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.

Testimonies Part 1

I remember when Lizzie and Alex came home from visiting their dad in Hawaii August of 2011. Lizzie was repeatedly throwing up. (I think that's the trip when Lizzie threw up in Alex's purse on the plane.) Said she was sick in Hawaii but blamed motion-sickness. Looking back, she started getting really tired in 11th grade - hair thinning, no energy, sleeping a lot. She was trying to keep up with ther schoolwork and participate in Panther Pride. We both thought maybe she was just over extending herself. So fastforward to her senior year. I had made an appointment with her doctor on a Monday, but she was so terribly sick that I took her to Urgent Doc. There they drew blood and ran some tests which came back with elevated liver levels. I can't remember what they thought was wrong with her, but they were concerned about the liver levels. Took that information to the doctor that Monday, and they ordered more blood tests. This continued for approximatley 7 months. Blood test after blood test. Doctor after doctor. Stomach virus - no, abdominal migraines, strep - one "diagnosis" after another. Me so frustrated with the medical profession that no one could figure out what was wrong with my child and fix her. That fall Mom, sister, Alex, Chrissii, Lizzie, and I went to see "Wicked" in Austin. That entire weekend Lizzie was so sick. I called the on-call nurse at our doctor's office - griping - that this was ridiculous and that they needed to do something. The nurse sais she had strep. Bring her in. She was referred to Texas Children's in Sugarland. Traveled there twice with no answers.In fact, I refused to take her back because the doctor there really didn't examine her or anything - just ordered more blood tests. Finally was referred to a gastrointerologist here. He was about to order more blood tests....again....and I remember getting a little perturbed. I was so concerned about the throwing up - how it affects the esophogus, teeth, gag reflex, etc. And the days missed of school. Lizzie was working so hard to graduate with honors. Missing all those days was stressing her out more. So...the doctor orders a CT, MRI, and endoscopy. Lizzie had the CT first. I watched over the shoulder, never realizing all the click-click-clicks were the measuring of a tumor. The next week Lizzie had the MRI then on to the endoscopy.I had scheduled them on one day to try to not miss yet another day. Lizzie was just coming around from the endoscopy when the doctor came in and told us that her general doctor wanted to see us immediately. Ok, I like all the doctors at the clinic where the girls had been going for years. I can tolerate some more than others. So, when told we were to go to the doctor's, I got a little angry, argumentative, "b.......". Lizzie either had a reaction to the sedative or she was simply throwing up again. I can remember saying "I am not taking my child there to sit in the waiting room for 2 hours so that Dr. So-So can talk to us for 5 minutes." Blah, blah, blah. Gripe gripe, gripe. (not one of my finest moments). But I was told to take Lizzie to the back door (didn't know there was one) and they would let us in and immediately take us to a room. So, we go. Back door - immediately to room - Lizzie lays down and falls asleep. Pillow and blanket brought in. Doctor comes in and breaks the news. Enter Salvador Dali. From that moment on I have felt like I was in some surreal world. I'm sitting there. Staring at the doctor. Lizzie staring at me. Thinking that no, this is not my life. Wanting to cry but not crying because my child needs me to be strong. Lizzie being as calm as can be. Big question - how did this extrememely rare form of cancer find MY CHILD?

How are you doing?

One of Lizzie's good friends from Texas Children's Hospital called me today. It was good to hear her voice and to catch up on what's been going on. She was so instrumental in helping Lizzie keep a sense of balance in her life and also to help Lizzie remember she was still a teenage person with teenage wishes and dreams. She really helped Lizzie cope with being a teenager with cancer. Saraben was a good soundingboard for Lizzie. And, as most conversations start these days, it began with Saraben asking, "How are you doing?" I ask myself that question every day. Exactly how am I doing? I go to work every day. We've started extended day, so I teach that 4 days per week. I've primed my livingroom - getting it ready for new color. (I may just leave it white.)I've babysat my grandson twice now and loved every minute of that. Alex and I are about to embark on our New Orleans adventure during Spring Break, and I'm definetley looking forward to that. Life goes on. You wake up every day and go to sleep every night. As long as I am busy, I'm ok. It's the quiet times that get me. Those quiet moments when a memory of Lizzie will drift in. A moment like gleefully opening my teacher friend's girlscout cookies and noticing a box of Lizzie's favorite kind in the bag. Hearing a song on the radio that just so happened to be Lizzie's ringtone for my phone... and wishing it was my phone ringing. Walker spoke of this very well in his eulogy at Lizzie's service. He spoke about when the Apostle Paul asked, "Death, oh Death, where is your sting?" Those stings do get me. It's walking into her room and wanting to see her there. It's a favorite shared show and wanting to talk to her about it. It's missing tucking her in every night - yes, my 19 year old still insisted on being tucked in. It's saying "Goodnight Pumpkin Seed (I called her something different each night). I love you." and hearing her answer "I luuvv you". (She had a way of drawing out the love part). It's remembering her hand reaching out to grasp mine. And, to be honest folks, there are times that I actively reach out for those memories. There are times when I do want to feel the sting that accompanies death. There are times when I call out - screaming inside my head - for Lizzie. I will purposefully wander into her room just so I can feel the tears wellup in my eyes and my chest begin to hurt. I guess what I'm saying is that I don't want to be ok. I will proceed with life. I will enjoy spending time with family and friends. Who knows? Maybe I will go back to school or move to a foreign country. (I keep telling my family I am moving to central America and opening up a fruit stand.) But I don't ever want to be ok with losing Lizzie. I want to continue to feel the sting left by Lizzie's absence. And that is ok.

This is Lizzie's Mom

I could not just let Lizzie's blog drift quietly off into cybersunset. So, for a little while, I will continue to post through Lizzie's blog. Maybe it will become as therapeutic for me as it was for Lizzie.