Friday, March 7, 2014

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?


  1. Hello, My name is Mary. At some point in time, I don't remember how...I came across your sweet girl's blog. I read every single entry and sat in amazement at the beauty of Lizzie s words, spirit, spunk, honesty and faith. In awe, truly. I left her a few comments on the blog and we even emailed a bit. I have come back so many times to check on her, but there were no updates for so long. I knew in the deepest part of myself, that Lizzie had moved to heaven. I didn't know when as I was never able to find anything on line, despite several attempts. I am so sorry to check in again today, and see that indeed Lizzie has left this world. I too have a beautiful daughter that lives in heaven. Her name is Mattie and she was diagnosed with an extremely rare leukemia on her 16 1/2 birthday and lived and loved until she was 17 years and 87 days. It will be 3 years on the 19th of this month. Forever ago and yesterday at the same time. Im so sorry for how your heart is breaking as you struggle to live in a world that does not contain your daughter. I have learned so much from your Lizzie and I want you to know that I heard her voice loud and clear. She taught me so much about my daughter's own journey and I am so grateful for having stumbled across her life. I sensed such a connection in their spirit and faith and it was healing to me to hear Lizzie articulate what she was experiencing as a teenager, like my Mattie. I do hope with all of my heart, that their souls have connected somehow. I did not think that nearly 3 years later that I would still be standing, that I could still be tethered here on earth somehow. That my heart and body could withstand the pain of loss and grief. But I know, more than ever, that the veil between us and the world in which our girls live is very thin and they hover very near. That they sit in wonder and awe as we, their mothers, continue to love them unceasingly. I know the crushing grief of your heart, the wondering, the waiting, the analyzing, the anguish as you wade through these most difficult times.

    I did not seek other grieving parents out for a long, long time. No reason really, I just didn't think of it. I have just recently found a few groups on line. There are facebook groups and most recently I discovered a lovely blog for bereaved parents. It is written by a mom who has turned her grief into support for other parents facing the loss of a child. You can find it here: Her words are gentle, uplifting and encouraging as they walk in this life without their beautiful 17 year old daughter.

    May your ache find a little smile today. I am so very grateful for your beautiful soul of a girl.

    Mary Nickels

  2. My sweet friends, Miza and Destin, just lost their son. He was our friend and was 33. The looks of sheer loss on their faces are indelibly imprinted on my mind. My sweet friend, Ramona, lost her 17 year old daughter in February, then lost her mother 6 days later.... how each and every one of you touch me and make me stay focused on what is important. I hope that you all keep posting...I pray for your healing...I smile at the times I saw and visited with you and your children...May God keep you and hold you close until it is time for you to be reunited with your sweet children.