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.