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

May 9

Today was Lizzie's birthday. She would have been 20 years old. We have a tradition in my family that when it's one of our birthdays, we go out to eat. The birthday person gets to choose where. Afterwards, we usually head back to my parents house for desert. Tonight was no different except for one thing. Lizzie was not here. After dinner and desert, we each wrote on a balloon and release it. (I know: bad for the environment.)There were purple balloons (her favorite color) and orange (for UT) So, I guess now we have a new tradition.

Testimonies Part 2

So, we found out Lizzie had cancer. If it wasn't the very next day, it was the day after that when our first appointment with Texas Children's Hospital was scheduled. I remember how impressed we were with the facilities. We had never seen such a child-friendly space. The fun house mirrors in the elevators entertained us on our ride up to the 14th floor. The bright colors and volunteers greeted us as we entered what would become our new normal. We thought is was so totally awesome that there were people who worked with the kids on art projects, and sang songs, and put on puppet shows. There's a library and even a game room. Then we meet (drum roll, please) Dr. Thompson and Dr. Wendy. Love them both! Both doctors did an excellent job of explaining Lizzie's type of cancer. And they were honest about the survival rate. The ideal situation is to catch it before it spreads. The ideal situation is to cut the tumor out before it has a chance to move to other parts of the body then follow up with chemo. So, we meet with the surgeon. He was very positive about the end results - very reassuring. Lizzie had all of the tests needed in order for the surgeon to do the best possible job......except, those tests revealed that the cancer had spread. Lizzie was Stage 4. So.....the plan changes. The new plan is for Lizzie to go through 4 rounds of chemo to make sure that after the surgery what little cells that might remain are knocked out. Her protocol was 1 week of three different types of chemo, two weeks off with an oral chemo then repeat.  Being treated at Texas Children's is different than any other place on the planet. Because the focus is children, every nurse, LVN, CPA, and doctor have the most understanding and accommodating demeanor. No question is out of bounds. No request is too much. And when you are there as much as we were, they become family. The first step was the portocath. This device is surgically implanted under the skin. It allows the IV medicine to enter without having to put an IV line in every time. Lizzie hated it. But, not as much as the chemo. The first medicine was Cisplatin. Side effect = intense nausea and vomitting. The second was Doxorubicin. Side effect = everything turns red from your spit to your urine and mouth sores. The third was PEG- Figratim. Side effect = aching or pain in the bones. The oral chemo was Sorafenib. Side effect = hair loss. But, through all of this, we were still hopeful. Continuing school was not in the cards. Since Lizzie had enough credits, she was allowed to graduate early from school. However, she missed her senior year. She missed doing all the traditional things seniors do. She was in the hospital on her 18th birthday. It broke my heart. It's hard watching your child watch life from the outside. She would get so frustrated that she was unable to enjoy life. We were invited to go to the Faust Ranch in south Texas. Lizzie develops a virus and is taken to the ER. We fly back to Houston were she is admitted into TCH. The night before prom we are back at TCH. She's severely dehydrated. However, everyone from the ER to the 9th floor made it their personal goal to have her out in time to go to her prom. They did. They had the bags of fluid lined up back to back so that when one emptied, the next one was ready to go. At 1:00, she was released. We drive over to the Galleria where she gets her makeup applied. We run home in time for her to change into her prom dress and go. Graduation was the same thing. She ends up in the hospital but through the efforts of all, she made it for her graduation. Thinking back, I guess it was all the times Lizzie was on the outside, missing life, that made the light in her eyes shine extra bright when she was able to participate. I was told that at Project Celebration Lizzie was tireless. She climbed the rock wall and raced coolers. She did it all.

Graduation

 

Faust Ranch

Prom 

Regret and Guilt

“Guilt is regret for what we’ve done. Regret is guilt for what we didn’t do.” I have been thinking a lot about regret and guilt lately. The two go hand-in-hand. You really have to be careful not to dwell too long on either. And, you have to be careful about your relationships with others. I have found myself feeling both regretful and guilty over what I didn't do with Lizzie or what I did do but shouldn't have. I want to make excuses. I want to blame someone else. I want to point out the flaws in others so I don't feel so badly. What I have found is blaming others or highlighting their flaws does nothing to remove my personal regret or guilt. It just destroys that relationship with the other person. In the loss of a loved one - a dear friend, a sister, a confidant - we hurt. The pain can become so unbearable that we want others to hurt just a badly. (insert Steel Magnolias reference.) We all want our own Wheezer to hit. And, as lamented in country music, misery loves company. Or does it? Does misery love company, or does the misery make the company miserable? The problem with misery loving company is that the misery just might run the company off. When we choose to blame others - choose to tell others where they have failed - we are really trying to assuage our own guilt. We must recognize what we are doing or risk tainting the memory of our loved one. I think back over the past couple of years, and there's a lot of "should of, would of, could of's". Who am I kidding? I can look back over the past 19 years and see the "should of, would of, could of's" Do I sit with my misery and wallow in my guilt, or do I make a conscious effort to make different decisions? Do I continue to blame others, or do I treasure my friendships? I choose to make different decisions. I choose to treasure my friendships. I choose to understand that my regret and my guilt are just that - mine. Blaming someone else will do nothing to ease the pain.

Eyes to See. Ears to Hear. A Heart to Listen

As far as I know I cannot be hypnotized. I tried it once at a comedy club in Houston. I pretended that I was. I actually got up on stage and pretended to do all the things the guy was saying to do.....until I got bored and sat down. I'd like to think that it was because I have such a strong mind. But more than likely the guy was a fake and the other people on stage were just acting too. I've been thinking a lot about faith lately. I'm not saying that I question God's existence. I haven't gotten mad at God. I haven't screamed at Him, shook my fists at Heaven, stomped my feet in protest. Lizzie always said that she had prayed for a testimony. She said that she felt she couldn't be a strong witness for God because she had a good life. So, she prayed. And she was given a testimony. There were so many times that we talked about her illness. Very, very, very rarely did Lizzie break down. Once when she was receiving chemo she asked me point blank what if it didn't work. I can still see her looking out the window of TX Children's. The room was on the side that faces Holcombe. She had this look on her face. It was one of the few times that I saw the little girl beneath the brave warrior. I always believed the chemo would work. I could visualize the chemicals searching out the tumors like liquid submarines and attacking. I just kept telling her that it had to be working. It killed her hair - it's got to kill those tumors. The times I would question why she was given this particular burden, Lizzie would reply, "Cause God knows I am strong enough to handle it. No offense, Mom, but if you had gotten cancer, you'd be a basket case." I envied her faith: So total and unwavering. Which brings me - finally - to my point. I think I am deaf. In Sunday School last Sunday we talked of knowing the authentic voice from the fake. I told my sister that I have no problem telling the difference. It's just that I am not hearing any voices. I know He is here. I see Him in the hug from a friend just when I needed it. I see Him in a community that rallied together to support my child. I see Him in the notes and letters that were sent to Lizzie and on her facebook page. I see Him in the faith that others have in Him. I went to see God' Not Dead tonight. I believe the arguments that the main character made. How can the diversity of life be a result of evolution? He's here. I know he is. I just want to hear His voice. Lizzie was right. I would have been a basket case.

Weepy

I have been so weepy this week. Little things just make me start to tear up. I saw a lady in Brookshire Bros the other day wearing a "Be the Change" Lizzie shirt. I started to cry. I have been going through photos to find some for the Panther Pride spring show this weekend, and I cry. I looked at pictures from our New York trip and realized it was just a year ago. The same with the photos from Italy. Then I came across a couple of pictures from last Easter. Alex and I were headed to Houston that Saturday to find her a dress for graduation. Lizzie had told us that she wasn't coming home - she had to study for exams. We hadn't even made it to Livingston when Lizzie called and started crying. She was so homesick. Alex and I did a U-turn and headed back to Lufkin. We threw clothes in a bag and headed to Austin. Alex stayed with Lizzie in the dorm and I found a hotel room. I think that might have been the weekend that we found the Reeds and had dinner on South Congress. It was nice. After dinner we walked down the street and bought cupcakes and wandered around a candy store that sold anything you wanted in bacon flavor. Our plan was to go to a service that Sunday. I went to pick up the girls and Lizzie wasn't feeling well. Her oncologist from Texas Children's happened to be in town that weekend, and we were going to meet him and his family for the service. Lizzie told him we weren't going. She told him she wasn't feeling well. He kept trying to talk Lizzie into letting him drop by an do a quick assessment. She declined. She rallied some and we went to a cute little spot downtown for breakfast. We spent a very pleasant afternoon shopping downtown - just casually walking around and having a nice "girls' time." When it was time to leave, Lizzie wasn't ready to let us go. We weren't ready to go either, but we had to. I absolutely hated that I had to leave her. A couple of weekends later, Ricky and I headed to Austin on a Saturday to move the majority of Lizzie's stuff home. We got into town that evening. Lizzie was going to some concert with friends so we met a high school friend of Ricky's and spent the evening listening to live music. Lizzie called and told us that she didn't go with her friends. She was having some trouble breathing (she had already had her lung drained once). We made our plans for packing her stuff. That Sunday, we got all the big stuff packed up and loaded on the truck. We were about to take Lizzie to lunch when she told us that she didn't feel that she would be able to make it. She told us that she needed to go lie down and rest. I had to leave her again. I think it was that very next week - maybe even that Monday when she called and told me that she was headed to Dell Children's at Dr. Thompson's insistence. Her breathing was very labored. The following in an exerpt from her best friend Kyle Reed's eulogy: Lizzie’s time at the university ended one night before finals when David and I took her to the emergency room because she was having trouble breathing. Although we drove her to the hospital, she walked right in by herself without us, saying that she was only going to have a checkup and a few scans. She never came back. Around 10 PM she calls and tells me they were admitting her into the hospital and she was going into surgery for a chest tube. I called my sister. We packed our bags and headed to Austin. We got there around 1 AM. We slept in the ER room with Lizzie. We were there 2 more nights. I remember because Steph and I stayed in two different hotels. The decision was then made to transport Lizzie to TX Children's in Houston. (Lizzie's choice). The tricky part was that we had to wait on a room to open up on the oncology floor. When it did, we had to be ready to go. That day, Stephanie and I packed the rest of Lizzie's things from her dorm. So, Steph and I again stayed with Lizzie. Around midnight, we got the green light. Lizzie was transported by ambulance, and Steph and I followed. We got to Houston around 3 or 4 AM. Dog tired.....and slept in the room with Lizzie. Now, people, you may not realize what a rarity it was for me to sleep in the room with my child - with either of the girls. Lizzie was adamant that I not stay with her because I snore. I can't remember how long Lizzie was there. Long enough for her to develop a blood clot. Long enough for her doctor's to tell us to gather the family. Long enough for the outlook to be only a couple of weeks. As many of you know, Lizzie came home on hospice. Lizzie came home to bounce back the first of several times.