Summer FUN!

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

Love, Hope and Blessings,

Shelly

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

ALL CLEAR!

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

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

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

He "looks" like trouble!

He “looks” like trouble!

Did you really hear the beep?

Did you really hear the beep?

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

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

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

Star Studio Rocks!

Star Studio Rocks!

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

(12 weeks until the next set of scans)

Love, Hope and Blessings,

Shelly and the guys

CMS (Crazy Mom Syndrome)

My days are spent basking in awe of the normalcy our life seems to be rolling with lately. Lacrosse practices and games, hockey camp, Michael’s work schedule and neighborhood fun….LOTS of neighborhood fun for John! Friends ringing our doorbell and off he is playing in the neighborhood. He’s over at Brady’s playing baseball, soccer (Of course soccer…it is summer 2014 after all!) or swimming in the pool. You may also find Brady and John over at Thomas’s house playing kickball….running around being a kid. A kid without a worry…. a footloose and fancy free kid of the summer. Jon will ask me where John is and I’ll reply, “He’s playing somewhere outside…isn’t that great?!” Yes, yes it is, for the past 2 summers John has basically been in arms grasps of us at every moment. So he is loving this new freedom and we are doing our best to let him experience it.

We have been to my parent’s cabin a few times this summer and we’ve had a blast there! Fishing seems to be our new pastime (Maybe not so much for Michael. :)) and Michael and Jeffrey have enjoyed tubing and knee boarding. John has turned into quite the fisherman! His stamina for staying the course is amazing! The kid loves to fish! Fishing could be a quiet reflective experience, but with John in the boat,it’s not. He talks non-stop….for the entire time! He is usually a happy fisherman….until he starts to get out-fished…then watch out! Last summer he enjoyed swimming in the lake, but this summer he won’t even consider putting a toe in the water. He hasn’t said why, but I am pretty sure it has something to do with the northern and muskie that Jeffrey caught during our first weekend at the cabin.

We are in a good “place”. I am in a good place right now….but at the end of the school year/beginning of the summer I was struggling…REALLY struggling…more so than I have in a long time. I was drowning in doubt and worry. The doubt was over our decision to place John on the DFMO trial. Had we done the right thing? The worry? The forever nagging worry over relapse…all consuming worry. I was a basket case….worry. I was suffering from CMS, Crazy Mom Syndrome. (I saw this in a mom’s post on FB and CMS is exactly what a lot of us cancer moms deal with on a daily basis.)

I watch John….like a hawk (The poor kid!).Neuroblastoma can pop up anywhere…..my eyes….like a hawk. Do you know that horrible feeling you get when you see something devastating? It may be someone getting hurt, a car accident….something major. While in that moment your body is overcome with such an awful sensation…a feeling that I can’t fully explain. A feeling that can turn me into a total irrational , “Shit, that’s a sign of relapse”….crazed mom. That was me (probably still is me..). That feeling, my fears over shadowed EVERYTHING.  Here is the series of events:

1.Red swollen cheecks – 2 weeks before school is out – after being out in the sun, John looked like a chipmunk. Was this a side effect of the DFMO? First his hair and now he was going to look like a chipmunk all summer? What else was DFMO doing that I didn’t know? I sent an email off to our lovely nurse and Dr. Walrus called me back. He listened. The man has the gift of listening. He listened as I babbled all my concerns about the DFMO. At the end of our conversation Dr. Walrus told me that he would support whatever our decision was.. to continue or to stop.  We hung up and I almost immediately called him back with a few more questions.

2. Bike Rides - what a great way to get John some exercise, to stretch those legs. Hockey was the best exercise for keeping those calf muscles that have been tightened from chemo loose, but it had been months since hockey. Bike rides were a disaster! John hated them. His legs hurt (What?! Legs hurt! I got that sickening feeling…leg pain). Well…he must be tight. The kid needs to work those muscles.

3. Physical Therapy stretches – I’ll admit it…we were bad about continuing John’s stretches for his legs this spring. He was running around, being active…his legs must be fine right…no…so we hit the stretches and activities HARD we had learned at physical therapy. This was the last weekend, before the last week of school. Sunday evening John could barely walk. (There was that horrible sinking feeling once again.) Another email was sent to our nurse Cindy. She passed it on to Dr. Walrus. We worked John too hard…his muscles were sore. I was told to relax and enjoy the end of school.

4. Pink Eye – School ended on a Thursday, Friday night John has was appears to be pink eye. I take him into the clinic on Saturday with just the eye issue…no fever. We get drops. That night John breaks out in hives and has a fever (There’s that feeling..). The hives send me into a panic. I don’t even bother calling the regular clinic. I was doing my best to treat John like a regular kid, with regular childhood illnesses, but the hives threw me over the edge (because I am no longer able to think rationally…CMS). I called the oncology clinic hotline because it is after hours and who do I get? Dr. Chu! Yay! She listened, told me to relax, give John some Benadryl….normal kid stuff. The Benadryl helped, but John was still running a fever.

5. Strep – Through that first weekend of summer break John continued to run a fever and then his throat was hurting. I took him to a pediatrician and yes, he had strep (There’s that feeling again! Strep?! Strep is what John had pre diagnosis back in February/March 2012. Strep is what started all of “THIS”!)

We went on our salmon fishing trip the following weekend and while we had a great time, John wasn’t quite himself. He wasn’t interested in eating and had diarrhea  (There’s that feeling.) and was not his active self (and…there it is again).

(Now while I had been having all of those “feelings”, I continued to stuff them down…deep down. I didn’t want to upset my husband and they were just too hard to say out loud. What if those feelings were right?)

I sent yet another email to John’s nurse.

6. Scheduled Dr. Apt at Children’s - This appointment just happened to be on the last day of John’s antibiotics for his strep and he woke up that morning with a sore throat. (There’s that feeling. My mind is racing. This IS how it all started! Strep….then strep again….and then cancer.) We were scheduled to see another doctor as Dr. Walrus was in the hospital on this day, but Dr. Walrus made a special trip over to see us. He’s on to my CMS. I think all of my emails and phone calls may have sent up a red flag…”This mom is losing it!” Cindy listened, Dr. Rawaas listened and shared their expertise on DFMO and my other concerns. It was a good visit. I left feeling confident about John continuing DFMO and a little concerned about the strep test results we would be getting a call on later that day.

7. The Call – Later that day I was sitting with foils in my hair at the salon and I get the call from Cindy that yes, John has strep again. The feeling….I tell her all my concerns, babble about strep and cancer. I said, “Tell me this isn’t cancer!” Cindy in her calm voice said, “Shelly, strep isn’t cancer. John has been exposed to kids with strep. He has strep.”

8. The email – When I got home from getting my hair done I had an email from Cindy. It basically said “Call us anytime. John is doing great. What can we do so you are doing the same?”.  Once again I was reminded what a remarkable place that Children’s Hospital is. The care for all members of the family. Cindy’s email was the wake-up call I needed. John IS doing great….snap out of it Shelly. There’s that fear vs hope thing again. I really want to live my life with hope and not let my fear overshadow it.

My “Crazy Mom Syndrome” has let up some (I did get “that” feeling again when we were at the cabin and I noticed two large bumps on John’s head……just mosquito bites) and I have been enjoying all the moments of our summer. Having said that….this week just happens to be scan week (UGH).

 

Wednesday: Physical therapy evaluation, hearing test, and MIBG injection

Thursday:MIBG scan, CT scan, exam and scan results

 

 

Please pray for clear scans on Thursday!!

Love, Hope, and Blessings,

Shelly

Spring/Beginning of Summer Update.

Where have I’ve been? Why haven’t I written? The best answer I have for you is that I have been running around like a crazed woman finishing up the school year and trying to keep up with the boys’ schedules. The next best reason is that I can not find a minute to myself to jot down even a few sentences. The computer must have some kind of magnetic pull because every time I am on it….one of the kids is right next to me. Now if I was a morning person, I’d have all kinds of time to myself because these boys are all night owls (Like their mother) and love to sleep in (Like their mother). The most honest reason for not posting sooner….I forgot my password. (So very Shelly of me.) Not only did I lose it, but I couldn’t reset it. I’ve been trying to for days…for some reason tonight as I threatened to smash the dang computer to smithereens….Wah – Lah!

So here I am.

I am going to work from the most current news backwards.

Tuesday was Jeffrey’s 14th birthday! I don’t have a picture of that day because Jeffrey hasn’t been very cooperative lately about getting his picture taken. I know that he gets frustrated because it takes a boat load of pictures to get 1 with his eyes open. Get a camera out and Jeffrey’s eyes automatically go half closed. I told Jeffrey that he reminds me of my Grandma Wilson. She NEVER liked to get her picture taken! I HAVE to post pictures on his birthday:

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Michael giving some love to his new brother June 2000.

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My good natured Jeffrey Jon.

Last weekend our family had the wonderful opportunity to participate in the 2013 USSA Salmon Outing in Algoma, WI. We learned of this event through Hope Kids.On Friday June 13th we hit the road for the 5 1/2 hour drive and surprisingly we all traveled well. Not one single punch was thrown between the boys! We got to our hotel and then went to meet the other families, boat captains, crew and volunteers. We ate dinner together, checked out the boats and then went back to the hotel to get to bed for our early wake up call. Well….we got back to the hotel and the Rangers were on….game went into overtime….didn’t end the way we’d hoped…and then got to bed. 3:30 in the morning came way too fast! We got to the boat on time and off we went. Jeffrey and Jon in one boat and Michael, John and me in another. It was COLD! Thankfully I had brought along our winter coats. The fish also thought it was cold because we didn’t get a lot of action, but our boat managed to reel in 3 fish. Michael and John got to reel in lake trouts and I got to bring in a king salmon. We got back to shore around 10:45, had lunch all together and then we hit the road for a day at the Dells. Man alive!…we were beat! Probably not the best travel choice or activity choice after such an early start and full morning, but that’s what we did. I think if we had to do it all over again…all 5 of us would vote to just cruise home.

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One more additional note: At Mt. Olympus I took one for the team and rode a few roller coasters with Michael. (It must be ok to do that with your mom when the chances of anyone you know seeing you is slim.) Poor Michael was born into a family that doesn’t really enjoy amusement park rides, but I’ll do them. Ugh…. I think he was trying to kill me because that was the scariest…roughest roller coaster I’ve ever been on! The next day my neck, shoulders and back were SORE and I had bruises on my left arm. I was surprised I didn’t have a black eye as Michael’s elbow had slammed into it!

 

Last Days of School Photos

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Lemon Walk/Run

It was a very special day when we could all be together to support a cause so near to our hearts!

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As you can see, our lives have been full of action…..of gifts. Not a single day goes by that I am not reminded of the blessings in my life and how fortunate our family truly is. 

I hope you all have a fabulous weekend.

Keep on Keeping on!

Love, Hope and Blessings,

Shelly

 

 

 

 

The Weekend!

This weekend could not have come soon enough! While we had tossed around going to Mom and Dad’s cabin in Spooner or up to see Judy and Sam in Walker, in the end we decided to stay home. We have been going at such a fast pace, staying home seemed to be the best choice this Memorial Day weekend.

This past week was a difficult week for our big guys. Some things were very sad and difficult to understand… like the unexpected passing of a Hastings High School student and other things little….like normal junk that kids go through and to them it seems just terrible at the moment, but they get through easily and move on.

Once again I was reminded that when our kids hurt so do Jon and I. As parents we want nothing more then to make things better, to take that hurt away…no matter how big or small it is. We know this feeling all too well with John and his fight with cancer. Of course this is on a totally different level, but oh my, how a parent’s heart can ache for their kiddos.

By Friday the guys were feeling better and we were ready to begin the long weekend. Michael went to work at Dairy Queen and the rest of us headed up to order a load of landscape rock and to get some flowers and vegetables to plant. It is always dangerous to take our little florist (John) in to any kind of flower shop. He loves flowers…all of them and any kind. He”ll just grab and start plunking them onto the two level cart.As fast as I am taking one off, he’s coming with two more and chewing me out for removing the one in my hand. I could hardly think straight because it was hot and humid in there and we had been picking up  and putting flowers back for a long time! With sweat rolling down my back, I gave in and headed for the check out. I tried to get John to go to the truck with his dad and Jeffrey. His comment, “No way! I want to see how much this costs!”. This was my fear. I had no idea the money amount on those 2 levels of the cart, but I didn’t have a good feeling. John stayed with me and thankfully he got distracted by the suckers at the checkout…and the total wasn’t as bad as I had thought. :)

Once we were home I walked down to get our mail (I’m sure our mail person doesn’t appreciate that I don this only about once a week.) I was going through our huge stack of mail and Jon found me bawling in the kitchen. I’m not much of a crier and it’s a good thing because crying makes him very nervous. When I saw him I said through gulps, “It’s not bad, everything is ok. Jeanine took a job in Orlando and her last day at Children’s will be June 5th.” Poor Jon….his response to me, “We love Jeanine…..I think you need some sleep.”… to which I had to laugh. The emotions of the week had obviously caught up with me.

Jeanine is John’s Child Life Specialist. She was with us each and every step through John’s treatment. She was the one that had to tell him the tough stuff. She explained his cancer to him, told him his hair was going to fall out and why, prepared him for each and every surgery. Jeanine was there for the darkest days and the best. John didn’t let her “in” right away. You can’t really blame him…she wasn’t coming with much good news those first few weeks, but as time went by a beautiful relationship blossomed. John trusted Jeanine and looked forward to seeing her when he was in the hospital. There were many games of Trouble, Candy Land and Race to the Roof. Jeanine didn’t treat John like he was a sick little boy with cancer. She treated him like you would a 5 or 6 year old and helped him through all the steps it took to get through treatment.

Not only was Jeanine a gift to John, but she was to me as well. I would ask her questions on how to tell John information or how to handle any issues that we were having. Knowing Jeanine was on John’s Team was always a huge comfort.

So why the tears? End of the school year stress? Stressful week at home? Probably both of those things and also a feeling of , “No! what if we need you?”(You know….those scary thoughts of “what if if comes back….it’s not going to come back…but…” I do know that Jeanine will forever have a very special part in the Gegens’ hearts and know we have the perfect excuse to head to Orlando!

Jeanine visited last April 2013 with John's kindergarten class to talk about his hickman line and feeding tube.

Jeanine visited last April 2013 with John’s kindergarten class to talk about his hickman line and feeding tube.

Waiting to meet the Wild players after a Wild vs Blackhawks game 2013.

Waiting to meet the Wild players after a Wild vs Blackhawks game 2013.

Saturday was a busy day around the house. The laundry machine was churning all day long and I was able to get out into the garden while John did some work in the yard. For the past two years Jon’s mom Judy has done a wonderful job of planting our garden and taking care of it. Saturday was my official return to our garden. I planted marigolds, tomato plants and a pumpkin plant. I also planted some of our patio pots. I would take breaks to play catch with John or watch him swing his clubs in the backyard….it was a very productive day

Sunday had Michael heading to Canterbury Park with friends for a music festival and Jon and I headed back outside to work. More plants were put in their place and more rock spread. We decided it was time for a little fun and headed to Prescott to play a par 3 course there. The only golfer in the bunch is dad and he was very patient with the three ding-a-lings he was stuck with. We had a good time and no one took a ball or club to the head!

Riding the tram to the par 3 course.

Riding the tram to the par 3 course.

Standing the same!

Standing the same!

Smiling towards the end...ticked off the first 3 holes.

Smiling towards the end…ticked off the first 3 holes.

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John had his regular labs and physical this week. His counts look good, but there is a little concern over his most recent hearing test from May. These test show that John now has some low frequency hearing loss on top of  the high frequency hearing loss he already has. We will go back in a month to have him retested and we will go from there. John has been doing well, but we miss hockey for stretching and strengthening his legs. I’ve been trying to get him out on his bike more. Today when we were walking during golf and not riding in the cart he said, “I know why you are making me do this….exercise.” Yep.

The school year is winding down with only 8 more days for the kids. If you are wondering what a first grade classroom is like at the end of the year here’s a story for you.

On Friday I had dismissed the students from sitting on the carpet by me back to their desks. I had them move by calling their tables so everyone would move slowly and safely back to their seats. I called one table and before I could stop it …and in 1 swift motion, a little boy ran across the room, slid across his desk top and landed in his desk with more flair than I ever saw Bo or Luke Duke slide into the General Lee! . Once in his seat, my friend looked up at me waiting for what was going to come next. All I had for him was, “Next time could you please make a different choice when going to your seat?”. He smiled and nodded his head yes.  This is just one little moment of the many the next 8 days will be filled with.

 

After all the work and play….I am exhausted! I am heading off to bed.

I hope you all had a wonderful weekend with friends and family.

Special prayers to our friend Josh as he is at Amplatz going through the stem cell process. Keep on keeping on my friend!

Love, Hope and Blessings,

Shelly

 

What a Weekend!

It was a huge weekend for the Gegen Boys. Busy like usual, but full of special memories.

Friday:

Jeffrey: It was the 8th Grade Spring Formal! The kids headed up to the Country Club for a pizza buffet before heading to the dance at the Middle School. I don’t have many pictures of Jeffrey because he did not want anything to do with me taking pictures of him. I’m lucky I got what I did! I saw him after the dance, before he went to his friends’ house for the night. His voice was hoarse at that time….I don’t even want to know why.

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John:  Michael had a home game on Friday evening and it was “Stand Up 2 Cancer” night at the game. Michael’s coach Brian Jenson invited John to be an honorary captain for the game. John wore Michael’s away jersey, a hockey helmet, and had his lacrosse stick. He was able to participate on the field during the team warm-ups. John used his defensive skills (whacked players as they ran by) and much to his delight was able to shoot on the goalie. Coach Jenson was awesome with John, quickly making him feel comfortable and like he was part of the team. The goalie’s patience and interaction with John was also priceless to me. During stating line up John’s name was announced and there he was standing on the field for the National Anthem with his big brother and the rest of the lacrosse team. Making it even more special was the fact that Grandma and Grandpa Prinsen, Grandma Judy, Grandpa Bill and Uncle Tim were all there to see John as honorary captain.

Saturday: Prom! This was almost a sad day for me. I just can’t believe that Michael is 17 and I’m already in a little bit of a panic that he will be a senior next year! I am glad he had a great time and made it home safe and sound. :)

On Saturday evening Jon and I were able to sneak away for some fun with friends while Jeffrey watched John for us. I only received 1 phone call from home during our time away. I call that successful!

Sunday: I went down to Rochester and then Mom, Dad and I headed to Rick’s in Greenleafton for Jessica’s baby shower. It was fun to see everyone and get a little baby fix with my great nephew Jackson. I’m excited for two more babies to be added to the family. Baby girls! How fun.

Life has been crazy busy with the kids’ sport schedules and the end of the school year. Jon and I are in the”divide and conquer” mode. (You take this kid and go do that, I’ll take that one and go do that ….and John gets dragged around in the process.) Evening meals have been the grab and go or get it on the way variety. We are all looking forward to summer break…13 days or something like that…not that I am counting or anything!

This Thursday John goes to Children’s for his monthly blood work and exam. We get to see a nurse practitioner that we haven’t seen in a long time. I am excited for her to see how well John is doing.

Have a GREAT week!

Love, Hope & Blessings,

Shelly

Clear Scans!

 

Hanging out after the MIBG scan

Hanging out after the MIBG scan

Scans snuck up on us quickly this time. The anxiety was still there, but not as bad as in the past. I don’t know if this is due to our  boys’ hectic schedules keeping us preoccupied or due to the words of encouragement Dr. Rawwas shared with us at John’s last appointment…but scans didn’t weigh as heavily on our minds.

We headed up to Children’s Minneapolis on Wednesday afternoon. The hearing test had been cancelled at the last minute and that left John with just the injection of the MIBG scan. Once again he was such a brave boy about the pokes and IV. Jon and I can’t say enough about the technicians in radiology. They are always so nice and we’ve been there enough they know John well and he easily engages in conversation with them. John was scheduled for a CT scan the next day, but since he hadn’t eaten in 3 hours and they had an opening, they suggested we do it then (Wednesday). This would allow John to eat Thursday morning and to have just the 45 minute MIBG scan and then his appointment with Dr. Rawwas. Once the CT scan was done we were on our way back home.

Thursday morning we once again headed back up to Children’s. When we were checking in at the Welcome Desk “Dude” from the Star Studio stopped by to visit with us. It is always fun to see the Dude. You can’t help but smile when he is in your presence. John and I fast-walked raced to radiology (everything is a competition) and when we got there we were told John’s appointment would be 15 – 20 minutes late. More fast-walking….back to Star Studio to watch a little of Dude’s televised TV show. Fast- walked back to radiology and they were ready for us.

It is always the same routine: John picks out a movie to watch once the scan passes his head and he can turn it, he hops up on the table, a wedge is placed between his feet, his feet are taped together, the technician places his arms and head how they need to be, the scanner part of the machine is lowered so it sits almost touching his nose, I position my chair next to John – but with my back to the screen that displays his body as it is being scanned….and then it is time for the scan to begin.

I had decided that I was not going to look at the screen this time and I had even asked that the screen be turned off. Unintentionally it was left on. I had brought a book along to keep my mind busy, but at the very end I turned and peaked. To my very untrained eye it looked like a normal scan and I texted Jon my diagnosis. (He is always with us in spirit, but much elsewhere on the hospital grounds. We deal with scan day in our own way. If I need him, I know I can get him.)

Next we headed to lab for more blood draws and to hand over John’s first morning pee. We were then off to the Star Cafe for a little lunch before meeting with Dr. Rawwas for the results.

While eating lunch one of John’s nurses, Deb, from the 7th floor was walking through and stopped by to talk. Deb was one of the very first nurses we had during John’s diagnosis and first hospital stay (Yesterday was the 2 year anniversary of bringing John home from that first hospital stay that lasted 20 days.) and she spent hours with us during those days educating us on our new normal and the care that would be required of us. It had been almost a year since we’ve seen her and of course I had to get a little teary-eyed. So much emotion…We are forever grateful to all of John’s nurses for they lovingly cared for our little guy through the darkest of days. It is the nurses that were in the trenches of cancer treatment day in and day out…Those 7th floor nurses will always have a very special place in my heart.

Finally it was time for our appointment with Dr. Rawwas. Cindy, John’s nurse came in first and talked with us and then Dr. Rawwas came in and told us right away that John’s scans were great. Yay! John had his examination and his counts are all good (Urine won’t be back for a few days.)  I had a very good discussion with Dr. Rawwas. Jon is there listening, but he says little. Again….we deal in our own ways. Dr. Rawwas told us that we balance each other out.:)  12 weeks …and then scans again. Next regular appointment is May 22nd.

We got in the car to go home and I was hit with a wave of exhaustion. Obviously even if I try to tell myself I didn’t have scananxiety as much as before….it was there. These days are emotionally exhausting. Exhausting….but also exhilarating. There is such a sense of relief with the good news.  I know that we are so very fortunate for John to being doing so well. We are blessed beyond words.

 

Life has been hectic and normal, which we are so grateful for. These 3 boys keep us running. Here is a glimpse into some of what we have been doing. Of course there has also been lacrosse and hockey thrown into the mix as well.

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Thank you for your continued prayers for John!

Love, Hope and Blessings,

Shelly