Back at home and now Lucy in a wheel chair because she couldn’t walk twenty feet without losing her breath and having to sleep sitting up because the fluid built up, Lucy began her chemotherapy treatments and the process of twice a week having her lungs drained. This procedure would take six weeks. After Lucy’s respiratory treatments we would go watch Kristan play softball. Lucy never missed a game. Lucy never let all her problems stop her. She continued to do whatever it would take to stop the cancer from spreading. Lucy never ever complained. The draining of Lucy’s lungs helped but without her inhaler I didn’t know how Lucy could have managed. Sadly the chemotherapy treatments did not work and Lucy’s oncologist was no help. He told Lucy there was nothing more he could do and when I walked into the room Lucy was crying and I asked what happened. Lucy told me that the oncologist could not treat her. I asked, there must be something that could be done and this so called doctor actually got mad and said you can leave or leave with a referral to MD Anderson. I wish I could mention his name so others would not have to go through what Lucy went through with him. The medical community doesn’t need doctors with that kind of bedside manner.

We did not know what to do and Lucy was having trouble seeing out of her right eye.  She saw a specialist and after x-rays found out her cancer spread to her eye.  So Lucy also had radiation two times a week to her eye and that was successful.  In the mean time Lucy had a friend who was the head of oncology at a hospital in Texas.  She talked to him about her situation and he told Lucy to come there and he would treat her and do whatever he could and not to give up.  Now that’s a real doctor.  Lucy made the trip hard as it was on her.  She was in good spirits and it made her feel good to know she would get the best care that was available.  We stayed at the hospital and Lucy received a new regiment of treatments and she started to respond.  Her friend gave Lucy a letter with instructions on what type of chemotherapy and other treatments she needed and when we got home to contact an oncologist and get started with the treatments that Lucy received in Texas.  Well another wall.  Lucy saw four oncologists and finally one of them agreed to treat her with medications he prescribed.  You see these drugs were not proven to tread Adenoid Cystic Carcinoma but the drugs being used for Lucy’s cancer did not cure her type cancer either, so other doctors were hesitant to try this new procedure.

Lucy was doing better and her father came from El Paso to see Lucy. A few months earlier Lucy’s mom passed away. It was hard on her dad but was especially hard on Lucy. She wanted to be by her mom’s side but Lucy was too sick to travel. I could see it in her eyes, she wanted to go so badly. On mother’s day we went out and had a great afternoon. We had reservations at a nice restaurant and Lucy had a nice lunch. You see before her treatment in Texas she didn’t have much of an appetite. When we got home Lucy got out of the truck and started walking to the house just as if she was never sick. It almost made me cry. It was so good to see her feeling better.

It took four weeks to find the oncologist to treat Lucy and by this time the treatments she received in Texas had worn off and Lucy was not doing as well. Another week of tests and making the appointment to start her chemotherapy was taking its toll on her. Lucy finally started her treatments. The next week when we went back for another treatment the nurse said Lucy looked to weak and called an ambulance that took her to the hospital. After the doctors took tests and x-rays they told us her cancer had spread too far and we needed to stop all treatments. That was the worst day of my life. Lucy understood and still took it upon herself to do the things she could still control. The next day the doctors said it was best to stay at a hospice center until we could bring Lucy home. That day did not come. The following day Lucy passed away in the arms of her daughter and myself.

I know Lucy knew we did everything we could but that’s not good enough. The running around from doctor to doctor, hospital to hospital, and running into dead ends is inexcusable. If Lucy were here today I know she would be fighting for those with rare cancer. The cancer community, the government and big pharmaceutical companies need to know that day to day problems people with rare cancer contend with. Lucy never gave up and neither will Lucy’s Foundation until people with rare cancer can have hope for treatments and cure for rare cancers.