Thursday, November 27, 2014

Part 5

I feel like I am doubling back on myself. I begin telling Lizzie's story and then realize I have already written what I am about to write. I think that's one of my biggest fears: as time passes, I begin to get things mixed up or I begin to forget. I'm terrified of forgetting. I don't want to forget. I am also afraid that others will forget. I want Lizzie to be remembered for the inspiration that she was. ( I was just told that these posts are really long. I apologize. There is just so much to tell!)
There we were at Texas Children's in Houston. Poor Lizzie. She was so drugged that she kept forgetting her birthday. We had a little party for her and she opened her gifts. Then a few days later she would tell someone "it's about to be my birthday." We would have to remind her that her birthday had already passed. She would become sad and ask what she got. We would go through all the gifts and tell her who they were from. Then a day or so would pass and we would repeat the process. Dr. Thompson arranged with UT for Lizzie to receive a certificate of completion. The nurses and doctors decorated her room and had a ceremony. (Dr. Thompson is a Longhorn fan.) Guests were invited and speeches made. Everyone thought that this was the end. Remedies for her pain were discussed and dismissed. You see, there is as thin membrane that surrounds the lungs. That's were the fluid was building up. The lining was "sticking" to her lung and that was what was causing pain. A surgery was suggested in which they go in and "scrape" the lining. However, it was discovered that is wasn't fluid, it was tumors. Surgery was not an option. Her doctors told us this was it. Her body was shutting down. Family and friends were called in. Kyle, her best friend, had to contact her other friends. I can't imagine what that was like for a young man. Too be so young and tasked with such a job. The decision was made to bring Lizzie home on hospice. Dr. Thompson told us on a later visit that when we left he believed that it was the last time he would see Lizzie.  She arrived here and we were introduced to Amber and Kevin from Hospice in the Pines - two of the most caring and uplifting people I have ever had the pleasure to meet. I couldn't have asked for better hospice nurses. Coston Elementary, my school, arranged and carried out a spaghetti supper along with a raffle. T-shirts were sold. The annual Panther Bowl was turned into Lizzie Bowl. The Lufkin Panther band spelled out "Lizzie" on the field. The entire community gathered around Lizzie in support. Little by little Lizzie improved. One thing I noticed was that when Lizzie had enough of something, she worked to make it better. She had enough of being tethered to the chest pump. She had enough of the blood clot. She was done being stuck in her bedroom. She wanted out. I remember one day sitting with her in her room. She turned to me with tears in her eyes and said she didn't want to live like this. That day I got  my husband to build two ramps for our house so we could get Lizzie from her bedroom to the living room. It was a monumental task. We had to not only transport Lizzie in a wheelchair, but had to pull along the IV stand and the chest pump.  Friends would come over constantly to watch TV or play the guitar and sing. We basically enacted an "open door" policy. We told her friends to just come on in - don't bother knocking. The Lizzie train worked for a little while until she had enough. Lizzie did not like being dependent on others. When it became evident that the chest pump had done it's job, it was turned off and disconnected. The next thing I know is she is walking!  By the end of the month, Lizzie was attending her sister Alex's graduation! She was off - not running - but on her way. She was removed from hospice care so that the blood clot could be treated. Boy oh boy she hated the treatment for the blood clot! The next step was to remove the pic line and the tube that connected the chest pump.  However, over the course of the summer, she began to deteriorate.  At the end of the summer, Lizzie's dad came to pick her up to spend some time with him. That definitely was hard for me. But, I thought spending time on the coast would be good for her. I imagined her sitting on the deck or beach just soaking up some vitamin D. But this was not to be. The ammonia level was building up in her body. She was admitted into the hospital in Corpus Christie. The ammonia levels affected her life processes. She had to be fed through a tube in her nose. She didn't recognize people. She couldn't feed herself. She couldn't drink through a straw. The medication that was given to lower the ammonia level gave her serious problems. (I won't go into it. Lizzie would be embarrassed.) But, it was working. One day, she reached up, grabbed the tube, and began pulling it out. I knew she would be getting better. She had enough. Little by little she began to first say one or two words, then sentences. Again, the decision was for Lizzie to return home on hospice. The problem was how to transport her. Insurance would not provide an ambulance and  I knew she would not make that long drive in a car. Her dad happens to be a life-flight pilot. The company he works for agreed to transport her to Lufkin. She came home via helicopter and on hospice. I waited on the roof and watched the helicopter land. I walked over and grabbed her hand. Lizzie turned her head and said "Mommy!" I asked her how the trip was. She said there was a lot of scenery. That was our first introduction to the wonderful people at in-patient hospice. It's funny to think back now how she didn't want to stay in the hospital. We assured her it was just for a short time to get her stable. It's funny because that became her favorite place to be! I can remember Amber and Kevin, her hospice nurses from before, being shocked at how her health had declined.  When she came home, my mom and my aunt took turns caring for Lizzie during the day since I had to work.  At some point, Lizzie had enough. She improved again. But, when you look back at pictures, you can see the effect the disease had on her body. Cancer is a calorie sucking disease. Lizzie ate and ate, but the weight fell off. She was unhappy. She hated being cared for. She hated depending on others. She absolutely hated the medicine she had to take to keep the ammonia from building again. She made the decision to stop taking it. She told me that it did no good to be able to get around if she couldn't leave the vicinity of a bathroom. She was frustrated. She then entered into "Respite Care" at in-patient hospice. Geesh! You would have thought she was the Queen of England! She was the little queen bee of hospice. She loved the nurses there and the nurses loved her. They would sit and discuss movies or music. They would take her on a spin around the hospital.  Basically, whatever Lizzie wanted she received. However, respite is short term. She returned home and was unhappy again.  That's when we were introduced to The Joseph House. The Joseph House is a end-o-life care facility in which the residents have their own little apartment with around the clock care. It's a beautiful facility. Lizzie moved in and made friends again. I think this was around November. We fell into a routine. I would work during the day and go stay with Lizzie at night. She had a constant list of visitors especially Kelly Adams-Williams and there became Queen of England again. She would visit the other tenants, sitting beside them and talking about whatever came to mind. The caregivers set up a cot in the office for when Lizzie went to visit and would fall asleep. An arm chair was requested so that she had a comfortable place to sit on those visits. Her friends Kaitlyn and Walker McWilliams lived just down the street from The Joseph House. Lizzie had no problem calling them and asking in a round-about way if Kaitlyn was making her favorite dish. It didn't matter what was on the menu that night. It was now Lizzie's favorite dish and taxi service to their house for dinner. There's a story about sweet potatoes and The Joseph House that I won't tell here....and naked cherub angels.
 There were a couple more visits to in-patient care - each time improvements made which is ironic considering the purpose of in-patient care. On one of those visits - exactly one year ago today (11/26) she was at in-patient. They released her and we went immediately to the other hospital to see her nephew born.  We rolled into the delivery room just minutes before Sawyer was born. I remember the huge smile on her face as she remarked "This is amazing!" No, we weren't in the delivery room exactly when Sawyer was born. Lizzie decided that she didn't want to stay for that. On another visit, Amber came and got her, rolled her across the street, and we walked in the Memory Walk. She literally lit up and came alive at in-patient hospice.
 But her health was continually failing and so were her spirits. Christmas came and she spent it sleeping. Again so disappointed because she missed the opening of presents. The ammonia was building and affecting her body. She had difficulty seeing and  walking. Texting and using the computer were almost impossible. Her hands shook so badly.  I think that was really hard on her - seeing life continue but not really being a part of it. I compare it to being in no man's land. She was with us but not really. Her friends were going on with their lives - lives that she had been so much a part of but not any more. They were going and doing and she couldn't. They had conversations that Lizzie no longer could participate in. She was an outsider to a life that had once been so important to her.