RV Day 1

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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

Breaking News…….George has been found!!

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20130828-235942.jpgYes! 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!

You’re not our George….Yet

20130826-230100.jpgDear 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

Hockey, Physical Therapy, Pool and Back to Work!

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

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George…Where are you?!

Buddies hanging out in June before Hickman line is removed.

Buddies hanging out in June before Hickman line is removed.

Afterwards....see the wristband?

Afterwards….see the wristband?

Curious George, John’s ever so special stuffed animal is MIA! He was last seen in Michigan and I have been hoping his little brown head would pop up one of these days. He was with us in the sedation room where Mikko told me that he didn’t need him that day (Broke my heart just a little) and I placed him in my purse/bag with his little head sticking out. That’s the last I remember seeing him for sure.

Tonight Mikko was looking for George and I had to break it to him that George was missing. That was a sad conversation. Mikko said, “but George went through cancer with me…20 rounds of radiation”. George has been with him every step of the way. During each radiation treatment when Mikko had to lie with his hands above his head…it was George his hands felt as he was on that table. George was there to give him comfort.

I also got a , “When were you going to tell me George was missing mom?” When his dad told him that Kohl’s has Georges on sale right now and he would get him a new one tomorrow Mikko was not happy….”Do you think you can just go and get me another George?!” Man…  We couldn’t even do the not tell him and give him the new George because his George had a special hospital wristband on that says “Curious George”.

I called the hotel and left a message with housekeeping. That is my first call and then it will be on to the hospital.

Obviously Mikko was traveling with parents that weren’t able to think straight during the Michigan trip! Between the lost medication bag (which was recovered the day after it was lost) and now George…. Each parent was responsible for one of the lost items. I wish I’d been the one that misplaced the medication. 🙁

Tomorrow the hunt for George will continue. In between phone calls to try and locate George there will be a trip to Minneapolis for physical therapy (Hmm… could I somehow get one of those hospital wristbands) and 8th grade orientation for Jeffrey. 8th grade?! Crazy how time flies.

Love, Hope and Blessings,

Shelly

Michigan Day 3 and Home Again!

Mikko insisted that we stop downstairs in the hospital to get an ice cream cone before heading North. He ate it all!

Mikko insisted that we stop downstairs in the hospital to get an ice cream cone before heading North. He ate it all!

P4 Parking RampHelen DeVos Children's HospitalOn Friday we didn’t need to be to the hospital until 11:30 so we had a calm and comfortable morning getting up and out the door. We packed, ate breakfast, loaded the car and made the 5 mile drive to Helen DeVos Children’s Hospital.

As we rode the elevator up my mind and prayers went to Christopher that had a scheduled MRI at 11:00 that morning. We were going up to receive good news and they had rode down and later I learned that his parents had been told devastating news. Please continue to pray for Christopher (Brooke too!) and his family.

Yes! Laura the research nurse had told us that Mikko’s bone marrow scans were great! We then were given the DFMO Diary with information and a log for keeping track of the daily meds. Mikko receives 3 “vitamins” in the morning and 3 at night. We tried to get him to swallow them…..that didn’t work out so well. The trusty pill crusher came out and the medication was crushed and mixed with juice. We will work on the swallowing.  On August 30th Mikko will go to see Dr. Walrus to check his blood counts and then after that it will be once a month. Every 3 months he will go in for scans in Minneapolis to make sure he remains NED. If a child relapses they are off the study.

On Thursday I did have time to ask Dr Sholler a few questions. Currently there are 22 children enrolled in the study. 10 children have just past the 1 year mark and are still NED. Without the DFMO they would’ve expected 3 or 4 of those children to have relapsed.

How does DFMO work? This is from the DFMO binder we were given….DFMO is an oral drug that inhibits Ornithine decarboxylase (ODC). ODC is an enzyme that helps make polyamines in our bodies. Polyamines are believed to be “building blocks” that cancer cells need to grow.  Polyamines are found in certain foods. High polyamine levels and increased ODC activity is commonly found in neuroblastoma as well as many other tumors. Research has shown that DFMO reduces ODC activity and helps to block polyamanie production in cancer cells, potentially inhibiting cancer cell growth.

Because DFMO works to inhibit polyamanies, there are certain foods that they would like Mikko to avoid eating (Foods with high levels of polyamines.). This is a suggestion. It is not required. Here is a list of the foods: (Click to enlarge)

20130817-214608.jpgWhen I talked with another mom she told me her family totally avoids the foods at the top of the list (Grape fruit, oranges and orange juice) and eat the others in moderation. Bananas are high on the list and I’m always shoving those Mikko’s way. We will need to change our eating habits some. Dr. Sholler and the nurses told us not to worry too much about the list, but keep it in mind.

When we left we stopped downstairs so Mikko could get a chocolate mint ice cream cone and Jon his portobello mushroom sandwich (gross). We were then on our way  and if luck is on our side, we won’t need to return. Our plan was to head north and cross the Mackinac Bridge and take the long way home. Well we did cross the bridge…in the dark of night…so we saw zip, stayed in a “sketchy” motel, got up and hit the road. We got home around 4:30 this afternoon.

Mikko was thrilled to see his brothers! He had Jeffrey playing with him in no time and he hit Michael up for a game of football on Xbox.

This evening when I was in the kitchen Mikko came up to me and asked, “Mom, can we get Summer Slam?”.  Summer Slam is the WWE pay perview wrestling show. I shook my head no and he stated, “What? I’ve been through 20 rounds of radiation, 6 rounds of chemotherapy, a stem cell transplant, I went to Michigan…..(long pause) Wait a minute.” He then ran over to Jeffrey and I heard him whisper, “What else?”. They were in no the guilt trip together! I said no again and I told him to go ask his dad. I have a feeling that we will be paying for Summer Slam. I informed Mikko that he used his “treatment statistics” for the last time to get what he wants. His response, “What? I did do all that!”. Yes you did my dear, yes you did.

Tomorrow all 3 boys start their fall hockey clinics! Jeffrey and Michael will be playing 3 on 3 games and Mikko has skills clinics. This evening Jon and the boys were going through hockey gear, making sure everyone was set. Mikko needs a new stick because his old one is now too short.

We are thrilled to be home and so thankful that Mikko is able to participate in the DFMO study. It is a blessing that he is NED and we fiercely pray he remains that way.

We keep on keeping on!

Love, Hope & Blessings,

Shelly

NED! Clean Scans and Bone Marrow

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I am sorry that I didn’t update yesterday with the wonderful news that John is still NED. We are on the road in the Upper Peninsula of Michigan
with poor cell device. We have the DFMO and are heading home.
Our prayers have been answered once again.

Love, Hope and Blessings,
Shelly

Michigan Day 2

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We received the wonderful news late this afternoon that Mikko’s scans are clear! We have to return tomorrow for the bone marrow results, but we are feeling confident toes will be clear as well.

Here is a recap of our day:

Jon and I woke up early and packed our hotel room up for at this time we still thought we were heading towards home after our 12:00 appointment. We woke Mikko up……

WAIT! I need to back track to last night right before we were going to bed. It was about 10:30 and I was getting Mikko ready for bed. I went to grab the sterlite container with his medications in it and it was gone! We obviously had left it somewhere at the hospital earlier in the day. Panic started to set in. I needed to give Mikko the Lugol’s (strong iodine solution) he needed to yet take that day. The Lugol’s protect his thyroid from the scans. Phone calls were made to security at the hospital to check the lost and found ….nothing there. I then remembered I had a new prescription in my bag that was sent to us from Mikko’s doctor in Michigan. The new mission turned into finding a 24 hour pharmacy to fill the prescription. ( All the while in my mind I’m thinking we’ve come all this way and now there will be no scans because we lost the medication!)

I quickly stuffed Mikko into some clothes and at 11:30 out the door we went and we were on our way to Walgreens. At this time in the search Mikko found the events entertaining. The pharmacist at Walgreens was wonderful. No he didn’t have that medication, but he got on the phone and made call after call to other pharmacies in attempt to get our hands on the Lugol’s….with no luck. He wished us luck, we were out the door and by now it is midnight and my level of panic is increasing. I’m in a class half empty mode, Jon’s is half full ( He continues to reassure me that we will get it.) and Mikko jutted wanted a baseball glove he spotted at Walgreens. No glove…as I was dragging him out of the store, I reminded him that hockey starts on Sunday. He didn’t care.

Now what? Desperation is setting in. I’ve pleaded and begged to countless people on the phone with zero success. My glass is almost empty….I tell Jon to take us to the Emergency department at Helen DeVos Children’s Hospital. Mikko finds this information really interesting…his ears have been “perked up” on this midnight run. He wasn’t going to miss any of it! We pull,up to the ER and we are met by a security guard, a valet Parking guy, and a nurse ( They don’t mess around here!). I immediately get out of the car and begin rambling ” I don’t have a medical emergency. My son is fine. He’s in the car I have a medication emergency.” What a doorknob! A medication emergency?! The kind people let me in the ER, listened to me, made several calls, and after about 1/2 an hour hooked me up with what we needed. Thank you! Thank you! When I got back out to the car Mikko was sound asleep, which provided a whole new dilemma of getting the medication in him, but we did at around 1 am.

Back to today:
We checked out of our hotel room and headed to the hospital. Once again Mikko amazed us by seeming to not have a concern as he talked and was happy on our way. Myself on the other hand, was a little worried because in that lost medicine container was the tube if cream I rub on his arms to numb the place were he will get poked for an IV. Boo!

We got to sedation and Mikko watched the Avengers while waiting for his IV. They had some tricks up there sleeves there and it easily and with only a few tears was quickly placed. We then waited for quite a while before taking the long and confusing walk to the radiation area. At this time Mikko begins saying over and over to me, ” Mom….you are so mean to me,”. Obviously he is becoming anxious, understandably so….but man, each one of those comments dig right into my heart. We get there and the nurse suggests I take Mikko into the restroom before they start. We get in there, he says that comment to me again and I got down on my knees to his eye level. I placed my hands on his arms and I said, ” Please stop saying that to me. I need you to stop.” Nothing like begging… I let go of him, stood up and I heard a very pleasant , ” I love you mom.” I loved him back, he peed and we were on our way and I didn’t hear those hurtful words again today.
He was quickly sedated ( this never gets easier for Jon and I to watch) and we were told we would be paged in about two hours.

The hours when Mikko is away being scanned or having bone marrow biopsies are some of the longest hours of our lives. I pack things for us to read. They always remain untouched. Mostly our time is spent sitting near each other, watching the people walk by, willing the time to pass quickly. Jon’s glass is half full still today and mine is becoming half empty again with fear and what ifs. My comments are quickly cutoff by glass half full guy and thankfully so. He’s not going there and he keeps me from letting my worries go there….well out loud anyways. We both know too well that life can change in an instant. So we sit mostly in silence….until the pager goes off and we beat it down the halls to get to Mikko.

In the past coming out of sedation has gone smoothly. Not today! He was ticked off and not very pleasant. With time his temperament and eye site (he couldn’t keep his eyes open:) ) improved and we went up to the clinic to meet with Dr. Sholler. Here is when we learned for the first time that we needed to come back to the clinic tomorrow. I had wondered how they were going to get the bone marrow results so fast….I should have followed my gut and asked..no big deal. We are here to get Mikko in the study and we’d stay as long as necessary. Dr. Sholler showed us Mikko’s scans and she said they looked great! Tomorrow we will hear bone marrow results, which are expected to be great, get a little education, Mikko will receive his first dose of DFMO, and we will be on our way. Probably only part way home since it will be the afternoon before we leave, but who knows…part of me wants to bomb home. I’m missing Michael and Jeffrey like crazy.

We went back to the hotel, checked back in, hauled our belongings back upstairs and just hung out tonight. It was a long day. We were at the hospital from around 9 until 4:30 and worth every minute of it!

Thanks for keeping our little hero in your prayers. More tomorrow

Love, Hope and Blessings,
Shelly

Picture 1: Mikko after his IV placement
Picture 2: Mikko with Dr. Sholler

Michigan Day 1

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I had meant to give a little update before we even left Hastings for Michigan, but it just didn’t happen. I was busy that evening running errands and packing. Jeffrey called from his friends’ house that he had planned to stay over for the night, but I got a call to come pick him up at 11:00 that night. He wanted to come home. When I asked him why he said he wanted to see us before we left. I picked him up and then both he and Michael were up late with me talking about really nothing. I gave up on attempting to journal and went to bed.

I know we are all a little nervous. Earlier in the day I talked with all three of the boys (separately) about why we are going. Both Jeffrey and Michael know it is to enroll Mikko in the DFMO study, but we talked about why Jon and I feel it necessary to do it and that hopefully it improves the odds of the cancer not coming back. When I attempted to at to Mikko, he gave me a grumpy, “I know Mom!” and I decided to end the conversation for the time. It’s a lot of all of them.

After the hospital had told us that siblings are not allowed to come to the appointments we decided to leave the kids at home rather than in a hotel room unattended. So the three of us hit the road on Tuesday morning. A friend loaned us her ipass card that allowed us to drive through the toll booths around Chicago (8 of them), saving us time. The trip took a little over 9 hours and it wasn’t bad. Mikko didn’t sleep a wink that entire time. He watched a few movies, played on the iPad, and kept his eyes peeled for yellow cars.

We got to our hotel around 6 pm. When we pulled up Mikko was surprised we were parking our own car and when he peeked out our room window he cupped his hands together and “booed”. I guess the parking lot view stinks in comparison to the beautiful ocean front view from our last hotel stay! 🙂 I told you we were spoiled by Make A Wish!

This morning we woke up ate, a quick breakfast and headed to Helen DeVos Children’s Hospital. What a beautiful facility that is! It opened on 1-1-11 and it is pretty amazing. The pictures of Mikko are from there. Jon and I were very pleased with everyone we met today, even the audiologist! ( She even looked in Jon’s ears! 🙂 Tomorrow Mikko will be sedated for scans and bone marrow biopsies and then we will meet with Dr. Sholler. We didn’t meet her yet today and I’m looking forward to it. Parents from all over the world bring their children to receive treatment under Dr. Sholler’s care.

Today was the easy day for Jon and Me. Nothing too scary today….all of Mikko’s blood counts were great. He was a trooper through the IV placement and it took 2 tries. He loved the playroom and continued his new love of snapping his own pictures. Tomorrow will be more stressful for us.scans in the morning and results around lunch time. Could the bone marrow results be back so soon?! Our guts tell us the results will be clear, but there is always that fear. It isn’t called scan-anxiety for nothing!

We have absolutely nothing to complain about. While we are at this hospital for a positive reason (our son is NED (power of positive thinking …right?!) and hopefully will start taking medication tomorrow that will keep the nasty crap away. At the same time there are 2 families I’ve been following that are in the same hospital fighting for their children’s lives. Both had been NED..Both are around the same age as Mikko….Both families are living the nightmare of stage 4 high-risk Neuroblastoma. Christopher and Brooke are in need of prayers from Team John.

Tomorrow afternoon we will begin the trip home, stopping somewhere along the way for the night. Hopefully we will have a 3 month supply of DFMO with us.

Thank you for your endless love and support as we continue on this crazy journey we call life.

We keep on keeping on!

Love, Hope & Blessings,
Shelly

Our Last Day in Hawaii

(Note: As I read previous posts I see that I have once again been mixing up Jon & John. It was John that had slept into 11, not Jon. I’m going back to Mikko for John.)

The last day of our trip was on of my favorite days. Captain  Tim called us bright and early at 7 am and told us it was a “go” for snorkeling. Our trip had been cancelled the previous day due to Tropical Storm Flossie and I was thinking we weren’t going to snorkel at all. We were all excited after the call. We got ready headed towards Kona. When we got to the harbor I had asked a boat if they were our charters. A guy on the boat informed me that our boat is the one pulled by the ambulance and he wished us luck with a laugh. Funny guy…

They were running a little late as a new part was put on the engine and they needed to take the boat for a little test drive. I’m thinking “great”, but keep the thought to myself. On this trip was the Captain Tim, helper guy Randy, a couple from California and the Griswolds…I mean Gegens. I had envisioned the boat being larger, the ride smooth and the majority of our time in the water. The boat was ok, the ride was super bumpy! It’s a good thing Jon, Jeffrey, Michael and I took Dramamine and Mikko’s chemotherapy nausea wrist bands came in handy. It is unbelievable to me that everyone felt well.

The our goal was to get 14 miles down the coast to Captain Cook’s Cove for snorkeling. Along the bumpy way we learned a little history of the island and saw many beautiful sites (I was soaking wet from the start from all the waves splashing up and over the boat! After about 1/2 we saw some spinner dolphins and the captain stopped the boat for whomever wanted to get out and swim with them. Mikko and I passed on this opportunity. The guy from California was an experienced snorkeler and he was off with the dolphins before we knew it. And then there was Jon, Michael and Jeffrey….(I know for a fact that if they had watched Shark Week before this trip like they’ve been doing all this week..they wouldn’t have even gotten in the water.)

Michael: He doesn’t bother to stay and really listen to the instructions all the way through because like most teenagers…he thinks he knows how to do it.

Jeffrey: I look and see him getting gear and I’m a little nervous. I really didn’t think he would go in way out where we were.

Jon: I look and panic a little, “You’re not going in?!” Yep, he was going in.

Michael was in first and then I didn’t quite pay attention to him because there was an issue with Jon trying to hep Jeffrey in the water. Jeffrey was complaining that his mask didn’t work, he couldn’t see, he couldn’t breath…before I knew it those two were back in the boat. Then all the sudden Michael is swimming up fast! Captain Tim said it looked like he was “freaking out”. Michael aggressively climbed into the boat and immediately whacked Jeffrey with his swim noodle. All the while the California guy is swimming with the dolphins. There the 3 Gegen guys sit on the back of the boat and get “a talking to” from Captain Tim. It started something like, “I can tell you aren’t comfortable…” and then he went on to tell them what to do, which would have been more helpful earlier, but I think he was under the impression they knew what they were doing. He then positioned the boat once again near the dolphins and told them all to get in quickly. They all 3 jumped! All that was missing was the warrior yell of Geronimo! The dolphins didn’t stick around for that. Back into the boat, another lecture, back in the water and a little success with the dolphins.

We finally reached the cove. I could have stayed there all day and I really believe if we had done this earlier in our trip we would’ve done it again. The Gegens had finally settled down. Jeffrey and Michael were actually snorkeling face down kicking with their hips, not their knees. Jon was in the water and Randy and I were trying to coax Mikko into the water with little luck. Jon swam over and I got in, leaving him to work on Mikko. Before I knew it they were in the water. Mikko had on his fins and mask and was taking big breaths to look into the water.

The fish, coral and water were absolutely breathtaking! Colorful fish of all kinds were everywhere! We all loved it there! Mikko caught up to me and we held hands while we swam, floated and  looked at the beautiful fish. If he wanted me to look a certain direction he would poke me in the side and point underwater where I was to look. The kid can even boss me under water!

The bumpy ride, the 3 Stooges attempting to swim with the dolphins was all worth it! We climbed back into the boat for lunch, snorkeled a little more and then headed back up the coast. Mikko was so tired he fell asleep on the way back missing the spinner dolphins following in the boat’s wake.

When we got back to our hotel the guys took a break and I walked the grounds taking a video so we could always remember the views we had. Later Jeffrey, Mikko and I headed to the pool for one last swim and then it was time to go back and pack our things up. Boo!

Our flight wasn’t scheduled to leave until almost 10 that night so we had plenty of time to pack, go have a quick dinner, return the rental car and head to the airport. We knew before hand that our flight was running late, but we decided to hang out at the airport. It is unique as it is mostly an outside airport. Mikko slept all the way from Kona to San Francisco. We got off the plane there and right onto our next plane. Mikko then slept all the way from San Francisco to Denver and the other boys slept a little here and there. Jon is by far the worst flier…anxious and at times a tad crabby. He didn’t sleep at all. When we got to the Minneapolis airport 3 volunteers from Make A Wish were there waiting for Mikko and the rest of us. I almost burst into tears when I saw them…Tears of huge heartfelt gratitude for an amazing dream come true for all of us. It was all just so perfect! They walked us to our waiting limo and sent us on our way home to Hastings.

IMG_1190 IMG_1188 Causing a little trouble Waiting in Denver!John, Rachel and the other Make A Wish VolunteersIMG_1193What an amazing gift from Make A Wish! Each and every expense was covered all we had to do was worry about having fun and boy did we have fun! Thank you Make A Wish!!

I’m not proof reading tonight…too tired!

Love, Hope & Tons of Blessings,

Shelly