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,


2 thoughts on “

  1. Thanks for The Update Shelley .Everything is going to be good honey.How absolutely wonderful for you to have the conversations and fun time in the hot tub . We are in Florida with Mike . Sending our prayers on Thanksgiving for you all. Hi to Jon Judy and Sam

    Sent from my iPhone


  2. Celebrating where you are right now…thank you God! Just so you know, I don’t think many of us who read your blog would react any differently…eagle eyes and huge sensitivity to anything out of the ordinary. Remember always, you are in God’s grip!

    Happy Thanksgiving to all the Gegens!

    Love you ~ Kathy and Ron

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