Aloha! I’ve been attempting to upload our pictures so you could see all the fabulous fun we’ve been having with zippo luck. I give up for tonight and I hope to have better success tomorrow.

BUT Tropical Storm Flossie is expected to make her debut around 2 this morning. There has been a lot of talk and info slipped under our doors from the hotel staff. The pool is closed until further notice, lounge chairs are stacked, umbrellas tied shut.  What this all means for us is that we will probably be in the hotel all day tomorrow. Our snorkeling/dolphin excursion has been cancelled and rescheduled for Tuesday. If we can go, we can.

i have much more to share once technology is on my side…. It may be after we get home! We are all having the trip of a life time. Hawaii is beautifully breathtaking, relaxing, and loads of fun. This Make A Wish trip has been such a gift to us all.

I’ve been bumped off this way too many times as I’ve attempted to post. I’m out of here….up to bed.

Love, Hope & Blessings,

Shelly

As I sit here out near the pool ( because I can get Internet service here) I am completely exhausted for the best reasons possible …sun and lots of family fun!  All of the boys are asleep and I’m heading that ways soon. I will add details later, but I wanted to share more photos of our days so far.

You can tell from the photos we are loving our pool time. I can’t tell how many hours John has already spent in the pool!

On Thursday we had the day to play and we ventured into Kona for lunch and a little shopping.

Today, , Friday, was the volcano tour day. We all had a fabulous time. I was worried how John was going to handle it because it was going to be almost a 12 hour day, but he was awesome! He decided to take photos on his Ipod and he took this very seriously. He ended up taking 98 pictures. To say he was into it using a huge understatement. I want to share so much more, but it will have to wait because I’m going to bed. The wind has picked up and I may just blow away.

Tomorrow evening we are going to the luau here at the hotel and we are all looking forward to that cultural experience.

We are having a BLAST!

Love, Hope, & Blessings,

Shelly

I’m sitting at the pool… Soaking up the sun. Jon and John are swimming, while Michael and Jeffrey are still sleeping. It is just past 8 in the morning.

We don’t have Internet in our room so I am on my phone poolside. 🙂 I will up date details later, but I wanted to share pictures sooner than later.

Flights were good… Our room is ocean front. We’ve already been spoiled perfectly rotten. Now if I could just quit getting teary eyed every time I think a out this awesome gift we’ve been given from Make A Wish,
I’d be in good shape.

I’m texting this entry and I’m a poor texter!

Aloha…along with love, hope & blessings,
Shelly

d well

Wowza!  It has been a hectic, exciting time getting ready for John’s Make A Wish trip to Hawaii these past few days. The washing machine has been churning nonstop! I’m exhausted! Tomorrow morning at 9:00 we will be picked up by a limo and then we’re on our way. I can’t believe it and I am so ready for some family fun!! John took the last paper chain off of the Hawaii count down before going to bed tonight. Those two were W-I-L-D! Somehow they ended up in the same bed and are sleeping like little angels.

They are out for the count! Not an eye blinked when I turned on the light to snap the photo!

Flying nerves are settling in a little for Jeffrey and John. Neither one has ever flown before. Jeffrey happened to walk through the living room today when the footage of the plane crashing because of the landing gear malfunction. Yep…unfortunate timing for him.

As I’ve been running around our home and out for errands these past two days, I’ve been fielding calls from Michigan, The University of Minnesota’s Journey Clinic, and Children’s. The date has been set for John to be in Michigan on August 12th! My first thought was, “Wow, that’s soon!” and my second thought was, “Yes! It doesn’t interfere with my workshop time for school.”

At times I feel like a terrible mother because when I hear appointments need to be scheduled my mind immediately jumps to school and how I’m going to do finagle the schedule so I don’t miss work of the least amount possible. I want to be there and I want John to be at school as well! My gal at Children’s know this about me and she is working on getting John in for his scheduled hearing and echo…all that stuff before my school year starts. The scheduler at the U doesn’t know this about me and she probably thought I was nuts when I kept asking, “In the window  these tests need to be done, when is the latest date?”. (I was trying to push it as late into September as possible.) John’s 1 year stem cell transplant anniversary is coming up in September and there are tests that need to be done. I can’t believe it has been almost a year already since that scary time! A new test for John, routine at this time post treatment, is a neuro-psych evaluation…again checking for late effects of the chemo treatment.

I don’t want to dwell on all of that too much right now, but those calls always are a reminder (like I need one) of what we are dealing with.  August looks to be busy…I think a psych eval on me would be much more entertaining for the doctors….but we will just keep on keeping on.

Back to Hawaii! I’m sure we’ve all over packed. I gave John a gallon sized ziplock bag and told him he could take as many of his wrestler guys that he could fit in it. Wow! He jammed a bunch in there!

Excited, Excited, Excited! We all are and so very grateful! I’m out numbered on this trip with those 4 guys and I’m going to do my best to take their excitement in stride and enjoy each and every minute of it. You know how excited, wild boy behavior can be…and their dad will more than likely be the ring leader!

I can’t wait to share pictures with you!

Aloha….Love, Hope & Blessings,

Shelly

ps…Come hell or high water all 5 of us will be ready and waiting for our 9:00 limo. There’s no being tardy for the party!!

This weekend our family enjoyed the Rivertown Days festivities. Michael and his friends headed down on Friday evening to ride a few rides and munch on food. Jeffrey headed down with his buddies on Saturday afternoon and they did the same.

Jon, John, Judy and I headed down on Saturday evening. John loves the giant slide and because of my foot his dad got the fun job of going down it with him 4 times!

 Our troubles began after the first slide ride. John spotted someone walking around with a giant green inflatable alien. It must have been almost five feet tall. The kid wanted the alien! We distracted him for a while by heading over to the area with the food and the band. We all got our snacks and then it was back to the midway to find the game and attempt to win the alien. The game was the ball toss game where you try to toss your ball into a cup with a red, yellow or blue rim. To win the alien you needed 3 yellows. The odds were not in our favor. I left this task to Jon and stood back for awesome people watching. $15 later and an alien still wasn’t won. Dad called it quits. This did not go over well with John and he was so desperate to win the alien, he couldn’t even concentrate to pick out the prize (from the second row) that he’d won. I picked it out and then we were heading to the car with one ticked off kid.

Would you payed $15 for this? By the way….this is not the alien John wanted. This is a much smaller inflatable thing he would never have chosen. I know this…because he told me so!

We were also able to catch the great Rivertown Days firework show close to our house.

On Sunday we headed downtown to watch the parade. We were able to sit by our friends and the kids had a great time. The weather was pleasant, the parade great, and the candy was plentiful!

Just a while ago we headed over to Grandma Judy’s to borrow some of her luggage for our trip. Wednesday can’t come soon enough!!

I hope you head a great weekend too!

Love, Hope, & Blessings,

Shelly

This evening we headed up to The Mall of America for John’s Make A Wish trip to Hawaii. We were anxious to learn where we would be staying and the activities we would be doing. Of course we were the last ones in our group to get to get to the Microsoft Store (Dang it!). Family members, friends and John’s Make A Wish volunteers, Julie and Rachel, were waiting for us. We were taken to the back area of the store where there are tables set up. This is where we had our Toppers Pizza (This is a Gegen family favorite. We discovered Toppers during John’s very first hospital stay as they deliver to Children’s Hospital.), drinks and ocean themed cupcakes. After we ate we could check the store out, play games and they even had a scavenger hunt that a few people did.

John spent a good deal of time playing National Geographic on the xbox Kinect. This was his first time playing with a Kinect system and he loved it. We had a difficult time pulling him away from it and his was very sweaty from all the jumping and arm movements he was doing. While John was playing the games, Jon and I were shown our folder for John’s trip! (More on that later.)

Towards the end of our evening Rachel from Make A Wish gave John some gifts. He got a gift bag of activities to keep him busy on the plain and a bucket of beach a pool toys. Perfectly perfect for his adventure!

Then Gigi from Microsoft presented John with gifts as well. He was so into the Kinect game he was playing on the theater size screen it was challenging to get his attention. John received his very own Kinect system for his Xbox! It came with a game in the box, another sports game and then John was allowed to go and pick any 2 games he wanted in the store! A dream come true for a little boy. It was quite the special evening for John. Thank you to Make A Wish and Microsoft for planning our evening, being so kind, and for all the generous gifts. Thank you also to our family and friends for making the trip up to the mall and sharing in this evening with us.

John’s Trip Details!

OnWednesday, July 24th our family will be picked up by Total Luxury Limousine at 9:00 am and taken to the airport.  We will fly from Minneapolis to Denver, Denver to LA and then arriving at Kona at 7:56 pm, Hawaii time. We will then grab a rental mini van and drive the 18 miles to our accommodations at Waikoloa Beach Marriott Resort & Spa.  http://www.marriott.com/hotels/travel/KOAMC-Waikoloa-Beach-Marriott-Resort-and-Spa

Make A Wish has planned 2 awesome activities for our family. We have also been given money for meals, expenses and other activities we may wish to plan on our own. This is what we know as of right now:

Thursday, July 25th: On our own

Friday, July 26th: Hawaii Forest & Trail:Kilauea Volcano Adventure  – I’m a little worried about my foot for this one, but I’ll manage. 🙂 It is an 11 – 12 hour adventure!

http://www.hawaii-forest.com/index.php/tours/kilauea_volcano

Saturday, July 27th: On our own  We have already decided that we would like to do the sunset luau at our hotel on this day.

Click to access SunsetLuauBrochure.pdf

Sunday, July 28th: Submarines!   http://www.youtube.com/watch?v=Yn5dULrfiUY

Monday, July 29th: On our own

Tuesday, July 30th: Departure Day   Leave Kona @ 9:52 pm  Kona to LA, La to Denver, Denver to Minneapolis arriving @ 4:10pm with a limo ride back home!

I can’t begin to tell you how excited we all are! When we got home this evening we were all doing our own research on Kona and what other activities we would like to do. If you have any suggestions, I’d love to hear them. 🙂

I need to get to bed. A late evening nap has kept me up even later than normal!

I hope you have a marvelous weekend. We plan on checking out the Hastings Rivertown Days Festivities this weekend. Go, Go, Go!

Love, Hope & Blessings,

Shelly

Today was John’s last day of swim lessons and he successfully passed to the next level(Fist pump for normal childhood victory!). In the picture he is holding his evaluation, certificate and Smarties candy. Fin, as we’ve called him the past 2 weeks, absolutely LOVED going to swim lessons! It was a great way for us to start our days. It is crazy how his confidence in the water has increased in such a short time. This week the 2 of us even spent time in the deep end of the pool. No life jacket!

This afternoon we went back for more pool fun with our friend Maria. While we were there we ran into one of my former students and his cousin whom I’m going to have in class this year. We had fun playing several games of Marco Polo and splashing around. It was a great afternoon for the pool.

Jon and I were commenting the other day how John’s body has healed so well from his surgeries. Most obvious, to me, is the scar and lighter skin from all those months of that hickman bandage on his upper chest. Then there is his scar to the upper left of his belly button. Straight up from his belly button is the initial biopsy scar and then the long horizontal one when the tumor was removed. If you click on the picture it will enlarge and you can get a better view. He’s lookin’ good. 🙂 What is amazing to me is that not one child has asked Jon what his marks are. I would expect it because he runs around the pool without a shirt and kids are honest…saying what they see. He’s been waiting….waiting so he can tell his superman story. You know…deflecting bullets and all that good stuff.

*Sigh* I went for a MRI of my foot the other day because I’ve continued to limp around even after I was trying  to convince myself I wasn’t and Jon reminded me I was, while the other John did a mom impersonation dragging one foot behind himself…It appears that there is a stress fracture in my foot. B-O-O! (Picture me cupping my hands and giving a big ol’ too long of a boo..) Hawaii…it’s just how it is. I know life could be much worse than having to wear this stupid boot. I have permission to not wear it at the pool or beach and I can hobble around the hotel room. On the positive side I can wear one cute flipflop! I’ve been stuck in tennis shoes since May!

How did I get this stress fracture? Training for a Marathon? That’s what the pediatrist asked..I guess this type of injury is seen with intense workouts. This is not my case. Did it start when I was the dancing fool at our friends wedding in May, the same wedding where I sprained my ankle? Maybe… This is what I do know. Once my ankle started to feel better I wanted to begin a light exercise routine to get beach ready for Hawaii…work on shedding the nearly 15 lbs I’ve gained. After scrolling through the exercise options on Comcast ONDemand, I chose a walk a mile in 15 minutes. Basically marching in my living room. I think it was geared towards the elderly…and the next day my foot hurt. How pathetic is that?! So I got over the goal of losing weight. I just wanted to be able to take a normal stride on the beach. Neither goals were met! *Sigh*

Awesome News! Today I received a call from Dr. Giselle Sholler from the Van Andel Research Institute in Grand Rapids, MI. She had received all necessary information about John’s treatment just today from Children’s (Huge shout-out to Cindy! Thanks!), reviewed it, determined that he is eligible for the DFMO clinical trial, and is ready to get the ball rolling! Dr. Sholler mentioned that Children’s Minneapolis will be a DFMO site, but it may take a few months to get final approval so we will start in Michigan an then YES, we will transfer John’s DFMO treatment to Children’s Minneapolis. Based on the end of John’s treatment she would like to begin within a month and is looking at the weeks of either August 12th or 19th. The first visit will be three days long with bone marrow biopsies and scans. This has to be done at the start to make sure John is NED as you need to be NED to be on this trial. At that time we will be given a supply of DFMO, sent home and hopefully back at Children’s for care. I was a jumble of emotions when I got off the home. I was excited, relieved, and even a little teary-eyed.

When Jon and I talked about this turn of events this afternoon I learned he felt the same way. It is a huge relief to know that this is actually going to happen in the time it needs to happen. If we didn’t attempt to enroll John in the study or missed “the window of opportunity” and his nueroblastoma came back…how would we live with ourselves as parents? I need to know,not only know..but do,  everything possible to improve John’s chances of not relapsing. There are no guarantees, but we have hope.

I saw a quote that another mother wrote about Dr. Sholler. This nueroblatoma mom said “Dr. Sholler is a badass pioneer who will change the face of this disgusting disease.” She sounds like the perfect person to be on our team!

Wow! This has turned into a super lengthy post! Tomorrow we learn about John’s Make A Wish trip. We are all so excited!

Love, Hope & Blessings,

Shelly

Thank you for the donations to our CureSearch Walk page!!

This evening I attempted to go to bed at a decent time. Sleep is not my friend these past few weeks and it’s really starting to get on my nerves. Sometimes my lack of sleep is due to the big boys…waiting for Michael to get home by curfew, the kids scrounging around in the kitchen for a late night snack.. Tonight I went to bed and the hall light flicks on and into the room comes Michael needing to ask a question. Question answered he left and then came back a little while later to ask another question. Next in trots Jeffrey and he gets right up and into our bed…talking, talking, talking…about his lacrosse game, his Summer Stretch day for church, talking, talking, talking. Jon was working on kicking us out of the room because he needed to get to sleep (For the record, I wasn’t doing anything. Jeffrey was doing all the talking!)Then Jeffrey asked us if we’d heard about that girl Talia. My stomach sank. Talia is the girl I mentioned in my previous post that died from Neuroblastoma. I asked Jeffrey how he knew about her and he informed me that it was something that he had received in a group message on his phone. (To myself I was wondering why anyone would forward a child passing away from the same cancer John was diagnosed  with to Jeffrey…but then I thought more and I realize it wasn’t meant in a hurtful way and I probably have worked too hard to shield the kids from things they more than likely already know.) At this point Jon really did kick us out of the room.

When Jeffrey and I got into the living room we were able to talk about Talia and the facts that were forwarded about childhood cancer and the lack of funding in the message sent to him. I know Jeffrey now has a better appreciation of why our family is participating in the CureSearch Walk in September. Thank you for the donations that have already been posted to our CureSearch walk page. We have 51 more days to d blow our goal out of the water!! Go Team John!     http://rpx.me/1/-B9o

I realized that I never updated about our weekend. All five of us had great weekends! Jon and I headed to Montgomery to for a wonderful wedding celebration full of good times, great people and a darling couple. Thank you to our friends that let Michael spend the weekend with them. Thank you to Grandma Judy whom kept Jeffrey company and his coaches that hauled him to and from his lacrosse game on Sunday. A third shout out goes to Grandma and Grandpa Prinsen that took John for the entire weekend! He had a great time in Rochester.I think the highlight was riding in Grandpa’s car.

Jeffrey has now fallen asleep on the couch. After I get him to his room I am going to make another attempt at going to sleep. Wish me luck!!

Love, Hope & Blessings,

Shelly

http://rpx.me/1/-B9o  (Click to go to my donation page for the CureSearch Walk for Childhood Cancer to see more information.The CureSearch Walk celebrates and honors children whose lives have been effected by childhood cancer, while raising funds for lifesaving research. You can help us by encouraging your friends, family, co-workers and community to champion our cause.

I stumbled upon the above saying(in orange and yellow) a few months ago and I thought, ” How true this was for me.” Before John’s diagnosis of Stage IV High risk neuroblastoma and the fight for his life, I hadn’t put much thought into childhood cancer. In fact I avoided it…It made me “uncomfortable”. I can’t even believe that I am going to confess to this…but when those terribly depressing St. Jude commercials -with the sad music and those so very sick bald kids came on the TV, I couldn’t turn the channel fast enough. It was just too sad to watch.

Watch it we did…like it or not we were handed a front row seat into the devastating world of childhood cancer. There was never the option of digging my head in the sand. John’s cancer diagnosis was our ugly reality. John became one of those so very sick bald kids and our hearts ached each and every day.

My husband and I will never be the same people we were before John’s diagnosis. We’ve seen too much cancer, lived too much cancer, watched our little boy go through chemo, surgeries, a stem cell transplant, radiation, antiobody thereapy, heard of too many relapses and sadly too many children’s live lost to cancer. How could we be the same?

Today I learned of the passing of a Talia, a brave cancer warrior in the world of Nueroblastoma. You may have seen her on The Ellen show in 2012. The following is information from The Truth 365 Web site:

 In 2012, Talia was stable and we were confident that she would win her battle against this horrific disease. Today Talia’s time on earth came to an end but her legacy continues. We hope and pray that her millions of fans will continue Talia’s fight by being a voice for all children with cancer.

Talia’s dream wasn’t to become famous; her dream was to help find a cure for childhood cancer. The challenges and the solutions are contained in these three questions. Will you please read these and share this post?

Question #1: Why did Talia die?

Answer: Talia died from cancer. Her doctors did the best they could with the resources they had but the disease kept coming back. Eventually the cancer spread to her bones and her brain and it took her life.

Question #2: What do you mean by “with the resources they had”?

Answer: Unlike many adult cancers, there is very little funding for research for childhood cancer. Most of the treatments for childhood cancer were developed 20 years before Talia was even born. Without funding, kids like Talia have very few options. In fact, the National Cancer Institute (our tax dollars) gives less than 4% of its budget to childhood cancer research. Drug companies invest almost nothing because there is no profit potential.

Questions #3: Why doesn’t anyone do anything about this?

Answer: Good question. The problem is that kids with cancer have no voice. They don’t vote and their parents are often too stressed emotionally and financially to compete with lobbyists for federal funding. The bottom line is that more people need to take a stand and say that kids are important and that we need to invest more into childhood cancer research.

For example, HIV/AIDS and breast cancer used to be death sentences but we have made great progress because people took a stand and demanded more funding for research. This is what needs to happen in order for things to change for children with cancer. 

The support of Team John has been amazing and we hate to ask for more from you…but here I am doing it…Please consider giving a donation to my CureSearch Walk donation page (http://rpx.me/1/-B9o)….a cause so near to our hearts. No amount is too small! The Gegen 5 will be participating in the Twin Cities CureSearch Walk on September 7th!

Love, Hope & Blessings,

Shelly

Jon started swim lessons this past Monday. Another huge milestone for our little guy! He was a little nervous, but got right down to the business of being a really good listener and trying to do everything the lifeguards told him. John absolutely loves swim lessons! The skills he had before his diagnosis and year long break from the water quickly came back. He can now doggy paddle and float on his back. The kid loves the water and I now have added an additional nickname….Fins.

Our entire family is so excited about John’s upcoming Make A Wish trip to Hawaii!! July 24th will be here before we know it! We still don’t know anything but our flights for this magnificent trip. Next Friday Make A Wish along with one of their partners, Microsoft, is throwing John a send off party at The Mall of America store. We will be there for 2 hours and during that time we will receive a tour, play games, have dinner and receive the packet of information about our trip. Yay! We can’t wait to learn where we are staying and some of the things we will be doing. We are so grateful for this once in a life time opportunity for John and all of thanks to Make A Wish!

This past Sunday John and I were talking about how many days were left until we leave for our trip. We decided to make a paper chain of the days and he diligently tears one link off each night at bed time. The chain is hung in a high traffic area in our home so is serves as a constant reminder that Hawaii is getting close!!

With Hawaii being so close I am a little panicked about keeping everyone healthy and in one piece. Michael left for his friend’s lake home in Cumberland this morning. When he told me he was going to attempt some back flip on the wakeboard I said, “No broken arms or legs. Hawaii will not be fun with broken bones!”. On the way to drop John off in Rochester for the weekend he commented that he was tired. Of course I had to ask him if he is feeling ok. When Jeffrey called about staying at a friend’s house tonight I told him to be careful. Yes…I am a little paranoid!

All 3 boys were gone tonight so Jon and I took advantage of the situation and headed out for dinner. We went to Bayport BBQ. Jon had come across it while driving to a site for work and thought it looked interesting. We got there a little before 8 and they close at 8. I went in anyways to see what it looked like and they said they would serve us. We were the only two customers in the restaurant! Talk about alone time! We enjoyed our pulled pork and then headed to Afton for ice cream dessert. It was a nice evening out together. Unusually quiet, but nice.

If you read my Caringbridge post yesterday you know I was in a little bit of a funk. Today was better, but John threw me off for a few moments this morning. He was in the shower playing with his superman and his hulk guys while I was at the bathroom counter putting on my make up. “What would you say if I died?”, he shouted over the noise of the shower. I was frozen in stunned silence and he asked me again. I didn’t know what to say…did my perceptive son know what a mess I was yesterday? Had he seen something on TV that would make him ask that question or was he just trying to get a reaction out of me? There are a million better ways I could have dealt with this, but I couldn’t deal today… I just told him I wasn’t having that conversation right now. That really ticked him off. “Just tell me right now!” No..Then the little stinker broke into a song that is played a lot on the radio and he knows most of the words. He knows his dad hates it because he quickly turns it off every time he hears it. It’s called  “When I’m Gone”. John started singing “You’re gonna miss me by my walk, you’re gonna miss me by my talk..oh, you’re gonna miss me when I’m gone” What’s a basket case of a mother to do? I sang along and that was the end of it.

This evening when I was sharing this with Jon he told me John had asked him the other day which one of them was going to die first. Ugh…Where is this coming from? Is it his experiences? Is it normal 6 year old curiosity? We have tried to shield him from sad cancer stories and it’s difficult. There’s so much on TV…Jon and I turn into middle aged, out of shape track athletes hurdling over obstacles in our living room to grab the remote to turn off yet another cancer story that ends in taking a life (I hate cancer!). Of course these actions just draw attention to the stories, but we panic and it doesn’t help that the kid has radar for any cancer stories or cancer words (radiation, tumor…). Can’t say that I blame him!

I’m going to try and feel out a little more where these comments are coming from. Maybe we need to go talk with someone.

The boys are off doing their things this weekend and Jon and I are heading to a friend’s wedding. We’ve had so much good new to celebrate this spring/summer…three weddings, graduations, Miracle of Mitch Weekend, good health, family and friends.

Love, Hope & Blessings,

Shelly