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Lauren Elizabeth’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated about Lauren's fight against Leukemia. We appreciate your support and words of hope and encouragement during this time when it matters most.                                                                 

 

 

Latest Journal Update

How is she doing?

     I run into so many people and the first words out of people's mouth are, "How is she doing?"  You would think I would get tired of that, but I don't.  Lauren is doing really well.  She is a miracle, so I don't know if it will ever get old getting to tell people that she is still in remission.  I haven't written on CaringBridge for a while because she is doing well.  I also needed a break from the deep introspection that naturally comes from facing childhood cancer in a family.  We have been living our lives.  I can say that our life is somewhat normal.  It is still really hard for Lauren.  She is such a peaceful, happy kid for most of the day.  She has always had a certain grace about her that attracts people.  This has helped her and sometimes hurt her.  She also has a certain amount of fire and rage inside of her, just enough to give her a fighting chance. 

     Lauren is busy with volleyball and hanging out with friends.  She is working very hard in school.  School is difficult for her after missing 6 months of 5th grade and some of the effects of chemo on her body, specifically her nervous system.  She is gaining muscle strength and her endurance for the tasks of the day is improving.  She is training at her volleyball gym in speed and agility. She loves this!  She was giving me a gun show the other day and was proud of being strong.  We are focused on her nutrition and getting a lot of sleep.  It all is pretty normal.  Jonathan is in the same boat.  He is enjoying his sophomore year at Prep.  He is caddying on Sundays at Omaha Country Club.  He is playing lacrosse and being his usual hilarious self.  When we give him time to get his comedic flow going, he has us laughing until we can't take it anymore.  If you ever get the chance, you have to hear his "white girls" skits or "Fairacres problems."  Unfortunately, he has my 80s philosophy and valley girl speak down to a science and keeps me humble.  Our family has been having fun hanging out with our two new kitties "Tutu" and "Willie."

     We are also managing what it means to be a cancer family.  We now have a cancerversary, which is the anniversary of Lolo's diagnosis.  We have cancer friends.  We have a long list of people that we pray for and too many statistics and causes floating around in our heads.  We aren't morbid people.  This is the world of a kid with cancer.  We all share it.  You can't possibly understand the journey unless you're on it.  That seems insulting to some people, but it isn't meant to be.  It is a different existence.  The grace that Lauren has is a mixture of being completely immersed in being a 12 year old and the wisdom of a second half of life mystic.  She gets it without really being able to verbalize what she gets.  She doesn't get 12 year old girl drama, but she gets the meaning of life and what is important.  She doesn't sweat the small stuff.  It is interesting what we used to focus on and the range of what is now small stuff.  Hanging out on the patio laughing with our family can take priority over housecleaning, homework, sports, etc.  It is those moments that we can all breathe and see the remnants of the family we once were.  It is those moments that we aren't holding our breath waiting for Lauren's test results or waiting to hear news of other kids' test results.  We aren't stuck in the past and we aren't focused on the future.  We are completely present in the now.  It is beautiful.  It is love and it is all that matters.

     Those moments don't last forever, they can be fleeting.  Yesterday, our little friend, Avery Harriman, checked into the hospital for a bone marrow transplant.  This is his 3rd fight with cancer, specifically leukemia.  This is his last chance.  His mom knows that when they checked him in yesterday, he might not come home.  I know that sounds harsh.  But, it is her reality and it is Avery's reality.  I can't help but think that Avery is going to be fine and go on to do great things.  He is a great kid and a super hugger!  Avery's mom is an amazing woman.  She is dedicated to loving her family in the moments they have.  She, like my other cancer moms, shares a duality of gratitude and terror each day.  The degrees of which vary based on our faith and trust.  We also share a common path of learning to live with our kids' diagnoses.  It is a tough pill to swallow, but we have no choice.  Once we get over fighting that reality and realize there is absolutely no choice, we relax into the living.  At first it is scary and it even frightening to feel so much joy.  Then, you get over the guilt of feeling joy and the fear that it is going to end and you really feel it.  It is profound when you realize that what you feel is God.  In those moments, you also find the capacity to love like you never have.  I am thankful for that.  I can't always get there.  I am so impatient with other people and I feel bad about that, but I understand it.  It is hard to share concerns about what I think are trivial matters.  My anxiety makes it hard to have patience with angry people or other people's anxiety.  I probably come across as distant.  I see Lauren doing the same thing.  We are all on different journeys.  It is so hard to be able to truly understand another person's perspective.  We think we do, but most of us fall short. I know I do. 

     So, in essence, our family is currently fine.  Lauren is doing well.  But, I do cringe when I hear people say, "Aren't you glad it is all over?"  I don't respond.  I don't know how to.  It isn't all over for us.  She continues to get tested and heal.  She is currently in remission.  Remission is not a cure.  Some cancers have a cure.  This isn't one of them.  She is in remission.  Remission to me means that currently on the one sample of bone marrow they last sampled, there are not cancer cells.  It is impossible to know if there aren't still some left.  It also could come back any day.  If it does, the only thing that will save Lauren's life is a bone marrow transplant.  She currently does not have a match.  We needed some time as a family to regroup.  But, now we need to help Lauren.  We need to help all the kids that don't have a match.  I don't know how yet, but I hope to be part of the solution in some small way.  I hope to raise awareness about how easy it is to get tested to donate Stem cells.  Please consider being the Match!!  I would save your child's life, would you consider saving mine?????

     Our family wants to go on living a normal life.  We don't want every waking moment being about cancer or remembering how much Lauren suffered.  But, we do want to continue to love and support our cancer families.  We do want to help fundraisers seeking cures for pediatric cancer.  We want to help Make a Wish and the LLS.  (Leukemia and Lymphoma Society).  We want to bring treats and toys up to Children's Hospital.  We are currently looking at a small non-profit idea to do this.  We will keep you posted.

     In the meantime, please keep Lolo in your prayers.  Please keep Avery, Cooper, Oliver, Emma, Jack, Blake, Sammy, Seth, and all of these sweet kids in your prayers.  Please consider being the MATCH and help spread the word about being a bone marrow donor.  Please keep loving us through this journey!  Please donate money to pediatric cancer research. 

Thank you for continuing to care about Lauren!

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Comments

7 Comments

Kathy Uldrich
By Kathy Uldrich
What a wonderful post you shared... thank you for the update and the inspiration you provide. So very glad to hear Lauren is doing so well. God bless you all real good!
Victoria Kohout
By Victoria Kohout
LesLee thanks for the update and for your moving and honest writing. I'm on the bone marrow registry and have been for 15 years. About 2 years ago i was notified that i was a preliminary match and went through some additional screening but a better match was found. It is super easy to join the registry!
Judi Muller
By Judi Muller
Such grace & love. Thank you for sharing. Lolo always in my prayers.
Anne Fangman
By Anne Fangman
Beautifully written! You know we are behind you guys 100%. We feel blessed to have your family a part of our lives. We will keep on fighting the fight right next to you.
Cynthia Teegarden
By Cynthia Teegarden
Wonderful message. Thanks for keeping us in touch with you and your family.

Cynthia and John Teegarden
Alesia Hacker
By Alesia Hacker
Thank you for sharing this.

PEACE and LOVE from Grandma Polly and Aunt Alesia
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Elaine Nawiesniak
By Elaine Nawiesniak
I am registered with Be the Match and have been for almost 20 years. Creative Memories had a huge campaign encouraging people to Be the Match and I joined then. I have never been called but if I ever am I will not hesitate to donate. I will always keep Lolo and your family in my prayers. Remission is a gift but not one to be taken for granted. This is beautifully written LesLee.
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