Happy Thanksgiving

I was spending some time skimming over some of my previous Caring bridge entries. When I came across the one from Thanksgiving I knew I wanted to repost it, because it is all so true. We are one very blessed, a little messed up, family. 

Here is that post from last year:

Happy Thanksgiving! The Gegens have so much to be thankful for.

 
We are thankful for the quick diagnosis and move to treatment for Mikko..all his doctors, nurses and technicians.
 
We are thankful that we are the parents of three wonderful boys. Each blessing our lives in their own special ways.
 
We are thankful for each and every day that we have together as a family.
 
We are thankful for our parents and siblings, that are willing to drop everything and help us out at a moments notice, watch John boy, take him to appointments, …for being there for anything and everything.
 
We are thankful for our friends, neighbors, community, colleagues, and careers….your support and kindness carry us through each day and gives us the strength and courage to keep on keeping on!
 
We are thankful for our faith and all of your prayers…showering our family with loving and healing thoughts.
 
Never again will I look at Thanksgiving as just a holiday where we get together with family and have a long weekend. I get it…It is so much more. 
My additions for this year:
We are thankful that out 7 year old is NED!
We are thankful that we are running around like crazy to get to hockey games and practices for all 3 boys.
We are so very thankful that we are living a life closest to “normal”  since April of 2012. (This time last year John was at about round 13 of radiation.)
We are thankful that there is hope to help prevent relapse with the DFMO drug.
We are thankful for healing ankles and leg muscles that were weakened from chemotherapy….for hearing that is not perfect, but good.
We are thankful for the amazing opportunities that have so graciously been given to us from Make A Wish, Children’s Hospital, The Minnesota Wild, Hope Kids, Total Hockey, friends, family and people that don’t even know us.
We are thankful for our friends and family that planned and organized like crazy for the Light the Lamp for Mikko benefit…for everyone that helped, that made donations, that came that night…because of all of you it was an amazing evening …a demonstration of love and support.
We are THANKFUL….stuffed full of GRATITUDE!
We wish you all the best of times with your loved ones tomorrow as you gather together.
 
With heartfelt thanks we are so grateful to have all of you in our lives and with us on our journey.

 (The last 2 sentences are also from last year’s entry.)

Love, Hope and TONS of Blessings to you all,

Shelly, Jon, Michael Jeffrey and John

I believe sometime a person has to bottom out just a bit in order to begin the climb back up to brighter days. During my last post I was pretty low and I know it came across loud and clear. Thank you for hanging in there with me and I am thankful that I have a place where I can “let it all out”.  As a result of my post I felt love and support through messages, arms that embraced me in hugs, words of comfort and understanding ….all of which I am very grateful for.

Our nurse at the clinic left us a message the other day. She wasn’t sure if anyone had returned my call about John’s urine counts. Her message said something like,”John’s urine tests are perfect, John’s is perfect, his parents are perfect”. Her message put a smile on my face because she always seems to know when I need a little reassurance.

I am feeling a little more at peace, but I still find myself studying him..eye-spying for any signs of trouble. We were playing checkers the other night and I believe I may have been staring at him. John finally said, “What?!” in an irritated tone. I need to back off and relax a little more because John is an excellent read of his mother. If I’m worried, he’ll worry.

Hockey, Hockey, Hockey! All three boys’ seasons are in full swing. Most days at least 2 of them have hockey. Thankfully Michael can drive himself to practice and when he is able, will help getting Jeffrey to and from practice. On Sunday both John and Jeffrey had games…one in Hastings and the other in Burnsville. Lots of helpful hockey tips are offered by their father…to all 3 of them!

Hope Kids – On Saturday morning Jon, Jeffrey, John and I headed to Sky Deck at MOA for Cookies with Santa (Michael had to stay back to catch the bus to his hockey game.). This was a wonderful event sponsored by Hope Kids, free to families. I was only able to snap one quick picture of Jeffrey and Jon…Jeffrey has been stuck in this phase of closing his eyes. Hope Kids will post their pictures soon. I am keeping my fingers crossed that there is a better one there.

John was very nervous about talking to Santa and agreed to just cooperate for the picture. Earlier in the morning he asked me if Santa could see him right now. When I said yes, he quickly began reciting is “wants” out loud. 1. To Go to the Wild vs Ranger game in New York. 2. Go to the next Wrestle-mania and airline tickets to get there. 3. Every wrestling guy he doesn’t have. When I told him that Santa doesn’t grant Make A Wish wishes he disagreed and pulled the Santa’s magic card. I quickly realized that his Make A Wish trip has set his standards sky high and it is going to take me from now until Christmas to bring him back to reality.

After the pictures with Santa we had passes to play video games and then we even squeezed in a game of bowling. All was going well until Jon’s score got higher than John’s. (I’m sure…a 7 year old thinks he should beat his dad!). Jeffrey and I tied, BUT he used bumpers. Yes, I’m telling everyone he used the bumpers. It’s a good thing I only played one game because my stupid foot and my hip (another dance injury) are still bothering me. How ridiculous is that?

Tonight I jumped in the hot tub with John and Jeffrey. Jon just got it up and running last weekend and Friday was the first time since March of 2012 that John was able to get in. With his hickman line, the hot tub was a huge NO! It is not the most relaxing atmosphere with 2 boys, but they love it. I got voted to go in because Jon was watching the Wild game. I only hesitated for a moment because I had just gotten home from my haircut and then joined the boys knowing full well that my hair was doomed. It was maybe 2 minute tops before Jeffrey went to do a huge arm swing of water towards John, missing him and hitting my full blast in the face and head.  I didn’t need to worry about my hair anymore. 🙂 The hot tub endures a lot of horse play, but I like our time in it because we have the best conversations there.

Back to that staring at John. To me he has looked a little different lately…hence the staring and trying to figure it out. This weekend when I was loading some of these pictures I noticed his eyelashes are a lot thinner. So there I was on Friday, late into the night, going back and looking at pictures since his hair has grown back in, trying to put my finger on what I think I am seeing. Ok…the other night I even used the flashlight app on my phone to check his lashes out while he was sleeping. They are there…maybe less…maybe lighter. As I loaded the pictures on to this post, I again was struck by his eyes. I finally mentioned this to Jon and he agreed saying he has noticed it for a while. John’s hair also seems to be a little thinner and it wasn’t thick to begin with. This conversation sent me to get the DFMO Drug Diary we keep for recording that meds were given and it has information for us. One of the possible side effects of DFMO….hair loss. We see Dr. Rawass the first week in December, but I may just leave a short message letting him know what we are seeing. So far this is the only possible side effect that we’ve noticed. The list of possible side effects include:

Fewer red and white blood cells, diarrhea, decrease in platelets, skin rash, hair loss, nausea/vomiting, hearing loss, loss of appetite, abdominal pain, dizziness, headache

Hair loss….something new to think about. Hair loss vs increasing the chances of staying NED…

Time to head to bed! Have a great week!

Love, Hope & Blessings,

Shelly

What Gives?

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It seems like forever since I’ve posted…partially because we are crazy busy with kid stuff, like all of you, and maybe mostly because I’m a tad bit “testy” lately. I know I am and I just can’t help it. I’m frustrated with myself because I know it’s a total waste of time and energy. I’m frustrated with myself because I KNOW I have so much to be grateful for. So what gives?

CT Scan? Is it that stupid spot on John’s scan that looms over my every thought? The day after John’s doctor appointment I went over his blood and urine results all the way back from April 2012 (I’m not even sure if my husband knows I was up late into that night reading, recording, comparing.). Let me tell you….there are a boat-load of tests to go over. I was looking for the urine tests for his HVA and VMA levels. These level rise in all of us after certain foods are eaten, neuroblastoma cells secrete a higher level and these tests are used as an indicator. When I looked all the way back to John’s diagnosis in 2012 his blood counts weren’t remarkable, but his HVA and VMA were elevated. Of course the day after I was scouring these numbers and waiting for the most recent ones to be posted, I received a call from the clinic to let me know the results were well within the normal range. This awesome news did put my fears a little at ease. So what gives?

Time? Is it that I have the time to worry, worry, worry?. When we were all consumed and in the active fight against John’s cancer and getting him through treatment, I was focused on that day, that fight, checking one more thing off his Kicking Cancer’s Butt list. Now I am in this holding pattern of crossing my fingers, praying like crazy, wanting to appreciate each and every day….but there it is…that dark, pesky cloud of worry.

Questions? Is it the questions from John, that I have tried so hard to avoid, that have come up several times this week at bed time? It started on Monday night when John had asked me when our neighbor Marty had died. I’m not really sure where this comment came from. That kid’s “wheels” are always spinning. Maybe it’s because he’s been working on learning the Lord’s prayer for Sunday school and all that dissecting, (Our Father who art in heaven… “You mean Art like Art class?”). I don’t know, but there they were…the tough questions. In a huge nutshell he asked me if children can die. When I told him that people of all ages die he wanted to know how. I told him one way is by an accident. Of course he wanted an example and I gave the poor one of if we were playing out in the yard and a stampede of elephants came running down the street. He was less than amused and I quickly realized he wanted serious answers. This conversation led to him asking who he would be with in heaven, who would take care of him, would he sleep in heaven. As he laid in bed, those big brown eyes melting my heart… I answered the best I could.

Pissed? Yes pissed…Is it that I am angry? I am angry that my little boy has to think about dying? I am angry that there is this constant worry. I am angry at myself for being angry when I should be thankful for every day…each and every moment. I am angry at myself when our family has a happy and healthy John and we know of far too many families that have lost their children. I know somewhere there is probably this list of “Stages of….” and this is probably like step 6 of 12.

I better just pull myself up by my bootstraps because this is our life, our new, new normal. A life of living for every three months until the next round of scans can give you hope for another 3 months.I know I’ve said in the past that I hope I have my whole life to worry about John, because I desperately want him to beat all the statistics and as long as he is winning…I will forever worry.

I’ve read all those quotes about worry “Worry is a total waste of time. It doesn’t change anything. All it does is steal your joy and keep very busy doing nothing.”…and a bunch of others….I just wish I could live by them.

*I sat here for quite a while tonight wondering if I should post this entry. Again with the worry…. Would I offend parents that have loss their children? Would I offend parents in their fight for their children? Would I worry my friends, my family? I decided to post this because I haven’t held anything back yet ….you get it all…the good…the bad…and the ugly.

Tomorrow is a new day and I’m going to do my best to appreciate it, make the most of it and work on living a life full of gratitude and a lot less  fear. Wish me luck!

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Love, Hope and Blessings,

Shelly

The picture of John is of his disguise for his turkey. 🙂

Scan Day is Over!

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“Imagine going before a judge every three months who could arbitrarily decide your fate. That’s kind of like scan week for cancer parents – our families live life in three month increments and our future is held hostage by scanning machines at our local Children’s Hospitals…” I copied and pasted this from Patrick Lacey’s FB page. He too is facing scans for his son this week. As I read his thoughts, I thought how true his statement is.

The Gegen’s and our extended family do live our lives in three months increments. Just give us great scan results today and we’ll be able to live the next 3 months without as much worry, although some level of worry is always, always there. Receiving the great scan results give us the strength to pick ourselves up off the emotional floor of scan week and face the next 3 months with as much optimism we allow ourselves to have.

John’s MIBG scan came back “Normal examination without evidence of neuroblastoma”. Beyond thrilled about that! I just about passed out during his MIBG because after he went through the 45 minute scan, they came back and said they wanted to do his pelvis area again. This news sent my mind racing. How many times had he had a MIBG scan and only once did they redo a spot, his pelvis? Just that first time when he was full of cancer. What a relief to hear all his bones were clear!

The CT scan threw me today too. They did his chest and tummy like always and I thought he was done. Nope… they were going to do his head. They’ve never done that before and I said as much. The test had been ordered so it was done. We did learn his brain and skull are great. 🙂

The doctor that read John’s scans noted that there was a spot on his lungs that hadn’t been there before and to watch this area. Dr. Chu told us right away that this “area” was not a concern to her. In fact, she wrote “not worried” in pen right on the report. She also commented on the fact that some of John’s counts were off most likely due to his cold and that is probably what is causing the change in his lungs as well. We were told that sometimes they don’t image a patient for those exact reasons. When John left the room to go to the restroom I was told to “%100 not worry”.

Of course I got home and over analyzed the documents, reading and rereading… I finally called our nurse back and talked with her. I feel some better…she is always so patient with me.

The news today was good, but I would have liked for it to have been better, but this is my life…John’s life…our family’s life. This is the life of a parent of a child that has/had cancer. I know scan week will never ever get easy! I pray I have the rest of my life to worry about John!

To be honest, I am totally exhausted today. Jon and I both know that everything can be turned upside down with one doctor’s appointment. I asked him today how much he thinks we’ve aged through this process. My husband does his best to remain the strong one, but I could tell today that he too was consumed with anxiety and worry. He is already well versed in Dr. Chu once again, ” Shell, Dr. Chu is not worried, so we shouldn’t be.” Yes, that will be the phrase to carry us through the next 12 weeks…until the next set of scans.

You know who’s not worried? John! He sailed through it all like the champ he is. Not a peep during the IV, was still as a statue for his 55 minutes of MIBG scan, and he skipped his way through Cassetta’s. Our youngest is an expert at taking life one day at a time.

The Youtube video below is for my champion…John, for Alannah whom was at the clinic today when we were (It was nice to finally meet you Angie!), Abby that was upstairs on the 7th floor we know so well, Lilah,Mathew, Braden,Sienna Joy, Christopher…all the children and families that continue to “brush off the dust” and keep getting up. Champions…each and everyone.

Love, Hope & Blessings,
Shelly

Weekend Gone…Scan Week Full Speed Ahead!

Hanging out at the park

John and I spent Friday night and a good portion of Saturday home alone while Jon and the big guys headed out for a short overnight hunting trip. It was quiet at our house and it was wonderful to have that time alone. On Friday afternoon we were both so tired we snuggled and watched cartoons for quite a while. Then he decided he wanted to read like crazy to record books on his reading chart for school. 20 books later I finally got him to stop. We headed down to the basement to watch The Croods to end our evening. On Saturday we headed to the park where John practiced the monkey bars so he can successfully show Jeff, his physical therapist, on Wednesday (This was a PT goal!).

Jon, Michael and Jeffrey had a good time as well. Not a lot of birds were seen, but they managed to get one. I’m still not sure if it was Jon or Michael that “got” the bird. It appears everyone got along and memories were made with the fire alarm going off in the hotel and Michael’s panic about it in the early morning hours and somehow the dog ended up in the breakfast area. Yes… the place where people eat their free breakfast.

Hockey started up this weekend for Jeffrey and John. Jeffrey’s team did well in their scrimmages and John enjoyed his first day. We are back into the swing of at least one kid having something going on every day of the week. I am thankful Michael can drive himself these days!

And….Yes, it is scan week. 3 months scans are this Wednesday. Jon will take John to get his IV injection for Wednesday’s scans on Tuesday afternoon. We both will take John on Wednesday. He will have a CT scan of his abdomen and a MIBG scan of his entire body, physical therapy, and then in the afternoon we will meet with Dr. Chu. We are a little bummed that Dr. Rawwas is out on that day, but Dr. Chu has a special place in my heart as well. It was Dr. Chu, on the day after we received the horrifying diagnosis of Stage IV High Risk Neuroblastoma, rolled her stool over to where I was sitting on the couch in John’s hospital room. She rolled right up to me. We were knee to knee and she put her hands on my knees, looked me in my eyes and said, “We can do this. You can do this. It can be curable.”. There were other words said,but I can’t tell you how many times Jon would repeat those words to me when I needed them most…”Remember what Dr. Chu said…” Her words carried us through.

I am excited for Dr. Chu to see John. She hasn’t seen him since before the end of his treatment last spring. I pray, pray, pray she brings us awesome news on Wednesday!

We keep on keeping on!

Love, Hope & Blessings,
Shelly

Oh…and in other news Michael has been talking about growing his hair out to donate to Locks of Love. I’m not completely positive he’s throwing this idea around out of the kindness of his heart or to just torment his mother. He was looking up on the internet tonight how long it had to be! His hair is currently already a disaster!

Trick or Treat…..What a Treat!!

It is nearly impossible to not compare the events of this year to those of the same time last year. On a daily basis I am constantly reminded how blessed our family is to have this energetic, sometimes bossy…7 year old with us…happy and healthy.

This evening as I was taking John around our neighborhood trick or treating I couldn’t help but think back to last Halloween. We had only been home from the hospital for about 2 weeks on the Halloween of 2012. The harsh chemo of the stem cell transplant had wiped out whatever peach fuzz that was left on his head, his eyebrows, and those beautiful eyelashes. John’s skin was blotchy.. almost dirty looking, his body beaten and weak.The bottom of John’s feet were terribly tender from the skin falling off and the growth of new skin. He wanted to walk last year, but he wasn’t up to it. I pulled him to just a few houses in a wagon.

Now tonight…Wow!John was loving ever minute of running the neighborhood, on a mission to collect a boat load of treats. Mission accomplished! He was even confident enough to leave me standing on the sidewalk while he ventured to the door. Trick or Treat and Thank you’s all around!The smile never left his face. When we were heading back to our house he galloped the whole side yard of our lawn and around to the front door to ring the door once again to make Michael get up and answer it. 🙂

It was a great night and it was another reminder of what a gift each day is.

Love, Hope & Blessings,
Shelly

Busy Boy

Monthly blood draw and clinic visit with Dr. Rawwas.

Monthly blood draw and clinic visit with Dr. Rawwas.

Last Thursday John had his monthly visit to the oncology clinic to check his blood counts, urine, physical…all that good stuff. His numbers were perfect..we love to hear that! We are watching closely for any side effects of the DFMO or any other changes that could signal a concern. Once again he handled the blood draw like a champ, but the office visit went down hill fast and furiously the second a flu shot was suggested by Dr. Rawwas. The whole problem was that John didn’t have a heads up on the situation. He likes to feel in control of at least a little bit. The tears started to pour out of those big brown eyes and panic pleas out of his mouth. John then got up on the exam table and Dr. Rawwas brought over a box of tissue for him. He jerked 2 tissues out of there with such force I’m sure you could hear the scratch all the way down the hall! We got through the physical exam, discussed the DFMO trial that is officially up and running now at Children’s, signed the consent for a 2nd time and talked about scans. Scans….ugh….I think the first week in November. John needs to have clean scans to begin cycle 4 of the DFMO. The good news is that there won’t be anymore bone marrow biopsies unless there is a concern. Concerns by his doctors not his mother. I always have concerns.

Our appointments were running a little over and we were in a time crunch. John, Jon and I were to be in St.Paul for the Delicious Wishes event, a fundraiser for Make a Wish. John and I dashed out to the truck. I had him change his clothes in the parking lot, which he thought was crazy and took off only to hit the traffic. We only ended up a little late. John was invited to help a chef that would be cooking appetizers and to share his Make a Wish experience with the guests as they walked by. There were about 6 kids there total at different stations doing this. At first he was very shy, but the chefs that worked with him were very kind and patient. John actually did better when Jon and I weren’t near him. This worked great for me as it provided the opportunity to taste delicious food and sip a little wine. (I’m sure they were all low fat!).It was a long day for John between physical therapy, a doctor appointment the traumatic flu shot, and having to be so polite all those hours during the Delicious Wishes event.
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I forgot to mention that Wednesday was John’s last day of the fall skating clinic. He has been itching to wear his very special signed Mikko Koivu jersey. Dad wasn’t home to tell us no…so he wore it.Hockey will start up again in a few weeks. It is great exercise for his little tight ankles.

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The busy week caught up with John and he was exhausted. Saturday morning he slept in really late. Finally at about 10:50 I went in and opened his curtains to try and stir him a bit. I was thinking that he was surely going to wake up sick…he never sleeps like that! A little after 11:00 I heard him and the next thing I know there he is standing in front of me….dressed, hair combed and bed made. He just needed the sleep.

Hockey try-outs continue for Jeffrey. Tomorrow is the final day and that will be a relief!

Michael is planning on visiting Madison later this week with a few friends. Tonight he said, “Can you believe I will be away at college in 2 years?” No, I can’t! Boo- Hoo! I continue to suggest Inver Grove Community college as an option.

Happy week to all!

Love, Hope & Blessings,
Shelly

Pounds and Amen!

 

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It has been several days since my last post and much remains the same. We are busy like all of you with work, school, sports and activities. Like usual, the weekends fly by way too fast.

Mikko and Jeffrey both had hockey this weekend. Tonight marked the beginning of hockey try-outs for Jeffrey. I really dislike the stress of try-outs. I know they are something that the kids all go through, but I still dislike them! I am relieved when they are done, the kids finally learn which teams they are on and we can get on with business of playing hockey! Try-outs are 6 days over the next 2 weeks.

Michael had his last weekend of box lacrosse, his friends were over and he worked a little at DQ.

Last Monday was the day to start my “diet”. That morning as I got up and walked in the dark to weigh myself (also in the dark) I had a bad feeling. I had been avoiding this weigh in, but I knew it was going to be an ugly number long before stepping on the scale. My pants have been screaming for help for quite a while. Yep…there I saw a number that reflected all that emotional eating! I’m not going to lie….I ate myself through the last 17 months… putting my weight at it’s all time highest (not counting pregnancy)! I hate it that I let my weight get like this, but now it is time for action! I am trying to eat healthier and not munch all the time. I am drinking more water and for now I haven’t been drinking any pop (Although I did indulge in 2 Miller Lites on Thursday night!). Exercise…I joined the YMCA. (The picture is of Mikko on one of our visits there.) I am limited to what I can do because of my foot but have gotten on the bike and swam laps. I’m also trying, trying, trying to get to bed earlier. Baby steps…

The other picture of Mikko was taken in my classroom. He goes to school with me a few mornings a week. Sometimes he helps me by sharpening pencils, putting out the lunch sticks and other little jobs I can find him. Sometimes he does his homework. He was doing his homework when this picture was taken and it is blurry because I had to do it “really” fast because if he caught me…there wouldn’t be a picture. It is so amazing to me that “here we are…together at school”. Our lives could be so different.

I am so grateful for these days our family has together. Nothing spectacular…just normal days cheering on the Wild on TV, going for bike rides, swimming together, doing homework, running to sports, even the squabbles and time outs too!

Mikko is doing so well! He’s healthy, strong, and full of energy ….and of course a stinker! At the end of our bed routine we say the “I lay me down to sleep” prayer and then I always sing “Amen, Amen, Amen, Amen”. Tonight when I was done Mikko said, “Mom watch”. He then got up on his knees on his bed, stretched his arms towards the ceiling(heaven), tilted his head back, closed his eyes and belted out his own Amens. I’m not sure where he saw this, but he’s got it down! I told you…he’s a stinker. 🙂

I hope you all have a great week!

Love, Hope & Blessings,
Shelly

Here We Are!

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Where have I been? Why haven’t there been more posts? I have been right here at home deep in the normal, hectic routine of being a working mom with 3 active sons. Work, shuttling kids here and there, laundry, dr appointments…all that stuff we moms get to do. I have also been trying to make an effort to get to bed at a more reasonable time. In the past most of my writing has taken place late, late into the night. I think that has been the biggest change and I have been in bed a few nights by 11:00 and that is a huge improvement!

The past 2 days Mikko and I have been at the Journey and Discovery clinics at the U of M. When we walked into the waiting room of the Journey Clinic I saw Jenelle and Lilah Kelley. What a small world. Little Lilah is just so adorable. She was there to get labs and to begin the process of collecting stem cells. Lilah is going to kick neuroblastoma just like John! I wish I’d more time to visit with Jenelle. Maybe we can meet up sometime.

Mikko and I met with Dr. Smith at the Journey Clinic for Mikko’s 1 year post stem cell transplant. She was excited to see him and said all his labs were normal, he looked great, we could start the process of immunizations over, and she’d see us in another year. Great visit, good news and we were out the door….until the Child life specialist grabbed us.

She had 2 tickets for tonight’s Wild game that we could have, but she needed to know right then and there if it would work. Jon is in Duluth for work, I promised Michael I would take him to the college fair, Mikko had 5 more hours of testing on that same day… I passed and you know what hit the fan! I had one ticked off 7 year old! He was crying, saying mean things…he couldn’t understand why Michael had to go to a college fair when he isn’t even going to college for 2 years. I got him on the elevator and the tantrum continued. The elevator would stop, someone would get on, he’d stop, person would get off, Mikko would start up again….we went through this process all the way down! I felt really bad, but he had missed 2 days of school last week with a fever, he was missing 2 days this week and I just didn’t think he needed a late Wednesday night on top of it. To distract Mikko we hit the new playground by the Journey clinic donated by John Sullivan of the Minnesota Vikings. It worked, he blew off some steam and then we headed across the street to the Journey Clinic. It is there that the neruopsych testing took place yesterday and today. Long story short… Mikko tested fine and his cognitive development is on track for his age. The doctor reminded me how very lucky we are considering all the harsh treatment he’s been through and that he’s seen many neuroblastoma patients with a different outcome. The doctor did make a strange comment to me in regards to John playing hockey, “Protect his head.”, he said to me. Huh? I don’t think he likes the fact that he plays hockey. He told me he’s little and I need to be careful. I just said thank you, but I was thinking, ” He skates with little kids, he’s more likely to hit his head fighting with Jeffrey in my living room, than out on the ice…we are in the business of living life and getting the most out of each day”…just a thank you and out the door to get home in time for hockey practice. It’s great for strengthening his ankles. 🙂

John is in such a good place with his health… a great place! The other night I was reading back on his Caringbridge site of when he was in the hospital for the stem cell transplant. What difficult days… so glad they are behind us. I’m still working on not letting the fear of relapse take away from NED right now, but at times this is very difficult.  In the last 2 weeks I’ve learned of 2 children relapsing. Each with different cancers and neither neuroblastoma. When I hear news like this, my heart sinks and frankly it just totally ticks me off!

Abby – AML Leukemia – Tomorrow 9/26 is a year from when she was first diagnosed. I don’t know Abby or her family well, but I met them, like so many others, in the playroom on the 7th floor at children’s. Abby is friends with Alannah who has Neuroblastoma like John. Abby started treatment again on 9/23/13. Prayers to Abby and her family.

Josh – Ewing Sarcoma – Diagnosed 12/11  Cancer free 11/12   Just relapsed this week. This one hit me hard.  When Michael came home from work at DQ and told me, I felt like someone had hit me in the stomach. Josh is the most positive, nicest young man….just breaks my heart that they have to go through this again. He’ll kick it again! It’s curable, he’s tough and his great attitude will see him through. Not to mention that he has amazing parents and a great younger brother.

When I hear of relapse….it can send me into a panic and my thoughts can beat me up . I truly want to practice what I want to live and believe…”Each day is a gift…. live it to its fullest…one day at a time…Keep on keeping on”. If I could truly believe what I say, maybe my hair would stop falling out at the alarming rate it has been for the past several months and maybe, just maybe I’d find the will power to not seek comfort in chips, Hershey bars and all that crap. Maybe if my stupid foot would heal and quit hurting  I could move this sedentary body! BooHoo…I need to quit it! I have tons of things to be thankful for. We are BLESSED!

I was told last night when I got home from the doctor by my dear husband to NEVER turn WILD tickets down! Lesson learned.

Love, Hope & Blessings,

Shelly

Didn’t make the 11:00 deadline to slumber tonight! I’m hungry too!

Flag Bearer at the Minnesota Wild Game

What a night! Thank you to Hope Kids and The Minnesota Wild for making yet another memorable night for our family.

It was a race home from school and work to get out the door and up to the Excel Energy Center to get there in time for practice. When we did get there we were met by Rachel from the Wild and several other people from the Wild. They took us down to the ice where we put on John’ s skates for a few practice runs. Splat! Down went John, but he shook it off and took another practice run. He was given instructions and then we had time to walk around before reporting back down to the locker room at 6:30.

John was introduced from the player’s bench and then he went back into the locker room to wait for the time to go out and skate the Wild flag. I left him there and went to wait for him where he would skate off the ice. Jon and Jeffrey were in their seats on the glass. I was a little bummed that I couldn’t get closer for better pictures, but we should be able to get pictures through the Wild. It was wonderful to watch John on the ice. He looked so little! He skated around one net and then up and to center ice where he “planted” the flag. Then the teams came out and skated around! John received some “knuckles” during this time. He stood in line with the referees on either side of him during the National Anthem and then skated off of the ice.

John loved his seats on the glass right next to the Blue Jacket’s penalty box! He took plenty of pictures of the player that landed in there. Afterwards John, Jeffrey and Jon got a tour of the Wild Locker room from Torrey Mitchell (Thanks to his sweet wife!) and they were all pretty excited about that!

Rachel then walked with us to our parking ramp. We have met her before when our family was invited to go to a game last year and sit in a suite and at the Wild About Children’s Event. I told her we’ve done it all….games, suites, riding the zamboni, flag bearer…all that’s left now is playing in a game!

Every time we have had the privilege of doing something special because of the Minnesota Wild, we have felt like VIPs from start to finish.

Thank you Minnesota WIld! Thank you Hope Kids for thinking of John for this fantastic opportunity!

Love, Hope and Blessings,

Shelly