Alecia's story-Brad

I am going to try and share with you the story of the most courageous, loving, caring, giving person I have ever had the privilege to know. I just happened to be lucky enough to be her father.

Her name is
Anna Alecia Hall.

But before I do, I would like to thank everyone here for coming out and supporting a great cause. I would also like to thank all of our family, friends, loved ones and everyone in this community for your support and kindness. (insert names and deeds) I know I have forgotten a few and I am sorry if I left your name off this list. It was not done intentionally. Evanston is an unbelievable town. The generosity, love and caring that people have shown us makes it easy for me to see why Alecia loved it here so much!

When Jan asked me if I would like to speak today my initial thought was no way. I can’t get up in front of people and share with them the worst thing that has ever happened to me. How do I express to everyone the pain and guilt I am feeling? How do I help them understand the feeling of helplessness? How do I tell them how angry I am? Why can’t anyone answer one question for me, why? But then I realized it’s not about me, it’s about my daughter. One of Alecia’s last requests was to remember her. She was scared that people would forget her. So I stand before you today not to help you understand what we are going through but to remember Alecia. This is her story.

Alecia isn’t defined by cancer. It isn’t who she is. It’s not what she is. It’s not what her life is all about. She is not a statistic; she is the greatest human being I have ever known. So through out her story I will give you a glimpse into her life and the true kind of person she is.

Alecia was born 11/27/91 in Logan Utah. She made an impact the moment she arrived. Her beautiful red hair and sparkling eyes lit up the entire room and her contagious smile could bring you out of the worst of days. From the day she was born Alecia excelled in everything she did. She loved to read, devouring the Harry Potter books in almost one night. Her love of books was only out paced by her love of animals. Once before Alecia moved to Evanston she was riding her bike to school and herd a kitten crying in the bushes. She wouldn’t give up on the kitten. It was in trouble and needed a home. After school she raced home and convinced her mom to go back and look for it. They found the kitten and she adopted it. Alecia has so much love in her heart for others that long before she ever got sick and cancer became a daily word in our lives she and a couple of her friends started their own charity called Make your mark. They sold lemon aid at Wal-Mart to try and raise money. They were planning a car wash when we found out she had cancer.

One night Alecia told her mom that her stomach hurt and she wasn’t feeling good. Jan took her to the hospital in Evanston and the doctor ran the usual tests. He couldn’t find any obvious reason for her discomfort. Her appendices were fine. Her heart was fine. Kidneys and liver seemed normal as well. He sent her home with a laxative and told her to get some rest. By the next day the pain had gotten worse so Jan took her into to see her primary care physician, Dr. Bliss and she sent Alecia to the hospital for an ultrasound and some more tests. This would become the norm for Alecia. Test after test after test and then more tests.

An ultra sound was done on her abdomen and several tumors were found. The largest the size of your fist was found in her stomach. Alecia’s pain wasn’t from the tumor itself although something in your tummy that big couldn’t have felt good, but from the fact that it had grown so large that it was pushing on her other organs. That night Alecia was transferred to Primary Children’s hospital in Salt Lake City. Again a battery of tests were run and a biopsy of the tumor was taken. I remember thinking has they wheeled her away, she will be alright, she is strong, she will beat this thing. The feeling of peace I had at that moment gave me hope. God wouldn’t take a child had perfect has Alecia, she has so much to acomplish in life. Her potential is endless. To complete the biopsy a small incision was made just above her belly button. The clock seemed to slow down and then come to a complete stop, minutes drug on like hours and hours seemingly turned to days. Finally the doctors returned with the results. Alecia had A-typical Burkitt’s a type of non Hodgkin’s lymphoma. We were told has far has cancers go it is on the rarer side but that it does respond well to chemo theory. Alecia was given a 95% survival prognosis. 95%! 95%!

Although we were devastated 95% was the best we could have hoped for. Jan and I tried to explain to Alecia what was going on and what was wrong with her. She had questions I am sure every 12 year old would have if put into those same circumstances. When can I go home? When will I be able to go back to school. Why did this happen to me. We couldn’t answer any of her questions. All she wanted to was be a normal kid again and do what other normal kids do.

That’s when the beast known has cancer got angry and started to strike back. Slowly but surly the incisions above Alecia’s belly button started to drain. At first it was a slow leak but by the next morning it was a constant flow. Gauss pads had to be applied hourly to her stomach. We tried everything to absorb the fluid now pouring out of her tummy. Has quickly has we could get a new bandage on it seemed like it was already soaked and we would have to start all over. By the middle of the night she was tired of this. She had been poked, prodded, pinched and pulled by countless doctors and nurses. She hadn’t had more then 3 hours strait sleep in two days. She was tired, confused, frustrated, angry and in pain. Yet, she didn’t say a word. Not one word in anger. She didn’t raise her voice, she didn’t say no, I don’t want to do that. She simply sat back grit her teeth and did it. This was to be the first of many signs I saw in my daughter of her unbelieveable strength, courage and patient. How many of us could have endured that with out losing our temper? I could not.

The doctors assured us that this was a good thing. When they had taken the biopsy from the tumor it irritated it and now it was releasing toxic fluid in an attempt to stop any further attacks on it. Like many who have never been directly affected by cancer I had no idea of the intelligence and cunning of the beast. Irritated it? Stop further attacks on it? What does that mean? This thing is fighting back? How is that possible? Does this thing want to live?

After family and friends had left for the night and we had just changed Alecia’s bandage I sat down and thought about what I was doing at 12 years old. What kinda kid was I? Could I have made it though this day? Could I make it though what lies ahead? I couldn’t remember exactly what I was doing at 12 years old, but I can tell you this, I was not the person that Alecia is, I’m still not today. Alecia started Make Your Make to help feed the less fortunate on holidays. To help animal shelters, to give back to people. People she didn’t know, people she had never met and probably never would again. Think about that. What where you doing when you were 12 years old? Alecia is a child with wisdom and love beyond her age. Unique is defined as one of a kind and Alecia is very unique.

The doctors and nurses cycled in and out that night and every night that we spent in the hospital for that matter every couple of hours. Checking blood counts, temperature, blood pressure and more. A hospital can be a very quite place at 3 AM when your daughter lies in bed fighting for her life against a beast that cant be seen and until the day before was only something you read about or saw on TV. Has the days went by I would bump into other parents, some times at the refrigerator to get a popsicle or some crackers, the only two things that she could keep down, sometimes on my way to take a shower while she slept or getting a cup of coffee late at night. You could tell immediately what was happing with their child. The signs where there if you were paying attention. The sunken eyes from a long night of crying, the look of desperation that only comes when you face the death of your child, the look of fear, helplessness and ultimately realization. I thought to myself I am not going to become one of those parents. I won’t have to. Alecia is going to beat this thing. There is no daught about it. I had that feeling in my heart. I had faith. This is simply a bump in the road. She will use this experience and become stronger and for the rest of her life she will be able to say I beat cancer. After all, it’s against natural order. Kids don’t die before their parents. It’s not supposed to work like that.

An aggressive chemotherapy treatment was prescribed for Alecia and we started right away. She would sit up for hours with a small plastic pan in front of her. Only saying I don’t want to be sick any more. Never an angry word, never a harsh word, only I don’t want to be sick any more. The strange and sickening thing about cancer is that just when you think it cant get any worse, it does. Just when you think the treatment is almost has bad has cancer its self it gets worse. It never ceesed to amaze me that just when I thought it could not possibly get worse then this it always did. But every time it got worse Alecia got stronger. She wouldn’t give up. She wouldn’t give in to this. No matter what was thrown at her, no matter how big the next mountain was she would take the challenge and rise to meet it head on. She wouldn’t cry, she wouldn’t scream, she would grit her teeth and get past it.

At the end of the first round of Chemotherapy we were told we could go home. The endless tests had shown that the tumor had shrunk and were now gone. The look in Alecia’s eyes was one that I will never forget. It was Christmas, birthday and Halloween all wrapped into one. Her head hurt from the toxic chemicals we had pumped into her, her arms and body hurt from all the poking and prodding that had been done, she was sick to her stomach but she smiled from ear to ear when we told her it was leaving day. Alecia loves Arby’s. We decided to stop on the way home and get us all a little lunch. Although we were sure she wouldn’t be able to get much down how could we refuse. Alecia ordered her usual, a roast beef sandwich, some fries and even a milk shake. Not 2 miles after picking up lunch the milk shake toppled to the floor of the truck.

The entire thing was now on top of her shoes and mine. It was getting in between our laces, it was soaking into the floor boards, it was every where. I’m sure she had thought about that shake for day’s maybe even weeks. I was sure this would be the point that she finally lost it. After all she had been through she now couldn’t even enjoy her shake. Again, I under estimated her. She begin to laugh hysterically. We reached for the napkins in the sack but quickly realized they had little to no effect on the moving milk shake. We got the napkins from the jockey box, still little to no effect. The more frantic our clean up efforts got the funnier it became. It was one of the funniest things I have ever witnessed. Rather then get angry at losing her shake, she saw the humor in it. Rather then seeing her shoes dirty, sticky and full of melted shake she saw the fun of cleaning it up.

Jan took Alecia back to the hospital for her standard post treatment check up. Spirits were high our confidence was high. She had done it, she had beaten back cancer! This was just part of the process. The tests showed that the cancer had returned. I was dumfounded, we all were. What do you mean returned? How is that possible? You told us it was gone! It can’t be back, not so quickly and from all indications it appeared to be more aggressive this time. We asked all of those questions not Alecia. She just wanted to know how to beat it, how do we stop it and when could she go back to school. She loved school; she was good at it and missed it terribly. The summer before the 6 th grade she attended Casper College on a program for exceptional youth. She had a great time. She studied journalism, helped produce a play and learned a little French. As a result she wanted to go to France for her high school graduation trip.

Jan and Alecia packed up all their necessary stuff, movies, books, games, clothes anything that would help pass the time when stuck in a bed waiting for the next treatment. They prepared to start all over. This time a different type of chemo was prescribed. This one made her even sicker. The doctors gave her drugs to help with the fever, drugs to help her not get so sick, drugs to make the drugs easier to take. Some of the drugs made her feel worse then the chemo at times. Still no anger. Don’t misunderstand; she wasn’t happy about being in the hospital. She desperately wanted this over yet some how at the tender age of 12 she knew this was the only way to stop the beast. She never wavered.

After the second round of chemo another battery of test were run, countless CT Scans, X-rays, MRI’s blood work. This time the results were not so encouraging. This chemo had little to no effect, the cancer was still there. In between one of her rounds of treatments Alecia got a nose bleed. This for an average 12 year old posses little to no threat. But for Aleica her platelets were down from all the chemo and a nose bleed could easily become very serious. While waiting to see the doctor Alecia asked her mom if she thought this happened for a reason. Did she get sick for a reason? Jan looked at her once active, energetic daughter and said that she didn’t know any more if there was a reason this happened. Alecia knew why. She said because it will make me stronger. It will help me to help other people when I am older.

During the second round of chemo I found myself in the parent’s room at Primary Children’s hospital preparing to shave. When I looked up into the mirror I didn’t recognize the person starring back at me. I had become that parent that I promised myself I wouldn’t become. The signs were all there. The fear in my eyes and the look of uncertainty. I realized for the first time that things might not work out for the best. If you have never been in that situation and I hope you haven’t and never will be, its debilitating. But how could I show my weakness when Alecia hadn’t? How could I show her my fear when she had been so strong and courageous? I tried not to but I’m sure she could see it. She is to smart not to have.

Again the treatment was unsuccessful. Although the tumors hadn’t grown in size they hadn’t been reduced either. The doctors were now noticeably concerned. The tone in their voices changed, the length of our conversations increased. We had gone from a 95 % survival rate to now we were told it was 50/50 in a matter of a few short months. We were running out of options. Our doctors now were consulting with doctors who specialized in type A Burkett’s. I didn’t know there were doctors out there who specialized in one type of cancer. For the first time a bone marrow transplant was talked about. We were told that we needed to seriously consider this option. It’s extreme and very dangers but if the next round of chemo didn’t work this would be our best chance of curing Alecia. The chemo was having no real effect on the cancer and at this point putting more into Alecia’s body was doing more harm then good. But, the cancer needed to be gone before we could have the transplant or at least greatly reduced in size and number.

It was a hell on earth for Alecia.

Yet throw it all she could still make us laugh. She could see past the pain and fear and focus on the joy. We would play hang man and make up funny words that described each other and then try and guess them. We took the cringes that are in every room, took off the rubber stoppers, put up a bulls eye and fired the stoppers at it. Seeing who could hit it first. No matter how hard I tried she would always beat me at Chinese checkers and I really tired. I learned that like every other kid today our daughter loved to play video games. These too she thoroughly teraounsed not only me but her mom as well.

After the third round the cancer had been reduced in size. It was still present but it had been reduced. The doctors told us that if we were ever going to have a bone marrow transplant this was probably the best chance we would have. The decision to move forward with the bone marrow transplant is one that will haunt me for the rest of my life. How could it be worse then anything Alecia has already been through? It was.

After the transplant was completed things immediately went from bad to worse. Her fever spiked to dangerous levels and her counts were all very low or high depending on what they meant. None of them were good. The doctors told us this was part of the transplant, this was normal, we need to wait and see if the transplant was successful they said. It takes time. So Alecia waited. While she waited one of her lungs started to fill up with fluid. They took a small biopsy of the fluid, but because she had not platelets the tiny microscopic incision where they did the biopsy allowed blood to go in to her lung, Overnight her lung now instead of filling with fluid was filling with blood. She woke up and couldn’t breath. She couldn’t catch her breath and the right side of her body really hurt. The doctors now had to drain them. To do this they cut a hole in between her ribs and pushed a tube in to her lung and drained the blood. All of this done with her awake and with only a local anesthesia on the skin. She felt everything. Still she fought on!

Her condition continued to worsen. Jan and I were brought in to a conference room and told that the transplant had been unsuccessful. The cancer was now ever stronger then before due to the fact that we had destroyed all of her white blood cells and now it raged uncontrolled. It was spreading quickly and would consume her body in a matter of days. We have done everything we can the doctors said. We have tried everything we know. Alecia is going to die. 3 to 5 days maybe a week is all we were told to expect.

Alecia had been awarded a wish from the Make a wish foundation. She wished to go to Washington D.C. She wanted to see all the historical sites and monuments. We asked her are you sure? Never thinking that a 12 year old would rather go to D.C. then to Disneyland, Sea World, a movie taping. You know you can go almost anywhere you want, see almost anything you want. Nope, she was sure. D.C. was the place she wanted to go. That trip was no longer possible now her wish was to go home.

We made arrangements to take Alecia home the next day. This too wasn’t easy. With out the help of Kim from Uinta Home Health, her kindness, love and patients will never be forgotten, a gentleman from Rock Springs IV and a couple of caring doctors and nurses it would have taken us much longer. We packed up all her clothes. We put the CD player that played relaxing music in the car. We put all the games away. We said good bye to the doctors and nurses. For the last time we left the hospital. After the paramedics had laid her down in bed and begin to leave. Alecia looked up at them with those beautiful blue eyes and in the softest warmest voice said thank you for bringing me home. Jan and I looked at each other in total amazement, after all she had been through, all the pain, all the sickness, the countless hours in the hospital Aleica still had the grace to say thank you. She never stopped caring about other people.

I won’t share the rest of Alecia’s story with you today. That is something that I feel should remain with our family.

They say the true measure of a person is not monetary but rather the positive effect they have on people in their life time. Although Alecia only lived to be 12 years old the number of people that she had a positive effect on is countless. Her spirit touched everyone she came in contact with. Her courage inspired people to rise above what they thought their own limitation were. Her ability to find the good in any situation taught us all a lesson. Her forgiveness inspired me to forgive. She helped bring my family together and is still doing it today. We were better people just by being around her.

There is so much more I could tell you about this amazing child but I hope I have given you a small glimpse into the incrediable person Alecia is. I hope that Alecia’s story has inspired you to MAKE YOUR MARK. I hope that you will make this world one full of kindness, love and caring just like she did. I hope that you will help make this a world free of cancer. But most importantly I hope you remember Alecia.

I will leave you with a reflections poem Alecia won her first gold medal for in kindergarden.

Wouldn’t it be great,
if I could ice skate.
I could spin,
I could leap,
I could move my feet.

We rememeber you Alecia.

We love you.

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