Reflecting on a Child’s Cancer Death – guest post

Today I am snowed/iced/sleeted-in with the granddaughters. They have stayed here the last two nights in case of road closures and power outages.  We have a fireplace.  Also their mother works as a hospital and cannot leave until new nurses arrive.  They are asleep now.  I have been adding several dozen new blogs to our lists.  I ran across a collection of blogs about neuroblastoma, a children’s cancer.

It has been my practice to include blogs that are “inactive.”  However and why these blogs ceased to update, I have come to believe that lessons lie in these stories, these histories.  Some blogs cease because of remission – lives have moved on.  Others end because a life has ended.  And we can learn from that too.

The following is from a January 1st post.  It gives insight into how a young life, and a young death, impact the life of a family.

A crude 3 year reflection
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It has been an unavoidably painful grieving process as a huge part of our lives abruptly ended.  I’m sure to most people, they knew it was inevitable and I, at a superficial level, knew but I think being blindly hopeful is a natural way of protecting ones state.  It allowed me to care for Lucas with optimism.  After he died, many years of suppressed emotions surfaced.  I am grateful that I was happy when he was alive and that he didn’t have to witness me broken down.  As time moves further, we are able to find untinted joy in the little things and reconnect with some of our friends again (I still have a hard time reconnecting with friends that were emotionally absent).  One of the main things I learned from this experience is to invest time and energy in a few relationships and not spread myself thin – the journey naturally separated out our unwavering friends.  The realization that time is limited minimizes my desire to please everyone or act out of obligation.

The move to S. CA 2 years ago was rough on all of us.  We missed our life in cozy PA and, mostly, our gem-of-friends.  We were living the saying, you can’t run away from your problems.  We didn’t know anyone when we moved here but we decided as a family that we needed a change in pace and scenery.  Though the isolation added to the emptiness and created different challenges, I think it helped me move at my own pace – without pressure of disappointing the people that matter to me of my progress.  Boy, did I go to town on this.  There was a time when I would go many days without changing my clothes, brushing my teeth, etc.  I didn’t have the pressure of concerning anyone because I didn’t know anyone.  To them, this was me – they didn’t have any history or reference point.  Now that I’m washed up more and not wearing my holey t-shirts, people comment that I’m dressed up!  I’m mostly in a t-shirt and workout pants (not working out but for the comfort).  The one highlight of our move is that Chinh enjoys work – good thing because it was the catalysis.  He likes the increased responsibility, the people he works with, and the new field.  After Lucas died, Chinh spent what-felt-like-weeks-on-end looking at Lucas’ photos and videos, listening to his voice recordings, and sleeping with Lucas’ clothes clinched in his hands.  He would close the door and immerse himself in everything Lucas.  It was painful to witness his fragility and to only be able to support him passively.  When this job opportunity came up, it was great timing.  We all needed a change and Chinh looked forward to the challenges.  Along with Kira who motivated him to get out and live, work gave him something else to focus on.  Up until a few months ago, we constantly wanted to move back.  So much so, I didn’t want to invest much in furnishing or improving our house.  We are starting to enjoy it more here and I have unpacked 10 boxes since the holidays so we are finally settling in.

Kira, now 9 and in 3rd grade, is making more friends and doing well in school.  She learned to ride a bike this summer which is a huge sense of pride for her.  Now, she wants to ride all the time.  She and Aiden enjoy chasing each other around the house and she gets a kick out of the things he says.  She’s maturing into an independent pre-tween – sleeping by herself again since Lucas’ death and taking good care of her braces which she proudly displays (with it’s multi-colored bands).

Aiden, 2 1/2 years old and attending a toddler program, is an infinite source of energy and entertainment.  When he was an infant, he would climb objects and fall yet he’d do it again.  We thought, this kid is fearless.  We found out he has a lazy eye that limited his depth perception!  He is more cautious with glasses.  Aiden is increasingly more verbal and says the cutest things.  In his high-pitched voice, he frequently asks, “Will you help me?” or “Will you play with me?”  It’s interesting to listen to what children have to say.  Aiden will often run to us from another room and say “cary” (scary).  I recently asked him what was scary.  A couple of weeks ago, he replied, “Noonie and Baba”.  Chinh asked what did they do.  He said “cheese” (as in smile).  Kira, Chinh, and I tried to ask him more but he moved on.  We looked at each other and said only if.  I don’t know what to make of it but it makes us smile to know that Aiden thinks of them and at the thought that they are still with us and communicating with him.  We have not lost our marbles; just open to the thought that children’s unencumbered minds offer more than we are aware.

I am optimistic that this will be a happy year for us.  This winter holiday was the first one we all truly enjoyed.  We had fun making and buying presents for each other, trimming the first tree without Lucas, and decorating a gingerbread house.  Kira noticed the mood upswing and commented that she feels the change.  It’s nice that we are able to remember and talk about Lucas with more fondness than pain.  I know I will always have lingering anger but, now, it is at least offset with more joy.

Wishing you a Happy and Healthy 2011

~ Lucas Thai Tran

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Reflecting on a Child’s Cancer Death – guest post — 1 Comment

  1. Thank you so much for this truly inspirational site…I cannot tell you how much this resonates with me. I am a two time cancer survivor, my first cancer (Hodgkin’s lymphoma) was diagnosed when I was 15, and the second (stage 4 Thyroid Cancer) was diagnosed when I was 30. I know first hand the havoc this unkind disease can cause. I have written a children’s book about Cancer (The Stars Twinkle Brightly)that I would love to donate to children and families who have to travel this dark journey. Could you please contact me with information with how I can add your blog link to my author page at Apple Pie Books? Thank you!

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