Vianey's LCH Treatment

There is nothing can prepare you for “that moment”, the moment that you receive a life threatening diagnosis. The moment that time stops and your heart is shattered in to a million tiny pieces.

Wishing if there is anything you or your doctors can do to change the diagnosis you were given.

You take it one day at the time. You try to hold yourself together for the sake of your children and family.

YOU have to be brave, even though you are terrified.

There are moments in our lives when we realize that life has been kind. The moments you realize you would have wanted a few more seconds to take in the time with your loved ones.

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This is my Story...

My name is Vianey, I am a 43 year old.

My nightmare began in March of 2017…

At that time, I was working as a personal caregiver and a dog walker. I was taking care of a 84 year old man with Alzheimer and a 30 year old woman with cerebral palsy. I took care of them for few hours each during the week; this was something I really enjoyed doing. As time went by, taking care of these amazing people, it became extremely difficult to care for them.

My own body started to weaken and I did not know why.

One of the first symptoms that I had was extreme thirst. I was drinking three to four bottles of water each day. Then my intake of water started increasing. It was up to the point of having to drink 3 or more gallons of water each day that I decided to go see a doctor to get some answers as to why my thirst was so out of control.

My first emergency visit at the University of Illinois Hospital, I was given a full workup of examinations. The symptoms pointed that I might have diabetes; however, doctors ruled that out and sent me home.

As time went by my thirst became immense, it was unbelievable and I needed answers.

My second emergency visit was at Northwestern Hospital. Blood work was done and doctors assumed it was diabetes once again. Unfortunately, it was ruled out again because the tests showed no signs of me being diabetic

My situation was getting out of control. I knew something was wrong. Because of my uncontrollable thirst, my intake in water increased extremely and now needed to use adult diapers. I became more exhausted easily and my body became weaker as time went by.

Because of my difficulties, I decided to stop working. I could no longer care for the people I truly enjoyed helping, my heart was broken to let them go. It was an enormous responsibility that I could no longer continue to do.

Since I had no answers from the previous doctors, I decided to make a visit with my regular doctor. More tests were done and no answers were given; so I was told to come back in a few weeks to see how I was doing.

No answers meant no change; no change meant that I was right back in the emergency room. I demanded to have more tests done and to be checked thoroughly. I needed answers. As a result I was sent to a specialist.

It took five long months to be seen by a Endocrinology specialist. This specialist diagnosed me with Diabetes Insipidus, a rare condition that causes an imbalance of fluids in the body; as well as Diabetes Type 2. I finally had an answer and most likely a solution to my problem.

I was put on medication to help with the intake of water I needed and the output that resulted from that. Although I was given an answer to my problem, I now had even more questions; how did I get this rare condition? Will it get better with medications? Will it have consequences to my body in the long run?

I thought I was in the clear for now. Yet surely after this new diagnosis, things took a turn for the worst.

I began to have unbearable headaches, no Tylenol, Ibuprofen or Narcotic could alleviate this pain. So eventually I contacted my doctor and was told that a PET scan was scheduled until September 2017. I could not wait until then and was advised to go to the emergency room.

Once again, I was in the emergency room, this time around doctors did some more testing and was given a head scan. In which the outcome was not something I was expecting. To control the massive headache, I was given medication that knocked me out.

The doctor came in woke me up and said “Vianey your tests are back and unfortunately you will be admitted.” I said “Admitted?!?! Why?” The doctor responded “Yes, admitted. We need to do surgery.” I asked “Surgery? For what? She responded “It appears that you have fluid in the back of your ear and we need to drain it. We also want to do a biopsy of your mastoid bone. In the scan it shows something abnormal and we would like to biopsy it.” I was then admitted.

I painfully started crying because I was getting major surgery and had no idea what the outcome was going to be. Soon after surgery and recovered I was sent home as well as make an appointment with an ENT specialist.

At the ENT specialist I received my biopsy results. The doctor said, “Vianey the biopsy came back and you have Langerhans Cell Histiocytosis (LCH), it is a rare condition. It is a rare form of cancer and you need to start chemotherapy as soon as possible.” It did not really register what my diagnosis was, at least not until afterwards.

As soon as I was alone it really hit me. I was devastated. I could not believe what the results were from the biopsy. I kept it together as I headed home to my family. When I got home I did not mention anything about the diagnosis to my family. I did not want to worry them.

I went to see the oncologist were she advised me to start chemo right away. I felt as if my life was literally ending. I had so much going on and had to start chemotherapy. It was just so much to take in at once. I started chemotherapy without my family knowing.

I started chemotherapy with steroids (prednisone) for six cycles. My body did not take it well. It ached all the time and it just kept getting worst. I mentioned it to my doctor and he stopped my last cycle of chemotherapy. He had me go see another specialist to get answers as to why my body was in constant pain

More tests and blood work was done at this new specialist, but there was no answer to my pain. I was living with constant pain for eight months because none of my doctors could figure the root of this.

Since I was not getting any answers from this new specialist I went back to my oncologist. He then had me repeat a scan and things took a turn for the worse. He stated that my condition was getting worse and that I needed to start chemotherapy again. I then started three more months of chemo and there was no change. My situation was not getting any better.

My fear made me seek a second opinion at Rush Hospital. There I was started on a different round of chemo for another three months. After that round I was given another twelve months of chemotherapy.

Things started to uplift, at least that what I thought. I was feeling a bit better; however I started with mouth sores, something that I brought up to my new oncology doctor. Once my twelve cycles of chemo were done I still had these mouth sores. The doctor kept insisting that it was a side effect from all the chemotherapy. I had my last cycle of therapy in December of 2019 and mentioned to my oncologist that these mouth sores were very painful.

January rolled in and I still had these mouth sores, so did February as they were getting even more unbearable. So my oncologist advised me to see a dentist.

I went to see a dentist and they said it was not related to any dental issues.

March rolled around and I brought it up to my oncologist again, the sores. Although this time I also mentioned that I was not able to eat and the pain from these sores was becoming unbearable. She took a look at them once again and sent me to another dentist. I was then sent to go see two specialists, one who was an oral pathologist.

In April my appointment with oral pathology came about. As soon as this doctor saw these sores he mentioned that he did not think it was good, that it looked like my own flesh was eating itself; soon after I had to get a biopsy of my mouth. A few days later I was called to come back in for the results of this biopsy.

In May of 2020 I received even worst news. The biopsy for these lesions came back positive for cancer cells (LCH). This meant that I needed to start chemotherapy again because it could start deteriorating other organs.

I was crushed again. My hopes became fear once again. I was alone because up until now no one knew what I was going through. All I could do was pray.

Pray to God and ask him to give me strength to not give up, not only for myself but for my family.

I was diagnosed with three rare conditions: Langerhans Cell Histiocytosis, Adrenal Sufficiency and Diabetes Insipidus. Also my hepatology doctor also diagnosed me with severe steatohepatitis and stage 3 fibrosis.

On June 2020 chemo was started again; this time stronger than the last and lasting six cycles. It was more exhausting than the last. It hit me like a brick; it was exhausting trying to keep this enormous secret to myself and make myself better without help. So on my third cycle of this chemo round my oncologist suggested that I get an allogenic stem cell transplant. This would give me a better chance of going into remission; since chemotherapy seemed to be working yet we did not know for how long.

Devastated, I had to come clean to my family. I had to be honest of what was really going on with me and what I had been going through all this time, alone and scared.

Because this new treatment was so extreme, the steam cell transplant doctor mentioned that my insurance would not cover this extensive procedure; a procedure that costs half a million dollars that I cannot afford.

At this moment I am willing to take and do whatever to help me get better. I am in constant pain; that sometimes I fall asleep to be able to cope with it. This way I do not feel as much agony nor feel remorseful about my family seeing me in so much pain.

There is more to my story that I could write, but for that I would need to write a book.

 Adrenal Insufficiency cannot be cured, however treatment can help. I have constant pain I live with every day witch doctors still don’t know a why.

There is nothing I would not give or do just to be able to go to the grocery store or even go to the park with my kids without worrying about how much pain I am going to be in afterwards.

I am looking into alternative cares, one of which is Holistic Care, yet again insurance does not cover it.

Currently I am taking a new treatment with a new doctor; in which insurance does not cover. I am the type of person that does not ask for help from anyone.

But I am, with my heart in my hand, asking for any sort of donation.

It does not matter if it is $1 or whatever you can help with.

I will truly appreciate it.

It took me a long time, too long to even think about posting this.

I am a desperate mother trying to survive and continue to fight to see my kids grow up. I desperately want to live. If you are a parent I am sure you understand that you would give the world to be with your kids’ forever. And if you have stayed this long to read part of my story I am very much thankful.

Anything will help. I am a strong woman and thought I was able to do it on my own but there is a time when you realize you actually need the help of others.

Please keep me in your prayers and if you can help with whatever you can spare I would truly appreciate it from the bottom of my heart.

Please feel free to share and God bless you!

I been so down but I will continue to fight my battle in the name of Jesus Christ.

I put myself in his hands.