Journal

Journal entry by Mindy Santema

So today, September 12th, came with it's own challenges and triumphs!  First, I firmly believe with starting with all the blessings.  Ken successfully completed his 2nd day of Chemo!!!! No problems, no adverse reactions and no nausea.  Thank the Lord!  He had 3 chemo's yesterday and one really ugly chemo today.  Today's was a very slow one because it can have some nasty side effects for allergic reactions.  We were truly blessed that my strong husband didn't have ANY of those reactions!  Hooray!!!!  So, that was awesome news.  His only side effect so far from the chemo is being really tired and waking up not knowing what day it was.  That's great though, because he's finally getting GOOD sleep instead of just dozing or not sleeping at all.  He looks so good you guys, it's so hard to realize that he's the same man from 3 days ago compared to today.  He is staying strong and I never expected anything less from him because that's just who he is.

So yesterday when we ended chemo treatment, which he totally rocked at by the way, I thought we'd be done for 21 days... nope!  We were told that he only had 3 of the 4 chemo's that the doctor wanted administered.  So then started the scrambling and a bit of stress (all on me and nobody else I swear).  I put the stress on myself, because, any of you that have more than just a couple iron's in the fire know what it's like to suddenly have just 1 more thing added and you feel like you want to have a melt down.  Ashton had an appointment today in Sioux Falls with his geneticist that was scheduled 3 months ago.  Not an easy appointment to reschedule apparently.  Not that they didn't understand because they really did but it would have pushed Ashton's appointment another 3 months out.  Okay, so I had to take a few deep breaths because I needed to be both places at once.  Of course Ken immediately said that he would be fine and not a big deal.  My thought, this is his first chemo treatment and we have no idea what can happen so how do you choose?  How do you put your husband before your child or your child before your husband?  You talk, communicate, make it work....talking is key.  Talk to your family, ASK FOR HELP!!!! 

So that's what I did, I called one of my brothers that lives 30 miles away (or so, yeah I know I'm terrible at distances and geography so don't judge!).  Our families, and our friends have been a terrific support system and we couldn't do it without them.  My brother right away, said he'd take a vacation day and take Ken to his appointment, stay with him the entire time and send me updates, then take him home and stay with him until I got home.  This was a LONG day for everyone.  He was here at 4:40am this morning and Ashton and I took off a little after 5am to head to Sioux Falls.  

We made it safely to Sioux Falls and the entire time my brother was sending me continuous updates (sometimes comical) about how Ken was doing.  Ken never ceases to surprise me in his strength and love for his family.  Mom once again because she loves us all made sure the boys ate (Ken & Eric) and let me know that both boys had good naps :-)  I love her and glad she stayed to be a great support this week.  She makes sure everyone is staying sane and has been a wonderful sounding board.  

I of course as always was on edge because I wasn't there but I can't be 2 places at once and that's okay...Ashton's appointment went fine and Ken did wonderfully!  Our boys, all of them have been terrific during this so far.  They all understand and have asked really intelligent questions about what is going on.  

Ken has another appointment tomorrow but not for Chemo.  A great friend of ours will stay here with him until his appointment when another great friend will be here to transport him to and from his appointment so I can go to work.  Not sure what we would every do without all these caring people to help.

I am nothing but grateful for the help and support we've had the last few weeks of this, our friends and families all offer to help, it's okay to accept it.  That's the hardest part, accepting the help.  Once I realized that it's okay to take the offered help it was a great weight off my shoulders.  I don't have to do this alone and neither does Ken.  We are blessed that he doesn't have some of the reactions that unfortunately some of the other Cancer patients do and that helps.  My heart goes out to those patients and families that have the adverse reactions.  Stay strong we can all get through this together.

Ken is a Super Dad, literally... a family man from beginning to end that lives for taking his boys places.  Whether it's to a rock concert or to baseball games.  He's always there.  And God willing, he'll still continue to be able to do those things with his boys.  Love him to the moon and back. Keep up the prayers, they're working.  Hugs!
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Journal entry by Nancy Hansen

Ken hadn’t been feeling well for over a year now, but was originally just told it’s because he was a middle aged smoker and that’s why he couldn’t breathe. Fast forward to 2 months ago...Ken had a large lump on the side of his throat that he first noticed at Lawson’s baseball game. Thinking it was just a weird bug bite he didn’t rush in to get it checked. He had a doctor appointment coming up so rather he waited and told his doctor at that time. His wonderful new doctor wasn’t giving up on figuring out why Ken couldn’t breathe. His breathing by this time was getting considerably worse and he couldn’t walk short distances without using a walking stick so he could stop and take a breathe. He had stress tests done and a CT scan done searching for the reasons for his breathing. It was during the CT scan that “something” showed up.  We then had a biopsy done on the lump on Ken’s throat. By this time he had lumps on both sides of his neck, around his lungs and down his spine. With anxious hearts we went to his follow up with his doctor after the biopsy...and heard the words nobody wants to hear. You have cancer...at that time we didn’t know how bad. We had to get a PET scan, again waiting is always the hardest but it was really quick. All of this has happened within the last 2 weeks, including the PET scan. We got the results of the scan while sitting with Dr. B Ken’s oncologist. The news we heard devastated us but we were so numb it didn’t really settle in until a few days later. Ken has Stage 4 Non-Hodgkin’s Lymphoma. The only place he doesn’t have it is his brain. It’s in his bones, his liver,lungs, spleen everywhere.  You can’t imagine what it was like to see the pictures of the scan as all the cancer in his body just lights up. It was a shock. Dr B scheduled a port and chemo to start just 2 days after we got the news.

Yesterday, September 10th, started our journey. We arrived at the hospital to have Ken’s port installed. There were laughs among the worries though. Great staff, great doctors and excellent communication.  Ken’s Surgeon came out to talk to me right after he had closed Ken up, unfortunately Kne’s cancer was so bad he couldn’t put the port where he wanted too and instead had to put it in his neck through his jugular vein. Dr. S tried 5 different times to put the port in but was stopped every time by a new blockage of the cancer.  The oncologist Dr B, came out to visit with me right after the surgery as well to let me know that the cancer had gotten worse just in the few days since the PET scan and Ken needed chemo now and not later.  The chemo she needed to start is highly aggressive to stop the spread as quick as possible. Again, not news anyone wants to hear and downright scary.  Through all of this Ken keeps telling me, “I’m here for you and I love you”. I keep telling him it’s supposed to be the other way around. What a guy, he makes me smile.

Today, September 11, this is our first day of chemo, my Mom, Nancy is here with us at the hospital keeping us company. Ken will be blogging about his experiences from his point of view, this is going to be from mine and the kids’ view of what’s happening to him.  We were told that Ken will have chemo tomorrow as well. He will have 8 total treatments every 21 days...so here starts our journey. My thoughts and prayers are with any family that has or is going through this. I cried at the pharmacy yesterday when I was told there was no charge for the 7 prescriptions I had to get for Ken, why? Because we had already maxed out our out of pocket...terrible reason to cry but I was overwhelmed.  I will do my best to keep posting on here. Keep Ken in your thoughts and prayers as well as all other families that are going through this. It’s definitey been a learning experience and yes really overwhelming. 

We we have been blessed though, we have wonderful support from family and friends. Helping us balance the kids and work and we couldn’t do it without them.
Ken’s Story

Site created on September 11, 2018

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