us
So we ask our local friends and family to join us for the 1st Annual Sean Fischel Connect 5k (& 1 Mile fun run!) Sean has not only connected his family, but he has connected an entire school, sports teams, and hundreds to thousands all over the US with his kind heart and big smile. Connect with us. And remember to Connect with the ones you love because yesterday is gone and Tomorrow is never promised.
More on Sean & His Family
Family Keeps Sean Fischel's Memory Alive LINK (published 8.1.13)
Swim Team Honors Sean Fischel's Memory with Fundraiser LINK (published 7.09.13)
School Celebrates Sean Fischel on 'Heaven-Sent Kind of Day' LINK (published 5.31.13)
Day in Late Student's Honor Helps School Remember 'Special Little Boy' LINK (published 5.13.13)
'Tremendous Fighter, Little Angel' Defies Odds Against Rare Disorder LINK (published 3.15.13)
'Sean's Love is Living on in Everybody' LINK (published 3.14.13)
Wrestling Tourney in Boy's Memory 'A Beautiful Thing,' Mom Says LINK (published 2.25.13)
Sean's Story LINK
GlobalGenes.OrgSean’s Tragic Battle Against Hemophagocytic Lymphohistiocytosis (HLH) Inspires Others LINK
Sean on our blog
Sean Fischel, HLH Warrior LINK (posted 01.06.13)
Holidays With The Fischel's LINK (posted 12.06.12)
Sean's Journey With HLH LINK (posted 10.28.12)
One mother's memory of her son's journey with Hemophagocytic Lymphohistiocytosis. Though 5 years has gone by, she still recalls every detail like it was yesterday. This is Anthony's story.
Anthony was born February 20,2008 in Spokane Washington, He lived in the hospitals their most of his first few months, He was flown to Seattle Children's in May 2008 and because of his family's situation became a foster child....He sat in Seattle Children's fighting for his life and about 3 days after coming to Children's they discovered that he had HLH,and immediately started Chemotherapy, He was crossed typed for a BMT. The nurses and doctors became his family for 4 weeks.
We had been wanting another Foster baby and their were many we could of chosen, Healthy ones, twins and one Named Anthony, I had kept asking about him and our Social Worker wasn't to keen on us taking him because he could die, I remember telling her...Don't protect us...He needs a Family...So we had it all set up so on June 27, 2008 John and I got to walk into Seattle Children's to meet this little tiny baby that we instantly fell in love with. We started staying the night with him on July 1,2008.We would take turns and didn't know how this would all work out. Who would take care of our boys and Lindsay at home, But somehow I kept hearing ...I have this handled. We thought we were going home on July 5,2008 but Anthony got really sick and his electrolytes were totally out of whack and so we stayed in the hospital for another 3 weeks but were back in 3 days later. I remember the nurses smiling when we came back in..Just because they missed their baby!!!Anthony wasn't just our baby he was the nurses, cleaning crew, security and doctors baby. Anthony was in and out of the hospital with several infection over the Fall and Winter time.
In November 2008 Anthony's Birth mom had given us permission to adopt him, It wasn't that she didn't love him but that she knew he needed the medical attention and we would do a open adoption with her. We spent hours on the phone, she would talk to him, we sent pictures, Christmas presents and she could still be apart of his life. So on May 14,2009 we adopted Anthony over the phone with the judge, He was too sick to travel to Spokane and we named him Anthony Wesley James!!! He was our gift from God and we now had to give him back to God.
So in June 2009 he was dedicated by Pastor Deryl Bell and we had given our gift back to God. Anthony was suppose to enter the hospital for his Bone Marrow Transplant on June 23,2009 as always Anthony missed his nurses and he got really sick with a Blood Infection on June 22,2009. He cleared that and had received his Life saving transplant on June 23,2009. He was so sick and it wasn't easy watching the one you love fight so hard, He was finally HLH free and in full remission and we got to go home the end of August 2009.
We would have many more blood infections and a lot of fighting what is called Graft vs. Host disease of the skin, and gut. He was always a fighter and we got to stay home for the holidays and most of the winter. In March 2010 we were admitted for GVHD and were in the hospital for 4 months. In that 4 months Anthony had many many blood infections, and was in ICU for almost 6 weeks for clotting issues and we were told that we were going to lose him. The doctors called the top Hematology Dr's in Denver and they put Anthony on what we call a miracle drug Faraparonox.It meant a shot 2xs a day but it would keep Anthony alive. We thought that everything would be great and we would have a healthy boy to watch and raise. Anthony finally got to go home after 4 months in the hospital...He got his PIC Line out on Sept 9th 2010.
On September 16th Anthony wasn't feeling well at all and as I was praying I looked in his eyes and said "God if he is tired its ok to take him" little did I know that I will never forget that prayer.
September 19th would be the last time John would take him through the doors of Seattle Children's, We were in SCCA and they tried 11 times to get a line in him, they moved him to ICU and he went into Cardiac arrest in my arms. The doctors took him and worked on him for what seemed like eternity knowing that organs had probably had taken a beating and were shutting down.
We went the next few hours not knowing if he would make it, we had family and friends coming to sit with us. We prayed and had our friends, family and Histio family praying that a miracle could happen.
The words that no mother, father or sister should ever hear is there isn't anything more we can do for your loved one. The pain in the doctors eyes. They had all watched him grow up there. This wasn't the outcome we had all wanted.
We moved Anthony down to SCCA floor the next morning, His Amy gave him his last walk around the floor, We had a room full of family and friends as we took him off the venilator.He was on his own timing as he was told to fight for 2.5 years. He lived for another 6 days.
On September 29,2010 at 12:56 am Anthony earned his Angel Wings. Our nurses and doctors were great and as we said good bye to what was our home for 2.5 years, it didn't feel right leaving without our baby. He was suppose to live forever but God had other plans to heal him.
Anthony was our gift for 2.5 years and to this day there isn't a day that I don't think about him, Wish he was here with us running around playing and laughing with his brothers and sisters. He showed us what Love is and how to love unconditionally.
There are many times I wonder if I would take such a sick child again and to this day I would say Yes with no hesitations. Anthony was here for just a short while but in that short time, he touched so many lives here and around the world.
Thank you Anthony Wesley James for letting us be your earthly parents and when I get to Heaven, we will play, laugh and be together but for now your brothers, sisters and other babies need me!!! I Love you to the moon and back! Keep watching over us.
John Henkels, Author of Samuel's Mission, A Family's Return to Joy talks about he and his family's trials and tribulations as their life suddenly changes when their baby boy Sammy was diagnosed with Hemophagocytic Lymphohistiocytosis.
About the author: I am a 56-year-old father of three sons. Our oldest, Zach is 17. Suzanne and I joyfully adopted Zach from a Russian orphanage at 7 months of age. 2 years later, Suzanne gave birth to twin sons, Jacob and Samuel. I'm a civil engineer and have been working in the highway & airport construction industry since graduation from Iowa State University in 1980. Suzanne and I have been married for over 20 years and make our home in Strongsville, OH
How has Histiocytosis affected you?
Our son Samuel became ill at 2-1/2 months, recovered and then relapsed at 7 months. He was diagnosed at that time with HLH by the tremendous staff at Cleveland's Rainbow Babies and Children's Hospital. Once diagnosed, Sammy was treated by Dr. Lisa Filipovich at Cincinnati Children's Hospital Medical Center and received his BMT from an unrelated donor in February of 1999. Complications, especially GVHD arose about 30+ days post transplant. Sammy's condition spiraled slowly downward for months. He never left CHMCC. Sammy fought like a lion but just couldn't beat the disease. He passed away on August 14, 1999 at the age of 16 months.
What is Samuel's Mission, A Family's Return to Joy about?
The book tells Sammy's story but also takes the reader inside our marriage as Suzanne and I so divergently cope with catastrophic childhood illness, Sammy's death and the grief that follows. The story is told very candidly and with masculine emotions that are so often hidden and unexpressed. Samuel's life and his mission began to come into focus weeks after his death and was not truly clarified until years later when the lessons of his short but powerful life were finally realized. In our time at CHMCC, Suzanne and I witnessed so much death....and learned so much about living. It was a concept (described in detail in the book) of "Extravagant Love" as expressed and shared by Sammy and the dying children, families and staff of Hem/Onc. that became Samuel's ultimate mission. It was this "extravagant love" that allowed Suzanne and me to rescue our marriage from the edge of a cliff and find our way using specific and intentional values to a life of deep faith and JOY!
What prompted you to write Samuel's Mission?
Samuel's Mission began as my therapy during Sammy's difficult treatments and was intended to tell the amazing story of how this little child defeated the monster called HLH. The book, of course, turned into a much different story.
How did you come up with the title of this book?
Samuel lived a short but hugely impactful life. His suffering was immense and his spirit large. I realized as he was fighting for life the effect he had on my life and the impact he made on staff, families in the unit and others that heard his story. Sam had a short life, but he accomplished much in that time. Samuel's mission was completed.
How has life changed since writing Samuel's Mission?
Life changed dramatically during the four rewrites as Suzanne and I went through grieving and finding our way to joy. Initially the book ended with Sammy's death. But as his lessons were learned and his mission clarified, his story also changed.
Where do you see this leading you in the future to raise awareness for HLH and Histiocytosis?
The reviews have been beyond my dreams. Tammy Zimmerman gives it 10 out of 10 stars. Another reader wrote. "Buy the Book, it will change your life." There are many others. I do not need to make $ on the book. In fact, I have been distributing it during Histio awareness month for below my cost in order to raise awareness. I hope to eventually have 3000 copies in circulation.
Along with the book, I have engaged in speaking opportunities and look forward to any venue to spread the message about the disease. I speak to grief groups, medical professionals, church groups and at Histio events. Next month, I will be giving my talk on PTMD or Post Traumatic Marital Disorder at a Symposium on Life and Loss in Connecticut.
Where can our readers purchase their own copy of Samuel's Mission?
Readers can order from me for the new low price of $9 during HIstiocytosis Awareness Month including postage by emailing firstname.lastname@example.org
You can also find it online at samuelsmission.com direct from the publisher for $20, Amazon.com, Barnesandnoble.com, or downloadable to any device.
More on Samuel's Mission
Samuel's Mission has been nominated for a Midwest Book Award for Inspirational Book. For more info
THIS IS LONG, BUT BASICALLY IT'S MY
ONE YEAR POST-BONE MARROW TRANSPLANT.
ONE year ago today, my donor's stem cells were transfused into me. Even though I had already been in the hospital for 2 weeks to prepare myself for this day, it has officially been one year ago since my bone marrow transplant. All the radiation had cleaned out the immune system I was born with, and I felt as though I was being bleached from the inside.
I wasn't exactly in the best mood that day because I was extremely scared. My ANC (Absolute Neutrophil Count) was going to be 0, in other words, no immune system at all. I was almost 60 pounds more than I weigh today. You can see scarring on my body from how quick steroids made my body gain weight. I'm contemplating a hip replacement someday because the steroids and everything were just THAT EXTREME it destroyed part of my hip bones in order to save my life over time. I have my donor's blood type now.
This lasted till I was released a couple days before Halloween. And I can tell you, during that WHOLE TIME, I did not TURN ON the TV ONCE. When you're hospitalized for a BMT, you are in the highest form of isolation, and I had what looks like a really small apartment for medical use. I got out of the bed almost everyday, sat down at the table, and got crafty. I had stacks of coloring books, I drew, I painted, I molded clay. My parents were there everyday bonding with me doing these things. Some days I was so weak I would start falling asleep with a pencil in my hand, and I drew very slow. Every morning I read out of a devotional, and prayed to God.
Anyways, it took until June to officially be out of isolation because my body took that slow to be decent enough to fight basic germs we come across everyday. I have faith I am going to do well from here although I still have immunodeficiency. Just think of me like a baby, I haven't been exposed to much.
This experience really showed me the TRUE COLORS of people...who were going to be there for me literally through death....who was going to love me unconditionally.
I filled out papers to request to meet my donor too.
So today I'm going to be with friends, and, it is also...
THE ANNIVERSARY OF HAVING MY DOG SOPHIE!!! THIS DAY 2009 I GOT A PICTURE MAIL OF MY NEW PUPPY WHILE I WAS SEEING BLINK-182!!!
SHE'S BEEN AT MY BEDSIDE ALL THROUGHOUT MY SICKNESS I LOVE HER!!
more on izzy
Visit Izzy's website her family set up for her when she was diagnosed with HLH. LINK
Tucker Scott was a little boy whose story stole our hearts for just a few short weeks. His journey with HLH, though brief, will impact the lives of everyone he touched forever.
Tucker Scott Brittingham was born August 1, 2013 in Kalamazoo Michigan to Jason Brittingham and Leeann Ford. Tucker was thought to be in good health and went home as any baby would go home.
Two days later Jason and Leeann took Tucker to his well check and immediately were told he had a fever and was septic and to go directly to the hospital. When at the hospital they admitted baby Tucker because they couldn't get his fever under control and his liver levels were ridiculously high. This was immediately a scary situation not knowing what was going on with him. They decided to do the spinal Tap to check for HLH. At that time Tucker was then put into PICU and put on a respirator and received blood transfusions high powered antibiotics and steroids.
Days passed and results came back that he in fact had HLH . The testing poking and prodding continued until they just couldn't get anymore blood from this tiny 7 pound baby. Chemo was started it seemed to be suppressing the HLH symptoms. He stayed stable for a week or so and then everything just went downhill again. He couldn't receive his chemo and his blood cell counts were low. The steroids were backed off and things took a turn for the worse. An infection took over they then found out Tucker had blood clots The only way to treat them was with blood thinners. Any other time they poked him, he would bleed at a very fast rate.
Tucker with his Mom & Dad
The hospital then decided to transfer Tucker to Cincinnati Children's Hospital in hopes of better treatment. Baby tucker was flown to Cincinnati and his condition worsened to the point that his liver and kidneys shut down and all hope had disappeared. Jason and Leeann had to make the most heart wrenching decision ever. They had to decide that nothing was going to save this precious baby and decided to remove all of the tubes and wires.
30 minutes after making the decision, Baby Tucker passed away on August 30 2013 . They held him tight and loved him while he took his last breaths. This has broken there hearts, changed there lives and things will never be the same. The pain,the heartache, the guilt of not being able to fix him will forever haunt them and creates sadness and helplessness for the entire family. Tucker is a gift given to my brother and Leeann that we will never ever forget and he will always be in our heart.
Now our goal is to let everyone in this world know that this disease affects people everyday and it needs better treatment options and a lot of awareness so that we as people can take this bad experience the worst experience ever and make it into a positive and try to save others!
Jamie, Tucker's Aunt
More on Tucker and his family
Tucker's Aunt Jamie had organized a donation site in August to help with medical costs in effort to help her family as she was several states away. This site will now help Jason and Leeann tackle the large medical bills and Tucker's memorial service. No amount is too small.
Donate below & don't forget to click LIKE on Tucker's Facebook page to help raise awareness for HLH.
We are honored to share our first post in our 2013 Histiocytosis Awareness Month Blog Series. We did not have the opportunity to meet Perry in person, but by the words you will read below, you can tell she was truly a remarkable young woman. Perry was diagnosed with arthritis at a young age and later HLH.
Our daughter. Perry Tyner Tate, passed away on January 2, 2013. She was diagnosed with secondary HLH only 24 hours earlier.
She was only 23 years old but had accomplished much more than many do in a lifetime. Perry's life was a mission, a mission to help others and change lives. She faced many health challenges, but from an early age, she faced them head on! Diagnosed with Juvenile Rheumatoid Arthritis at only 17 months of age and later with Fibromyalgia at the age of 21. Nothing physical was ever easy for Perry but she faced every obstacle with a smile and fierce determination.
Early December 2012, Perry started running fever and just generally feeling badly. She visited her rheumatologist who did routine blood tests and was alarmed by her abnormally low platelet and white blood counts. He sent her straight to the hospital. She was admitted and the tests started. The blood issues and fever didn’t get better and the doctors noted an enlarged spleen and increased ferritin levels. They sent her home for Christmas with no diagnosis and follow up appointments scheduled with the infectious disease doctor and hematologist. December 26 we noticed that she was very jaundiced. The doctor’s ordered a liver biopsy and immediately put her back in the hospital with concerns that she was going into liver failure. All the time her arthritis pain was unbearable --- the doctors had taken her off all her regular arthritis and Fibromyalgia medications in fear that her condition was drug induced. (Perry had take Enbrel/Humira and Methotrexate for 12+ years) Our doctors were considered among the best in the State and they were consulting with other doctors but no one ever mentioned HLH. In the next few days panic began to set in. After a series of miracles Perry was air lifted to Vanderbilt Medical Center. We all assumed she was going for a liver transplant. Only a few short hours before the transplant was to take place we were told that she was positive for HLH and the surgery was canceled. She started chemo and didn’t make it through the night. Every organ shut down and her battle was over. Bone marrow tests confirmed that the latent EBV virus (Mono at age 17) probably triggered the HLH in a body that was already immune compromised.
Her Daddy, her sister, her husband and I miss her terribly. Awareness should start in the medical community. Our State is ignorant to this disease.
Perry's love for underprivileged youth was so great that she has requested you help them on her behalf.
Donations can be sent to the Clinton Y Childcare Center in her memory. The Perry Tyner Tate Scholarship will allow children in Clinton a better quality of life by providing scholarships for after-school care, summer camp and swim lessons to children whose families cannot afford these services. Over $2,500 in scholarships have already been awarded in Perry’s honor.
Donations to the Scholarship fund may be sent to:
The Clinton Family YMCA
c/o The Perry Tyner Tate Scholarship
400 Lindale Street
Clinton, MS 39056
More on Perry
LINK: In Memoriam: Perry Tyner Tate University of Alabama Phychology
From Dr. Jeffrey Parker to his lab and collaborators
LINK: Northside Hosts Blood Drive In Memory Of Perry Tyner Tate WJGTV News Channel 12
LINK: Clinton YMCA dedicates Perry Tyner Tate Scholarship The Clinton Courier
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