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On Monday March 17th we took the Amtrak train, Empire Builder to Chicago! We got a late start as the train was running 3 hours late, but thankfully we knew this ahead of time so we weren’t sitting in the little terminal in Red Wing that entire time. This was the first train ride for all of us. The train pulled up, we walked out and on we went. The fact that there wasn’t any security seemed odd to me and the fact that there is no checking your luggage ..a little concerning, but we all got there with all of our bags. The kids passed the time on the train with their electronics (of course), eating snacks, and playing a few card games.

We were in Chicago from Monday to Friday. Tuesday morning we hit the ground running and kept that pace through all of the days. We visited many museums, ate too much awesome food and had a great time. We would leave our hotel in the morning and return after dinner each evening. The boys were awesome and easy to travel with. They all got a little too comfortable with hailing a taxi cab (John called it “hawking a cab”…so that’s what we called it the rest of the trip.). We walked as much as possible, but at the end of our days John was tired and wanted to “Hawk a cab”. 🙂

The Art Institute of Chicago: Michael was on a mission to find all the art work that was in the movie Ferris Bueller’s Day off. We would have been better off leaving Jeffrey, Jon and John at home. Their feet and legs started to hurt 5 minutes into visiting this museum!

The Shedd Museum: We all loved this and had spectacular views of Lake Michigan. Michael wasn’t pleased that I purchased tickets to the dolphin show as I was told it conflicted with his morals (This is new after watching a documentary about whales in captivity on Netflix….). He suffered through it. We enjoyed our first 4D movie experience at the Shedd Museum. It was a short movie called Sea Monsters. Four of us laughed most of the time and one little spectator was scared to death! We were wondering what makes an experience 4d. We quickly learned it is the air and water that hits you from the chair in front of you and the pokes you get in the back from your own chair.

The Field Museum: A favorite for all five of us! So many amazing exhibits. We could have spent the entire day here. Sue the T-Rex is here.

Adler Planetarium: This was another Michael request, but we all enjoyed this one.

The Museum of Science and Industry: We were running out of time so I took John and we did our thing and Jon took the big guys and did there thing. We would have loved to go in the U-505 Submarine, but all the tickets were sold out! Bummer…. That is on our list to do the next time we get to visit Chicago.

The Sky Deck: 103 floors up! One Gegen kept his back to the wall and was ornery during this experience. His children were heckling him and doing their best to get him to come on the platform….but nope….he wasn’t doing it. He tried his best to take a picture of the boys and me….they didn’t turn out. I think he just went “click” without looking and ran to position himself back on the wall.

At one point on our trip John said to me, “What were we doing last spring break mom?”. I told him we were in the hospital for his 4th antibody treatment. Of course he knew this when he asked me. We both agreed that this was a much better way to spend spring break!

We were all a little sad to leave Chicago. There were more things we wanted to do and see, but we packed up and headed to the station. The train was full on the way home, but John and I did manage to find a few chairs in the observation car. We played crazy eights for a long time and then he wanted to to the “Chat Pack” cards that I brought along. They are cards with conversation starters on them. John had watched how I did this with Jeffrey and Michael on the way to Chicago (Much to their horror) and he wanted me to do it with him. So we did and he took each question very seriously. So there we sat. I read the question and he would give his answer. Here are a few that he answered.

In your opinion what is the most beautiful man-made object in the world? Our hotel in Hawaii.

If you could hear a speech from a leading figure in any field, whom would you choose to hear? Martin Luther King

Describe your dream home:( He went on and on until I realized he was describing the home he’s building in his Mindcraft game.)

If you could walk into any painting which painting would you choose to enter: The one with the naked people (This is in reference to one of the many paintings he saw with naked people in it at the Art Institute.)

And then we ended with this last question. What is the greatest lesson in life you have ever learned? Without missing a beat he tapped his finger on his chin and said, “This has to do with the hospital.” (He then paused a moment and continued on)”Don’t be scared. You never have to be scared.”  With that response it was game over for this mom. I hugged him the best I could and told him what a special boy he is.

Yes we had a wonderful vacation, but right there, in that moment I was reminded by my beautiful boy that what is truly wonderful..we were all together. All 5 of us…happy…healthy…living for today and not fearing tomorrow (Jon and I have fear…but this past week it barely reared its ugly head. This is progress!). A year ago our lives were so different. 2 years ago…it was all just starting, we just didn’t know it. And today….today is a gift, a blessing.

Enough for tonight! I hope to update later this week with the events of John losing his first tooth in Chicago! He was determined to lose it there and he did with help from his big brother Michael. More on that later.

Love, Hope and Blessings,

Shelly

Urine results: There aren’t any…I had been checking, checking, checking online since John’s last appointment at Children’s for the results of his urine tests…Nada. I finally called this week and our nurse was very apologetic as the orders were made, but the lab didn’t do them. I was ok since I knew urine did get sent to Michigan as required by the study and before you know it we’ll be back at Children’s at the end of March for John’s next visit. I did share with here my frustration and understanding (being this is a new clinical trial) that no one in the lab seems to know what to draw each time we come and what to do with the pee (Of course I tell them!). Jon told me one time he didn’t even want to hand the pee over to the lab tech because he was worried it wasn’t going to end up where it needed to be.

It was a rough day to be “Shelly Gegen – Mom”. UGH! It started first thing this morning with Jeffrey. He started laying the ground work last night that he was “sick”. (And not fakeritious sick like Michael can be. Really sick with a sore throat and trouble breathing….so says Jeffrey. The breathing is already thrown in there for good measure.) Alarm went off. I went in. I’m told he’s sick…throat…breathing. If I send him to school he makes his eyes as sad and droopy as he can (And he can make them droopy!) and before you know it the school nurse calls me. Jeffrey stayed home.

I then walked into John’s room, rubbed his back and asked him how he was and he smiled at me so sweet. I then told him there was a change in plans. He wouldn’t be going with me to school, but his dad was going to get him ready. There’s no other way to say it, but the shit hit the fan. He was enraged! Never ever is he like this….bawling…screaming… tearing his bed apart….chucking things around and not just for a little bit. I have no idea why this was going on. Was it the unexpected change in his schedule? I always go over what the next day is going to look like at bed time. (You’re having home/school lunch. You’re going with mom/dad You are riding the bus home.). I told Jon he was going nuts! Sick Jeffrey had to come out of his bedroom to see what all the commotion was about. It was ugly and sad because it was so uncharacteristic of him! He had a lot of words for us as well. I think staying up to watch the Wild/Rangers hockey game had been a BAD idea!

Thankfully I got out of the house and to school. When John arrived he was all smiles and he was testing my temperament towards him throughout the day. I would get a poke in the side when he would see me in the hall. I knew he was feeling remorseful because he usually ignores me at school!

When I got home from work he was busy, busy, busy picking up everything that had been tossed, making his bed and organizing his room…all on his own. He knew he was wrong this morning. So sweet.

Then 5 minutes later “it” hit the fan again! Jeffrey and Jon..short story they both got sent to their penalty boxes (bedrooms). Little one knowing he better zip his lips. Medium one flapping his. UGH!

Two of them are mad at me. Let’s make it 3!

When you are pregnant and expecting a baby you read, read, read everything you can get your hands on so you can take care of that new life. I read and reread What to Expect When you are Expecting, THe Mayo Clinic Book of Childbirth and the First Year, From Birth to Age 5. Jon would tease me and say, “What does the book say?”. That baby arrives and there was a time when just the sight of me would light up his eyes and put a smile on his face. The sight of me at daycare would send him running with open arms to greet me with a hug. Then before you know it, that baby is a teenager and he’s not so excited by you anymore.

Shelly? Shouldn’t you have read some books? Read some articles? Researched who the heck you would be living with?! I just want my teenagers to know I love you guys more than anything. There are times when I need to say no and you’re not going to like it. If my mama senses are telling me no, it’s no. I can live with you being mad at me, disliking me, even hating me for a little while. I know you’ll come around. No is my job, my responsibility. I don’t care if I’m the meanest, strictest mom with the shortest leash or if everyone else is doing it. It’s not my job to be your friend, although I look forward to when our relationships can switch to that gear when you are grown men. My job with your dad, it to raise all of you the best we can to be kind, caring, grace filled men that are ready to make a positive impact on world. I know that last sentence is laugh worthy from you guys. I just want what’s best for you. Oh and….I make mistakes too. This is all new for me, but you can know that no matter the conversation, disagreement or argument….I’ll always love you.

Yep…all 3 tonight were less than thrilled with me. Rough start to our spring break for this mom!

It should be looking up soon. Jeffrey has a hockey game tomorrow morning and if they win, they play for the championship on Sunday. Then his hockey season is over and he’s on to Box Lacrosse.

We have a spring break planned to Chicago via Amtrack train. More on that later.

Happy Weekend!

Love, Hope and Blessings,
Shelly

PS Jeffrey made a miraculous recovery!

PS PS The good news..I didn’t eat my way through the stress…probably because I was too exhausted to get my butt up off the couch. 🙂

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This weekend marked the end of the regular hockey season for John. He couldn’t have been any more thrilled with the fact that he got to go to the arena twice on Saturday for games and then again on Sunday for games and the medal ceremony. He loved every minute of it! I realized this weekend that when it comes to hockey he has the characteristics of both his brothers. When he’s nervous and excited about something, he gets ornery like his oldest brother Michael is known for. There were few nice words from John before getting on the ice. Just get him ready and get out of the way. After the game he has the skill of embellishing the facts just a tad about goals scored and games won….maybe just a little like that other brother did years ago. It was a weekend all about John and his hockey. Perfect in his big brown eyes.

On Saturday as I watched him on the ice the thought didn’t escape me that it was two years ago when he was skating his last game of that season, he had cancer….we just didn’t know it yet. He was almost 5 1/2. On that Sunday I had done the bad mom thing by letting him skate even though he had a low grade fever…because I didn’t want him to miss out on the medal ceremony. That next day we took him to the doctor and he was diagnosed with strep and from there it would take about a month until we learned the real truth…the nightmare we were thrust into.

2 years…wow. It doesn’t seem that it has been that long ago. 2 years! All John has been through, how we’ve all changed, where we are today… Watching him on the ice this past Saturday filled my heart with warmth. John is our miracle…our gift.

Almost 2 years since diagnosis…almost 9 months since the end of frontline treatment. I’m trying…Jon and I are trying not to live our life in fear of relapse. Jon is better than me at this or better about not verbalizing his fears and calming mine. We seem to click along and then the fear grips us so tightly it seems impossible to function.

This past Monday John mentioned that his legs hurt. Anytime I hear a comment like that from him it sends my mind racing, but I can’t let him see that. I did my best to reassure him, tucked him into bed and prayed that was the last I heard of the leg pain (leg pain was one of his most prominent symptoms at diagnosis). I was up late that evening going over my conference folders for the next evening and John stumbled out of bed a little before 1 in the morning crying, crying crying. His legs hurt. I tucked him in, gave him some tylenol and rubbed his legs. When he fell asleep I went to see Jon who was wide awake. I can’t even explain the fear…the feeling that we were about to be thrust back into our old life of cancer treatment and hospitals. There was very little sleep for either of us that night.

I shared my concerns with a few friends and ignored the strong suggestions from one that I call the doctor. John had an appointment already scheduled for Friday. We would wait. Another comment about leg pain was made on Tuesday after hockey. I walked around with a nauseated stomach all week.

Thank goodness it was a busy week with conferences on two evenings. Thank goodness I work! If my mind had anymore time to think about the “what ifs”…it’d be ugly. I have the best support system at work and I am blessed in so many ways there.

Finally Friday came and it was time for the appointment. Both Jon and I go because neither of us want to go alone EVER. Each appointment carries the possibility of being the one that changes everything.

The appointment was a huge relief! John is great. His appointment was great. His counts were great (I haven’t gotten the urine results yet, but I am confident they will be as well.). He had grown almost a centimeter in 1 month! Growing pains…the doctor was confident that John’s pains were growing pains! What a relief! I was asked why I didn’t call in with my concern (My dear friend was right in BOSSING me to call.). I had told her it was because we had this appointment scheduled. Really….it was because I wanted to live 3 or 4 more days without cancer. I shared with John’s doctor that I was a basket case all week. She reminded me that we are not that far out of treatment and not to be so hard on myself…that those fear will ease over time. I find that hard to believe, but I hope she’s right. It is exhausting to worry.

During John’s appointment Jeanine, his Child Life Specialist, stopped by to drop off a very special gift. It was two framed photos of John with Mikko Koivu from the WIld about Children event from last March. Super cool! It worked out perfectly because Jeanine was able to take John for a while so we could talk about our concerns with the doctor. Dr. Chu couldn’t get over how great John looked. Skinny, but great.

The big guys are doing well. Michael is in between hockey and lacrosse and home a lot more often. For him I have went from Mom to “Shellster”, unless he wants something it is a demanding “MOM”! I think I will start ignoring him when he calls me Shellster. Who calls their mom that?

Jeffey’s hockey season is still going and will end the weekend of March 15/16. His team is doing really well. I believe they are 30 and 2 or something like that. Tomorrow Keith Ballard from the WILD is coming to skate at his team’s practice. I believe the opportunity was won in a contest. I know Jeffrey is really looking forward to it.

On Sunday evening our family all sat in the same room and watched an entire movie together. It was Gravity..a few scary parts for John and Jeffrey, but we all liked it (Although I did have to remind my husband several times that the movie is fiction…so quit saying, “That couldn’t happen”!). I seriously can not remember the last time we all watched a movie together.

Wow…I got wordy again (Imagine that!) I am going to include some winter pictures for our parents that are sitting in the Arizona sunshine.

Love, Hope and Blessings,
Shelly

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