"At Least It's NOT Cancer" They said..

**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…

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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.

Liam, brothers Matthew and Andrew, Kael, Karleigh, Haley, Ethan, Colin, Robert, Daniel, Cole, TJ, Steven, Nick, Andi, Brock, Tucker, Nevaeh, Victoria, David, Ryan, Levi, Abigail and the list goes on and on.

Most of those names are infants and children.

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!

- Kim

--- 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.

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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…

To follow Dakota’s Journey
www.facebook.com/Dakotas.Team


Sean’s full photo gallery: HERE

Foundation in honor of Angel Baby Liam
www.liamslighthousefoundation.org


Foundation in honor of angel brothers Matthew and Andrew
www.matthewandandrew.org


The Histiocytosis Association
www.histio.org