It’s incredibly difficult to “feel” well. I was hyper-vigilant before, now it’s hard to even let myself feel better. But, well I AM feeling better. My husband had read a lot about HLH, mild cases (less well known because they don’t meet the criteria), and severe ones. It seems that HLH may be a continuum disorder (symptoms have a range, but it is all the same disorder). Most, if any, local doctors are “familiar” with severe cases because they are rapidly deadly. Moderate cases are harder to diagnose, but nonetheless can be deadly. HLH may simmer in the background until it has recruited enough tissue to become severe. It is unknown what will finally set the severe case off; however, because there is so little research, it is unknown if the less severe cases could be treated intermittently and that treatment be successful. Some of the research participants are treated with just steroids, some are maintained with chemo, and some go onto bone marrow transplant (BMT, also known as stem cell transplant).
Boston is home to the Dana Farber Cancer Institute and Brigham Women’s Hospital. This is where my research doctors practice. This is where we were going. It always seems so urgent when I visit Dr. Yoda, but as soon as I leave the office, we are faced with reality. And reality means waiting. And waiting means anxiety. But it also means time for planning action. Here comes another really hard part of the journey to talk about. Finances. At this point, I had not worked regularly in about 9 months. We are very fortunate to have planned ahead, but trips to Boston were not in our budget. This is the crux of the matter- life insurance covers you if you die; however, it is extremely difficult to be the living ill. This played with my mind, especially in the hospital (when you have nothing to do but think and sleep. And fortunately my team recognized this and I was started on Zoloft). How were we going to financially do this? So, I asked for help. And you all came to my rescue. And if you are thinking to yourself, “boy! I would have liked to help.”- you will get the opportunity. I could talk and talk about this, but right now, back to the story. So the kiddos got some time to spend with their grandma, and husband and I headed to Boston.
I was feeling soooooo good. Seriously. I still was running low grade temps, but I was walking 2 miles a day. I felt that I could go back to work (if my job didn’t entail seeing sick people and I wasn’t running that pesky fever) at least part time. I could stay up till 8 p.m.! I was taking care of kids, being part of a family- truthfully a part of them. Not just watching from the sidelines. We felt that the Boston docs would give Dr. Yoda the plan to finish kicking HLH’s butt- we were just so close, we could almost touch it. Then we met Dr. B and Dr. Sarah. They seemed to know me, know my story. Note sheets of my story were in front of them. We filled in some of the gaps… but these people were the experts and it was noticeable. Best of all they knew me.
- Diagnosis confirmed. HLH it is. (Doubter doctors stick that where the sun don’t shine).
- They did not consider mine a mild case.
- They did not know if blastomycosis was truly my trigger or if the genetic predisposition found on my genetic screening was more to blame.
- I needed to be started on a bridge therapy of chemo.
- Cuz I need a BMT.
What?!?! What about me improving on my own? Why was I feeling better?
The described HLH as and relapse and remission disease (it comes and goes). No one is sure when it would come and no one was sure they could make it go. SCT (stem cell transplant) is the only known cure, but it carries it’s own risk.
“Would we be doing the BMT in Boston?” Uh, Yes. I knew by the physicians who had been treating me in Nashville, I would be one of their first patients (if not the first patient) with HLH like this that they would be treating. I’m all for learning from experience, but I could tell that Dr. Sarah had done this many times and that she was confident in her skills. She stated that she would be the one to perform the transplant and that she would be the one who would watch me from day to day. That is reassuring.
“That will require at least a six month relocation of your family. We need to get started on a donor search. We need to draw labs today. We need to see you again in six weeks and we will start to coordinate with the transplant team. You will meet with Pat today, she will answer a lot of your questions. And here is our transplant binder, don’t look at this today, look at it when you are ready- THUD (that binder could definitely kill a large spider). We need to know if your insurance will cover this, but let Pat worry about that.” I like Pat, her immediate response to most anything was, “don’t worry about it, let me worry about it.”
Wow. That just wasn’t what we were expecting. Of course, I cried when I left the office. But it was more the overwhelming nature of the discussion, not the actual procedure (that comes later). For the first time, there just wasn’t any doubt to these doctors. I wasn’t a unicorn. They almost seemed giddy to find a person like me.
Even though we were in Boston, surrounded by lots of excellent small restaurants, there was a Cheesecake Factory nearby, I could smell it. My husband searched it out and we walked there. I called my Mom. Cried some more. “You just sound so matter of fact,” my mom said. There’s just not much else to be. There was a plan. A direction. A fight to be won, a peace to be found. The uncertainty wasn’t there for these docs. I finally had a very clear cut treatment plan, even though I didn’t like it. I texted friends. There was a lot of what?!?! And my one dearest friend asked, “well what are you doing now?” I know that she was worried for me and my mental well-being. She had been my rock since December 25, 2016. And before. She listened to me cry nightly there for a while. And talk of things that I am not proud of, but it was just my fear oozing out.
Me:”eating a grotesque amount of cheesecake and drinking beer.”
This is simply incredible. To think we will spend at least half a year in a big city unfamiliar to us. Halfway across the country. Just our family. We will be somewhat isolated in order to help prevent infection. And I hope that they will be coming to see me triumph over this illness, to become a histio-warrior and survivor. Because the alternative is just not acceptable.
We have a chance at chemo, but according to Boston, only about 10% of people will be successful using just chemo. We will have to turn our faith to the Father to keep our journey focused, our minds positive and our bodies healthy.
Fundraising has started again if you would like to help, we of course would truly appreciate it. Please visit my caring bridge site: Glittered Path (go down to “ways to help” for my gofundme site), or follow on Facebook at Glittered Path.There will be various parties and fundraisers going on. Of course, beamatch.org is also an excellent way to support us and others that need BMT. If you could save a life with a little blood, would you? GET VACCINATED. I cannot be vaccinated for flu, and if I go through BMT- I will need to be re-vaccinated with all my “childhood” vaccinations; therefore, there will be a time when I am extremely susceptible to “childhood illnesses.” Now that life you might save has a face. It has 3 children and is a daughter,wife, sister, cousin, niece, and friend. It is a member of a community that loves her and that she loves. That face wants to change the world for the better. Can you help me? Will you do these simple things?