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,


Merry Christmas, Happy New Year and Clear Scans!

Merry Christmas and Happy New Year from the Gegen family! I am sorry that I didn’t get Christmas cards out this year. It just didn’t happen and I had to let it go. We enjoyed all the wonderful cards we received and I hope to be back on track next year with them.

2014 has been a very good year for us! The year did still consist of monthly clinic visits and 12 week scans for John, but we were as close to normal as we’ve been since April 2012.  All 3 boys played hockey in 2014, we took the train to Chicago for spring break, many weekends were spent having fun in our cheap charlie boat at my parent’s cabin in Spooner or on the river here near Hastings, and we even got up to Walker for some end of the summer fun(No RV this trip!)..just to name a few of the activities we enjoyed during 2014.

We closed 2014 out with John’s most recent set of scans. Yep…on December 31, 2014 we found ourselves once again at Children’s Hospital and Clinics, Minneapolis. I would like to say that John was “rockin'” going into these scans…healthy, no complaints of pain, nothing setting off warning bells. So why did I find myself a COMPLETE MESS?! CMS had returned – Crazy Mom Syndrome – and it sent me into a whirling, twirling downward spiral.

Wednesday…..I put on my best game face and up to Children’s hospital the 3 of us went. When I told John the MIBG scan was first he said, “Easy peasy”. That favorite gal is there!  That was over, my untrained eye didn’t observe any “hot spots”, and we were on our way to the next scan. The donut scan (CT scan) not so easy because he doesn’t like the feeling the contrast gives him and on this day he got sick during the scan. I think it had to do with the fact that they had yanked his jersey up and around his neck, taping part of it by his head to keep the rivets (metal circles) out of the CT scanning path and in the process making it tight on his neck. We’ll remember to take it off next time.

We were able to leave the clinic that day knowing John’s scans were all good…a tremendous weight lifted off our hearts, with energy to gear up for the next set of scans in March (March already!!)

I know I haven’t been posting that often. No news is good news! This means our days are mostly filled with the same routines as everyone else. So if you don’t hear….don’t worry. That just means I’m at a hockey practice, a hockey game, or running here and there with the kids. Who knows….maybe I’m even trying to get to bed at a more reasonable time! It means John is fabulous! I will still post occasionally to keep you posted on John and our family.

We are so grateful for all the love and support we have had showered down on us these past 2 1/2 + years. Thank you for helping us to keep on keeping on!

Happy New Year!

Love, Hope and Blessings,


Update: In my last post I mentioned that that Child #1 had hung up his skates…change of plans. We are back to all 3 participating in the BEST SPORT EVER! 🙂

John: Spreading Awareness

September was Childhood Cancer Awareness month and our friend Caitlin Nickel had a fundraiser through her business to promote awareness. Through the generosity of  Caitlin, our families, and my friends and colleagues from the Hastings schools, Caitlin was able to order and fill thirty-one brand cinch sacs for every room on the oncology floor of Children’s Minneapolis! The bags were filled with activities, toys and crafts. They were a huge hit here at the Gegen home as all three boys thought they were pretty cool!

A very proud John Gegen pulled a wagon full of these cinch sacs through the hospital to the Welcome Desk where he dropped them off. While John wanted so badly to take them right up to the 7th floor, he understood the visitor restrictions and that they are in place to keep the patients safe. A little problem occurred when he realized that he had to surrender the cinch sac he was wearing. After a brief explanation that if we didn’t give that one too, one room would be without a bag, he handed it over without a fuss. I have to admit….having John take that off of his back tugged at my heart like crazy! (It’s a good thing I put in an order to Santa for an identical bag!)

Thank you, thank you to everyone that helped Caitlin make this wonderful gift possible for those kiddos fighting on the 7th floor!

Today on Face Book I saw John’s face on 2 different posts. One was for Children’s Hospital and Clinics and the other for a wonderful organization called Because of Ezra. We are forever grateful to both…for what they have done for John and how they’ve touched our lives. You can click on the links below to take a look.



If you have clicked on the previous links from Because of Ezra you will have seen some of this footage, but there is also new footage. 🙂 This is John’s story…our family’s contribution to help raise awareness.

When I watched John’s video today…the tears streamed down my face. Hmmm….was it that pretty music, the images of my healthy John, or the snaggle-tooth in that 7 year old mouth? No it’s the desperation in a mother’s voice and on her face (around the 3:23 mark). The constant worry is like a dark cloud that is forever looming. I thought the worry would lighten some…but it obviously hasn’t. I’m a work in progress. 🙂



We’ve been busy here at home. Jeffrey and John are playing hockey while Michael decided to hang up his skates this year. Mom and dad had to get over that as Michael is pursuing his new interest of snowboarding. (There’s only been one ambulance ride from the slopes to Hastings and since then we’ve established guide lines for injuries that would warrant a ride in the back of an ambulance. I told Michael he should have stuck with hockey…)

We had a very nice Thanksgiving in Rochester at my parent’s house. I always enjoy seeing my brothers and their families as we don’t see one another often. Michael and Jeffrey found my great nephew  Lincoln entertaining and I hope they didn’t teach him any new “tricks” or words while they were in the basement playing Play Station! I know at one point they were telling him my name was Shelster..they are always so helpful.

Little John Gegen is full of the Christmas spirit. His love of the holidays even had his dad stringing lights up on the house! John’s elf on the shelf has been very busy causing mischief  in our home. Last night it toilet papered all 3 of the boys’s rooms while they were sleeping and the night before a bunch of wrestling guys got strung up on the Christmas tree. I love the twinkle in John’s eyes and his pure innocence when it comes to a few holiday traditions. 🙂

I hope you all had a blessed Thanksgiving with your loved ones. We are always and forever grateful for each and every one of you!

Love, Hope and Blessings,


Clear Scans!

Ready or not, John’s scans were here again before we knew it. How can 12 weeks possibly fly by so quickly? Scan week kind of snuck up on me, but when the week prior to scans my face started to tingle…I knew I was stressing out…WAY out!

The tingle in the face? Weird I know. I don’t get it too often only when I am really, really stressed. It all began way back during the school year of 92-93 (My Alief friends may remember this.). The short story is there was a father of one of my first grade students that didn’t like me very much. His son told me his dad said I was a “Lowdown, beer drinking, Norwegian ” or something along those lines. While my friends and I did have a few good laughs over that comment, the dislike for me grew to be rather intense. On the last day of school before Thanksgiving break that year, I was sent home because I believe he had called the school letting them know he was coming up. My principal came and pulled me right out of my class and had me leave immediately. All rather nerve-wracking for a 2nd year teacher. The tingle in the face led to hives, which led to steroids, and that led to me hitting the Stop and Go for a personal pan pizza on the way home to my mauve and light blue decorated apartment …on too many evenings. Not good

Since then whenever I am stressing a lot…tingle face. Thankfully it doesn’t happen too often.

There have been a lot of changes this year for me and everyone at school. I think I thought I was too busy with school to worry about scans this time, but the tingle face was reminding me.

Last Thursday, Jon, John and I headed to Children’s in Minneapolis. First was the hearing test and there was no cheating this time! John’s hearing hasn’t changed since last time. Next, he had the MIGB scan. Our routine for this is that Dad doesn’t come in with us, but I keep him posted with text messages. John picked out Despicable ME 2 to watch and the scan starts. It lasts about 36 minutes. I can see the scan on the screen and I was sending John reports as it moved down John’s body. I was later informed that was too much information. He just wants the 1 “Looks good” text in the future.

When that was over I thought we were moving on to CT, but I was informed that there was new protocol and there would be another 30 minute scan. This was a MIBG Spect scan that would give a 360 view of John’s torso area. I wasn’t to worry. They hadn’t seen anything. This is what they would be doing for scans for now on. Part of me wanted to say, “Hey…I’m fine skipping it. We haven’t done it before…let’s not start.”, but of course I just finished watching the movie with John. He was a trooper as always.

Next on to CT. Up on the table John climbed without reservation. This is a short scan. A few pictures with holding his breath, then they give him the contrast, one more picture and then he is usually done. There was a little drama with the contrast this time. It usually gives John a warm sensation throughout his body that he doesn’t like, but this time he could taste it as well and he briefly thought he was going to puke. As I was comforting him, the lab tech opened the door from the room she was in (the one with the class window I can see into) and said to the other tech that was with us, “I need you to come here and look at this picture.” Immediate panic set in. Through the window I could see the two of them looking at the computer screen. John was still on the table, thankfully distracted by all the new Finding Nemo stickers on the walls and ceiling. The tech people left the windowed room and went out another door. My mind raced….”This is it. They see something…”. Thoughts of the 3 children that had just recently been taken by neuroblastoma filled my head. The lead apron I was wearing was becoming unbearably heavy. The longer we waited the heavier it seemed to be. I could no longer stand completely straight up and soon I found myself leaning on the CT table where John was still laying. I’m talking bent over resting on my elbows leaning. John found this great because he could play the “I Spy with my little eye” game even better with me so close. Finally they came back in and sent us on our way with me convinced we were about to enter hell of cancer once again.

Thankfully my darling son had no idea he was in the company of a complete basket case. I had sent a text to Jon about what had went on and what I thought. (Poor guy! Note to self: Don’t do that again!). I couldn’t even make eye contact with him without being teary eyed. He kept mouthing to me, “It’s fine” as John ate 2 hot dogs and a bag of pretzels. This day was just a normal day at the hospital for him. 2 hours…That’s how long we had to wait for results at John’s scheduled appointment with Dr. Walrus. When given the good news a wave of relief along with exhaustion…hit me.

Of all the scan days since being off treatment this had been the most difficult one for me. I had no reason as far as symptoms to worry about John. He’s doing AWESOME! I think it’s all the sadness that has been happening in the world of neuroblastoma. Those 3 children being taken from their families just days within each other. How sneaky and evil this stupid cancer is. The worry…forever the worry.

A few days ago Michael mentioned to us that he received a pass in one of his classes to go see his counselor. He told me thought it had to do with John and it made him very nervous. She just wanted to talk to him about college plans. Of course this made me very sad for him. The worry. Michael worries about John. He is always the first person we call after John’s scans.

While I was extra stressed this time around, I am also very aware that we are so very blessed to have John here to worry about. John’s story is an awesome story. Story of hope for other families facing stage IV Neuroblastoma. His mom just needs to chill a little….maybe a lot!

.John 2nd grade

The next set of scans for John will be on December 31st. We learned if everything goes as planned,he will be done with DFMO on September 10, 2015…6 days before his 9th birthday. At that time scans would move to every 6 months.

Thanks for listening to my rambling this evening.

Love, Hope, and Blessings,


PS – The tingle in the face is gone. 🙂

2 Years Ago Today!

September 25th is a very special day to our family. 2 years ago on this very day John received tons and tons of healthy stem cells to jump start his system once again. While it was probably one of the scariest times for our family throughout his treatments, as we knew the risks John faced …and before he got better, he became very, very ill….the stem cell transplant meant hope. Hope for a future without cancer, without neuroblastoma. 

On September 25, 2012 our family, along with all the grandparents,  gathered around John’s bedside as the hospital Chaplin gave a blessing. In true John style…he plugged his ears for the entire process. When it was the actual time for the stem cell transplant (a quick procedure that takes about 10 minutes) the grandparents were all set to watch on Skype from the patient lounge while the five of us were in the room. Almost instantly John began to throw up and the Skype was over. Balloons and gifts were given as this was a truly special day…a second birthday. John could have cared less about all the fanfare, the intense chemo prior to the transplant had wreaked havoc on his 6 year old body.

John entered the hospital on September 18th and came home on October 16th. He is one tough kid!

Here are a few pictures from his stem cell transplant days:

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We have been talking to John about this special day and he has had a “Whatever” attitude about the whole thing. While with me this afternoon/evening he was taking full advantage of the day. After hockey, “Will you get me a milk shake? It is MY day you know.” When asked what he would like for dinner and looking forward to eating out myself…the response, “I want Mac and Cheese. It’s my day.It’s like a birthday.” Mac and Cheese it was. He did his best to tease his dad that no one else was around on his special day(It was one of those evenings.). There will now be a proper celebration with the “Celebrate Plate” and all this weekend.

While we are ever so thankful for the blessings of John’s health, we hurt for other families. Last night I learned of 2 more children being taken by neuroblastoma. One was Princess Emma and the other a little boy who’s story I have followed for the last year. I was rattled. I was a mess.

I was a mess because my heart hurts so badly for those families. I can not fathom the pain and heartbreak they must be feeling. I pray for peace and comfort for them.

I was a mess because news of children passing from neuroblastoma scares the crap out of me and fills me with fear.

John’s battle and the news of Emma and other children passing from childhood cancer makes me question ..How am I going to live me life to make a difference? How can I help?  Where can I make an impact?

My life is definitely a work in progress. What do I know for sure? I know life can change in an instant. I know life is too short to sweat the small stuff (Seriously!). I know that we should love and live with hearts bursting with gratitude and grace. Do I do all of these things 100% of the time? No, but I can quickly remind myself what is really important and try to snap out of it.

Love, Hope and Blessings,


Special prayers for our friend Kathy.

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month and the Gegens have been doing a little to help raise awareness.

Because of Ezra : From their website:

Children just like Ezra are diagnosed with neuroblastoma and other solid-mass pediatric cancers every day. We seek to fill some of the large gaps in pediatric cancer research funding and focus on these solid-mass cancers. Our goal is to raise money to support relevant research and clinical trials with physicians and researchers who can help make a difference in survival today.


We are committed to knowing the neuroblastoma research landscape and specifically funding patient-affecting trials and research. Over 90% of our proceeds go directly to research – and we have no paid staff. You can watch stories of children being treated on the actual trials we’re helping to fund at 800days.org.


John is one such child benefiting from  Because of Ezra’s dedication to finding a cure for Neuroblastoma. In late August we sat down and shared John’s story.

(Just a side note: When I speak in the video of our experience with DFMO, Choosing DFMO or not doing DFMO…I am speaking of what Jon and I felt was best for John…for our family and we respect whatever decisions other families make.)


Also in August we were asked to meet with a representative from Children’s Hospital and share John’s story of giving. Just click on the link to read the story on Children’s blog.



Last Saturday we went to the 35W bridge in Minneapolis that was lit Gold in honor of Childhood Cancer Awareness Month!



FundraiserA friend of mine came up with this amazing idea for a fundraiser to spread awareness of childhood cancer and to spread a little sunshine on the kiddos that are fighting it. Please consider donating money for a bag or even go in with a group of friends on a bag. (If you got enough people to go in on a bag it would only be a few dollars apiece.) John is hoping he has many bags to pass out at his old stomping grounds!

If you or a group wish to purchase a bag, you can contact Caitlin at the number on the flyer or you can mail $ to me at :

Shelly Gegen

1402 Jefferson Street

Hastings, MN 55033


This goofy kid….turns 8 tomorrow(16th)! September 25th will be the 2 year anniversary of his stem cell transplant! He’s come such a long way. John is a daily reminder of how fortunate our family is and what really is important in life. Tonight I tucked him into bed and shared his birth story (the good parts). I practiced my rendition of the birthday song I was threatening to barge into his classroom and sing. After Jeffrey’s look of disgust, I’ve since promised to steer clear of Mrs. Rickert’s room. Gotta love my boys!




While life seems the closest to normal for us as it’s been in a long time, there are many children and families hurting. 2 families this past week were told there is nothing more that can be done for their children who have been fighting relapsed Neuroblastoma.  I can not even begin to imagine the heartbreak. Much love and tons or prayers for them.


Love, Hope and Blessings,