The Prickly Thorns of Grief

The tremendous love I have for John is responsible for the heartbreakingly deep loss I feel. There are days it takes great effort to bring gratitude to the forefront of my mind, as grief is bold, relentless, and even sneaky at times. Grief can literally take my breath away, cause an ache in my chest, and make my body feel as though it is filled with sand, the heaviness making it difficult to move from the couch. Grief can be a feeling of longing, a trickle of tears, or the flood of full blown sobs.

I have heard and read so many metaphors for grief, and they all are very true. Grief is: a beast, a wave, a rollercoaster, a puzzle, a dark tunnel. I envision my grief as a vine, a climbing rose vine to be exact- as John loved the beauty of flowers. This vine is always wrapped around me, reminding me of my forever love and connection to John. There are times that it fits loosely with the thorns barely touching my skin, giving me a reprieve from the heartache of John’s physical absence. Other times it tightens, catching me by surprise with thorns that press into parts of me I thought were beginning to heal. I know there is beauty to be found in this vine with its soft, pastel petals and the sweet fragrance of the roses, however at this time, those tenacious thorns seem to be in charge.

The vine was oddly very loose in the early days after John’s death and leading up to his celebration of life. I think at first I was numb, maybe in denial, and then in “pull it together” mode for his visitation and service. I was so determined to be able to speak at his celebration of life, I think I almost didn’t let myself feel all the emotions that I should have that day. Looking back, I can see I was going through the motions, but had shut down some. Within the next week, that vine had a vice grip on me so tight that it rendered me a complete mess! I spent so many hours on our couch bawling my eyes out, with my sweet husband sitting by my side comforting me to the best of his abilities. He most often would just sit closely, quietly patting my leg, letting me feel all the emotions.

I struggled to recognize this new version of myself. Where had the Shelly gone that stood strongly  by John’s side for the past two years? That version of me had completely vanished as that vine of grief twisted and turned, pulling tighter and tighter.  Even in his own grief, Jon recognized my struggle and was supportive, understanding and so patient with his messy wife.

In the weeks and month that have followed, there are times the vine has loosen a little, and the thorns do not cause such a tense emotional response. During the quiet moments of my days, that vine is sneaky and can give me a quick squeeze, triggering a light stream of tears. Driving easily provokes the vine. If the radio is off, I think too much and when the radio is on, I can find meaning to any song. Almost any song … I have found the Juice Newton’s “Queen of Hearts” and John Fogerty’s “Centerfield” trigger zero emotional response, hence they are blasted on the radio my entire 1 mile ride to work and again back home. The vine also likes to show it’s thorns during my lunch and prep breaks at school, really any time in the day that my mind and body have an opportunity to be at rest.

In mid October, I returned to my classroom and 5th grade students. While at the time I was anxious about stepping back into school, it has proven to be very healing for me. My wonderful sub did an excellent job of setting up routines with my groups of students and she also set me us for success for my return (Thank you Mariah!). I work with amazing people and I feel totally supported and loved at school. Students, past and present, have been so sweet with their gifts of words, cards and hugs. I will always remember running into a former student that is now in college, and how he took me in his arms and gave me a huge bear hug and whispered to me, “It’s always good to see you Mrs. Gegen. I am so sorry about John.” This wasn’t a quick hug, but a loving embrace and he held on. When he could have turned away to avoid an interaction with me, he came towards me – which is difficult for some adults to do. Before I was back at school, I ran into another former student and she also walked right up to me and said, “We miss you at school. I am sorry about your son,” and she gave me the sweetest hug. I have been so fortunate to have had experiences like these with many students. Of course, there have been a few awkward moments as well – children are, after all, curious and  wonderfully honest. The grief vine, for the most part, behaves pretty well at school, at times gently tightening, but quickly releasing and allowing me to go on with my day.

That very same vine, when I’m at home, can squeeze the living daylights right out of me at a moments notice. It takes so little – a slip of paper (like the day I came across John’s very first PET scan results showing that the cancer was only in the bone of his leg- we later learned that wasn’t true. If only it had been just the leg, his leg was good), a sporting event on TV, a walk into his closet, a winter hat, a bag of unpopped popcorn, a trailer for a movie…. truly anything. At home, grief and that dang vine are making the simplest tasks feel overwhelming, while also zapping my strength and turning me into the most unmotivated bump on a log EVER! I’m working on it one day at a time…facing each day one at a time.

I knew this grief journey was/is not one I can manage on my own. Right out of the gate, I had Jon and I enrolled in a Grief group. That didn’t go as planned because after the first meeting I was overly concerned with another member (shocking, I know…). I needed her phone number because she was in desperate need of a friend, and I could be that friend. I was trying to convince Jon of this and he adamantly disagreed, reminding me that we are there for us and there is a leader to address concerns with the other member. Soon after, a member of Children’s Bereavement team came out for an in home visit. When she learned that we were in a grief group, her suggestion was that we are not in a place to be taking on the grief of others. I do believe my husband breathed a big sigh of relief when I agreed to pause that experience. I may revisit this opportunity for healing down the road.

I have both purchased and been gifted books on grief, pouring over them in an effort to learn how to navigate life without our sweet boy. Sometimes, my husband is lucky enough to hear me read a chapter or two to him at bedtime. He has been a good sport, but he also probably wouldn’t mind me getting back to my habit of staying up late so he can go to bed in peace.

One of the most helpful tools in this grief journey – and dealing with this nasty vine -has been the support I’ve found through the person I’m seeing via my schools Employee Assistance program. Time away from work has not been needed, as he comes to me during my prep. This itself has been a gift, as I do not have one second of any type of leave until the beginning of the next school year. We have had many heartfelt and meaningful discussions during our sessions. My eyes were opened to the reason that school is going well- because there I find purpose and meaning. At home, all my purpose, meaning, and caregiving were all wrapped up in John, just as it needed to be. I would have that no other way. As I navigate this grief journey, I’m floundering a little (some days a lot) as I work on discovering my purpose and meaning outside of school.

The healing activity that may be helping me the most in managing that invasive climbing rose vine of grief is keeping a journal – putting my thoughts and heart on to a page. This simple act of writing to John – sharing my deepest thoughts, worries, emotions, or even the mundane day to day activities (there are a lot of sports and hunting updates) gives me a place to embrace the quiet in a calming manner and to connect with John.

A few weeks ago Jon, Jeffrey, Emma and I attended an event put on by the O’Connell Family Funeral Home – The Grief Journey Through the Holidays. We are hoping to take some of the insight shared that evening with us as our family faces the coming weeks, finding ways to honor John as we face this first holiday season.

I understand that because I love John so deeply and completely, the prickly thorns of the climbing rose vine will always be a part of me. Still, I look forward to the day when those thorns more often remind me of the love we shared, rather than the life that was lost- hoping in time, healing will come. I know I have a long, long way to go before I get there.

Love, Hope and Blessings

Shelly

 

I carry one of these in my pocket every day.
John's candle is lit for all special occasions, including Wild and Vikings games.

Always and Forever The Gegen Five

I began The Gegen Five WordPress site way back in 2013 when John completed COG (Children’s Oncology Group) protocol for stage IV High-Risk Neuroblastoma and was moving on to a clinical trial, the goal being to prevent relapse. He was so little back then at just six, but had already proven to the world what a resilient and courageous warrior he was! Prior to this website, I had been using CaringBridge to keep family and friends updated on John’s Neuroblastoma journey. This site seemed a good landing place to continue to share John and our family non-medical updates, and for the next four years I did just that.

With the busyness of all the activities that comes with 3 active boys, my writing tapered off and then ended completely. In early summer of 2023, I received a notification that my renewal fee for WordPress was due. After 8 years of paying the fee and not using the site (Don’t tell my husband!), I hesitantly closed the domain. I was able to have the posts I had written bound into a beautiful hardcovered book, and I had thought I had closed the chapter on sharing our story through my writing.

Sadly, in late August of that very same summer we learned that John had osteosarcoma in his left leg. Shocked and devastated, we were told this cancer was unrelated to Neuroblastoma and considered another primary cancer. I was back to writing on CaringBridge to keep all those that cared for John and our family updated on this new journey. You can find those posts here: https://www.caringbridge.org/visit/johngegen

At the age of 18, just a day under one month from John’s 19th birthday, our sweet boy passed away on August 17, 2025. John left this world surrounded by his family, wrapped in our love, as he passed on to heaven. The experience was devastatingly heartbreaking, beautiful, and peaceful all woven together as one.

So here I am again—back to WordPress and back to writing. Sharing my feelings has always been healing for me, and I can feel myself needing that healing now more than ever. We all are. We loved John so deeply, and because our love was so deep, our grief is just as deep. If you would like to follow along on this messy, sometimes complicated, but always love-filled journey, this is where you will find my love for John and our family, my relationship with grief, and hopefully many joy-filled moments along the way.

Back in 2013, I titled this blog The Gegen Five, and my heart needs it to stay that way. John is always with us—forever a part of our original five. We’ve since been blessed with two beautiful additions, our sweet Nena and Emma, and I know they would only cheer on keeping the name. It’s a piece of our story, our love, and our family, – always.

Love, Hope, and Blessings

Shelly

Ordinary Days = Extraordinary Life

Wow! It has been a long time since I have posted! Part of the reason is that most of my previous writing took place in the wee hours of the night. This worked best for me as the house was quiet and it was an ideal time for me to reflect and piece my thoughts together. The fact that I couldn’t sleep also contributed to my burning the midnight oil as I wrote. Now, I’m going to bed at a much more healthier time (still room for improvement there) and during the waking hours our home is full of boisterous boys and all that comes with that. Is that awesome or what?!

This morning the house is quiet. Michael is away at college, Jon and Jeffrey took off for a weekend of duck hunting, and John is  asleep in his bed. So I write…

Last night Hastings High School participated in a Tackle Cancer Event (Big thank you to Angie McLay and her family for organizing this!). Pre game, children in our community were honored and John was one of them. Man…there I sat trying to keep it together. Seeing John on the field so healthy, confident…loving every minute of the night fills me with such gratitude. Gratitude for his health, my family, our community…for each and every day. Every single ordinary, blessed day!

John Jospeh is rocking life! He played hockey and lacrosse this summer, is loving 5th grade (The best part of his mom’s work days is seeing him in the halls!), is playing hockey again this fall and he just celebrated his 11th birthday! This October he will be 5 years out of treatment and will have his last appointment with Dr. Rawwas and will then move on to the STAR Clinic.   – STAR Clinic (surveillance and testing after recovery) – The STAR Clinic team helps patients along their survivorship journey after the recovery and wellness phase is completed. This includes yearly clinic visits, nutrition and exercise plans, and well-care education to ensure patients are equipped to embrace life after cancer therapy. –   This will be a great day, but also a sad one because John’s care with Dr. Rawwas will be complete. (There goes my grateful heart again.) Dr. Rawwas has said he will stop in and say hi during John’s annual visits. I’m holding him to that!

Our summer was great from my mom’s perspective. All the boys were home, Jon and I were able to wrangle everyone on a road trip out west with our friends, we were able to spend time at my parent’s cabin in Spooner, and we spent time boating on the river. I loved every minute of our summer!

Big guys update:

Michael is in his junior year at UW-Madison. He has moved into a different house and has settled back into his life at college. (I think that didn’t take him too long!) I believe he has declared his majors as Finance and Economics. (I loved having him home this summer!)

Jeffrey: Senior year!! I know this will go by so fast! Jeffrey was a life guard at the pool this summer. This was a great job for him and John enjoyed going swimming there when Jeffrey was working.  Jeffrey has caught the hunting bug, so now I have 2 of them to deal with at home. I wish Rylee luck with surviving Jeffrey’s hunting talk this fall!

Dad and Mom – Blessed! We both have jobs and colleagues we enjoy, our boys are happy and healthy, and we still enjoy spending time together (Most Days – Ha!).

Ordinary days = Extraordinary Life for the Gegen5

Love, Hope,  & Blessings… each and every day!

Shelly

 

 

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A Little Reminder…

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I am given little reminders almost daily with pictures on my Timehop app like this one, how blessed my life is. I sit her typing this post on a crisp Saturday morning, with the sun shining on the back patio with 1 big sized boy sleeping away at the college he dreamed of going to, 1 middle sized boy, who just happens to now be the tallest Gegen in our family, sleeping soundly down the hall, and 1 smaller sized Gegen boy asleep in his bed with his sheets pulled up around his neck like he always does. Oh…and there is the oldest Gegen guy and the 2 black labs tooling around the house this morning as well. What a blessed morning on Jefferson Street…normal, ordinary…perfectly, perfect. My life is blessed!

My life, our lives, could be so much different. We are all here…healthy, happy and with dreams for our futures. We are allowing ourselves to dream and the events of this past week are not going to change that one bit. The outcome of the election compares nothing to the hell our family has had to live, one thankfully most of you will never experience.  We have learned as a family, together we can face anything, that there is always hope. You all have taught us that, even in the times we thought were the darkest and we couldn’t possibly get through, we could and did, with the love and grace of our families, our friends, our community and even strangers. I choose to move forward in life with positivity, gratitude, respect, hope, kindness, and with that good ‘ol lesson from childhood…I’m taking the high road.

The future…I don’t know what the future holds for my family, me, you or your family…none of us can know or can control what tomorrow may bring, however, I can control my actions, my words, the examples I’m setting from my children, my students,  and my friends. I am choosing to live each day like the gift that it is.

Love, Hope and Blessings to you all!

 

Where’s the Pizza?

On big appointment days at Children’s Minneapolis,  our routine had been to stop in St. Paul at Cossetta’s on our way home. The other day John asked me why we haven’t been to there in so long. I told him it was because he hasn’t had any doctor appointments. This was met with a huge eye roll and then he was on his way.

No doctor, monthly blood work, no exams, no scans…since April! This summer is the first summer in 4 years that hasn’t involved doctor appointments, medication and scanxiety . This is the first summer in 4 years that I have a feeling of peace in both my mind and heart. Oh, I still worry, but it is not a worry that consumes my everyday and all of my thoughts. John is in such a good place. He’s happy, healthy, feisty and active. Looking at him no one would ever know the fight that little boy fought and the hell his little body endured.

This summer wasn’t filled with any extraordinary vacations or escapades, but rather ordinary family activities that could so easily be taken for granted. There were several trips to Grandpa and Grandma Prinsen’s cabin in Spooner (John and my favorite place) where he and Jeffrey fished and fished. There was one sunny afternoon where I was sitting on the end of the dock thinking about our family of 5 and how blessed and thankful we are…that I never thought we would see this day again. Just like that…it began to sprinkle. As I sat there in the beauty of the lake and all things I love, with the gentle rain washing over me…the flood gates opened and tears spilled down my cheeks. The tears weren’t of sadness, worry or guilt (Cancer parents can carry a lot of guilt…even when your child is a survivor.) They were more of a, “You all are going to be ok and it’s ok to feel that way. It’s ok to not be wracked with worry every waking moment of every day. It’s ok to look to the future. It’s ok to do what’s best for you, your kids and your marriage”…kind of tears. At that moment a wave of peace and relief washed over me and has been present ever since.

Now, I know that life can and may change in a moment. We’ve lived it! This feeling of calm doesn’t mean that I foolishly think we are in the all clear and have nothing to worry about ever. What it means for me is that it is ok to be grateful for the moment and it’s ok to look to the future with hope. What ever life deals to us along the way, we will face together.

Hope for a bright future came to our family in the form of a four legged baby girl this summer. We had been talking about getting a new puppy for quite sometime, but had put it off because…who knew what we would be dealing with down the road and we couldn’t put a puppy on top of that. This puppy was also a sign that we are continuing to push even closer to life before cancer, one that included the activity of pheasant and duck hunting for Jon (His happy, peaceful place that has been nonexistent for over 4 years.) I pushed for the puppy this summer and on July 1st we picked Bella up in Mankato. We love her tons (Well…our 13 year old lab loves her  a little.) and she has brought us much joy.

Michael: Michael has had a good summer at home working at the Hastings Aquatic Center and hanging out with his friends. He is excited to get back to UW-Madison this Friday. We will definitely miss having him around the house, but we are excited for him to begin his sophomore year.michael

Jeffrey: He participated in the hockey camp in town here during June and July. There has also been a lot of golf going on as well. Jeffrey also has a job watching 2 little boys this summer and it is a wonderful fit as the family works around his hockey schedule and are very flexible.

John: Running the neighborhood with his buddies is the number 1 activity! John enjoys  swimming at his good friend Brady’s house and he has also enjoyed a few afternoons at the Hastings pool. Of course, his favorite activity is fishing at the cabin. This summer he learned (more like agreed to…because I know he could do this before) bait his fishing hook and take fish off.john 1

Our summer is coming to an end and soon we will be back into the swing of the school routines. Michael as a sophomore at Madison, Jeffrey a junior in HS and John, his last year in the elementary…his 4th grade year.

John’s next appointment isn’t until October and at that time it will just be an exam and blood work.

We continue to be blessed by the love and support of our family and friends!

Love, Hope and Blessings,

Shelly

PS…We’ll be taking a trip to Cossetta’s soon!

Done with Scans!

Clear/Stable Scans!! YAY!!

This past Thursday was John’s 6 months scans. October had been his last scans and prior to that he has endured them every 12 weeks since April of 2012. This 6 month span had been the longest that we’d gone without scans or the monthly visits for blood work, urine check and a physical exam. There has been so much sadness in our little Minnesota community of families fighting Neuroblastoma, I had myself worked into a full-blown tizzy the day of John’s appointments. It was the most excruciating wait for scan results to date.

The day started like all other scan days with no food for John and pills for nausea and anxiety in anticipation of the dreaded donut scan (CT scan) that gives him a horrible warm feeling, that leads to throwing up. We were dropped off to check in while Jon parked the car and on the way in John says, “I see spots.”. I tried to reassure him it was because he had come in from the sun and his eyes would adjust. Nope… he continued to see spots. Next I tried to reassure him that is must be the medicine that I gave him (This hadn’t happened before.). Next he told me he couldn’t walk straight. So now I’m thinking I gave him the wrong medicine or something…that I had poisoned him. After we got to radiology I quickly dug out the pill bottles from my purse, saying a prayer of thanks that I had actually brought the bottles along, and checked to see if they were the correct medication. Thankfully, they were. By this time I’d have to say that I had a slap happy, intoxicated 9 year old sitting beside me. Everything was extremely funny… to John…to the point that it was almost embarrassing. He was starting to come down after they IV was placed and he was totally “chill” by the time he had to get up on the CT table. This CT scan was by far the least eventful one he’s ever done. Not a peep out of the kid.

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After the CT scan we texted Jon to let him know it was a piece of cake and moved on to the MIBG scan. ( Jon is always somewhere on campus, just not with us until after all the scans. This is the routine that works best for us.) Our favorite technician was there to do the scan. Lexy had scanned John at diagnosis and every scan since. What threw me off on that day was the screen that shows John’s body as it is being scanned was turned off. I’ve learned to read that thing and I know what is supposed to light up and what shouldn’t. In the past I’ve always been able to send Jon the text that says it looked good. New policy has that screen turned off, most likely to prevent moms like me thinking they can read the thing accurately. John was still in his “zen state” and I was visiting with Lexy and the other technician. They were so excited that this was potentially John’s last scan. The scan got over and I freaked…totally reading their words and body language in such a way I was convinced that they saw something! (Damn that screen being off!) My poor husband was met by a wife that was in a total panic and we had a 3 1/2 hour wait for results.

Jon is the calm to my storm in situations like this, not that he wants to have a lengthy conversation about why I think what I think, rather he reassures me over and over that John is fine. I’m in the mind thought of “What if?!!” and he’s in the mind thought of “He’s not”. It was a pretty quiet 3 1/2 hours with parents trying not to lose their @$%&, John watching a movie with earplugs in, and a little break with lunch and for an echo.

As soon as we got to our appointment with Dr. Rawwas he was able to greet us with a smile and the news that John’s scans remain stable. Relief washed over me and I was instantly able to breathe. We talked about his blood work and he visited with John. John shared with him that he’d been to a Barry Manilow concert and that he was now playing lacorsse. We discussed John’s reaction to the medication I’d given him that morning and Dr. Rawwas suggested cutting the pills in half. I suggested that parents taking such pills on the day of scans could be very beneficial, but he wasn’t buying it.

Moving forward the plan is for John to see Dr. Rawwas in 6 months for blood work, urine check and an exam…no scans. I asked him if he was comfortable not scanning John and he replied that he’s been comfortable with that for quite a while,but he was following the recommendations of COG (I think). I think we will continue in this manner for a while. I left that day feeling good about where John is and ready to tackle the next 6 months, knowing if I need anything in-between now and the next appointment in October, Dr. Rawwas is just a phone call away.

Family Update:

The boys are all doing great!

John: Played hockey this winter, lacrosse this spring, and loves playing outside with his neighborhood friends. It’s hard to believe that he is almost at the end of is 3rd grade school year. It was 4 years ago this month that he was diagnosed with stage IV high risk Neuroblastoma.

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Jeffrey: Jeffrey played hockey this winter and is playing lacrosse this spring. He’s in 10th grade and even thinking it may be time for a summer job. I

Michael: He is loving everything about UW-Madison. This summer you can find him working at the Hastings Aquatic Center.

 

Thank you to all of you for lifting us up these past four years and giving us the courage and strength to face each day. During John’s journey there have been so many frightening, uncertain days, but even more days filled with blessings and love, because of all of you. We will move forward with faith and hope for a future filled with health and happiness for our family and all of your families as well.

Love, Hope and Blessings,

Shelly

 

 

 

National Wear Red Day

Tomorrow is National Wear Red Day – A day to show support for women’s heart health.

Our school district has been encouraging the staff and students to wear red this Friday in support of National Wear Red Day and it finally hit me…”Hey, I’m one of those women.”. With everything that has been going on with the Gegens these past few years, I almost forgot! It is mind boggling for me to think that my heart health crisis my family faced was already 9 years ago (a little more). Where at one time my heart had been constantly on my mind…with the journey our family has been on with John these past almost 4 years, it has taken a back burner. 

John was born on September 16, 2006. Nine days later I was diagnosed with Peripartum Cardiomyopathy (heart failure due to pregnancy), taken by ambulance to United Hospital and admitted into cardiac intensive care. I had never heard of peripartum cardiomyopathy. Here is the American Heart Associations information on the condition:

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What is peripartum cardiomyopathy?  

Peripartum cardiomyopathy (PPCM), also known as postpartum cardiomyopathy, is an uncommon form of heart failure that happens during the last month of pregnancy or up to five months after giving birth. Cardiomyopathy literally means heart muscle disease.

PPCM is a dilated form of the condition, which means the heart chambers enlarge and the muscle weakens. This causes a decrease in the percentage of blood ejected from the left ventricle of the heart with each contraction. That leads to less blood flow and the heart is no longer able to meet the demands of the body’s organs for oxygen, affecting the lungs, liver, and other body systems.

PPCM is rare in the United States, Canada, and Europe. About 1,000 to 1,300 women develop the condition in the U.S. each year. In some countries, PPCM is much more common and may be related to differences in diet, lifestyle, other medical conditions or genetics.

How is it diagnosed?
PPCM may be difficult to detect because symptoms of heart failure can mimic those of third trimester pregnancy, such as swelling in the feet and legs, and some shortness of breath. More extreme cases feature severe shortness of breath and prolonged swelling after delivery.

During a physical exam, doctors will look for signs of fluid in the lungs. A stethoscope will be used to listen for lung crackles, a rapid heart rate, or abnormal heart sounds. An echocardiogram can detect the cardiomyopathy by showing the diminished functioning of the heart.

PPCM is diagnosed when the following three criteria are met:

  1. Heart failure develops in the last month of pregnancy or within 5 months of delivery.
  2. Heart pumping function is reduced, with an ejection fraction (EF) less than 45% (typically measured by an echocardiogram). EF is how much blood the left ventricle pumps out with each contraction. A normal EF can be between 55 and 70.
  3. No other cause for heart failure with reduced EF can be found.

Laboratory blood tests are a standard part of the evaluation. This includes tests to assess kidney, liver and thyroid function; tests to assess electrolytes, including sodium and potassium; and a complete blood count to look for anemia or evidence of infection. In addition, markers of cardiac injury and stress can be used to assess level of risk.

Symptoms of the condition include:

  • Fatigue
  • Feeling of heart racing or skipping beats (palpitations)
  • Increased nighttime urination (nocturia)
  • Shortness of breath with activity and when lying flat
  • Swelling of the ankles
  • Swollen neck veins
  • Low blood pressure, or it may drop when standing up.

The severity of symptoms in patients with PPCM can be classified by the New York Heart Association system:

Class I – Disease with no symptoms
Class II – Mild symptoms/effect on function or symptoms only with extreme exertion
Class III – Symptoms with minimal exertion
Class IV – Symptoms at rest

What are the causes?
The underlying cause is unclear. Heart biopsies in some cases show women have inflammation in the heart muscle. This may be because of prior viral illness or abnormal immune response. Other potential causes include poor nutrition, coronary artery spasm, small-vessel disease, and defective antioxidant defenses. Genetics may also play a role.

Initially thought to be more common in women older than 30, PPCM has since been reported across a wide range of age groups. Risk factors include:

  • Obesity
  • History of cardiac disorders, such as myocarditis (inflammation of the heart muscle)
  • Use of certain medications
  • Smoking
  • Alcoholism
  • Multiple pregnancies
  • African-American descent
  • Poor nourishment

How can PPCM be treated? 
The objective of peripartum cardiomyopathy treatment is to keep extra fluid from collecting in the lungs and to help the heart recover as fully as possible. Many women recover normal heart function or stabilize on medicines. Some progress to severe heart failure requiring mechanical support or heart transplantation.

There are several classes of medications a physician can prescribe to treat symptoms, with variations that are safer for women who are breastfeeding.

  • Angiotensin converting enzyme, or ACE, inhibitors – Help the heart work more efficiently
  • Beta blockers – Cause the heart to beat more slowly so it has recovery time
  • Diuretics – Reduce fluid retention
  • Digitalis – Derived from the foxglove plant, it has been used for more than 200 years to treat heart failure. Digitalis strengthens the pumping ability of the heart
  • Anticoagulants – To help thin the blood. Patients with PPCM are at increased risk of developing blood clots, especially if the EF is very low.

Doctors may recommend a low-salt diet, fluid restrictions, or daily weighing. A weight gain of 3 to 4 pounds or more over a day or two may signal a fluid buildup.

Women who smoke and drink alcohol will be advised to stop, since these habits may make the symptoms worse.

A heart biopsy may help determine if the underlying cause of cardiomyopathy is a heart muscle infection (myocarditis). However, this procedure is uncommon.

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I was experiencing almost all the symptoms listed during my pregnancy. What makes it so difficult is that they are similar to many pregnancy symptoms. As my symptoms worsened, I contributed that to the fact that I was 36/37 when I was pregnant with John, ten years older than when I was pregnant with Michael.

By the time I was admitted to the hospital I was at Class IV – having symptoms at rest. My ejection fraction was at 15%, where a healthy heart is around 60%. So there we were with a brand new baby and two little boys at home, scared to death, with doctors talking to us about life expectancy and a possible heart transplant down the road if my heart didn’t heal. In those first few days I remember agonizing over the possibility of Jon having to raise our three boys without me and I felt tremendous guilt.

There was a whirl-wind of information and a lot of medication. I remember being in that bed, my infant son and 3 boys at home, feeling so weak, so sad, with ice packs on my chest too because I was told that I couldn’t breastfeed or even pump because of my medication. The blood pressure machine would go off every 15 minutes and during that time, I would do the slow deep breathing exercises I learned in childbirth class all those years earlier and try to “will” my blood pressure down.

I was at United for around 7 days and sent home with all my medication, homework of cardio rehab, and feeling overwhelmed by my unknown future.I remember stopping at Target on the way home (Never to sick for a Target run!) and being so weak I felt like I was walking at a slant.

Not surprisingly, our wonderful families, friends and community rallied around us and carried us through.(This seems to be a theme we are all very grateful and blessed to have.) The short version of my healing is that I was on medication for about 1 1/2 years, was weaned off of meds and I GRADUATED from the heart clinic, which I am told is very rare. My ejection fraction is back up in the normal range and I am considered to be 100% healed!

Tomorrow I am wearing red, Jon is wearing red, I think I can get Jeffrey to, and I need to get a hold of Michael. John…he’s fighting me. I set out a very nice red sweater and he told me, “There is no way I am wearing that thing! I will look like a pilgrim!”. He wants to wear his Wild jersey, which is red, but it just so happens he is supposed to wear something a little nice for his choir concert tomorrow. To him a Wild jersey is WAY nicer that a scratchy ol’ red sweater.

I hope to see a lot of red tomorrow!!

Hey – a side note: I thought I was 47, but in writing this blog tonight I realized I am 46! Oh Happy Day!!

 

Clear Scans!

John faced the past two days with a casualness and calm that I am in total envy of. We rejoice with the news that his scans are all good once again. Dr. Raawas informed us that following COG (Children’s Oncology Group) recommendations, that John will next be seen in 6 months for scans and a physical. After that it will just by bi-yearly urine tests that test for cancer markers. He reassured us that if we ever have concerns that we can bring John in, they can do urine tests, Children’s is there for us. It was hugs all around as we left today…and a few tears.

While talking to my parents this evening they asked me, based on my last post, if going into scans this time was extra difficult. I told them no, those feelings are there every single time as we head into scans.(These feelings seem pretty mutual among the other cancer parents I know as well.) I just put it out there for everyone to see this time.  I worry when I do put “it” all out there because I don’t want to upset anyone, but those feelings are my reality.

Our plan had been to get through scans and hit the road for Madison to visit Michael, watch him play a little lacrosse, to celebrate good news. Well….when we got home on Thursday from Children’s John had pink cheeks, a runny nose and a cough. Not so perfect timing with scans. We decided we would not leave on Friday like we originally planned, but to wait and see how John was this morning. He seemed much better and he did have an exam that day, but no throat culture as his throat looked ok.  We now were planning on leaving Saturday morning. Around 7 tonight John came up to me and told me he had a headache. He never has a headache so I decided we better run in for a strep test. We had to go to Woodbury and he tested positive right away. There is a much longer version of this story here, but the doctor and I were not seeing eye to eye on what kind of medicine……and too bad for him I hadn’t eaten a thing since 11AM and I had found my “voice” for advocating for my son a long time ago. When we finally left and we were walking out John told me that he didn’t think the doctor liked me. My response, “Ya, well….you don’t mess with John Gegen’s mother and if this isn’t the right prescription when I get to the pharmacy, we’re calling and getting the one I asked for.” It wasn’t the correct one. I went home with what I had requested, with what has worked for John the past two times after first having to go through 10 days of a drug that didn’t work for him.

So we are not going to Madison. John was heartbroken and angry. I was/am bummed and while part of me wants to just pack up and go anyway, I know that’s not the right thing to do. While it is disappointing, I know we have so much about today to be thankful for and we will plan a different weekend for our visit.

This week has been exhausting and I can’t wait to climb into bed! Thank you again for all your support, prayers and kind words. Team John has always Rocked!

The Gegens will keep on keeping on…taking one day at a time….and try to look forward with hope and not in our past at our fears (Wish me luck with the last one! 😉 )

With my heart full of GRATITUDE…Love, Hope and Blessings,

Shelly

End of Treatment Scans this Thursday and Friday

dont worryWow! Here we are. It’s already been 12 weeks since John’s last scans ( It is absolutely crazy how quickly 12 weeks fly by!) and the somewhat of a finish line is in sight. For the past 1, 281 days of John’s life, of our lives as parents, we have endured the brutal roller coaster of scans EVERY 12 weeks. No matter how much I tell myself to “buck up”, get a grip, to breathe or remind myself how much we have to be thankful for …it never gets any easier. Never and I believe this is true for all families that have been through the hell of cancer. Why? Because we know that our lives can be turned upside down in an instant. Because we’ve lived that nightmare and we silently beg and plead for cancer to stay away.

They cycle of scans and the events that accompany the 12 weeks seem to remain pretty consistent in our home. We leave the most recent set of scans with great results on a high. Yay! We can breathe a little easier. We go about our lives as normal as they have ever been. Weeks fly by and now it is closer to scan week (UGH!). Without fail, John will complain that his leg hurts and while I am cool as a cucumber on the outside, (“Remember….you skated a lot tonight or jumped on the trampoline or I saw you sitting on your knees while playing Xbox…”) In my mind it’s pure panic, (“Is it cancer? it’s not cancer. He looks great. Sure he looks great, but he had leg pain at diagnosis. Just calm down. Don’t make a big deal about it to John and then he’ll stop saying his leg hurts. What are we going to do if…”, over and over.

This time we had some added excitement with the teeniest of bruises to his eyelid. (Other Neuroblastoma parents know where this line of thought is going.) Bruises around the eye are a sign of relapse in the brain. I had that kid closing his eye so often so I could examine that speck, I’m surprised it’s not permanently locked at a half blink. When I finally couldn’t stand the voice in my head saying, “Is it? Has he relapsed? Are we going to be going to New York for treatment?”, I told my husband my fears. I believe his response was, “What the hell are you talking about?” Ahh….the voice of reason, not that I didn’t have him all jacked up too and he was now also participating in the several times a day eyelid inspection of our irritated 9 year old son. The speck….all gone. it was a bruise and I probably took yet another year off of my husband’s life expectancy with my irrational thoughts.

And…last week John woke with a stomach ache and had diarrhea. The flu right? Not in my mind…,”He had stomach problems when he was diagnosed, weeks leading up to his diagnosis, didn’t he throw up in Dad’s car at the church in Green Leafton?…” (And yes… it is all one rambling thought.) Then a few days later Jeffrey gets the flu and (I’m so sorry I am admitting this Jeffrey and I love you tons.) and the ticker tape of pathetic thoughts is in full force, “Good Jeffrey has the flu, so that means John did have the flu, which means he hasn’t relapsed, he just has the flu, we’re all good here.” Seriously? Yes, cancer has driven me to a place where I find relief and comfort in one son’s illness as it gives me peace of mind for my other son. How backwards is that?!

My mind….it is EXHAUSTING! Every normal childhood complaint, in my mind, is a road back to the hell of childhood cancer. These thoughts can make the most rational person crazy and at times….batshit crazy. Now that is some real crazy.

Guess what week this is? Bingo! Scan week…and a big one at that. Tomorrow (Thursday) John will have a CT scan, an injection for Friday’s MIBG scan and a hearing test. Friday is MIBG scan and an END OF DFMO TREATMENT exam with Dr. Raawas!! If all goes well (Rational Shelly feels it will) scans will officially move to every 6 months (that’s the some what of a finish lie part. Done with DFMO, but never really done as he will continue to receive scans and be under the watchful eye of Children’s).

So tonight I can’t sleep, my head is pounding and I’m not looking forward to the donut scan (CT scan…John says it looks like a donut). I know from past experience that even though I will have given him Ativan for anxiety and Zofran for nausea,as soon as they start pushing the contrast in he is going to become very upset, extremely anxious, his stomach will hurt and he will throw up. He knows this is going to happen and yet walks in willingly every time. I wish my mind had the courage and composure of John Joseph.

Even with all the crazy mind games I play with myself, I know now clearer than ever, how grateful we are to have had the opportunity to have John on the DFMO trial…to give our child a fighting chance to live the life he deserves….to give us hope for the future. Jon and I are are so thankful to all the nonprofits groups like Beat NB and Because of Ezra, that have helped to fun research by the NMTRC (DFMO trial). Research that is dedicated to finding a cure for childhood cancer.

For the first time since April 6, 2012 John will be off of treatment. No daily medicines. No monthly doctor appointments with labs and urine tests. Just living the life of a 9 year old boy. The thought of it is both exciting and terrifying. Crazy stuff…

Love, Hope, and Blessings,

Shelly

DFMO = D-O-N-E!!

Today is a very special day here in the Gegen home. Tonight John took his very last dose of DFMO!

The Last 3 DFMO pills

The Last 3 DFMO pills

For over 2 years he has taken 3 pills in the morning and 3 pills at night with the goal of keeping him NED (No Evidence of Disease). We have driven to  Children’s Hospital in Minneapolis for monthly lab tests and urine analysis. Every 12 weeks we have endured the roller coaster of emotions that come with scans….and now here we are tonight. I knew this day was coming, but still it didn’t seem real, I must be mistaken. Yesterday, I sent out an email to John’s awesome nurse questioning whether it was really the last day. She quickly responded  yes and sent me an encouraging message (She always seems to know when I need one.). There I sat at my desk, after school, with tears streaming down my face. It wasn’t a sobbing cry…just that dang stream of steady tears I couldn’t stop.

The tears – I knew why they were there…

Tears of Gratitude – To John’s wonderful team at Children’s who’ve fought to get him where he is today, taught us what we needed to do, and encouraged us when we needed it the most. Today our son is a happy, healthy, rowdy, athletic almost 9 year old, with an energy tank that does not quit!

Tears of Change  – Our relationship with John’s team is now changing. During John’s initial treatment from April 2012 to May 2013, it felt like he was in the hospital more than he was home. Since August of 2013 John has had those monthly visits and 12 week scans. Every month we saw Dr. Rawwas and Cindy and they reassured us that John was doing well, calmed my Mom nerves and sent us on our way refueled to face the next month. I flat out asked Dr. Rawwas at a recent visit what I was going to do without seeing him every month and he told me that he is just a phone call away. As long as things are going well there are no more monthly visits and scans move to every 6 months! John will have his end of treatment scans in October and nothing until April!

Tears of…., “It’s  scary being off of treatment” – We decided to place John on the DFMO clinical trial because of the high risk for relapse for kids with Stage IV Neuroblastoma (50%…..35% being in the first 2 years).  Of all John’s treatments for cancer DFMO has by far been the easiest, with minimal side effects. (I am anxious to see if his hair will thicken and eyelashes grow back. John used to have the most beautiful long brown eyelashes.) It gave us some peace in our minds and hearts. Now we’re flying solo on a wing and a prayer. Ok….far from solo, but you know what I mean. Dr. Rawwas has told us several times that with John responding so well to treatment and being so far out now, that he believes that he is going to continue to thrive.  I imagine for the rest of our lives we will be fearful to some degree.

There you have it and it is awesome news! The fact that John is where he is today is truly amazing and a blessing. Sometimes I look at him and I am just in awe. To think how terribly, terribly sick he was…to where he is today…Awesome, Awesome, Awesome!

 

I haven’t posted in such a long time because our family routine has been as normal as ever. My writing has been about John’s journey, our family’s journey and I see that shifting once again with the scans moving to every 6 months. You don’t need or want to hear about our day to day lives, but I will fill you in in October with scans and then hopefully not needing to again until April scans. Who knows…I may throw something in between there.

I can’t thank you all enough for going on this journey with us. We are filled with gratitude for each and everyone of you and so thankful for your support. You’ve been there from our darkest days, to our most triumphant hours, to the peace of the most normalcy we’ve had in years. You have blessed us.

Before I sign off for a while, I want to give you a family update in pictures:

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We are blessed.

 

Love, Hope and Blessings,

Shelly