Syd loves to hang out in John’s bedroom.

Birthday Surprises

New Clubs!

Cha…ching!

YES! It’s Mankind!

Happy BIrthday John Boy!

Fore!

Nervous before the candle blowing out

7 years old today! Birthdays are a HUGE deal around our home. Each and every day is a gift and a blessing..always have been, but cancer made us realize it so much more. Our youngest is 7! Our youngest is healthy! Our youngest is fully of trouble and we are so thankful for it every single day!

I love being across the hall from John every day at school. What a treat to see him proudly walking the halls in his birthday hat! I also was able to sneak across the hall and take a picture of him working in his classroom on his birthday! 🙂 I didn’t ask him, but at lunch instead of saying hi and going into the staff lounge, I sat down and ate with my birthday boy and that was ok with him (Once he got over my class waving over to us.)!

This evening it was a family gathering with Dominos Pizza and a DQ Oreo Blizzard ice cream cake decorated by Vicki Jelly (Thanks!). Grandpa and Grandma Prinsen weren’t here because Grandpa is dealing with a nasty cold, but Grandma Judy, Grandpa Bill, Uncle Tim and Jill were here.

John loved all his gifts, but right in the middle of opening them we received a call to top all the gifts! John was invited by Hope Kids to skate the Wild flag in tomorrow night at the preseason game of the Wild against the Blue Jackets!!!! Holy Cow! We are so excited and grateful for this wonderful, memory making opportunity! He will need to show up early to practice what he is supposed to do. Huge worries from John about falling..we’ve been busy reassuring him that would be ok..just pick yourself up and keep on skating.

When I look back and John’s birthday picture from last year…it seems like forever ago and just like yesterday. He has been through so much, fought so hard…my feisty, feisty little boy. You have shown all of us what true courage looks like and I am so proud to be your mom. You have taught me to live each day to the fullest, love with all my heart, and you have shown me just how strong I can be. I too have a “fight” in me I didn’t know was there. It is your birthday my darling little boy, but you see…you are the gift. The most precious gift to your dad, your brothers (I need to remind them of this at times. :)) , your grandparents, your uncles and aunts….a gift to everyone that loves you. You have taught us all more than you could ever imagine.  From one of our favorite books that you and I mishmash the words to all the time…. I love you as deep as the deepest ocean, as tall as the tallest mountain, to the moon and back a million gazillion times.

Happy Birthday John Joseph!

Happy BIrthday John Boy!

Love, Hope and Blessings,

Shelly

Getting ready to toss the syringes!

Mikko is all tucked in for the night and just like all past birthday eves of the boys, I shared his birth -day story. When I reminded him last night that we would be doing that tonight he said, “I bet that was the best year ever!” I told him it was a great year, tied with 2 of my other favorite years….1997 & 2000. I told him all 3 of my guys were in a 3 way tie. He was less than impressed.

I also reminded him how this birthday will be so different than last year. When he turned 6 he was still receiving chemo therapy, weak, bald and he was a just few days away from an almost 1 month stay for his stem cell transplant. What a difference a year makes! Our family has SO much to be thankful for!

The pictures of the bag of medication and syringes… On Thursday evening my neat an orderly (Maybe…just maybe a little OCD…) eldest child looked at the mess on top of the little counter by the fridge and said, ” The only thing over here are my sunglasses (as he picked them up), I want this cleaned up by the next time I come home.” My response was, “Whatever”. He was lucky I wasn’t in a fighting mood. Anyways…Friday evening it was quiet around here and I cleaned that little counter top off for the kid and then I decided to tackle the cabinet full of Mikko’s medication, syringes, and such. When I showed them to Mikko and I told him I was going to throw them out, he asked if he could. What a great idea! I said of course, we took the pictures and then he hesitated before throwing  them. (The medication and needles I need to take somewhere. He threw the plastic medicine syringes.)

Mikko: I took all my medicine with these.

ME: Yep, you did.

Mikko: What if I need these?

Me: You don’t

Mikko: What if I need these?

Me: If you need medicine we will get you pills. You swallow pills now. We can always get more.

Mikko: (Mostly to himself) What if it comes back……I can get more….it’s not going to come back.

And then he dumped it all into the garbage can.

It was a sweet and sad moment all twisted together. The poor kid has the same fears I do. It is scary getting rid of the medical “things”…I don’t want to jinx us! It was also a reminder that this almost 7 year old little boy has worries and concerns that are very “heavy” and obviously weigh on his mind. I want to tell him it will never come back, that the battle is done…but I can’t. I know we all have a lot to learn about living life post treatment and not living in fear.

The shark picture…..Mikko and I headed up to Minneapolis for his scheduled appointment for the DFMO study with his first morning urine (Was with me at school. I’m not telling where!) . He will go once a month for the next 2 years (if he remains NED). It was a longer visit than I expected. The lab was packed with screaming kids and angry adults. I turned the corner and I believe I said, “Wow”, out loud. It made for some awesome people watching, but also a really long wait. When it was his turn for blood draw he didn’t make a peep. Back upstairs to see Dr. Walrus where he spent a good deal of time visiting with us and examining(I hold my breath the entire time he is feeling under Mikko’s arms, his tummy and groing…praying he feels nothing out of the ordinary.) Mikko. We were sent on our way after scheduling physical therapy with the next visit. When Mikko and I were having dinner in the cafeteria (to avoid the 5 o’clock traffic) I looked over his “counts” sheets. I noticed that his platelet and red blood cells went down some, still in the normal range, but down (side effect of DFMO), his white blood cells were up as was his BUN count. Nothing was said about it at the clinic, so obviously it is not a concern, but I hated to see it. I’m interested to see what next month brings.  The Shark:   We passed the pharmacy window and Mikko hit the brakes. No, no, no no….but…but…but    Do you want it for your birthday? No, no, no   Do you want to buy it with your own money? Yes       He really did want it! As you can see he got it and yes with his own money.

Tomorrow is a WWE wrestling themed party! When I kissed Mikko goodnight I said, ” You know honey, 7 is a lucky number.” His response, “That’s an old saying mom.” The kid refuses to cut me any slack!

Love, Hope and Blessings,

Shelly

(I’m not proof reading tonight!)

Jeffrey, Jill, John, Me and Grandpa at the Team John sign on the walk path.

Miss Minnesota, John and her skinny, skinny legs!

Thanks to your donations I was the 3rd top individual fundraiser!

John found Jeff on the walk. He is one of our favorite physical therapists.

I got myself a pirate!

John and Gumdrop

Skipping rocks with Uncle Tim

Thank you, Thank you for your donations! Thanks to your generosity we raised $2, 225 for childhood cancer research and clinical trials!! Way to go Team John!!

On Friday when I got home from work there was a message from Cindy, John’s nurse at Children’s Specialty Clinic. She was calling to see if I would be willing to share John’s story on Saturday at the CureSearch walk opening ceremony. She told me she knew it was short notice….I didn’t need to say yes….     Ugh..For a moment I considered ignoring the message. I never got it right? Then I thought to myself John never had any choice in any of what he’s gone through. I’ll do it. I called Cindy back and she got me in contact with the person I needed to talk to. No one ever said, but obviously someone either backed our or something came up at the last minute.

Late notice yes, but that was probably a good thing with the first week of school. I would have been nervous about it all week. Late last night I worked on writing John’s story of survival, revising, practicing out in the garage in the mirror framed in hockey sticks, revising and finally going to bed around 2. Once again I worried about doing “right” by everyone.

Dad and Jill (We have 2 “Jills” in our extended family. When I mention Jill,Mikko will ask which one and if it’s the Jill that was with us today I say, “Uncle Tim’s Honey Bunny Jill) arrived bright and early and then we were on our way to St. Paul.

We checked in, I went for a short walk to get my thoughts together and then we went to the opening ceremony. Miss Minnesota was there and she spoke a bit and Dr. Perkins from Children’s Hospital Minneapolis spoke. She talked of Jane that had passed away shortly before this event last year and how she loved to make duct tape wallets (I had seen her work on these in the playroom at the hospital.) Jane’s mother continued with the duct tape wallets and over $13,000 had been made for CureSearch by selling them! Then it was time for John and me. We got through it and I think it went well. John received 2 rounds of applause during my short talk. He definitely didn’t mind that! Next they called for walkers that were present in memory of a child that had lost his/her battle to cancer to come up and get a balloon. The balloons were released as the DJ played Clouds by Zach Sobiech. That was a touching ,tough moment. Lastly before the walk began the survivors were called to the stage to receive their survivor medals. Another “moment”….

Then we were off for the walk. It was hot, hot, hot and that was an extra long 2.2  miles! Maybe it felt that way because we were clumped together for a while…who knows….but it was hot! We thought we heard there were going to be water stations…nope. It was a long, long way for John and he became a little unpleasant until I put him on my back. We walked a good portion of the walk like this. He would get down in the shady parts. Towards the end John had really had it and he threw his water bottle and then gave it a couple of good kicks. It was probably too much for him as he hasn’t done that much exercise at once. After one such fit I told him to knock it off…he’d just been up on stage….everyone knew who he was. He didn’t care, but we made it to the end and with a little water and shade his temperament greatly improved.

We went to the closing ceremony were we learned that $80,000 had been raised with this walk!!! While Jill, Jeffrey and I were at the closing ceremony, John and Grandpa Bob were in the pavilion getting John’s face painted like a pirate. When we met up with them they were headed to get a balloon from Gumdrop the clown. Well, gumdrop was in high demand…the wait was forever in line. I’m talking a good half hour! The kid wasn’t budging…he was waiting in line. We finally get to the car, place the sword balloon in the back (Pirate face…sword balloon), started the car and “POP”.)….the dang balloon popped, John started to bawl and Grandpa was out the door to get him a new one before I could stop him. Are you kidding me? Another wait…we were seriously one of the last groups to finally leave and I’m pretty sure Jill will never ride with us again.

Jill and I were making mental notes for next year.  1. Recruit way more people to join Team John     2. Bring all those people to the walk! (Thanks for coming Lisa!) 3. Bring water on the walk (Duh….I know)  4. Have a picnic afterwards or order pizza like another team did. 5.Bring something for John like a scooter for the walk.

It was a privilege to be a part of this day and I’m so glad we were a part of it. Thank you again for your generous donations!!

The sword balloon…..John, Grandpa and Jeffrey sat in grandpa’s back seat on the way home while I drove. John decided to make that annoying squeaky sound by rubbing the balloon. It must have been like fingernails on a chalkboard to Jeffrey because he was going insane and there my dad had to sit in the middle of it….all…the ….way…home! He too will probably never ride with us again!

Later in the afternoon we went over to Jill’s friends place in Prescott and enjoyed a fun afternoon on the water. There was a jet ski there and Jill gave John a few rides and he loved it! She gave me a ride…and she didn’t drive nearly as cautiously with me! I’ve learned a few new things about Jill in the past two weeks. 1. If you take her up north by hell or high water you better get her a real campfire to roast her marshmallows over  2. She seems to be able to throw caution to the wind all in the name of fun…ok…that may be a slight exaggeration…but there was absolutely no fear for her on that jet ski!! At one time when I was riding with her and sitting behind her…I just leaned forward, bear hugged her and hung on!

Jon wasn’t with us at the walk this morning as he and Tim were at their Aunt Sandy’s funeral. Sandy passed away this past week from cancer. They said her service was very nice and they saw several of their aunts, uncles and cousins. My heart breaks for Sandy’s children especially right now.  Not only was Sandy fighting cancer, but there father, Jon’s Uncle Jimmy is too. How can that be? Have I ever told you I HATE CANCER?!

Tomorrow Jon, Jeffrey, Tim and I are golfing in a special tournament. I will tell you more about it later. I’m excited to see the people that will be there, but I’m not looking forward to golfing. I haven’t swung a club since before John was born and I stunk then! Jon wanted me to go swing at wiffle balls tonight. I passed because really…what good was that going to do.

I just may drop from all the exercise I participated in this weekend walking (longest I’ve went since injuring my foot), swimming (included in that would be jumping, attempting to climb up a 2 rung ladder to heave my out of shape body onto a swim platform…this is very difficult to do with zero upper body strength, but obviously amusing from the comments I was receiving from the beach.) and now golf. At least it’s a best ball scramble thing and they won’t be using any of my balls!

I need to get this old weary body to bed. It was a day packed with meaning, emotion, a few fits, and lots of fun!

Thank you again for supporting Team John in the CureSearch Walk ….be it by donations or positive thoughts. You guys rock!!

Love, Hope and Blessings,

Shelly

First bike ride since the fall of 2011?! Really?! How does that happen? We put the bike up and away during treatment and those low platelet counts. Mikko has felt great all summer, but the bike still stayed put. He was busy swimming…and I put it off because I wasn’t going to be able to run alongside him as he became reacquainted with bike riding. Well you know the saying, “It’s like riding a bike…”. Jon got Mikko’s bike out, chicken mom went in the house, and off Mikko went a little wobbly at first and then he got the hang of it. When I emerged from the house Mikko asked me, “Do you want to see a trick mom?”. No thank you! We made it back into the house safely.(Well, I did accidentally peg him in the back of the head with a ball when I was attempting to throw him out in a one on one game of kickball, but he shook that off.)

First day of school for Michael (Junior) & Jeffrey (8th) grade.

Saturday will be here before we know it and that is the day of the CureSearch Walk. I am so thankful for the donations that Team John has received! We are now right at the $2,000 mark. I think a great amount for our first year of fundraising for this foundation.

When I walk on Saturday I will of course be thinking of my warrior son and all he has endured. I will also be thinking of the children we know from the 7th floor of Children’s Minneapolis that continue their fights against childhood cancer (Sienna, Alannah , Braden and Emma to name a few), and those that are now angels (Brady, Kayleen, Jane). And Christopher…Christopher passed away this morning from relapsed Neuroblastoma. (Remember when we were in Michigan, Christopher and his family were in Michigan ….)

When I learned about Christopher this afternoon a heaviness washed over me and my anger and disgust with this horrible, relentless disease…kind of kicked my ass for the rest of the day. It’s that uncomfortable line we cancer parents walk. Feeling horrible for this family that has fought and fought and fought for years…..Feelings of fear, “That could be my son.”….Feelings of guilt that our almost 7 year old is doing so well  and other children are being taken(I know this sounds stupid, but I really think other cancer parents will “get” that comment.) With each innocent child lost to cancer, it is a reminder, almost as stunning or surprising as a slap in the face, that lives can change in an instant.

2 more days until the CureSearch walk. There’s still time to make donations…. to help kids have a fighting chance. (After Saturday you will get a long break from my saying, donate, donate, donate!)

http://rpx.me/1/-B9o

Love, Hope and Blessings,

Shelly

The first day of first grade! What a wonderful milestone for our guy! Mikko was so excited about school and he even went to bed at a reasonable time last night! This picture is of the two of us after Jon dropped Mikko off at school this morning. We are right across the hall from each other. How cool is that?! I was informed at bedtime last night that I am allowed to kiss him and hug him only on the first and last days of school. That will be tough, but I agreed to it!

The fact that we are here living in this “normalcy” of school and life is totally amazing to us. Last year at this time we were preparing Mikko for his stem cell transplant. Last year at this time we didn’t know if he would ever go to school during kindergarten. Last year at this time I was scared to death we were going to lose him to stupid stage IV neuroblastoma.

Now we are here and there is always that underlying fear of the what-ifs that will be with me forever. The fear that makes me want to raise awareness for childhood cancer, for funding, for treatments, for research. The fear that makes me continue to point you in the direction of my CureSearch walk page. Only 4 more days until the walk! Fear from what I learn about other children with stage IV high risk neuroblastoma and their horrible struggle with relapse and others that have lost their battles.

Below is a link on a little girl that I have followed for quite a while. It was difficult for me to watch…to hear the words said aloud that I already know, but this is the ugly truth about this horrible, horrible cancer!

http://nesn.com/2013/08/eight-year-old-brooke-mulford-doesnt-let-diagnosis-hamper-her-positive-attitude-continues-to-appreciate-life/

Mikko is currently on a clinical trial, DFMO, in hopes of preventing relapse.

http://rpx.me/1/-B9o

In other news: George is home! Mikko was happy to see him in the mail!

Looking Good George!

This was John in Nov. of 2012.Looking at John now, you can almost forget the hell he’s been through. Here’s George after John’s first radiation treatment. What a loyal and faithful friend. We are so grateful you found your way home!

In other new #2: In the poorest possible parenting move ever……Jon, Mikko and Jeffrey are on their way to the Target Center tonight for the WWE event. First day of school was today for Mikko…tomorrow is Jeffrey’s first day. Who does that? I guess us. What does it say about me that I’m a little jealous that I decided not to go? It is our family’s dirty little secret. Shh! My knowledge in everything WWE did impress a first grader today. I noticed his WWE backpack and I had quite the conversation with him. I think he walked away a little stunned.

With the guys away, I’m heading up to school to do a little more organizing.

Oh! The RV trip was a success. We had a good time and now I’m rid of the guilt that would have burdened me had we not went. Mikko did inform me that next time we go in an RV it needs to be like the ones he sees on that tv show (Celebrity RVs). I informed him the next time he goes will be when he is a grown-up and takes his own family. I’m sticking to Sam’s house and my parent’s cabin!

Michael survived. We didn’t see much of him until the afternoon on all the days except the last. Monday morning at about 9:00 the RV door swung open and there he was. “I’m ready! Let’s go!”….he was read to head home.

Happy first week of school to all!

Love, Hope and Blessings,

Shelly

We have been having a very nice time here in Walker at Sam’s place. On Friday we headed down to the private beach for this neighborhood. What a beautiful day! The weather was perfect for playing on the beach, building sand castles, swimming and floating on the water. Of course there were the typical fires I needed to put out. Someone was throwing sand, someone was kicking sand, someone was holding someone else under the water for too long. Michael even decided it would be fun to run his mother down and tackle her in about a foot of water. Tackle! Jeffrey commented on how he couldn’t believe how hard I fell. Later in the afternoon Sam took the boys out knee boarding and I was left on the beach all by myself. Bliss! Not another person was on the beach. I almost didn’t know what to do with myself. Michael and Jeffrey had a fun time out on the water. Jeffrey and I decided to stay on the beach when everyone headed back up the road to Sam’s. We floated on our rafts and just hung out. We don’t get enough opportunities like that…to just be together. It just may have been my favorite part of my day.

Uncle Tim, Jill and Jill’s parents Roger and Sandy came up on Friday evening to add to the fun. That night, and all the rest of the nights, Michael slept in Sam’s house while the rest of us Gegens headed to the RV. It is just fine to sleep in there. Sydney is loving the RV. After she has went swimming and has ran around the yard she gets “kenneled” in there.:)

On Saturday the men all went golfing and once again we hit the beach. Jill, Sandy, Jeffrey, Jon and I spent the afternoon down there. Another beautiful day. Michael didn’t join us and I’m pretty sure he should feel rested up with all the sleep he’s getting in. He did finish the book he needed to read this summer for English, so that’s a good thing.

Last night all 11 of us headed down to the Legion for dinner. After dinner there was karaoke. Much to the dismay of Michael and Jeffrey, Jon and I decided we should sing a few songs. The kids hung in there pretty well. When a little concern was voiced I gave them both a, “Who cares? Nobody knows us here!”. Roger sang a few songs as well and for the record….he’s the only one that should have been singing. Roger has a very nice voice. The little DJ guy wasn’t any too friendly…but I don’t think he was expecting such a rowdy group so early in the evening. Something all of us will always remember and Tim won’t let us forget is the gal in the cowboy hat. Jon was singing Johnny Cash Folsom Prison Blues (I’m laughing as I type that!), Uncle Tim was dancing on the dance floor (the only person) and out of nowhere comes this cute cowboy hat wearing gal and she started dancing with Tim. Pretty exciting stuff! Lots of laughs, a little dancing and we were home by 10:30 and Michael and Jeffrey survived the night. Mikko thought it was great.

Today is a cooler, cloudy day. Jill and I went shopping in Walker for a while, Jon has the boys fishing on the dock, Michael may still be sleeping…

Today is September 1st and September is Childhood Cancer Awareness Month. Only 6 more days to the CureSearch walk. Please consider making a donation.

Love, Hope and Blessings,
Shelly

Yesterday was one hectic run here, run there day! I got up and went to work for our half day of workshop, ran home at noon, grabbed Mikko and we headed up to Minneapolis for his blood count check for da 15 of being on the DFMO. Each cycle of DFMO is for 28 days for the next 2 years. Starting at the next day 1 he only has to go in for count checks once a month.

When we got to clinic we were sent down stairs to lab for his blood draw. This was new to us because Mikko has always had this done in the oncology clinic, but now since he doesn’t have his hickman…downstairs we went. He was a champ! The poke wasn’t a big deal at all. I think it helped that the guy drawing the blood looked like Uncle Tim. We then headed back upstairs. It was fun to see people we haven’t seen in a while. There were lots of compliments on how good Mikko looked and how tall he’s getting. (75% height   45% weight). Dr. McCalister and Cindy spent a lot of time talking to us. They were interested in hearing about our trip to Michigan. Dr. Rawaas had just presented on Wednesday about the DFMO study. It was a good visit and then it was time to race home to pack the RV.

When Mikko saw the RV in the driveway he was very excited. When I saw it I was immediately concerned with how small it was. I thought it was going to be bigger. Maybe  I had in mind the huge one Mikko had wanted in the first place. It was hot and humid. Very hot and humid! Michael’s level of distress over the trip was hitting a new time high, Mikko was hanging out in the RV with Jeffrey, while Jon and I were doing all the work…or so it seemed. Somehow in the business of packing a brawl broke out with the three boys. We were not off to a good start. Michael finally got in the camper and said, ” I’m not sleeping in here. I’m staying in Sam’s house.” Jon and I didn’t argue. That is probably a good plan.

Did I mention the dog came along? I don’t know why I didn’t protest this a little more before we left, but you take your dog camping right? She would have fun swimming and running….   Syd, our black lab, was a complete nut case the entire ride! Tongue hanging out, hot breathing, pacing back and forth. Oh…and before we left she jumped up into the driver’s seat and made the horn honk. Saliva on my legs, my arms, the floor the table… Yes, the table. She kept hopping up and sitting on the bench of the table (This about did Michael in as he was trying to eat a sandwich at the table.). Then for some added excitement she would jump back and forth over the table from one bench to the other. All of this for over 4 ours. My teeth and jaw are sore today. I think I was clenching them the entire time!

When I was “talking” to Jon about our riding conditions (kids fighting, dog slobbering, RV rattling). His response was, “Did you think it was going to be any other way?! I knew it was going to be hell. That’s how it is. We are doing this for Mikko”. So I quit my “talking”, ignored the spilled pop down my shirt, with minimal grumbling… picked up the chocolate shake mess that had rolled and spilled all over (I was told this was my fault because I never told them that they should hold on to their beverages in a moving vehicle.)and prayed for patience.

We made it! We arrived in Walker around 10:30 and when Sam suggested we all stay in the house that night and set up “camp” tomorrow not a single one of us argued. Mikko was thrilled because Sam’s home is his all time favorite. (I tried to upload pictures of Sam’s house with little luck. Poor cell phone service. Some pictures may need to wait until we get home. Some uploaded …others didn’t. The picture of Mikko is in front of Sam’s house.) A shower and to bed.  Syd was in the RV and she had finally calmed down or exhaustion got the best of her. That’s a pretty fancy dog house she is hanging out in.

Tonight it is back to the rv for sleeping. More house guests are arriving this evening and they have dibs on the bedrooms. Maybe I can talk them into the RV.

For Mikko….We are all going to do our best to not grumble anymore. We want to make this a fun trip for him and us!

Love, Hope and Blessings,

Shelly

Yes! George has been found…more on that in a minute. The above pictures are of Mikko and George the 2nd. He was pretty excited last night when I told him George from Amazon was in my closet. He ran on his tippy toes (which he’s not supposed to be doing) and came skipping back. He threw him around a bit and then on closer inspection he remarked, “He’s different. His forehead’s too big and his ears are small.” Yes, yes and yes. I suggested we pinch his head a little because it was flatter than George’s. I squished him the best I could between my knees. That didn’t help much. “You got me this one just so I’d forget about George.”, he grumbled. No..but I suggested he may grow on him. George the 2nd then took a few punches to the head, which I took as a good sign. When I asked if #2 was going with us on the RV trip I got a yes. I took this as another good sign.

Then today at school my friend asked me if there was any news on George and if Id made any more calls. I hadn’t…it has been crazy busy getting ready for open house and the start of school. I’ve had good intentions. Today I made a few more calls to Helen DeVos Children’s Hospital. I just keep leaving messages. Then tonight after open house I decided to try and figure out again where we stayed that last night in the Upper peninsula of Michigan. I called and did my standard, “Did anyone in house keeping happen to find a stuffed Curious George?” with little hope of finding George. The woman on the other end didn’t miss a beat, “Why yes we do have George. Hold on a minute why I go get him.” I could barely keep it together why I waited. “We have him and he has a green wrist band on.”….  Me: “George! You really have George! Do you know how special he is…boo hoo… blab blab….boo hoo.   George will be in the mail tomorrow! Every Gegen was THRILLED!! (OK…maybe not Michael so much, but he was happy for Mikko. Now Jeffrey….he jumped up and down on the couch…) What a great end to my day! 🙂

Tomorrow I have work for 1/2 a day. Then I need to zip home and grab Mikko (while I’m doing that Jon and Michael are going to get the RV right here in Hastings!) head up to Children’s for his day 15 of DFMO lab tests, zip back home, stuff our stuff in the RV and head to Walker.

I’ve been waiting for this and tonight it happened:

Comments by Michael in no particular order:

*I don’t support this trip at all.

*It is my last weekend of summer.

*Let me stay home.

*Can I stay home?

*Come on Mom, in 14 months I’ll be applying for colleges…I can stay home by myself.

*Can I go up on Saturday?

*I don’t want to go at all!

*Hawaii was for family bonding. The RV is just a RV.

*I’m not going.

For the record he’s going (Help me!). It won’t be so bad…we are camping in Sam’s backyard in Walker. If the going gets tough in the RV…look for me in Sam’s beautiful log home. All five of us plus the black lab in an RV. I can already hear Michael complaining about the dog’s stinky breath. Can I drink beer in the RV while John’s driving? Is that legal? It’s going to be fine. It’s going to be fun. I can do this!

Wish me Luck!

Love, Hope and Blessings,

Shelly

Don’t forget to check out my CureSearch http://rpx.me/1/-B9o    Just 9 days to the walk!

Dear Curious George the 2nd,

I don’t know what to think of you just yet. When I went to get the mail late this evening I wasn’t expecting you to be squished in a bag waiting for one of the Gegens to discover you….but there you were. I was thankful Mikko was asleep when I let you out so I could assess the situation with out his eagle eye watching over me.

Honestly George I’m just not all that into you yet. Maybe you’ll grow on me…right now you are too shiny and new… too “bright”…. too fluffy. And what’s up with your eyes? They look like patches! George’s eyes were plastic and they hurt, when for some reason or another, George was smashed against our hands or head. Your right foot looks irregular to me. I can tell by looking at you that you have no idea what a hard knock life looks like. You look a little too “soft” for the situation you’ve been mailed into.

Maybe you’ll grow on us, but little Dude, you have some mighty big shoes to fill. Number one George was there for our darkest days. He was with Mikko during every hospital stay, scan and bone marrow biopsy. He went to Minneapolis Children’s hospital, Amplatz Children’s Hospital and Helen DeVos Children’s hospital. Mikko took him up on to the table for all 20 radiation treatments. While his hands were above his head, George was just close enough so he could touch him. Ginormous shoes to fill!

Now I realize you’ve probably have some concerns of your own. How could a family lose something so special…right? Ok..in all honesty it’s no secret I can be a little disorganized or scattered, but I swear George must have jumped out of my bag. Last time I saw him just his precious brown head and black shiny plastic eyes was peaking out of it. Maybe he was needed more somewhere else. Maybe his work with Mikko was done. Maybe he’ll still show up.

Time…we need time for all of us to get comfortable with one another. I’m sure you heard Michael and Jeffrey’s opinion of you tonight. They really are nice boys….Time…we’ll give you time to show us what you are made of and what you’ve “got”. I’m sure there is a reason you’ve come to our family…it just may take a while for us all to figure it out.

I’m going to put you away tonight and when I get home from work tomorrow I’ll present you to Mikko. Give him time and don’t be discourage by his reaction. He loved #1 George like crazy, but I’m sure it won’t be long until he’s swinging you by the arm and pile driving you into the carpet.

Love, Hope and Blessings,

Shelly

Yes…it is here, the night before my returning to work. How am I feeling? Relieved and excited to be looking forward to beginning a much more normal school year than last year (Knock on Wood, fingers crossed, salt over the shoulder.(.is there such a thing?). I’m excited to work with my first grade team and be a contributing team member. They have taken such good care of me and I am so grateful for them.

It has been a busy week here. All three boys stated hockey and they have it 2 times a week. It was nice to see that John is physically much stronger than when he skated towards the end of last season. He has expressed a little frustration with some of the drills and coming in toward the back of the pack. He likes to be first. He had one station today where they were playing a little 3 on 3 game. I noticed that one of the boys was making a point to trip the other kids with his stick. He made the mistake of tripping John. He was knocked down and the hockey stick started swinging in attempt to get the kid back. No Luck. He got up ran that kid down and cross checked the tripper with his hockey stick (Which totally would be legal in a high school lacrosse game….not so much in a mite hockey skills clinic.). Of course we talked about it….I hope the kid doesn’t trip him again! We have been working in on toning down the feisty spirit just a tad.

On Wednesday I took John to Minneapolis for his weekly physical therapy session. I was thrilled to learn that his flex in his ankles improved from 10 to 12 on one and from 8 to 11 on the other. We continue to work towards the goal of 15 – 20. Skating should help his ankles.

After physical therapy we stopped by the Star Studio in the hospital. This is where they broadcast the kids clubhouse shows for both Minneapolis and St. Paul Children’s hospitals. John spent a lot of time enjoying these shows (playing bingo, calling in to the show to answer questions) when he was a patient. On this day he got to sit in the audience. The Dude (the host of the show) was excited to see John and told him he’d been waiting to give him something special. He had a hockey puck signed by the WIld mascot Nordy and by Brad Bombardir. John was so excited! The Dude also gave John a WWE wrestling guy. We stayed and watched the whole show. They do a daily poll between 2 different things. It could be songs, shows….on this day it was characters. “Who do you like best The Cat in the Hat or Curious George?”. John and I just looked at each other like, “Oh George!” Still no word or signs of John’s beloved Curious George. He is handling it well. Tomorrow I am going to try and get a hold of the Child Life Specialist that worked with John in Michigan see if she’s seen him.

Today was the last day for Hastings pool to be open. John and I went one last time. The two of us have spent a lot of hours together there. Today we both hit all of the slides several times. We went fro that pool over to our friend Jodi’s pool for even more fun. Perfect fun for a hot day.

I have special prayer requests that are needed from Team John. One is for a Lilah who is 14 months old and was just diagnosed in July with stage IV Neuroblastoma. Jon and I know too well what her parents are experiencing right now. We pray her little body responds to treatment as well as John’s did.

The other prayer request is for Christopher and his family. I learned the other day that there is nothing further that can be done for Christopher. His family flew him from Michigan home to Vermont. Tomorrow on what should be his first day of second grade….Christopher begins Hospice care. His mother Kristen has been so strong. They have fought like crazy, traveled to many places, sought after the best of the best in doctors….they did everything they possibly could for their son. I am absolutely heartbroken for this family.

I haven’t followed too many children with neuroblastoma. There are just too many sad outcomes and when I read them, they put me in a deep funk. I found Christopher’s site and I was drawn to his mom and how she wrote from the heart. If she was furious she wrote it. If she was happy…she wrote it. She is a fighter and come hell or high water…she was going to go anywhere and do anything to save her son. And she did everything she possibly could. I hope she can find a little peace in knowing that. We started corresponding via email and it was from Kristen that I learned of the hope of DFMO. It was she that encouraged me to look into it and Dr. Sholler.

Huge prayers for comfort and peace.

Each and every day is a gift.

Love, Hope and Blessings,

Shelly