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.

Wednesday, August 27, 2014

Spiders

I'm not a big fan of spiders. I know they are beneficial. I can examine a spider web and wonder at the intricacies of the design. When I taught science, we didn't kill the spiders. We recued them to fulfill their purpose.  But I just don't like them. I can deal with them, though, when I am prepared. If I see one across the room or am called to take care of one, I can deal. It's the unexpected ones that give me the chills: the ones that drop unexpectedly from above or suddenly appear crawling on your shoulder. Because I recognize this fear, I avoid spelunking in dark caves, exploring dilapidated houses, or walking with someone who likes to play practical jokes.   Grief is like that. I received a questionnaire the other day from Hospice in the Pines. It basically asked a series of questions to evaluate how I am doing. Some examples:
1. difficulty sleeping = only when there's a symphony of snoring
2. little appetite = just the opposite. I can always eat.
3. have not been able to return to work = nope. I find comfort in my job.
4. avoid going places or doing activities I used to go with Lizzie = never. I love remembering.
But then there's
5. lacking in energy = yes
6. attending to Lizzie's personal belongings = haven't done it yet.
7. possibly depressed: don't seem myself anymore = yes
8. allowing myself to really let go and cry = here's where the spiders come in
I can talk about Lizzie all day long. I have no problem with providing anecdotes of life with Lizzie. I am prepared for those. I have control over the situation. It's those times when I'm not prepared that get me and I have a hard time dealing. We were asked to remember the first day we took our own child to kindergarten during an inservice for school. I had no idea we were going to be asked to recall. All of the sudden, an image of Lizzie popped into my head. Lizzie went to kindergarten at the same school at which I taught. She would run errands for her teacher and would always take the long way back to class so she could stroll by my room. I can still see her looking into my room as she passed - walking very slowly - with this cute little smile on her face. I would stop my lesson and run to the door to give her a quick hug and tell her that I loved her. Grief was a spider that fell from above. I felt the tears well. I felt the pain in my chest. And when my dear friend looked at me with sympathy in her eyes, I lost it.  I've learned to avoid certain situations. Even though I read The Fault in Our Stars (at Lizzie's insistence), I will not go see the movie. I refuse to watch The Red Band Society that is about to show on TV or the show where the girl finds our she has leukemia. Certain commercials on TV or the radio get hastily changed. So how am I doing? Not sure. I miss Lizzie so very much. Words cannot adequately express the depth of my missing her. It's in my bones. It's in every breath I take. It's in my core. I know letting grief out in a good cry can be beneficial. As long as I avoid those dark caves and scary houses, I have control over my grief. As long as grief doesn't drop from above like a handfuls of daddy longlegs, I'm ok..... I guess. I don't know. Likening grief to 8-legged creatures is kind of weird.....

Tuesday, August 26, 2014

Testimonies Part 4

So, the next year was a whirlwind. Lizzie was off at college enjoying her life. In the fall, we had family pictures taken. I can still see Alex chasing Lizzie through the trees at St. Cyprian's. I'm not sure what Lizzie did to Alex, but she was sprinting around laughing while Alex chased her.  In December, my mother arranged a trip for Lizzie, Alex, Stephanie (sister), me, and herself to New York City. It was a wonderful trip. Our hotel was fabulous and only a few blocks from Time Square. Needless to say we walked around in a state of awe. Imagine 5 small-town East Texas women loose in the big city constantly looking up. And it snowed! We visited Rockefeller Center and saw the famed Christmas tree and all the ice skaters. Someone was filming at the time, but we couldn't tell who. We made it to the top of  The Empire State Building, roamed  The Metropolitan Museum of Art and the Museum of Modern Art. I didn't care that much for modern art, but the MET was awe-inspiring. We walked central park - rode a horse-drawn carriage through the park, and strolled down 5th Avenue. We even got to see Wicked on Broadway! The store fronts were decorated for Christmas and were amazing. I can remember being stuck in the middle of my mom and Stephanie and the two girls. I was trying to stay with Mom and my sister, but also trying to keep an eye on two teenagers blasting their way through crowded streets. That February was a trip of a lifetime to Rome, Italy through the Make A Wish foundation, Alpha Chi Omega sorority at SFA, and an anonymous benefactor from Huntington. We had been working on this trip for an entire year. It came to a point where Lizzie's oncologist contacted Make A Wish and said that if she was going to be able to go, it needed to happen soon. At that time, Lizzie was still full of energy and I'm not sure if the gravity of her condition registered. All five of us were able to go: Ricky, myself, Lizzie, Alex, and Chrissii. The flight over was rather uneventful.....except the in-flight movie was TAKEN! Yikes! It was over night, so we slept. We weren't so lucky on the way back. Our hotel was very nice - not far from the Coliseum. The three girls stayed in one room. We could hear them at night laughing and giggling and cutting up. Our first night there we ate at......Hard Rock Rome. BUT, while roaming around after dinner, we stumbled upon The Trevi Fountain. This quaint shopping area became our stomping grounds. Make A Wish did an excellent job of planning  our stay. We were able to see The Coliseum, The Vatican, roam the city, shop, and take a train ride to Florence to see Michelangelo's David. (He's huge!) We went on a walking tour which was very interesting. Our guide showed us where you can actually see where Rome is built upon Rome! She told us that The Coliseum is not in ruins due to age, but parts were actually taken to build new parts of Rome. When building the Vatican, bronze was taken from other structures such as The Pantheon to be used. We saw the most magnificent fountains and statues - all with truly interesting back stories. We were there at the time when the new pope was being decided upon. It was interesting to look each day to see if the color of smoke changed. We also learned that when Romans are taught to drive, they are taught to "fill the empty spaces." This idea created many harrowing taxi rides for us! The girls had a blast, and everyone there was so friendly! At first, Ricky and I were like secret service men standing outside of stores so that the girls could shop. After a day or so, we felt comfortable enough to give the girls some space. Thinking back I'm literally at a loss for words. In February Lizzie was buzzing around Rome. Just a couple of short months later she was tired, sick, and out of breath. As I've said before, Alex and I visited Lizzie for Easter. She was feeling drained. In May, Ricky and I visit to help move most of her things back to Lufkin. She had no energy. A week later, she was in the hospital. It all came crashing down so quickly. She never really recovered from the chest pump.

Saturday, July 19, 2014

1 More

Mission trip to Africa or South America (maybe even both!!)
Skydive Judy Winger
Bungee Jump
See an alligator in the wild  Alex and Mom - Spring Break 2014 and Susan Berquist
Tickle a penguin
Go to a Katy Perry concert
Meet Ryan Gosling
Meet Joseph Gordon- Levitt
Go to Europe
Visit New York during Christmas time
 Go scuba diving Kelly Adams-Williams and Scott Williams
Adopt (more like sponsor) an orphan    Me (Dianne)
Get a tattoo
Go on a helicopter ride over Austin at night
Cheesy I know, but get my first kiss
Ride in a hot air balloon
Run a 5k (for those of you who don't know me, that's a big deal because I DO NOT run)
Take dance classes again
Go paragliding
Ride a segway
See floating lanterns like in the movie Tangled
Crowd surf
Be in a professional photoshoot
Go to a filming of So You Think You Can Dance
Watch a meteor shower
Jump off a waterfall
Go rock climbing
Play paintball
Watch sea turtles hatch
Pet a giraffe
Hold a monkey
Visit a glow worm cave
Get a hot stone massage Nisha George
Swim in Blue Hole (She didn't get to swim in the Blue Hole, but was able to visit it! Thank you Fran and Susie!)
Learn to play the piano
Visit a walk through aquarium
 
 
 
                This wrist band was worn by Kelly and Scott on their scuba diving trip.
 

                                                        She's wearing a Lizzie shirt!
 
Nisha says she is grateful for Lizzie's list that gets her to try things out of her comfort zone!
 

Friday, June 20, 2014

About the Lizzie Challenge

About the Lizzie Challenge - please send updates and pics of bucket list items that you specifically chose to do in memory of Lizzie. Example - Alex and I chose to go on the swamp tour because Lizzie wanted to see alligators in the wild. (We tried to cross off the tickle a penguin, but couldn't get tickets to the penguin adventure.)  Chrissii, Kyle, and Alex are planning a sky diving adventure in honor of Lizzie. I'm sorry if I have offended anyone. I absolutely love seeing the wild adventures you guys have had (maybe a tad jealous too!), but I really intended for people to look at her list then decide what adventure to undertake and dedicate that experience in order to Live Like Lizzie.



Thursday, June 19, 2014

Testimonies Part 3

The next step was surgery. Lizzie had lost so much weight with the chemo that her surgeon was a little concerned. She was instructed to eat any and everything that would put on the pounds - which, except for ice cream, was hard for Lizzie. She was always a very healthy eater: salads, grilled chicken, some pasta but not a lot. She tried though. The surgery went well. Two-thirds of her liver was removed, her gallbladder, the tumors previously seen on the MRI and any other spots the surgeon felt could possibly be tumors. To say she had a painful recovery would not be giving a clear picture of the pain. She was miserable. It was one of the few times she seemed depressed. Simple functions such as sitting up, getting up, or  coughing  were extremely painful. I think Lizzie's greatest fear was not being able to be a part of life. That sheer determination to be living every moment possible is what gave her strength to bounce back. And bounce back she did.   Her first goal after recovering from the surgery was to get that portacath removed. I guess it was symbolic of being held back from doing what she wanted to do.  And college? She couldn't wait to go! Alex and I took Lizzie to her freshman orientation. Well, not really orientation - more like Fish Camp for any Aggies that might be reading this. I think it was called Gone to Texas. We stayed at a hotel downtown the night before. Lizzie wanted to go the campus - "but don't worry, Mom, it's just up the road". No, it wasn't. It was 10 blocks up the road. But we walked......uphill. She was literally skipping and dancing when we reached campus. Her eyes were as big as saucers. She couldn't contain her pure happiness that she was now a part of UT. We strolled through campus to "the drag" and ate at a pizza place the girls love. We tried to get a cab back to the hotel, but no luck. So we began our trek back towards downtown..... at least it was downhill this time. At one point these guys started following us. I would turn around every once in a while to look them straight in the eye. (supposedly wards off attackers). Finally I tell the girls we were going to take a left at the next corner. The guys did too. At the next stoplight we stop and all 5 are standing there awkwardly. Then one of the boys asked, "Is this 6th street?". The three of us started laughing and told the boys that they had a couple more blocks to go and pointed them in the right direction. The next day we go to drop Lizzie off. . You would have thought someone placed a hot poker in the seat the way she popped out of the car. In a blink of an eye she had grabbed her suitcase, headed towards the check-in desk, and turned  briefly to wave goodbye. And that was it. Lizzie was in college. You know, Lizzie liked to talk about the "perks" of cancer. One such perk was that it got her into the dorm of her choice. Dr. Thompson made sure of that. And her roommate? What a dream! Lizzie and Jennifer were two peas in a pod. And the little group that was formed was a blessing. Most of the group were classmates from high school, but Jennifer and Jeff were welcome additions. They were a tight-knit group and I am so grateful for each of them. Lizzie loved being in college. If she could have bled burnt orange, she would have. She loved yogurt at midnight. She loved volleyball at midnight. She loved the kayaking trips and the weekend excursions. She loved the live music scene and the cultural activities. She loved her part-time job and the people she worked with. In November Lizzie had her appointment with Dr. Thompson for scans..... and the scans showed tumor growth again. I think that was the point Lizzie decided to let the disease take its course. She was still open to new medicines, but absolutely no surgery. So, Lizzie develops her bucket list and began crossing off wishes......


Do It for Lizzie!

Below is Lizzie's Bucket List. I think it would be really neat, fun, cool, and interesting to try to complete her bucket list. So, here's the challenge:
Look at the things she was not able to do. Pick one or two or more and do them! Come back to this post and comment on the list item completed and when and I will update her list. I would like to include a picture too if possible. I'm not sure how to do that unless you send it to me through my email. (dianneschmidt2017@gmail.com)

Mission trip to Africa or South America (maybe even both!!)
Skydive
Bungee Jump
See an alligator in the wild  Alex and Mom - Spring Break 2014
Tickle a penguin
Go to a Katy Perry concert
Meet Ryan Gosling
Meet Joseph Gordon- Levitt
Go to Europe
Visit New York during Christmas time
Go scuba diving
Adopt (more like sponsor) an orphan
Get a tattoo
Go on a helicopter ride over Austin at night
Cheesy I know, but get my first kiss
Ride in a hot air balloon
Run a 5k (for those of you who don't know me, that's a big deal because I DO NOT run)
Take dance classes again
Go paragliding
Ride a segway
See floating lanterns like in the movie Tangled
Crowd surf
Be in a professional photoshoot
Go to a filming of So You Think You Can Dance
Watch a meteor shower
Jump off a waterfall
Go rock climbing
Play paintball
Watch sea turtles hatch
Pet a giraffe
Hold a monkey
Visit a glow worm cave
Get a hot stone massage
Swim in Blue Hole (She didn't get to swim in the Blue Hole, but was able to visit it! Thank you Fran and Susie!)
Learn to play the piano
Visit a walk through aquarium

                                                               Spring Break 2014

                                                        Lizzie at the Blue Hole