Arwen’s story…a groupie at The Journey

Jessica photo for The JourneyThe Journey is here to help encourage you in your own journey and we have found that sharing the stories of others…those who are like you…work in amazing ways.

Today you are going to meet Arwen.  She was one of the first faces that welcomed me at my kids’ school.  She is that friendly smile that warms you up when you sometimes feel lost.  She could be your instant friend in 2 seconds, or as soon as she walks over to you and says “hi”.

Our paths have crossed in many ways and today…she is a mom who is making changes in her life and is working hard at my gym called Real Results Gym.  

Until about a year ago I had no idea that part of her journey had a similar path to mine.  Her son is a cancer survivor of Acute Lymphoblastic Leukemia and my sister died from that very same illness.  

Read, soak in and hear her story today that she was willing to share with us at The Journey.  

More stories from other groupies at The Journey can be viewed at this link:  Stories of Those We Call The Groupies

*Jessica

Arwen’s Story

“… I shall be telling this with a sigh; Somewhere ages and ages hence: Two roads diverged in a wood, and I – I took the one less traveled by, And that has made all the difference.” From  the last verse of Robert Frost’s poem, “The Road Not Taken”.

I have known Jessica for a couple years because our lives have intertwined in several places – school, mutual friends, American Heritage Girls and now at Real Results Gym.  Since I have passed a key milestone in my life – the youngest went to kindergarten – I have decided to address some of my aging aches and pains.  I am also beginning to climb out of a decade of getting an education in being a “cancer mom”. Cancer moms need to be physically healthy.

The journey begins: In February 2003, I was the mother of two children and pregnant with the third. Our 4 ½ year old son, Ben, had some strange ailments that seemed to be explained away easily. However, by the last week of February, he began to weaken significantly and develop unexplainably deep bruises. At the time, my husband, Mike, was a research fellow in a cancer research lab in Seattle, WA. At our appointment with our pediatrician on Friday, February 28, 2003, I said to her very frankly, “You don’t think it’s leukemia do you?” She didn’t think so, but was concerned the problem was definitely a blood disease so she ordered a complete blood count.  I am so thankful for her insistence on that blood test! An hour later, we were having blood drawn with a very uncooperative child. As I watched other families go into the blood draw room, I had a sinking feeling that this would not be the last visit to this lab at Seattle Children’s Hospital.

A new identity — Cancer Mom: Within hours, the blood work was back — LEUKEMIA. My first feelings were disbelief, fear and grief. How can I lose one child and gain another at the same time? What about our hopes and dreams for Ben’s life? What do I say to the two year old who is kissing my tears away? Can I tell her, “It’s going to be okay”? What do I tell Ben when he asks if he’s going to die?

We immediately ended up in the hospital for a weeklong stay at Seattle Children’s Hospital. The nurses on our floor noticed my advanced pregnancy and kindly advised not delivering on their floor or at their hospital. They informed me that they’d call an ambulance or taxi if I started labor. At the same time, one of my husband’s colleagues arranged for us to get an emergency Umbilical Cord Blood kit meant for use in case a transplant might be needed for Ben. I picked up this kit from the Puget Sound Blood Center on my due date, March 6. Typically, families who want to have their newborn’s umbilical cord blood saved, order and receive their kit months prior to delivery, not on the due date! The whole process of approval for the kit was eerie and miraculous at the same time. Ben went home on Thursday, March 6 with a load of medications and appointments for the following week, hoping for remission within 28 days.

In the meantime, there was still a baby that needed to be born.  Friends near and far were aware of the situation and prayed fervently. When asked what day we’d like the baby to be born, I had no idea how to answer. There simply wasn’t a good day for the baby to be born.

Ben visiting his new baby sister.

Ben visiting his new baby sister.

We were home for one day before the baby was born on March 8. It was full of pure joy. Watching the kids play together and Ben rediscover his room was like Christmas! Yet, we had to begin a routine of doing medicine, too. Power struggles ensued. Tears of frustration (mostly parental) were frequent. Gag reflexes were active. The patient didn’t believe he could walk and was weak, irritable, hungry and demanding.

Labor pains began the next day. Fortunately, my mother-in-law arrived from MN to help and was home with the two older kids during the new baby’s birth. Mike and I headed to the hospital and were so emotionally exhausted from the previous week’s ordeal that we remember very little of our daughter’s birth. We watched the umbilical cord blood fill the kit and wondered – will we need that blood? What was the purpose of the timing of this baby’s birth? How will we have strength to go on?

Celebrating 5th birthday at a park, 5 months after diagnosis

Celebrating 5th birthday at a park, 5 months after diagnosis

Remission and Beyond: The initial six months of treatment are always the most difficult because the chemotherapy drugs are strong and high dose. After about six months, kids spend the remaining years (2 ½ more years for boys) in a phase called “Maintenance”. At this point, medication becomes routine and is not high dose but is meant to keep the immune system suppressed so leukemia cells will not become active again. The balance between suppressing the immune system yet giving kids the opportunity to live a full life is tricky. One never knows when an unplanned hospitalization will take place so we lived everyday like its Saturday. Those two + years were like running a marathon – endless. Emotional numbness became a good description of my life. In fact, I think I only truly laughed with joy a few times during those years. Some call this “Survivorship”. I began to feel very panicky that others who I love would die or become ill. These feelings would come out of nowhere. Eventually, the emotions of any intensely difficult experience have to be addressed. I needed to learn the truth of this verse from Psalm 112:7, “They do not fear bad news; they confidently trust the Lord to care for them.”

Ben graduating from 8th grade

Ben graduating from 8th grade

Physical healing and a future: The great news is that my son has been out of treatment for almost eight years and has few, if any, side effects.  In fact, if you were to meet him now, you would never know that he is a leukemia survivor.  The possibility that he might relapse is unlikely. He is in“long term follow-up” now.  He sees a pediatric oncologist once a year for blood work and a physical. Every five years, he has an echocardiogram. He has hopes and dreams for the future!

Emotional healing –choosing joy: Treatment may have ended in 2006 but it was just the beginning of the hard work of understanding the emotional toll of this journey. The same year, in the Fall, we moved back to Minnesota. By the Fall of 2007, we added another child to the family. By 2009, my beloved grandmother who lived in our area and who was in her late 90s, began to experience health problems. Coupled with several other intense situations and general day-to-day living with four kids, I was at my limit and thought I was having a heart attack. What a relief to discover I was having a panic attack – a symptom that something is wrong. Finally, I had to address the deep scars and emotions of the whole experience of diagnosis, treatment, a geographical move and slowly losing a loved one.

Go for the Gold event with Brighter Tomorrows.  10 years since diagnosis.

Go for the Gold event with Brighter Tomorrows. 10 years since diagnosis.

Healing through giving back: In 2007, a local group called Brighter Tomorrows was formed whose purpose is to support families touched by childhood cancer. We learned about it soon after its formation and began to attend monthly meetings at Ronald McDonald House. Sometimes we rejoice and sometimes we mourn.  For me, only through being willing to be “with” others in their pain, sorrow and joy do I heal. I have gained strength and the pain is less intense each time I listen and am “with” others. The joy of giving back is a gift to both the receiver and the recipient. These words from 2 Corinthians 1:3,4 sum up my feelings, “… God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”

A Few Lessons:

  • Control – I am human and naturally inclined towards the need to feel in control. A life-altering event like our experience feels like a nuclear bomb exploding in life – the ultimate loss of control. It shook me to the core of what I believed about God. I had to learn that God promises me His presence and all that is all that I need.  Bad news is still hard to hear but does not paralyze me.
  • Fallacies about God – I believed a common phrase to be true – “God never gives us more than we can handle.” I always thought of 1 Corinthians 10:13, “God will not allow you to be tempted beyond what you can handle” as meaning that life wouldn’t be too hard. I have learned that verse is about fleeing from temptation, not promises of an easy life. I experienced more than I can handle. I see people all the time with more than they can handle. Sometimes I can’t handle what is sent my way but God can handle all that comes my way. He wants to be with us in our lives through the good and the bad. So – I had to learn to let Him help me handle the difficulties in life. I do this by reading the Bible and purposefully asking God for help as I pray.
  • Pride and asking for help – I am a “can do” person but I cannot do everything alone. For me to allow someone else to come to my home to clean my bathroom was one of the most humbling experiences. To let people help me when I needed it most was humbling. I had to learn to let others be God’s hands and feet in my life – for everyone’s benefit. I really could not do this business of caring for three kids without help – especially when one child was walking and was 2 years old.  And, people around me were blessed when they could help in a meaningful way. Now that life is not in crisis mode, this is the lesson I have forgotten the most quickly.

This journey continues and I have a choice everyday about which path or fork I will take. Will I be a joyful survivor or a wounded and bitter survivor?

Some organizations and resources we found helpful:

  • Brighter Tomorrows – www.brightertomorrowshope.org – Rochester, MN based non-profit organization whose mission is to support families touched by childhood cancer. There are many ways to become involved in supporting this organization and the families served by it. One major fundraising project is in June, Go for the Gold Walk/Run and children’s fun races  —  www.goforthegoldrochester.com.
  • Blood banks – Donations of blood truly give life. Ben received multiple red blood and platelet transfusions.
  • Umbilical Cord Blood Banks – what an amazing resource this blood is for current research and for use in transplants today. We received our cord blood kit from Puget Sound Blood Center. There are many banks or centers around the country.
  • Leukemia & Lymphoma Society – www.lls.org –  An organization that not only supports research but also patients and families through education and direct services.
  • Make-A-Wish Foundation – www.wish.org – When our social worker
    Our Make a Wish Day

    Our Make a Wish Day

    told us we qualified for a “wish”, I was terrified. I thought wishes were only granted to children who were sure to die. No – they are granted to children who are experiencing a life threatening illness and who, if not treated, would die. Ben’s  wish was to be a “Train Engineer”. So, we went on the Mt. Rainier Scenic Railroad with some extended family while Ben, sister, cousins and Grandpa “helped” drive the train in August 2004.

  • Miracles of Mitch – www.miraclesofmitch.org — A MN non-profit founded because of a boy named Mitch who “pinky-sweared” his dad before he died that the money raised for his benefit  would be used for other families who needed it. Much of the fundraising is done by kids for kids, including a kids triathlon in the Twin Cities. They support families in very practical ways – from paying rent to having very special and fun events.
  • HopeKids – www.hopekids.org – A national non-profit meant to give hope to families of children who have chronic or life threatening illnesses. This group provides free opportunities to have fun. There is a Twin Cities chapter of this organization.
  • Meal organization website  – www.takethemameal.com -we were hugely blessed by meals for MONTHS. The meals were organized by our church and kept us afloat. Now there are websites that help organize so the organizer has a much easier time of communicating.
  • Information sharing – caringbridge/carepages/mylifeline, etc.  – families are exhausted and want to spend time with each person who loves and cares but can’t. These websites make it possible to share to many all at once. We had a private page and found this to be a wonderful way to sort out our emotions.
  • American Childhood Cancer Organization (www.acco.org) is one of many advocacy organizations.
  • The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee – written in 2011, a wonderful book written by an oncologist but meant for the general public to understand the history of this complex disease. For me, knowledge and understanding are important.

Are you interested in sharing your story at The Journey?  E-mail us at smallchangesbigpicture@gmail.com for more information.

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5 thoughts on “Arwen’s story…a groupie at The Journey

  1. Sonja Anderson

    Thank you, Arwen, for sharing your story so beautifully! I knew some of it, but it was great to hear you articulate everything in such an amazing way, and to see the way you point people to the things that gave you strength, especially such an authentic relationship with God, is such an awesome witness. Thanks, too, for The Journey blog for letting you tell it! It’s hard for me to believe the Ben is so grown up now–I kind of have your whole family frozen in my head the way you were when you left Seattle!

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  2. Arwen Murray Gustafson

    You were one of many who cared so meaningfully for our very vulnerable family. We will never forget the kindnesses we experienced. Thank you for your friendship through the years. I’ve been following your writing endeavors and want to read your book!

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  3. Pingback: Friday Special: Out of Serious Illness, Hope and Strength | Sonja Anderson

  4. Sheryl Peterson

    Thanks, Arwen, for sharing your story in such a meaningful way. While I’ve know the facts of your story, the importance of your feelings & emotions inspires & encourages us in our own life journeys, whatever they might be. You express yourself well & the hope you have through your faith touches us deeply. I’m sure this will be helpful to all who read it.

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