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

Grandpa and Grandma Prinsen’s Cabin

He LOVES the boat!

Please pray for clear scans on Thursday!!

Love, Hope, and Blessings,

Shelly

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:

Michael giving some love to his new brother June 2000.

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!

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

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.

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.

Standing the same!

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

IMG_0798

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

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.

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

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

This brown-eyed babe has taught his mom so much.

It is exactly 2 years to the day that we walked into Children’s Minneapolis hematology/Oncology specialty Clinic with a five year old boy who was in such pain he couldn’t walk. There had been complaints about knee pain here and there..the night before he had run around at Michael’s lacrosse game and the next morning all John could do was crawl. When we left for the clinic we packed a small bag and knew we weren’t coming home that night without even saying it to each other. We were too scared to say it. We didn’t come home that night. We there for the next 20 days.

This is when we first met Dr. Walrus/Rawwas and his/John’s nurse Cindy. This is when we learned we were in deep. I will never forget that appointment. My mom, Jon, John and me in that room. The examination, being told that something was felt near John’s spleen. Holding John with his legs wrapped around my waist and his little arms around my neck as I carried him from the clinic,across the skywalk and up to the 7th floor. Clinging to my son….numb and nauseous with fear.

Today…today is wonderful! Today I saw my son in his first grade classroom interacting with his friends. Today I saw him stick his tongue out at me in the hall of school. Today I took him to hockey and watched him skate his little heart out. Today I listened to him cheer on the Gophers Men’s basketball team and The MN WILD and read Z is for Zamboni.

Yes, John has fought hard along the way, shown strength beyond his years, and endured the unimaginable…but today I focus on the many blessings that have wrapped around our family like a blanket of love. The wonderful nurses, doctors…all of the Children’s staff. They educated us, listened to us, made us feel like we were part of their team, and cheered us on when we needed it most. Our families that dropped everything to walk this journey with us. Our friends and neighbors, our colleagues, the Hastings schools, the hockey and lacrosse clubs,Our Saviors and Pastor Doug,  acquaintances and even strangers, Team John shirts, Mikko bracelets, The beauty school, the donations, Mini-sticks for Mikko, Light the Lamp for Mikko, the gifts, the cards, the meals….our amazing community! All of you pulled us through and gave us the strength and courage to keep on keeping on. We are blessed to have your support and cheering our little guy on. We are forever grateful.

John is doing so well, but his journey with Neuroblastoma isn’t over and we still would like your prayers. Please keep John in your prayers. Prayers for NED (No Evidence of Disease) to stay put and those cancer cells to stay away. Prayers for scans that are around the corner at the end of April, prayers for no or minimal late-term effects. Prayers for John Joseph to continue to thrive!

Two years ago I never dreamed today would be like this.  Today is a gift.

Love, Hope and Blessings,

Shelly

Last Friday Jon and I took Mikko to his monthly appointment at Children’s for his blood draw, urine tests and physical exam. This appointment was with Dr. Rawwas. This time his blood and urine samples were handled upstairs in the clinic. There was a new guy (to us) drawing John’s blood and dealing with us for this part. I ‘m pretty sure he thinks I’m nuts after all the reminders and questions I was throwing at him. (Do you know some of this blood needs to be on ice? Do you know some goes to Michigan and some stays here. Same with the urine…some stays here…It was taken at 7:15 this morning…It needs a label on it…are you sure you drew enough blood because in the past I thought there were several more tubes…and on and on and on). I wouldn’t be surprised if next time he sent us down to the lab.

When Dr. Rawwas came in he had asked us if there have been any more complaints about leg pain. Nope, not a word. He examined John and then we talked a little more about his thinning hair. I had read on a Neuroblastoma support site about Dr. Sholler (The doctor we saw in Michigan.) suggesting Melatonin and Zinc help with this. We talked for a while about dosages and agreed to give it a try.(I had also discussed this with our contact in Michigan, but didn’t want to start John on it until we talked with Dr. Rawwas about it.)

Then Dr. Rawwas took us by surprise by what he said next. I wish we could remember it better, but both John and I were rather dumbfounded by his unexpected comments. It was something like…Dr. Rawwas wanted us to know that based on how John responded so well to his treatment that he is confident (not sure if that was the exact wording) that he will not relapse AND he smiled. This was HUGE for us to hear and see. Of course both of us had to well up with that happy news.

I debated whether to share this as I know there are no guarantees in life, especially life with cancer. I also know there have been children who have successfully completed the COG protocol for Neuroblastoma and have relapsed. But I also know that Dr. Rawwas would not say anything that he didn’t believe and his words of confidence lifted our burden of worry  a bit. His comments on Friday were a gift to Jon and I,  allowing us to lower our guards just a little and breathe a little deeper…to live each and every day as the gift it truly is….pushing the worry further behind.

Of course we will always worry to some degree. If not about relapse, then about the possible long-term side effects from the drugs that rid John’s body of his stage IV Neuroblastoma. One day at a time…we will keep on keeping on.

We are almost 2 years out from John’s diagnosis on April 6, 2012. It’s crazy to think of the life we’ve led for the past 2 YEARS!

Many adults think of Michael as a quiet kid, keeping his thoughts to himself. Both he and I are night owls and it is late at night that we have some of our best discussions. It usually happens as he comes up out of the basement around 11:30 or 12. This happened last Thursday and it is a conversation I will remember for  a long time…forever. It all started with my talking about getting ready for John’s doctor’s appointment the next day. Michael always wants to know what kind of appointment and what is going to be done. Then the questions and comments from Michael started:

He told me that John’s cancer had been very difficult for him. Right then and there I had to FIGHT tears because I knew if I cried the conversation would be over in a flash. I listened to him and I won’t share that part of our talk, but man it tugged at my heart. He then asked me what was the most difficult thing for me post John’s diagnosis. I answered and he answered. (Remember it is Michael leading this entire conversation.). Were there ever times during John’s diagnosis/treatment that I  thought he was going to die. Ugh…again we talked and talked for a long time.

It was a good conversation and I am so thankful that Michael feels comfortable enough to talk with me as he does, but it was a reminder to me how cancer turns the entire family inside out and upside down. It has touched  us all and left a mark on each and every one of us in different ways. Looking back there are things I’d do differently. Most importantly I would find a way to be more present for my big guys. I also wish we all would have went to counseling to help us deal with the chaos our lives were thrust into. Hindsight…right?!

This post has taken me FOREVER to write tonight. When I would stay up until 2 or 3 in the morning I had much better luck writing. The house was quiet and I was alone with my thoughts…able to put a few sentences together. It has been extremely difficult to find this time before 2 in the morning. Tonight I put John in bed, took a shower and crawled into bed to write/ type while the guys watched the WILD game. The dog was with me and stressing out from all the yelling/cheering coming from the living room. She was constantly trying to get on my lap (65 pound lab!) Jon came in and wanted to know what I was writing and he was bugging me. I told him it is far to late in my journaling to censor me. Later Jeffrey did basically a cannonball onto my bed and wanted to know what was up. Jon came back in to bug. Jeffrey came back in. Dog was still trying to get on my lap again. Jon was bugging again.

It is midnight and Michael just came up from the basement to share that all Scandinavian countries are working towards passing legislation to ban homework. Too bad he lives in the U.S. and has a chemistry test tomorrow, a paper rewrite that will take a minimum of 45 minutes(I’m told) and math. I have also been informed that I have no idea how busy he is….waaaay busier than me. 🙂

Happy April 1st!

Love, Hope and Blessings,

Shelly

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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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