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.

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

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!

     

Love, Hope and Blessings,

Shelly

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

“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

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!

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