Lauren Elizabeth Hacker's Journal
Back to School-The New Normal
Written Sep 17, 2013 10:10amI am finally sitting at my office desk on my computer. Oh wait, we don't have an office. It is Lauren's temporary bedroom and there are headphones, a brush, and about 20 of these rubber band bracelets from her loom all over the desk. We are still in the midst of construction. I'll tell you about that later. Her first day of school picture is on the camera....can't find the cord to download it. I will soon!
Lauren and Jonathan are back in school and fall is settling in. The air is finally a bit cool and as much as I hate to relinquish the summer, we have moved on. Lauren was not nervous at all to start school. She jumped right in as she usually does. No fear! I guess it made sense that Taylor sang "Fearless" to her in the hospital. She could sense that about Lolo. She is fearless, just shy. The shyness is still there, but I can't mistake it for insecurity. I guess I made that mistake before.
Lauren has Mrs. Clark as her homeroom teacher. In usual fashion, she loves all her teachers this year and is just excited to be there. The big surprise is Jonathan is kind of digging school at Prep also. Who knew? Lauren is also excited to be playing volleyball again this year. Phil and I are coaching her school team as we did last year. We liked it last year; this year it is really fun for us as we are thrilled that we actually can do something like this with Lauren. Not bragging or anything, but we have a heck of a team also! Lauren is also playing on her Elite Team. Her arm is getting stronger everyday and so is her endurance. She has started back at piano, but is having trouble getting in a schedule of practice. I have hopes for this as music is the thing she gets lost in and I want her to have this for herself.
It isn't the roller coaster ride as it was in the hospital. There are highs and lows, but not anything like the life and death struggle from December to June. But, the exhaustion has taken its toll on all of us. Lauren is probably the most well rested in the family. But, she is trying hard to rebuild her body. I am sure most people don't see it. She is like me, she just puts a smile on her face and propels forward. But, keeping up with her peers is hard on her. I wanted to slow her down, but her doctor told me as long as she is eating and getting sleep, it is important to let her push herself along. I kept her home last week in the morning to get her some extra sleep. We are keeping our days relaxed. Even though we are in the middle of construction, the week is easy and light, except activities. We concentrate on homework, family dinner, and really quiet nights focused on getting her rested. Her muscles hurt, her emotions are a bit high, and she is so tired her mind has a hard time winding down. We ease the lights, no TV, nice music on when she wants it and we curl up with her and help her sleep. She still loves her Taylor Swift and puts it on her iPad to fall asleep. I have let go of my standards for grades and let her put out the best she has right now. These are dramatically different, but, that is ok. This new normal for her is a struggle. The chemo makes it hard to process information and it hasn't been that far out from chemo for her. it will take a couple of years to know the full affects of the chemo on Lauren. She still has trouble with running and such. Her head pounds and she gets a little light-headed. We know the "red devil" had an affect on her heart. We won't know how much or if it will get worse over the next 2 years. We are monitoring it. She also needs to get back in shape after being in the hospital bed for 6 months. An 11 year old is frustrated by this notion. That makes her downright mad. I can relate. But, she just charges on. Her upper body is starting to recover. Her posture is changing. She isn't as hunched over and weak. She is regaining strength in the muscles of her shoulders and chest. These muscles are recovering from being cut to put the different central lines into her chest cavity. She doesn't like her scars. They rub on her shirt and can be tender. She is worried someone will see them. She is getting used to the way she looks. To me she looks like an angel with her hair enveloping her beautiful little face. But, she is uncomfortable with her short hair that is now really thick and a bit curly. I used to not be patient with her when she fits over her hair; now I help her smoothe it and gel it down. She misses her long hair that was straighter. Every comment that her friends make about their cute hair styles and every time a friend touches another friends hair, as they do in 6th grade, I see that look in Lauren's eyes. But, she shrugs it off pretty quick and moves on. She is back in the mix of her friends. She loves them all. She has missed so much time with them. She is different now and is trying to introduce her friends to the new Lauren. Her closest friends don't seem to notice a change. They were with her all along. They are protective of her. They are so dear. Some of the other kids are in awe of her and some feel uncomfortable. It will all work itself out. Some of it is awkward. She has a little bit of fame and is a celebrity at school with some of the little kids. To much is given, much is expected.....or so it goes. It is weird to think that so much has been given to her. It seems so much has been taken away. But, to some, there is some jealousy of that attention she has been given. It is interesting, attention is something Lauren has never wanted. Attention from her friends and parents, maybe. But, being in the limelight is not a coveted position for her. But, I talk to her often about how to make sure that this attention doesn't change her and she uses it is a positive, not negative way. Taylor Swifts' mom talked to us about that in the hospital. I don't envy her position. I can't imagine trying to protect a child in this world from fame. It is hard enough for me to think about just keeping my child alive. (I know, a little dark, but true.)
So, what now? Lauren will see her new doctor, Dr. Coulter once a month for testing. She will see a cardiologist every 6 months. We wait and see. I didn't want to give her prognosis publicly. But, I am so uncomfortable with people reading crazy stuff off the internet and I am worried that this will come back to Lauren through one of the kids at school. The truth is that she isn't cured. Remission means she has no leukemic cells in the last sample of bone marrow that was taken. Could it actually still be there? Yes. But, we think not. Once a month, we will keep gathering information. Could it return? Yes. She has a 50% chance of staying in remission. Those odds used to take my breath away. They are our new normal. They are what Phil and I live with everyday. So, yes, it does bother me when people come up and say, "Aren't you glad this is all over?" It bothers me right now; I will get used to it. But, other things don't. I believe in Lauren. I also believe in being present in the moment. I don't believe in worrying about the future. Wow, that is such a huge change in me. It is liberating. I feel incredibly hopeful. I also hope that people don't stop praying for her.
On September 11th, she had her check up with Dr. Coulter. (Our dear Dr. Thoompson retired.) The handsome and silly Dr. Coulter is a great fit for Lo. He was sweet to her. He also talked to her about being kind to herself and letting herself heal. He talked to her about accepting the new Lauren that is extremely special to all of us. He is a good egg. She passed out at her appointment after he blood draw. She was tired from school and her lips went white. I was so worried and hanging on for her labs was a bit tense. I thought maybe the anemia was back. It wasn't. Her labs were off, but within normal parameters. She wanted to go visit the 6th floor and hug all the nurses. She misses them. But, by the end of the appointment, she forgot that is what she wanted to do and wanted to get to a friend's house to work on a group project. I thought is was ok to let her move on. She is ready. I dropped her off at her friend's house and she was excited to see her group. She got right into the mix and was being silly. She had already forgotten that she just went to her oncology appointment. No big deal. I left and cried all the way home. I cried because I was relieved that her appointment went ok, but mostly because of the joy of watching her back in the mix of normalcy.
A Time for Everything
Written Aug 20, 2013 12:28pmThis last weekend was about Celebration. It was a celebration of life and a celebration of small victories and big ones. It was fantastic, absolutely beautiful, actually. We had a great party at our house on Friday. It was so unlike Phil and I to throw caution to the wind and put out an open house invite, not knowing how many would actually show up. But, it was the best kind of party. Those that could come were there. Those that couldn't can put this time on their calendar for next year. We are going to do it again. Our new extended family, the Sieffs brought it...so to speak. Zach and Adam made the whole night special to us. They are the epitome of fun. I love their generous hearts! The music was hoppin'! It was fun seeing all of the kids out on the grass dancing and having fun. Of course, having the CU VBall girls there to keep things rolling helped too. I am so appreciative of all of the people that showed up to help us celebrate. It was nice to see every one of them. We even have some new friends too. The weather was perfect, but the smiles on everyone's faces was what really warmed my heart. Seeing both Lauren and Jonathan out dancing with their groups of friends at the same time is a memory that will hold me for a long time. Jonathan has even started to get over the fact that if there is music, it is a known fact that I am going to dance. Not many things are as liberating as shaking your groove thing to a groovy beat, don't you think? So, plan on end of August next year.....come by....we will be doing it again!
The next night, we had 50 Team Lolo participants at the GloRun. We did have a few slip ups getting this thing going, but it was somewhat confusing online on how to get the team thing going. We learned a lot and will make it happen again next year. Lauren eneded up with 8 of her classmates doing the GloRun with her. Kim Root, Lisa Manning, and I walked with the kids and the rest of the team dispersed either running or walking faster than we did. Nanny even did it!!! It was a great time and an even greater cause. Our team was made up up nurses, friends, relatives, Phil's coworkers, some of my former SRB coworkers.....Team Lolo rocked!!!! We ended the night by having some pizza at the Pizza Shoppe with the Roots and many, many kids. We stayed up a little too late, but all in all, it is time to let Lolo push the envelope and not keep her in a box. My tendency is to keep her too rigid, too safe. I need to let her return to being Lolo again. This weekend taught me that. I need to keep her safe and not be careless. But, there is a time for everything. It was our time to dance, to sing, to run......to celebrate! God has given us many things to be grateful for.....I am so thankful that Lauren is home, for my family, and my wonderful friends that help us celebrate! Thank you for sharing our joy!~
You Are Invited!!! Friday, August 16th
Written Aug 13, 2013 9:07am
To say thank you to all of the friends, family, and neighbors that have helped us and loved us through the process of Lauren's treatment.....And to celebrate with our family Lo's remission, Phil's and my 25th anniversary, Jonathan's graduation (& start of high school)-We are making up for some lost time and throwing a Partay!
YOU ARE INVITED
OPEN HOUSE @
681 Hackberry Rd
Friday, August 16th
730 pm-1030 pm
Music by Adam & Zach Sieff
Great food and good company
SEE YOU THERE!!!!!