Lauren Elizabeth Hacker's Journal
Speech About Hope
Written Jan 26, 2014 12:29pmThis is a copy of the speech I gave at St. Robert's for "A Night of Hope." It is long, but Deb asked me to give a speech and make it 15 minutes. So, I did. It times out at 14 minutes and 45 seconds.
In 1996, I had been working at Children’s Hospital for about a year. I worked in pathology as a clinical scientist. I was now going to train on making slides during a bone marrow aspiration. I went with another colleague to surgery and gowned up. The little girl having the procedure was already under anaesthesia. We had passed her parents in the hall as they had walked out of the surgery room with tears in their eyes.. She was 6 and was so little on the table. The oncologist, who would 16 years later, be one of the oncologists on Lauren’s case, was preparing all of the tools and talking to us. Dr. Gnarra did a really good job of aspriating the bone marrow from the little girl’s hip, but it was rough and painful as they all are. There is no way to describe a spinal tap and bone marrow….they are rough and painful. The bone marrow is a bit brutal. I made the slides by the side of the gurney and prepped them and walked back to the lab. I remember saying, “You would have to just knock me out. I would never live through watching my child endure all of that. I would never make it.”At the time, I didn’t have children yet. I didn’t understand the power of that kind of love. I also did not know of the power of HOPE>
On December 12, 2012, fear knocked at my door.Lauren came home from volleyball practice on Wednesday, December 5th. She said she didn’t feel well. I felt her head and realized that she had a fever. I told her she would need to stay home that next day and I put her to bed. I was planning a field trip to Lincoln to Morrill Hall on Friday and had a bunch of stuff to get my students through on Thursday, so Phil said he would stay home with her on Thursday. Lo rested at home and had no other symptoms other than a fever. This happened again on Friday, Saturday, and Sunday. The fevers were pretty high, but we piggy-backed motrin and tylenol. My mom wanted to stay with her on Monday, but this was 4 days with a fever, so I called Dr. Woodford during the day on Monday. Lo’s fever had seemed to break Sunday night, but on Monday, she had a low-grade fever. She was really lethargic, but again, she didn’t have a sore throat or any other symptoms. The only thing that had bugged me about her health that year is she had a few tantrums and she seemed tired. I also noticed her gums were really swollen after she got braces and had the orthodontist double check them. He thought I was being a little paranoid. But, in the back of my head after studying different types of diseases for 17 years, I knew hypertrophy of the gums was a sign of leukemia. But, what are the chances?Dr. Woodford called me back on Monday evening and I told him I was worried she had influenza because of the high fever. He said to bring her in on Tuesday. I knew Dr. Woodford really well. He knew my background and he trusted me that if I felt something was off, he was going to check it out. But, I still thought she had the flu.My mom took Lauren in on Tuesday. She was in good spirits and was tired, but seemed ok. Dr. Woodford thought she looked really pale, so he decided to draw her blood. Thank goodness for this instinct. It quite possibly saved her life. When he got her results back, he called Childrens’ Hospital immediately. Then, he called me at work. He said it was an emergency and had me pulled out of my class. I went to the phone and he said to bring Lauren directly to Children’s. I said, “oh no, does she have pneumonia. He said…No…you want to know, don’t you? “OF course, I said. He read me the results. I knew immediately that she had leukemia. She didn’t get diagnosed until the next day after a bone marrow aspirate and a spinal tap. But, she had three lines of cells down. Lauren had leukemia. I screamed all the way to the hospital. Fear had knocked on my door.One of the toughest nights happened early on in Lauren’s care. Lauren’s leukemic cells had burst in her lungs and she was having a hard time not going into respiratory failure. I fought the intensivist that night and wouldn’t let him put her on a vent. I knew that if he vented her, she might not make it since her body was so weak. But, inside I thought we were losing her. St Margaret mary’s had a beautiful rosary service led by FR. Weeder that night and although I was struggling, I couldn’t help think those prayers were going to make a difference for her. But, in the middle of the night she was becoming very weak and she was having a hard time stabilizing. I prayed the rosary and sat diligently by her bed. In the early hours of the morning I lifted my head and looked at her. She was in and out all night and didn’t seem to be there, but at that moment, she was very lucid. I thought this might be my chance to tell her how much she meant to me and to our family. I told her what a blessing she was to me and how when my dad died and Phil was away at war, I would sit in the middle of the night and just hold her. I said she was a gift from God and was pure joy. I told her how her daddy loved her so much that sometimes it made him cry. I told her that her brother loved her so much that he told everyone that she was his baby and he was very protective of her. She nodded her little head and smiled under that oxygen mask. I told her how she has brought people to prayer and that the entire St Margaret Mary parish had her in their hearts. I told her that Father Weeder loved her and had been there every day to see her. As I spoke she would nod ever so slightly. I asked her if she knew what a blessing she was. She held her finger up and beckoned me towards her. She could hardly speak because of the oxygen mask. She sounded like she did when she was three with her little voice and said to me, “YOU, you are my blessing” and she made the sign of the cross on my fore head. I could barely breath. I knew that God was present in that time and space with us and he had moved her heart to tell me exactly what I needed to hear. I knew in that moment that this child was so loved by God. If I was a blessing to her, I would move mountains to get her through this.Counting your blessings always gives you hope.One night a couple of months later we were in the PICU. Lauren was septic, which was bad enough, butshe went into shock. Her heart was having trouble pumping her blood because of toxins that thebacteria had released into her bloodstream. She was critically ill. It was pretty stressful. The mood was tense. Lauren was on a lot of medication and was not very comfortable. It was the second night of being moved into the PICU. Earlier that night a guy had been moved into the room next door and was moaningreally loud because of a head trauma.; It went on for hours. It scared Lauren at first. I sat by Lauren’s bed and faded in and out of sleep. His constant moanskept me awake and added to the stress. In the middle of the night Lauren was awake. I was having trouble with anxiety over Lauren’s condition. The last timeshe was in PICU, we started praying the rosary. I would pray and Lauren would rest. She liked the sound of the prayer. I took the rosary off of her chemo pole and asked her if she wanted me to pray the rosary for her. She said, “Yes.”“But, I want you to pray for him.” “Who? I asked. “The boy next door that hurt his head,” she said. “He needs it.” I don’t’ know if she how sick she was. Iknew she was really uncomfortable. But, even in the middle of that, she wanted me to pray for him. Giving to others and praying for others is the most powerful way for us to get outside ourselves, our own problems, and feel like we make a difference in this world. She knew this instinctively.
When we are there for others it gives us hope.What kids naturally do that adults don’t is to let go of sorrow and find some joy. They want to play. They find ways to play. When they do, the memories of pain and sorrow are gone. They don’t search them out and dwell on them. This is finding hope and it is what they do naturally.After Lauren got out of the PICU, she wanted so much to play. Anytime she wasn’t throwing up or hurting, she found ways to entertain herself. She loved painting nails and became quite good at it. In fact, some of the nurses and many of our new friends at the hospital would stop in and chat and let Lo paint their nails. We made new friends all over the hospital, which brought joy to our stay. She would find everyday ways to have fun. Fun is an easy way to find HOPE. Lately, I try to let go of some of the painful memories of Lauren’s 6 months in the hospital. I try to remember the fun.One of the best memories is when a big storm hit the last week of January. It was a snow day! But, not for Lauren. She wasn’t feeling that great and was in bed all day. She was kind of sad that she was couped up and was having trouble finding ways to be happy. One of my friends, Kim Root, texted announcing that “Yeah, it was a snow day> I texted back and said I was sad remembering all the fun that we had in the past on previous snow days. She replied, “Can Lo come to the window later? Other than a couple of the kids, most of the kids in Lauren’s class had not seen Lauren and Lauren hadn’t seen them. This was one of my worries. The isolation was starting to get to her. The walls were closing in…..she was losing HOPE> I texted Kim back indicating I would try. We thought around 4:00 might work. Around 4:00, I peaked out the window and saw Kiley and a couple of Lauren’s other friends playing in the snow. Lo’s nurse and I coaxed Lauren to stand stand up on the cot to look out at what she thought were just some random kids playing. She said, “that looks like Kiley’s frog hat. Then, a couple more kids ran out from the parking garage. Lo giggled and was curious as to what these kids were doing. Then she said, “that girl runs like Caroline!” Lo looked at me and looked puzzled. I said, “Yep, those are your friends!” More and more kids ran out of the parking garage. Lo was trying to figure out who everyone was and was laughing and smiling. She wrote on the window “HI!” and waved at all of them. About 30 kids ended up coming out on the snowy lawn to play, make snow angels and wave up at Lauren. As I was watching her, I realized it was if she wasn’t in the hospital room, but watching all her friends at recess playing. She was back in the midst of her people. The sparkle came back to her eyes and she smiled so big.•Between her beloved friends and her silly nurses and all the people rallying around to support her, Lo found HOPE in the people that loved her, including a timely visit near her birthday from Taylor Swift. She especially loved the ones that treated her like any other kid. Our priest, Father Weeder knew how to do that, sometimes to my dismay. One day he was bouncing the volleyball back and forth with her even though she was hooked up to a central line right into her aorta. They were laughing and having a good time. I was on the cot holding my breath hoping that she didn’t pull her line out. But, sometimes she had to disappear back into being a kid.•Dr. Thompson knew that. Sometimes when Lauren was at her worst, Dr. Thompson would say “Get those little friends up here right away.” She knew that Lauren needed to be with her people, despite the fact she had no immune system and it was a risk. Her little friends put on a brave face and stood by her when she was at her worst hooked up to machines and oxygen masks. They were shaking, but once they locked onto each others eyes, you knew that the strength and love from her friends was filling Lauren up with the kind of hope that she needed. You could see her eyes sparkle. The love found in friendship is powerful. It made Lauren fight like mad to get herself well and get back to her little friends. The connection we have with people is sometimes just what we need. I know the oldsters at church always poo poo when we give each other the sign of peace and hug and carry on. But, it is one of my favorite parts of the mass. When our family is at its worst, sometimes that kiss of peace is what holds us together that day or the shake of a stranger’s hand and a smile gives me the hope in that moment that I am connected to a bigger cause.•So….don’t lose Hope, because when the sun goes down…the STARS come out.•Our future is uncertain and I am sure there will be times when fear will knock at the door again. But, when fear knocks and hope answers, we will find that fear is no longer there when we open that door.
Living in the Light
Written Jan 26, 2014 12:08pmWow, what a little sunshine can do for the soul, literally and figuratively. Lauren and I had such a wonderful time in Arizona. It was surprising the things that gave us the most joy on the trip. We loved tracking things down in the car. I am passing on my map reading skills to her. My brother gave me a hard time about the low budget car we rented without a navigation system. But, since I am not working and we just finished a huge remodeling job, a clown car was a good choice for our rental car. It was kind of like riding one of the amusement park cars at Legoland. But, why would I need a navigation system? I found Maricopa by heading in that direction with some good navigational points and when we needed to head to Scottsdale, I found camelback mountain and maneuvered through the streets of Phoenix towards it. After all, I am the daughter of an pilot and the wife of a navigator. It was time Lo got her wings. She was my co-pilot and navigator. She started to get the hang of it. This was my job when we moved across the country every year or two in the pursuit of our next destination. It felt good to pass on some familial gifts. Lo added her generation's gift and found GPS on my phone to locate a JambaJuice. Lauren has an affinity for fresh orange juice and was so delighted to find one on our trip. What was funny is that we pulled into a strip mall on the border of Phoenix and Scottsdale to try to figure out where JambaJuice was. We looked up where we pulled in and saw a JambaJuice sign. You would have thought we won the lottery. The juice did taste better since we had to try so hard to find it. We also got advice from my cousin to go to mass at St Patrick's in Scottsdale because it was by her home. Oh my! What a cool coicidence. My friend, Kim, had mentioned her mother-in-law, Fran Root, belonged there and was so inspired by their mass. So, we went. We were late and the parking lot was full. If I had to guess, there were 1,000 people there. It might be like guessing the number of M&Ms in a jar, but that would be my guess. We sat behind the band, complete with professional microphones and a very cool kid bongo player. I turned my cell phone on and taped the music because it was awe-inspiring. I don't know if I should have done that, but I couldn't help it. The mass was an hour and a half. Lo liked it and we decided we will have to come back. We then went to my cousin's house. I had so much fun connecting with her. She was that relative of mine that I spent the most time with as a kid. She was closest in age, but just enough older that I thought she was very cool. Lauren loves her. Juli has some things in common with Lauren and I that made her seem dreamy to Lauren. She loves dogs...even naughty ones. Lauren loved her lab, Chloe, and loved her naughty beagle, Rusty. Rusty is kind of notorious and the stories of his clever mischief made Lauren laugh. She liked to tell her Dad about him when we returned. Lauren loves the way Juli decorates and couldn't wait to come home and find a neat tray to put her perfume on just like Juli. I was glad that Lauren had some time on this trip to hang with my family. As a military family, that hasn't happened as much as we would have liked. Since my brother moved from Hawaii to Phoenix this year, it was easier to see him. It was nice also to have some concentrated time with my cousin. It made me remember some really good times growing up. It also made me remember how much I admired her and still do. I think it made sense to Lauren why I liked her so much.
Lauren and I also spent a couple of days doing things that we love best: we got out in nature a bit, we toured Taliesin West (Frank Lloyd Wright home in Scottsdale), lounged around the pool and the fire at night. We stayed at the Arizona Biltmore. The old world charm captured us and we really relaxed. We were happy to find out that Jonathan and Phil enjoyed skiing in Winter Park just as much as we liked Scottsdale. We played at the pool and then sat around their big fire outside at night and looked at the stars and the backdrop of the desert mountains.
Our trip was perfect timing. I am a wimp. I cannot handle the Nebraska winters. The sunny 78 degree weather warmed me up enough to finish out the winter in Omaha with a good attitude. I went back ready to tackle some things I hadn't been dealing with.....like all of us. But, I went to mass and my favorite priest just happened to give a homily that helped. He talked about choosing to live in the light of Christ. Ok, if you don't believe....just think about the light. I think the poor me thing had hit a bit too hard in December and I had lost the energy to rebuild our life. I know that doesn't make sense-Lo is doing well. But, I was trying to figure out how to get excited about putting our house together and figure out how to go back to work. What am I going to do? Many issues were actually weighing down on me. I have been so worried about having Lauren get her life back, I was trying too hard. I wanted her to have her exact life back. I wanted Jonathan to be doing all that he is expected to do and of course, Phil needed to fill in the gaps of all my needs and expectations to heal the open wounds. My expectations were getting me down. So, do I lower my expectations? Actually, what I realized is that I shouldn't have these expectations of other people. I finally realized I needed to change myself. That is the hardest dang thing to do, especially when you have to eat a lot of humble pie to do it. But, our life and our way of coping as we knew it before has changed. My ways of doing things were not working. I realized I had so much change as a kid and it made me a strong individual. But, it made me worry that my children had to suffer through so much change and heartache like I did, so I tried to fix everything for them and worry too much. I wanted to protect them from the hurt that I grew up with and that was making me weak as a parent. That hurt is actually what has made me the strongest. It was exactly what made me know how to cope with the stress and be resilient when my family needed me most. I thought I could just pass on my wisdom and my resilience to my kids. How foolish that was. That is where I needed to change. I needed to quit worrying and give that up. I also needed to realize that hurt is part of life and to quit protecting them from it so much. I was taking away their experience that was so necessary for them to grow and feel confident in their own ablities. I realized this in a couple of simple experiences. I didn't handle Lauren's broken arms as well as she did. Granted she was in a lot of pain and she felt disappointed. But, she moved on. She dealt with the pain and cried and felt bad. She dealt with the disappointment of not getting to play volleyball by cheering on her friends and saying she felt bad, but had hope to play again. But, she also found some things to fill in the gap. When her volleyball friends were busy, she began to make some new friends. She decided to do speech. She was so excited about it and had decided to do a duet with a friend. I was glad she chose this friend, because like Jonathan, Lo is shy. I was worried speech was going to be a disapointment and it might be. But, she went to the meeting and this one friend chose to work with someone else. I was worried, but Lauren chose a new friend to work with and was so fired up about it. So, I let it go, too. I realized I dwelled too much on my kids' disappointments and tried to fix too much for them. I am learning to back off and shut up. I am learning to just be present with them and encourage them. This is hard for me. I am such a cheerleader. Encouragement has different meanings for the likes of me. I need to whittle that encouragement down some. Enough said...I guess my point is that as parents we struggle so much trying to create the perfect life for our kids. But, if it becomes our struggle we take their life away.
I miss my dad every single day. What I miss most about him was his quiet presence. It was like the warm glow of the sun and lit your soul from within. I think that is what Fr. Weeder was talking about. My dad was Christ to me and lit up my soul, by quietly nudging me to be my best self. That is what I want to be to my kids. They have such incredible gifts, I need to trust that they will find the right path. But, I need to allow them to stumble along the way. Leukemia took that trust away for a while. I think it is time to find it again. Damn, winter though, it is harder to feel that light, when the polar vortex does its beeswax.
Lauren's arms are out of her splints. She gets to return to volleyball on Valentine's Day. I hope her team lets her play for the last month of volleyball. She is excited. She is also excited about speech. School is going better too since she can write out her own work.
Jonathan is doing ok. Prep is kind of kicking his rear end as it does to many freshman. But, he is figuring it out along the way also. He is excited about his spring lacrosse season and has started to train with the team. He is going to continue tennis a couple of nights a week. He still plays guitar. I think he had so much fun skiing that he is in a slump this week. He can't figure out why he can't just ski all the time. Why does he have to go to school? He is so bright and loves the life of adventure. So, instead of worrying he will end up being a ski bum (our family's downfall-the love of adventure and leisure), I will imagine he has the makings of the next Warren Miller or Steve Jobs. I can definitely see Jonathan sleeping in a van in Sun Valley.....
I had a couple of people ask for copies of the speech I gave at St Robert's about Hope. I am going to download it on the next CaringBridge. I need to read it again. I was feeling it strong in December. I am glad I wasn't asked to give the speech in January.
Oh man, I forgot to pick Lauren up from teaching Sunday School. Thank goodness I have a good friend that picked her up and fed her pancakes too. I am so thankful my kids live in this community of good people that will feed you pancakes and take you home when you have a dingy mom.
Ready for the Sun
Written Jan 16, 2014 2:13pmLauren is doing really well. The pain in her arms has subsided enough that she is starting to do most of the writing in her classes. She has been given permissino to use an iPad and write with the tips of her fingers. She likes this a lot. She has been going to her volleyball practices and helping the coach. She likes to be connected to her team. We will find out next week if she can remove the splints or will have to have a cast for one or both of her arms. It has been about 7 weeks on Monday. I can tell that she is feeling much better because she has a lot more energy. Her last oncology appointment went really well. We will be back the first Wednesday of February.
This week's edition of Woman's World magazine features an article about Lauren and her classmates. It is a national magazine. So, if you get a chance, check it out. The picture is really sweet in it.
Other than that, life is getting back to normal. OUr house is done. Finally, done. They did a beautiful job. I will be spending the next few months actually moving into all the spaces of it. Our new ping pong table has become our new focus. I forgot how competitive Phil and I can be with each other. I am determined to kick his behind. But, last game he only beat me by two points. Lo still needs to master the game, but two broken arms is a hindrance in the pursuit of ping pong greatness. I am going to work on my Christmas cards next week. I am not really worried that they will be getting there closer to Valentine's Day than Christmas. The picture is way too cute not to send out and I just couldn't do it over Christmas. The old me is gone. No more baking marathons or Martha Stewart inspired Christmas perfection. We hung out with each other and had a pretty good dinner and went to mass. No over the top presents or mind blowing vacation. We were just there with each other. I kind of liked it.
Lauren continues to love being in school. Her teachers are helping me just go with the flow on her progress. She is happy at school and I think the rest will fall into place. That is a gift!
Lo and I are looking forward to a little excursion together. We are going to get some sun and hike. We are planning some girl time and a visit with some family. It will be nice to escape the cold and play. I love the Omaha community. But, I am a sunshine and summer kind of girl. I am looking forward to an escape. I will post pictures when we get back. Keep your prayers coming. They are keeping us afloat and I appreciate every one of them.