The Gegens continue to keep busy this snowy winter with hockey. Last weekend Mikko was the goalie for his team and he enjoyed it, but not enough to want to do it all the time. Jon and I are good with that!

Jeffrey’s team played in The River Rumble tournament here in Hastings and they ended up being the champions. The last 2 games were awesome!

Michael’s hockey season is over and captain’s practice for lacrosse has already started! Out of nowhere he has taken up snowboarding. I can’t keep up with the kid. Today he told me I really needed to learn how to chill. What’s he talking about?! I’m chill!

That Sunday was full of fun and excitement. After the 2 hockey games we rushed up to Nikelodeon Universe at MOA to participate in the Hematology/Oncology Winter Fun Fest. All five of us went and enjoyed the dinner catered by Crave and still had time for a few rides. Jon and Jeffrey aren’t much for rides but we got them on the Pepsi Crush roller coaster and the log water ride. We also hit a few other rides, but not the ones that Michael wanted to go on. The scarier the better for him.

When we were leaving I heard someone call our name. I turned around and it was the Wolcyn family. We had first met them back in April of 2012 when John was diagnosed with Neuroblastoma and was newly admitted to the 7th floor of Children’s Hospital.The Wolcyn’s 10th month old daughter, Siena had just been diagnosed in March of 2012 with Acute Lymphoblastic Leukemia (ALL). I first met Siena’s dad Ben and big sister, Avery in the playroom. We had many stays at the hospital where we were at the same time. Running into the Wolcyn’s was the favorite part of that busy Sunday for me. To see Sienna…a person would never know how sick she had been. What a beautiful little girl. I loved her feisty spirit too. She was not about to share her ice cream cone with Avery! There is a new Wolcyn baby sister too! She looks just like her big sisters. Visiting with Becky and Ben…seeing how happy they are, how the girls are thriving…learning that Siena is so close to the end of her treatment…priceless! They are an amazing family filled with faith and hope.

This weekend Jeffrey and John went up to Lake of the Woods to go ice fishing. Michael was invited, but being out on the ice for 2 1/2 days in a little ice fishing house without internet, cell phone service, running water, a bucket for a toliet and no electricity….not his idea of fun. There weren’t a lot of fish, but they had a good time.

Michael,John and I were at home. Michael helped with shoveling, snowblowing and working a penalty box at a hockey game with me to get our volunteer points. He then took John home with him so I could work the next 3 games too. It was a long Sunday at the arena! John and I spent time outside playing on Saturday and Monday. On Sunday we went to the Lego movie and we both give it two thumbs up.

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Of course we are enjoying watching the Olympics. John will watch whatever is on and I dare you to try and turn the channel. Today it was the women cross-country gun shooting competition and he said that was great! I think he particularly found pleasure in the one skier face planting at the finish line. Anyways….on Friday I remembered that while John was in the hospital in the summer of 2012, during the summer olympics, Jon and Jeffrey had made a silly video. Jeffrey was up at the hospital for a sleepover and the nurse rolled a chair in for him. When it was unfolded a comment was made that it looked like a bobsled. That’s all it took…I hope you enjoy the footage from 2012. John was recovering from major surgery and like usual…we were doing our best to keep his spirits, and ours, up.

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Hugs for Aunt Kathie!

Love, Hope and Blessings,
Shelly

Yep…it is John’s turn to be the goalie for his team this week. When he first learned this news he cried his big brown eyes out. He didn’t want to be goalie one bit, but everyone has to take their turn. He had from Sunday to Tuesday to get over it and come Tuesday he was ready and eager to go. He liked it! He told his dad that he wasn’t allowed over on the bench on Sunday during his game because at practice dad was yelling suggestions at him (“Come out and get him Johnny!) the entire time!

It was Crazy Hair Day at school today and John was so excited for it. Jon was in charge of getting him ready and he created a style that lasted all day. I love that we can share these days together…even if it is only going into his room for a moment to put him on the spot for a picture. 🙂

John’s January urine tests came back in the normal range…a relief as always. On Saturday morning I learned that when Dr. Rawaas was explaining to John what the consent form meant at his appointment last Thursday …he WAS listening. I had set his DFMO “vitamins” out for him to take and as he was taking them he said, ” I don’t know why someone would give this to their kid if they don’t even know if they work.”. Oh, boy! I attempted to explain and after about 2 words he was out of there!

Michael tells us that he is cleared from the athletic trainer to play in his game tomorrow. I think his season ends next week. Jeffrey’s home hockey tournament starts this weekend, John is looking forward to the start of the olympics, he has a game on Sunday and afterwards we are going to try to get to the Hematology/Oncology’s Winter Fun Fest at Nickelodian Universe. It looks like we will have a fun and busy weekend.

Judy and Sam made it safely to their destination in Arizona and Mom and dad did as well to Lake Havasu. What a perfect time to get out of this terrible cold!

Love, Hope and Blessings,
Shelly

We are so thankful that we were told today that John’s scans are stable! Thank you for all the prayers, love and support that were sent our way!!

This morning our drive to Minneapolis was s-l-o-w! It took us almost 2 1/2 hours to get there! Surprisingly, we were able to get right in to the CT scan….everyone was running late this morning. John had his IV placed and was in the “Donut” (CT scan) before Jon was back from parking the truck! The Ct scan is the easier of his 2 scans because it is only about 10 minutes and I can’t see any of the images.

From the CT scan we were walked directly to the MIBG scan. Here we found one of our favorite technicians. She holds a special place in my heart because she did John’s first initial scan prior to being diagnosed and she was so kind to both of us. (Later today when I was sharing with John how much I like her he said, “Why don’t you marry her then?”). I sent a quick text to Jon to let him know where we were and that we would see him in an hour or so. John jumped up on the table agreed to a warm blanket, got his feet taped together, and got all tucked in. They always start with the head first and they lower the machine as close to his face as possible with out it touching him. He promptly fell asleep and he slept the entire scan! Obviously he had no concerns and was comfortable with the people and process. Behind me his image began to appear on the computer screen. Today I looked and looked and looked again. To my untrained eyes I couldn’t see any bright spots besides his soft tissue areas that are suppose to be bright. Then I started to panic a little bit that I was feeling over confident, I had been casually talking with the technicians….what was I thinking..shut up and quit looking! They had to scan his bladder area twice…they always do and today I didn’t let this bother me. I woke John up when it was done and he had his apple juice and animal crackers snack. Next we were off to the clinic to get labs drawn and his IV removed.

The lobby was busy, busy, busy…everyone that was late for an earlier appointment was there now. We found a few empty seats and did our people watching. Not too long after we were there a mom and dad pulled in a darling little boy in a wagon in to the waiting area. He was about 3 with a shiny bald head.. with a scar up the back of his head and another one on top. My heart ached for that family and it reminded me of John’s little bald head and of all the hurt, physically and emotionally, those shiny heads represent for the child and the entire family. They sat on the couch directly opposite of us. A child life specialist came out and talked with them. I overheard they had just had scans that morning too and they were sharing their agony of scanxiety and the wait. Man…I wanted to go plop myself between them, link one of their arms with mine and wait it out with them. No one gets it like another mom and dad. We talked with John’s nurse, got the IV removed and headed for lunch until his later appointment with Dr. Rawaas.

Before we knew it we were back in the lobby and escorted to a room. This is when I begin my practice of discrete deep breathing to prevent me from wigging out. While I was sitting in the child size chair (No biggy…I spend a lot of my school day in chairs that size) and John and Jon were on the couch reading a book I heard the couple with the little boy from the lobby sharing the good news that his scans were stable. Jon told me I should shut the door. I told him no way…I was listening to every bit of their wonderful news. I really wanted to run out and give all 3 of them a hug…but I thought that would have been a little much.

The nutritionist came in to talk to us as I requested. We didn’t really learn any new ideas for fattening the kid up. He has grown another centimeter since January 2nd! Tall and skinny boy! Next came John’s doctor. You can not read his face for good or bad…he always has the same expression. He is a quiet, gentle man. Now preferably I would like him to come in with a ginormous grin on his face, fists pumping and shouting that John is NED. Then I could breathe. This is not his way or probably the way of most children oncologist for that matter. He sat down and said, “John’s scans are stable.”,. We talked a little, he didn’t mention that previous spot on his lung, but I asked. THe report said it was smaller, but he still is confident that it isn’t disease. I am good with that. 2 counts were elevated slightly… most likely due to John’s cold. I asked questions, he answered..Jon did his best to hang in there. Mikko was oblivious to the seriousness of the conversation.

Towards the end Dr. Rawaas told me he had a new amended consent form for us to sign for the DFMO trial. In looking at it he saw that John now needed to sign as well because he is 7. He explained to John what is was, what he was consenting to and what they hope the DFMO will do (Keep Neuroblastoma away). I started to internally panic a little because we just told John those were vitamins. The gig was up!

On the way home Jeffrey called and I told him John’s scans were good. He said, “They’re always good. Why is Michael’s car in the garage?”. Jeffrey..Not a worry in the world. Love that about that kid! Michael’s car was in the garage because he was home with the stomach flu. He was sleeping when we got home, but as soon as he woke up he came to find me and ask about John’s scans. He wants everything to be ok for John. The big brother in him wants to protect him from cancer. Love that about that kid! In hindsight…I hope the stomach flu really wasn’t worry.

Me? I got home told husband Jon “Goodbye” and beat it down the hall, to my bed and nestled in under my covers for about an hour. I was beat…beat up and drained…as was he, but he had snow to plow!(Thank you for that hour Jon!) I can’t even put into words the mess these 12 weeks scans put me/us into.. there’s nothing we can do about it. Every parent in our position goes through the same mind games and terror. 12 more weeks until the next scans. Living our lives in 12 week increments…fully aware that each day is a gift.

When I tucked John into bed tonight I tried discuss the purpose of the DFMO and scans with him. He wanted nothing to do with that conversation. He said, “Can we just talk about my behavior instead?”. Wow…he really didn’t want to talk about it, so we didn’t and we will when the time is right.

Of course John’s dinner was served on the “CELEBRATE” plate tonight!

I’m not proof reading tonight…sorry for errors!

Love, Hope and Blessings,
Shelly

Safe travels to Judy and Sam and my parents as they head to sunshine and warmth.

 

No news in good news…and it has been quite a while since I’ve posted an entry. Things are as normal as ever here at the Gegen house! Yeah!! We have continued to run like crazy to hockey practices and games, but what a great way to pass the winter!

Cold Outside: Seriously?! Tonight we received the call that school is cancelled  tomorrow due to the extreme cold and blowing snow. This is the 4th cancellation this winter and it’s only January! While the kids are always excited to hear of a Snow Day, I’m wondering when we will start to make days up.

Judy and Sam are heading out of this ice tundra on Tuesday for Arizona and my parents are hoping to leave soon too. They need to find a place to stay first!

Colds Inside: John finally got hit by the crud. Last week was the first time since his diagnosis in April 2012 that he has had a non-cancer, non-treatment illness! I can’t believe he made it that long! I wasn’t surprised because there has been so much illness at school. The week before John was sick I had 4 or more students out of my classroom each day. John woke up last Sunday with a fever, that turned into a runny nose, and that turned into a junky cough. It all hung on throughout the week and finally yesterday he turned the corner…thankfully as John will have scans this Thursday. His cough needs to be gone then so he can be still for the scans.

Ice on a Shoulder: Michael was checked at his hockey game on Thursday and was awkwardly sent into the boards right shoulder first. I missed when it had happened because Michael had just passed the puck and I was following the play, but I heard the collision. When I looked I saw the kids on the bench looking down in front of them, someone opened the door and I watched Michael crawl in. I knew this wasn’t a good sign because in the past I have watched Michael get checked and come up with a bloody nose, with a smile on his face. Just a few games back he had cut his chin on the dasher and there was that smile. So as I watched him rock back and forth in pain on the bench, I knew it wasn’t a smiling matter. He has a separated shoulder and will be out for a while, which makes him REALLY crabby. After all these years of contact sports for Michael and Jeffrey this is the first injury that has taken one of the Gegens out of the game for a while. I think that is a pretty good record.

With the cold weather this morning it would have been easy to stay and bed, but I told John that I was getting every kid up and out and to church this morning.( December’s hockey schedule made it difficult to get to church and we didn’t go last Sunday when John was sick.)  I was determined to start this week with every possible good vibe and faith filled advantage I could get. It’s scan week and we need all the blessings we can possible get a hold of! So off we went to church and then to Perkins for a family breakfast. We were home just a bit before it was time for John’s hockey game and I made both the big brothers go. Michael had just about enough of this family time for the day. He protested, but he went. He said to me, “What’s with all this family time today? Did you watch something on TLC or something?”. Obviously he hasn’t watched TLC because he would know there is no parenting advice there. I do like to watch “Say Yes to the Dress”, ” My 600lb Life” “The Little Couple”…nothing about torturing my kids with family time. 🙂 I told him that after the game we were going to go home and play a board game together if he didn’t knock it off.

No school tomorrow, who knows about Tuesday….Wednesday afternoon I will take John to get his injection for his MIBG scan and Thursday both Jon and I will take John for his CT, MIBG scan and to meet with Dr. Rawaas for results. That’s a day Jon and I have to do together because it’s too tough to do it alone….and it’s too tough to not be there. Praying my little buddy’s cough is gone by Thursday, MIBG is clear again and that the CT scan of his lungs is clear!

Love, Hope and Blessings,

Shelly

Last weekend Jon, Jeffrey, John and I headed to Owatonna for Jeffrey’s hockey tournament. (Michael had a hockey game so he stayed back under the watchful eyes of Uncle Tim.) We had to leave immediately after school to get Jeffrey there in time for his first game. Both Jeffrey and John were gitty with excitement! Jeffrey….of course it was hockey, hockey, hockey! John….yes, hockey, but even more so…staying in a hotel….a hotel with a water park!

Jeffey’s team won their first game on Friday and afterwards we went back to the hotel to hit the water park. John was apprehensive at first, but once Jeffrey took him down the slides just once he was ready to go. I am so thankful to Mason, a super sweet 2nd grade brother of one of Jeffrey’s teammates, that took John under his wing. John had a great time with Mason. Later back in the hotel room John said, ” I made a new friend.” Such simple words that brought tears to my eyes. John has not had many chances outside of school to do such normal kid things with peers his age. Thanks Mason!

Saturday…game on…they lost at the very end. With that loss went the chance to play in the championship game. While we were out in the lobby waiting for Jeffrey after the game John was so ornery! Jon asked me why. Duh? The kid hates to lose! His spirits picked up as we went back to the hotel to rest between games and watch a few movies. Back for game 2 of the day. A win! Now Jeffrey’s team would play for 3rd place. Little guys spirits were great after the win. The team and families hit the Pizza Ranch and then the water park again. John had a lot of fun with Mason once again until his tummy started to bother him…we think from going down the slide backwards so many times.

On Sunday, the kids won the game and we hit the road for Hastings. Later that night we had some of Grandma Judy’s spaghetti and John finally gave the ok for Jeffrey to eat off of the “Celebrate” plate. His team’s third place finish was the ticket!

Monday and Tuesday we were home from school because of the cold weather. I wish I could say that I was super productive, but I was rather a slug bug. John and I stayed in our pajamas and watched movies late into the afternoon on Monday while Jeffrey was stuffed away in his room reading a book he’s had weeks to read.

On Tuesday afternoon Michael, John and I headed to do some shopping for “business attire” clothing for Michael’s Youth in Government thing this Thursday  – Sunday. Of course he had outgrown all the clothes from last year! It wasn’t ideal to take John (“This is sooo boring!” “I’m so hot.” “I’m starving.”), but we got through it with purchased clothes and no one physically hurt. That’s a success in my book. I think I may have said Jon was in charge of this shopping activity for now on.

Back to school for all of us today. Thank you to Judy for coming over and grabbing all those new clothes to take home and iron. Thank you, Thank you!! Church for Jeffrey tonight and then hockey practice. Michael had hockey practice, a team dinner, a haircut (Hallelujah!I owe that one to the YIG  – Youth in Government.), had to meet friends to do a group snack shopping trip, and then to Target for yet another tie.

Why am I up right now at 12:44? Yesterday I had asked Michael to bring up anything he wanted washed. Nothing… Tonight at 9 I asked him if he needed me to wash anything. No response.     11:00, “Mom I don’t have any white t-shirts.” It spiraled from a load of whites to a load of darks. So here I sit waiting to fold.

A flurry of activity these past few days, but just plain ordinary life. Are we blessed or what?!

I know how very blessed we are and a day doesn’t go by that I don’t remind myself of this. Our life could be so different, but for some reason here we are right now and I will take every moment of it. Cancer and cancer treatment isn’t dictating every aspect of our lives, it’s still a huge part and will be forever, but it’s not “choking” us anymore…maybe still “pinching” with worry. I am allowing myself to breathe a little easier, but I don’t want to let my guard down. Who am I kidding? I can’t let my guard down.

I am off to fold big kid’s clothes!

Love, Hope and Blessings,

Shelly

I forgot to mention that Jon and John went to his doctor appointments last Thursday in Minneapolis. John tested out of Occupational therapy and all his blood counts came back in the normal range. We are waiting on the urine test results, but I’m confident those are great too. My only current concern, other than the constant big concern I always have, is John’s thinning, thinning hair. I just better be getting over that ASAP! Scans are the last week in January.

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I have loved every minute of this Christmas. It is such a blessing to be immersed in family and friends with with my heart full of gratitude and this feeling of “peace” that I haven’t felt in so long. Our Christmas could not have been any more perfect.  We were able to celebrate with all of our families with 3 happy and healthy boys of our own. There is not any gift that can top that!

When we weren’t celebrating Christmas, we were running to Michael’s hockey games and getting together with friends. It feels as though we had something going on every day. The boys even got some outdoor skating in before the weather turned so frigid!

Today all 3 boys went to a movie with me. We saw The Secret Life of Walter Mitty. I think the 2 older ones went for me and that’s ok. It made my day to do this with all of them. It has been years since we’ve all gone to a movie. The boys all agreed it was ok as far as movies go. I know Michael and Jeffrey enjoy more action packed story lines and Mikko was confused at times with all Walter’s day dreaming. It is a challenge to find a movie all 3 boys can see and enjoy, but I loved my time with the kids.

This afternoon I got my Christmas cards in the mail, except for a few that I need to find the address for. Tonight I made chocolate chip cookies and chocolate Rolo cookies. Jon is in shock because in the last month I’ve baked twice for the first time in almost 2 years. I didn’t even get after any of the guys when the first dozen were done and eaten in about 5 minutes. I’m sure they feel they better get their full because who knows when they will see baked goods again from me!

A friend of mine had talked with me recently about the tradition that their family has with a special plate. This reminded me that a student had given me a Pampered Chef plate that says, “Celebrate” and I thought we should start a tradition as well. A few weeks ago we had received Jeffrey’s report card and it was an awesome one!  Without embarrassing Jeffrey…..this is reason to celebrate! When I was reading the Hastings paper last night I saw Jeffrey’s name in it for being on the 8th grade “A” honor roll and I brought up the plate to him. I told him he could eat his dinner off of it tonight and he liked the sound of that. Someone that didn’t like the sound of it….John! He demanded to see the plate. So off we went to the kitchen to locate it and as soon as I handed it to him….he securely tucked it under his arm and he was not giving it up. “I’m eating off of this plate. After this last year….I get the plate!”, he said with all seriousness. Jon said something like, “How do you argue that?”, which sent Jeffrey off into the , “John always gets what he wants” rant.. all the while the plate is still tucked under John’s arm. Yes….the stinker ate off of the plate tonight and I told him Jeffrey gets it tomorrow. Then tonight, I reminded him that tomorrow he will be getting 5 immunization shots and I was prepared for him to express apprehension. John’s immediate response, ” 5 shots, I get the plate.” He’ll get the plate. Just to add a little more chaos to the situation, Michael started telling John he deserved the plate. I may need to buy 2 more!

The other night when I tucked John into bed we were talking about New Year’s Eve. I told him that I am so excited for 2014! I’m so excited for it to be a happy and healthy year. Without going into specific details, my little guy knew just what I meant.

John is in such a wonderful place health wise and “today” is so good. I don’t know how tomorrow, next week, or next month will be, but  I am doing my best to enjoy the “right now”. I pray every day for all the other children and their families that are fighting this ugly beast…childhood cancer. I hate it so. I know that even with all John has endured we are blessed and I pray, pray, pray… the worst is behind him and that his story can bring inspiration and hope to the children and parents that need it most.

 

Tomorrow John will go for those 5 shots. I think it is several months before he will go again – working on getting all the immunizations caught up that were wiped clean during the stem cell transplant process.

Thursday afternoon Jon will take him for his monthly blood draw, urine test, and to see Dr. Rawaas. John will also have an occupational therapy evaluation that day as well. The OT therapy while in patient was his least favorite activity and he gave the nice gal a run for her money every time. I hope she sees a different kid on Thursday!

During the last week of January are when the next scans are scheduled. Enough said about that!

I was thinking about what my New Year’s resolution should be. It’s not that it’s difficult to think of one…it’s which one?!

*Eat less junk

*Exercise more …..more then never

*Drink less pop

*Drink more water

*and on and on and on

So in my long mental list I was making I have chosen….. sleep. Yes…sleep. Obviously I ‘m not starting tonight as it is 1:32 am right now, but on January 1, 2014 it becomes my goal. I am worried about this goal as sleep has not come easy for me in a long time. My hope is if I can get a healthy amount of sleep each night, that it will run over into all the other possible New Year resolutions I could have made. Wish me luck!

Wishing all of you a Happy, Happy 2014! CELEBRATE!!

Love, Hope and Blessings,

Shelly

 

Life has been crazy busy with school, hockey, holiday gatherings, and lots of Christmas preparations! This past week the kids all had games. We were at the rink, Tuesday, Wednesday, Thursday, Friday, Saturday and Sunday! That’s a lot of hockey!! I was able to squeeze in fun and merriment with neighbors, friends, and fellow hockey parents on Thursday, Friday and Saturday! The last week of school before the break is always full of extra excitement.  Just typing all of this makes me exhausted!

I even managed to squeeze in some baking this year and of course the kids have eaten every last cookie and almond bark pretzel. I even hid some in the freezer and they didn’t even last a day! Linda, who happens to make delicious cookies, gave me a platter of delicious treats and Michael got into those as well…but my scream when I saw him munching them scared him away!

We have been enjoying the bliss of everyday life. That doesn’t mean everything is rainbow, glitter and butterflies. 🙂 We experience time outs, attitudes and the occasional grief all parents have the privilege of encountering.Even with those moments….we are all in such an awesome place….healthy and together!

We are living with a 7 year old bursting with Christmas spirit! He’s decorated, sprinkled, and glued to his heart’s content all for the love of everything Christmas. I so wish I was able to tape our conversation when he was setting up the Nativity set. Like always he was full of questions and he demanded quality answers!

A new family tradition this year is our elf on the shelf. This is a little elf that watches over the kids during the day, reports to Santa at night and shows up in a new place in our home to continue his “watch”. Mikko absolutely loves looking for the elf each morning. The past few mornings Mikko has found the elf caused a little trouble during the evening (Thanks to ideas on the internet.). One morning our elf was found in the bathroom sink taking a bath in marshmallows and the next night the marshmallows were strewn all over the bathroom in the elf’s haste to get to our Christmas tree to toilet paper it! Last night….caused giggles this morning. The elf had replaced the boys Christmas stockings with their underwear! I was planning on giving the boys rudolph noses in their sleep tonight with a red washable marker,but then thought better of it. I wasn’t too worried about Mikko and Jeffrey, but I thought Michael could possibly pay me back, even though I think going to hockey practice tomorrow with a red nose would be cute. 🙂 Tomorrow night the elf will leave until next December.

I can’t tell you how much I am looking forward to Christmas with our families this year. Last year Mikko was feeling crummy from his antibody treatment and he stayed home with me while Jon took Michael and Jeffrey to his parents’ homes and we weren’t able to go to Rochester last year either. As a family unit we are in such a different place. Yay!

I love reading family Christmas letters, but I’ve never been one to write them. (Heck, the Christmas cards I ordered haven’t even arrived at our home yet!) However, when I look back on our past year (My parents had John’s Caring Bridge journal entries bound for us and it totaled 4 books. I spent a lot of time reading through 2 of them on Sunday.) ,it is impossible to not be reflective and count my blessings. Yes, it was heartbreaking  difficult at times, but it was also stuffed full of so much love, support, amazing opportunities, and the kindness and generosity of an endless number of people. Jon and I are eternally grateful for each and every one of you and we wish you a Christmas filled with faith, family and friends!

Love, Hope, & Blessings,

Shelly

Below is a temporary Christmas card until I get ours in the mail.  Enjoy!:)

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I had to cut this entry short because my husband just woke up and found me awake in the living room! Sleep….that is going to be my New Year’s resolution!

On Tuesday evening John had the fabulously fun opportunity to go to the North Pole for the evening! This night was made possible by Make A Wish and Sun Country Airlines. Make A Wish children were invited to Terminal 2 to board a Sun Country jet for the North pole. When we got to the airport we went through security and headed upstairs to Gate 5 to wait for John’s boarding time. While waiting there were games to play, mascots to meet and plenty of space to run around. Make A Wish and Sun Country people were decked out in holiday gear.

As I watched John play and enjoy himself, I looked around at all the other families…each one with their own heroes, their own stories. Tonight, however, they were all just kids filled with mountains full of excitement.

Yes, John was very excited and also apprehensive. He thought from the very beginning that going to the North Pole would be great, but he wasn’t going without me. I had explained over and over that parents didn’t go with. That this was kind of like the Polar Express, but on a plane. He didn’t care.Yesterday morning he told me he wasn’t going. When I saw John at lunch I asked him if he was thinking about the North Pole. His response, “I’m thinking you’re going with me.” When I got home from school he told me he wasn’t going. I really had no idea how he was going to be once we got there. It all went very well. I only had to give him one little shove to get on the plane. 🙂

This is my take on what happened. The kids got on the plane and they sang Christmas songs and enjoyed a chicken strip meal. Then they taxied on the runway for a little bit. The plane portion of the evening was about 40 minutes. John and I took this opportunity to have a beverage and nachos while John was at the North Pole. When John got off the plane he told me that they didn’t go to the North Pole, but it was still fun. He figured this out for a few reasons. 1. The same Mrs. Claus that was waving in the airport windows was waving at the North Pole. 2. John told me the plane never took off. 🙂

When the kids got back to Gate 5 Santa was there and of course the battery on my camera was dead then and I wasn’t quick enough with my phone camera. Thankfully a photographer was there taking pictures and I will be able to download a picture this weekend.John sat on Santa’s lap and got a gift bag of goodies. He was one happy boy!

It was a great evening and we are very thankful to yet another memory making night. Thank you Sun Country and Make a Wish!

Love, Hope & Blessings,

Shelly

If I had the opportunity to sit on Santa’s lap I would have shared my wish…. a hair cut for Michael!

John and I busted out of school at noon today to get to his 1:00 physical therapy appointment in Minneapolis. We got there on time and he passed with flying colors today. We were given a few more exercises to continue at home and we were given the clear for 6 months! When we notice John going through a growth spurt we are supposed to hit the stretches extra hard…other than that we are to continue what we have been doing..even if it includes jumping off of couches!

Next we headed downstairs for his blood labs to be drawn. Once again there was a little confusion over what was needed as this is a new study for Children’s. We waited patiently while calls were made and things were straightened out. John and I came armed with his first morning pee (Little did anyone at work know I had pee in my school bag ,tucked away safely in a sealed Ziplock, chilling on an ice pack….It would have frozen in the truck!) and there is always a little confusion with that as well. We come with pee, they want additional pee, John was going to pee his pants while we were waiting for the blood instructions and the lab gal to come back. We needed that cup! All ended well and dry.

By the time the lab commotion was all worked out we were 1/2 hour late for our appointment with Dr. Rawwas. Once again he spent a lot time with us…examining John, talking with him, talking with me. While I was talking with Dr. Rawwas John was on the examining table attempting to tie his shoes and being very vocal about his disgust in the lack of progress he was making. He basically was grumbling to himself the entire time…ticked off.

During this shoe tying trouble I asked Dr. Rawwas about John’s last CT scan of his lungs and that spot. Like Dr. Chu, he is not concerned. On one scan there is nothing to see in that spot and on another scan you see it. He explained that on the one you can see it, is a type of scan where several pictures are “stacked” on top of one another and it may very well be that nothing is actually there. (The angry shoe tying kid, that hears everything …even when you think he’s not listening…threw in a couple of , “Is that bad?” questions during our lung discussion. We both reassured him that it is GOOD! We also talked about scheduling the next set of scans for the last week in January. By the time we were done visiting John had learned to tie his shoes and they were in double knots!

We also discussed the thinning hair issue and a note will be made of it in John’s chart. I decided that I will also call my contact at Helen DeVos Children’s Hospital in Michigan and see what she says.

John and I busted out of the clinic to hit the road to get back to Hastings for Michael’s 5:15 hockey game. We missed the first period, but got to see the rest. The JV Raiders were up 4 to 1 and then lost it all in the 3rd period. John and I headed home after the game and I was able to squeeze in a little of The Sound of Music before he realized what we were watching and turned the Wild on. They won!

It was an action packed day, but a good one. I do feel a little crummy tonight.

Friday marks the end of Cycle 4 and Saturday is the first day of Cycle 5. 4 down…..20 more to go!

Love, Hope & Blessings,

Shelly

John has been waiting not so patiently to get our Christmas tree decorated. When I called home after school he asked me if we could get some balls on the tree tonight. I promised we could get to it after dinner. When I was changing out of my work clothes I realized that today is the 1 year anniversary of John’s last radiation treatment. When I shared this news with John he seemed genuinely proud and ran to tell his dad. What a perfect way to celebrate! John loves Christmas (He has mentioned a few times lately that he was sick last Christmas.)! He had a bounce in his step…actually dance moves… as he hung ornaments. We had the Rockefeller Center Tree lighting show on the TV and John would take dance breaks during his tree trimming. I have to admit I had a plan for the tree. ..First hang …., then…  I quickly learned my son was in charge and he had a plan and it didn’t include me! He went and got the step stool and my job was to put the hooks on the bulbs and to stay out of the way. The first ornament up was surprising to me. It was the one he had made last Christmas of his school picture with his little bald head. That was one of the two ornaments I was allowed to hang and only because he couldn’t reach. John wanted that ornament at the top of the tree near the star.

At first it became clear John was going to put every ornament on the tree he could get his hands on, I had the plan of “redoing” the tree after he went to bed. As I watched him singing, dancing, and decorating I knew I had to leave it. It doesn’t matter that our tree doesn’t look perfect to someone visiting our house…John loved every minute of this evening and our tree is perfectly perfect for us!

We have been busy with a lot of fun activities. Thanksgiving was the first time in almost 2 years that all five of us have been at my parents house. We had a delicious meal together and later in the afternoon Jon headed towards SW Minnesota for a few days hunting with Jeffrey and Michael. John and I stayed over at Grandma and Grandpa’s house. I got some shopping in and John and I headed back to Hastings on Friday afternoon. Jon and the boys weren’t far behind us as they cut their trip short. They weren’t seeing much and snow would have been nice. Jon would have liked to take the boys at a later date, but this was the only Saturday without a hockey game until March. Yes, March!

John and I had made plans to got to the Shrine Circus on Saturday  thanks to Hope Kids. We had a fabulous afternoon together and John loved the circus. The guy being shot out of the cannon and the motorcycle riders were his favorite activity.

On Sunday John had hockey and he scored his first goals of the season! (

The Gegen guys hockey 2013)

On Monday, Make A Wish sent us to the WIld game! We were in a suite sponsored by Heatly and Cooke…all the hot dogs, mac and cheese, chips and dips, popcorn and pop our tummy’s desired. We were with another  Make A Wish family and we had a blast!

A few weeks ago Michael and John had the opportunity to meet 2 Minnesota Vikings Cheerleaders. They both got a calendar and John was upset it didn’t have the game schedule or the players pictures. Uncle Tim and Jon thought the calendars were great!

As you can see we’ve had amazing opportunities and many care free days and lots of quality family time. I count my blessings every day!

Tomorrow John and I will head to Minneapolis in the afternoon for a physical therapy appointment and to see Dr. Rawwas for the monthly blood labs and urine tests. It will give me the chance to talk to Dr. Rawwas  about John’s thinning hair, his November scans and his scans coming up again at the end of January. I am planning for this visit to go well.  🙂

It is time for me to get to bed…no proof reading tonight!

Love, Hope & Blessings,

Shelly