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,

Shelly

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.

http://www.childrensmn.org/blog/kidshealth/2014/12/meet-john/

 

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. :)

http://becauseofezra.org/why/john-gegen/

 

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,

Shelly

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,

Shelly

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,

Shelly

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.

http://www.childrensmn.org/news-and-events/blogs/giving-news-and-highlights/johns-story

 

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!

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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,

Shelly

 

Summer FUN!

Wow! It has been a month since I last wrote a journal entry! What have we been up to? Taking care of business and squeezing out as much fun as possible this summer. I’m loving every minute of it!!

The business end of the deal: This has included getting caught up on doctor appointments for me, eye exams all around and getting to the bottom of Jeffrey’s “asthma” issues.

Me: I hadn’t seen my doctor for my physical exam since before John’s diagnosis. While I made sure to get in for my mammogram, I skipped the whole office visit part. There I sat on the exam table draped in a gown that tied in the back…or was it in the front, still reeling from the HORRIBLE numbers I had just seen on the scale in the hall. I waited and waited and waited. I waited long enough I was certain there was a problem with my mammogram. There wasn’t. It was just busy. So what do I do once the doctor comes in and asks me how I am (This was a few days before John’s scans in July.)? I cry. Not a boo-hoo type of cry, but tears streaming down my face and they won’t stop cry. The nicer she was the more they came and I was frustrated that they wouldn’t stop. I’m sure it was the stress of the week with John’s scans, but I also know it was because of her “pep talk” that I need to take care of myself too.

Me again:Rheumatologist visit – Uneventful, blood work is all good, joints are feeling great right now….no tears

Michael, Jeffrey and Me: Eye exams – All doing well….Cheaters for me will be beneficial. I just haven’t found a pair that John doesn’t have a fit about or tell me how horrible they are. No tears

Jeffrey: The summer started with Jeffrey heading to see his respiratory doctor that he loves. They always talk hockey and with each visit he tells Jeffrey that he is going to be over 6 feet tall. (He likes the sound of that.) Jeffrey has been frustrated with his breathing while playing hockey, lacrosse and even participating in activities in gym. The short story is that after a treadmill test it was obvious that Jeffrey does not have exercise induced asthma. After seeing other doctors we learned he has a vocal chord dysfunction that mimics the symptoms of asthma. He has seen a speech pathologist and has breathing exercises he is working on to improve these symptoms during exercise. Jeffrey will visit the speech pathologist a few more times. No tears… :)

 

This summer has included a lot of talk with Michael about college. I can’t believe he is a senior! We went to visit Iowa State University in July and he has also visited the University of Minnesota. I know he has plans to check Madison out one more time too. He is working at Dairy Queen and we do our best to bug him just a little when we stop by.

We have been able to spend time on the river and up at my parent’s cabin in Spooner. We have done a lot of fishing and the boys have done a ton of tubing. Jeffrey has seemed to take up a huge interest in golfing, but the one time I went with him I was ducking from flying clubs. Now John….he may be his dad’s only hope of a true golf companion. He’s calm, has a nice swing and hangs in there for nine rounds.

John and I have bounced back and forth between our friends’ pools. We are totally spoiled and love every minute of it! John has also spent the summer out and about with his friends in the neighborhood. I think he’s making up for lost time.

Friends! I have had several opportunities, celebrate, relax and have fun with some of my friends. I am one very lucky lady.

I am lucky. I am blessed….truly, truly blessed and there is not a single day that goes by that I don’t remind myself of this. When John had worked up enough courage to climb on the tube behind the boat and he was grinning ear to ear, jamming both his thumbs in the air because he wanted to go faster and faster and faster….I was amazed. Amazed at that little boy that has gone through so much….there he was….bursting with energy, healthy and happy. I know our journey could be terribly different.

While John is doing so well, my heart hurts for the children and families that are fighting Neuroblastoma, some for many years. They are still fighting….their parents praying for a treatment that the cancer will respond to and their children to live. I pray every night for those families and for the beast to stay away from John.

John had his monthly appointment last week at Children’s. While we were waiting he grabbed the DFMO binder from my bag. He turned to the page that has the list of food he is to avoid and he spent some time reading and responding to each item. Then he flipped some pages and he said, “Survival?! Am I going to die?”. He had landed on DFMO schedule page and it listed the 27 cycles of the DFMO and then the 3 month survival scans, 6 months survival scans….That is where he saw “survival”. I took the binder from him and his response was, “I know…It’s like those survival shows. Like “Naked and Afraid”. Then he laughed and that seemed like the end of it as he moved on to a totally different topic.

It’s moments like this that I am reminded that there is a lot more going on behind those brown eyes. Earlier that day we had met with Brady from Children’s to share John’s journey. On the way up to the clinic that morning, in preparation for that meeting,  John and I talked about his diagnosis, treatment….all that “stuff” we haven’t really discussed in a long time. I am thinking that it was our conversations prior to his reading the DFMO binder that fueled his comment. Tomorrow the 2 of us are doing a little something to help bring awareness to the DFMO clinical trial. More on that later, but I should probably be better prepared for questions.

The summer is winding down. I have been up to school a little beginning the preparations of a new school year and going through the boxes where I shoved things for the past 2 school years. (By the looks of my classroom this afternoon….I shoved a lot!)Next week is the official start to my new year with teacher workshop and before we know it….the boys will be back to school. It is time!

Have a great rest of your summer! Keep on keeping on!

Love, Hope and Blessings,

Shelly

Special prayers tonight for Ila and Mae, Emma, Ethan, and Preston.

ALL CLEAR!

Good morning!   We didn’t get the final report on the CT scan until this morning and both scans are clear!! Yay!!

Yesterday I decided to look at the screen for the MIBG bone scan and afterwards I was able to text Jon that to my untrained eyes, it looked clear. (Jon is always with us, but never in the room while John is being scanned. This is the system we’ve worked out.). I left that scan feeling confident.

DSC_0471

CT was our next stop and that went quickly (I can’t see anything during this scan.) and we headed off to meet up with Jon for a snack because my kid was STARVING (His word.). On the way there he informed me that he cheated on his hearing test that had taken place the day before. The results showed improved hearing in low frequencies and the same level of hearing loss at high frequencies. When I inquired how he “cheated” he shared that if he couldn’t tell for sure if he heard a beep the audiologist seemed to look at him at that point and he would just raise his hand. This was a new audiologist to John and we both liked her a lot. I tried to explain to John that his results for hearing may not be accurate and he could have cared less. He will be tested again in 3 months and I will suggest they spin his chair around so he is looking at the wall and NOT the audiologist! The audiologist did tell me where his current hearing is at he qualifies for DAHH (Deaf and Hard of Hearing) services at school if we wished to have him monitored that way. This was surprising for me to hear that as his results were some better (although maybe not rightly so, but she didn’t know that) then last time. If his hearing ever becomes an issue at school or for his learning Jon and I will have no problem seeking that help, but for now we both feel they aren’t needed.

He "looks" like trouble!

He “looks” like trouble!

Did you really hear the beep?

Did you really hear the beep?

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Lunch was over by the time we hit the cafeteria so John snacked on pretzels, Oreo cookies, watermelon and cantaloupe….talking the entire time!

Next stop was the clinic for results. I shared John’s cheating hearing test scandal as they discussed those results with us. The doctor and Cindy thought he was very clever. We learned right away that the MIBG scan was clear and that the CT hadn’t been read yet. I was very proud of myself when they asked me if it would be ok if they called me with the results and I calmly said yes AND I actually felt ok with that. I’m not sure where the confidence came from, but I really did feel good about everything. Usually I am talking myself out of physically getting sick while waiting for the results.

On Wednesday John visited the Star Studio at the hospital and gave Dude the money he raised at our garage sale and selling beverages. John loves seeing the Dude. :)  

Star Studio Rocks!

Star Studio Rocks!

Thank you once again for the prayers and love. Your support continues to carry our family along on this journey and we are so blessed by each and everyone of you! Thank you for giving us strength to keep on keeping on!

(12 weeks until the next set of scans)

Love, Hope and Blessings,

Shelly and the guys