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. Jeffrey

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,


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.


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.



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,





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:


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.


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,


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,


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,



That Time Again – Scans!

We made through another set of routine scans! Last Thursday we learned all is still well with John! We are so thankful! Prayers answered!

There were a few bumps along the way that day…. a result of me. When we go to the clinic on scan day we are supposed to take a sample of John’s first morning pee. They use this to check for Neuroblastoma markers and a portion is sent to Michigan for the DFMO study. John woke up a 5, told me he was going the bathroom. It wasn’t until he walked back through my bathroom that it dawned on me that I screwed up. When I mentioned it to John he said, “It’s not my fault, I told you I was going to the bathroom.”. Yes, yes he did.

Once we are at Children’s our regular routine is put into motion. Jon drops John and I off and the 2 of us go get the scans done (I’m not 100% sure where Jon goes. I just know he’s a text away if I need him.).MIBG scan is first. John’s all set up…he’s in position, feet are taped together so he won’t move, his movie is playing, the scan in scanning. 5 minutes in…I bump the machine causing it to “lock up”. I was mortified! I was worried about getting John’s scans, other patients being able to get their scans, screwing the schedule up.. UGH! We had to wait for 20 minutes to see if it could reset and proceed with the scan. Nope – We were still able to get the pictures that were needed but it was more work for the technicians and more time on the table for my less than thrilled 8 year old son.

Next we move onto CT where he first gets an IV placed in his arm for the contrast. The nurse doing it was being really kind, but talking to much to John and that was stressing him out. She was asking him if he wanted to feel his vein…that is was like a wet spaghetti noodle. He wasn’t liking that. He’s more of 3-2-1 poke get it over kind of guy. IV in place and on to the scanning table. I was nervous because John threw up last time because of the contrast and it proved to be unpleasant again this time. John didn’t throw up, but he cried, didn’t sit still and maybe said a few bad words. The technician made a comment that John may need to be sedated next time. We don’t want that to happen! We’ve gone nearly 3 years with this scan and it is quick if he feels ok. After going over the situation with Dr. Rawwas, we are going to try Zofran next time for the nausea and Ativan for anxiety. I suggested that maybe all 3 of us should take the Ativan.

3rd Stop was the hearing test. John’s hearing remains the same as last time.We were glad to see that it hadn’t decreased and  we remain hopeful that it will improve some when he is off of the DFMO.

After lunch John had his appointment with Dr. Rawwas at the clinic. That is when we were told all is well. There are spots of sclerosis on some of his bones where cancer had been, but Dr. Rawwas explained to John that these are not harmful and that they are like a scar you can get on your skin.

The manufacturer for the DFMO pills recently changed and John agreed to participate in a study a that required he stay 6 hours longer at the clinic that day while he had 5 different blood draws done (out of the IV that was placed for the ct scan) to see how his body broke down the old DFMO pills. We had to hand over all our remaining DFMO and we were given the new ones, from the new manufacturer. On Thursday we got to the hospital at 8 in the morning and left at 8:05 that night! It was a day! John went back up today to do another 6 hours with 5 blood draws with the new DFMO in his system. He’s had enough of the clinic for a while.

I forgot to mention that during that 6 hours of hanging out for blood draws John had a physical therapy evaluation. The therapist told me she doesn’t think she’ll even need to see John again! He tested in the normal to normal-high range in all categories and his ankles are twice as strong as the last time she tested them! Exciting news…it must be all that hockey he’s been playing. John was very proud of his results!

In 12 weeks we’ll do it all over again, minus the extra blood draws. It is crazy how quickly 12 weeks can fly by.

john iv john blood draw

The week prior to scans our family went on a road trip for spring break all the way to Florida! That quality family time deserves a post of its own. I’ll work on that soon!

Gegen Family Updates:

The official hockey season is over but Jeffrey dabbles a little in hockey by participating in a 3 on 3 league and John is skating in a skills clinic that puts him on the ice twice a week. (Keep moving those legs!)

The lacrosse season officially began today with the start of try-outs for Michael and Jeffrey. I really dislike try-outs. I get it, but I still don’t like them.

The BIGGEST news….drum roll…….Michael applied and was accepted at University Wisconsin- Madison. We would’ve of been proud of wherever he chose (His parents are SCSU alumni after all… and I like to tell him if it wasn’t for St. Cloud State….there wouldn’t be a Michael because that’s where his mom and dad met. That always grosses him out…a lot!), but Madison was his #1 choice and he worked very hard to accomplish the goal of being accepted. I can get pretty sad when I think of him leaving and our family dynamic being forever changed. This too feels like a need for a post of its own.

badger m grad

One more: John and I celebrated our 20th wedding anniversary last week. It is truly astonishing how time goes by so fast, so very, very fast.

We are healthy. We are happy. We are busy. We are blessed!

Love, Hope and Blessings,