Cancer sucks. It not only affects the person who has cancer, but also many family members and friends. In my case, my wife has taken on the role of my primary caregiver. Being a caregiver for a loved one is hard! In this post, I’ll briefly discuss how I am trying to help her help me.
I’ll help you through this
Back when I received my cancer diagnosis, I remember visiting with my wife on our deck. I could tell she didn’t know whether to be angry, to cry, or scream. I remember telling her, “don’t worry, I’ll help you through this.” She just stared at me and said: “but I’m supposed to be helping you!”. That is a moment I will never forget.
Looking back, I think we were both right. In so many ways, my wife has been the perfect caregiver, especially when I go through treatments. She spent hours sanitizing our house when I had to go through chemo. My wife continually goes out of her way to keep sick people away from me. At every medical appointment, my wife is there. Of the very few appointments my wife hasn’t made, she sets up someone to be with me and worries the whole time. It appears to me that my wife spends more time worrying about my health than anything else.
I’ve tried many ways to care for my wife while she is taking care of me. The only thing that seems to work is to spend time with her. When I think about it, I reassure her I am not going anywhere anytime soon. I try to let my wife know just how much I appreciate everything she is doing for me. That even includes the times she nags me to be careful when going into a public event, such as a concert. I keep trying to assure her I will be there for her.
Assuring her I’m here is the key
Part of me wishes I could do more for my wife. And yes, I do try to do more for her. But in the end, all she seems to want is an assurance that I am not going anywhere. If anyone out there is in a similar situation, I would let your caregiver know just how much you appreciate what they are doing. If that caregiver is a spouse or family member, I would recommend assuring them you plan to stick around for quite a while. Fighting this cancer shit can suck at times, but with the help of a great caregiver (especially a wonderful wife), the battle doesn’t have to suck quite as much.
Song of the day: Stand By Me
I think this classic song performed by Ben E King says it all.
Bonus Song: Lean On Me
Another song that I think says it all. A few good remakes have been recorded of this song, but I’m sharing the original from Bill Withers. It’s just such a great song with an important message.
Yesterday I posted about my being a workaholic before being diagnosed with cancer. Due to my workaholic ways, I spent very little time focused on being a dad or husband. In today’s post, I will share a few specific areas I have refocused on my family over the last year. Many cancer patients I have spoken to are in similar situations. A lot of non-cancer patients are as well in today’s world. My hope in sharing this post is that others will look at their life and try to find ways that work for them to refocus on the family.
My wife says I was too hard on myself.
Before going on, I should mention that my wife says I was too hard on myself in yesterday’s post. I don’t agree with her. Yes, over the years I would try to find some time to be with my family. But even during those times I would be on my smartphone or a tablet working. Just being there physically doesn’t mean I was always there mentally.
I am actually present for kids’ events.
One significant change I’ve made is to make sure I am not only attending the school, sport, or other events for my children; but I am also giving my full attention. Previously I would be working on my phone. Occasionally at kids’ activities I would look up once in a while and maybe snap a picture for Facebook. People seeing my Facebook page at that time probably thought I was a much better dad than I actually was. Now I’m actively engaged in whatever the event is and genuinely cheering when I should be.
An excellent example of this came from last October when my middle son participated in a marching band competition. I did a post on this after the event. Even though my immune system at the time was weak, and I honestly wasn’t feeling very well, nothing was going to keep me from watching my son march in the competition. Over the last year, I have made sure to attend as many events as I could to watch him play with the marching band or pep band.
I am finding time to spend with each kid.
In case I forgot to mention it, I have three boys. They are Dustin (22), Lawson (14), and Ashton (12). One of the great things about being a dad is to see just how different each kid is. I am trying to try finding ways to spend time with them in a way that is special to each of us.
Spending time with my youngest son Ashton.
Ashton is the kid with which I spend the most time. Due to an as yet diagnosed hypermobility issue, he has to stay at home on his bad days. Because of his condition, he occasionally misses school or other events. During those days, I try to spend some time watching cheesy sci-fi or horror movies. We love to watch these movies together and heckle them (think MST3k).
This past weekend we went to a convention called SiouxperCon. On day two we both dressed in costume. I have included a picture of us in costume in this article. Over the next year an activity we plan to do together is to build costumes. We plan to wear them at the next convention. He has a couple of anime characters in mind, and I have a transformer build I am looking to attempt. Building these costumes will be a great time spent together planning how to make each costume; followed the fun of actually trying to implement those plans.
Spending time with the middle child Lawson.
My middle son Lawson is very into music. Over the last two years, he has been playing drums for the High School band. Plus he now has a drum kit at home, on which he has learned a variety of rock and jazz songs. Additionally, he plays guitar for a rock band he formed with some friends. Up until a month ago I spent a lot of time with Lawson driving to various rock band practices and high school band events. That was a great time spent with him in which we would talk about different bands and debate musical trivia. During the summer it became even better because he had his learners permit and he drove me everywhere (South Dakota I believe is the last state in the US that allows kids to drive at 14). It is hard to imagine better one on one time with a kid.
Unfortunately, Lawson now is past the 90 day period where he needs a parent to be with him. So now Lawson is driving to his band practices and school events on his own. To make up for this change, I am teaching myself to play bass guitar. I plan to hopefully jam out with him a night or two every week. I can’t think of any better way to spend time with Lawson.
Spending time with the adult child Dustin.
It’s hard for me to think of Dustin as a child anymore. I see him as a young man out on his own. Because he is out on his own, it has become harder to find ways to spend time with him. As luck would have it, I found a perfect way to bond with him through gaming. Growing up in the ’80s and well into the ’90s, I used to play Dungeons and Dragons. In the early 2000s life happened, and I stopped playing this game which I so intensely loved. Over the last few years Dustin has been playing Dungeons and Dragons. His love of gaming presented the perfect opportunity for me to spend more time with him!
At first, I was afraid to ask to be a part of Dustin’s gaming group. Would he want the old man to around? Then I found out the group he is a part of includes people of all ages. Not only was Dustin OK with me joining the group, he asked me to be part of the group. I get the impression he had asked me in the past to be part of the group. But I think the old me didn’t hear what he was saying, and I probably said something like “yeah, someday I will.” Playing Dungeons and Dragons with the group has been great. On the days he is Dungeon Master, I get to see his imagination at work. I become so proud of him. Additionally, my youngest son Ashton is part of the group, so I get more time with two sons in an activity we all love.
Planting a garden with the wife.
One thing I have tried to do this year I spend more time with my wife, Mindy. She truly is my best friend and soul mate. Unfortunately, for several years I felt we didn’t get to spend enough time together. That is changing. One way we have spent more time together in the last two years is through gardening. Throughout the summer we spent countless hours tilling, planting, and weeding. As summer continued, we did more cultivating and weeding. Did I mention the weeding? Holy cow weeds like to grow!
Towards the end of summer Mindy and I started to harvest and can a lot of what we planted. I can’t remember the exact number off the top of my head, but we canned dozens of quarts of pickles. Plus we canned beets, salsa, chili sauce, pasta sauce, and green beans. Canning all of that produce takes a lot of time. We would spend hours upon hours just talking and watching TV as we canned. I looked forward to canning because it was some good quality time with my soulmate. Now that winter is here I hope we can figure out some similar activity to spend time together. I might sound cheesy, but I feel growing a garden has caused my relationship with Mindy to grow as well.
Hopefully it will last this time.
I hope that I will not once again fall back into my workaholic lifestyle. I have been trying so hard, and I believe I am becoming the dad and husband I want to be. Due to recovery from chemotherapy and my ongoing maintenance infusions, I do still have physical limitations. There are days I am too exhausted to do anything with my family. I have maintenance tomorrow, so I know coming up I will have some deficient energy days (once the steroids wear off). But I think if I can keep focused on the family during my good days things will continue down the path they currently are.
I hope anyone reading this post will think of one or two ways to get closer to their family. For me the key has been to find connections I have with each family member and try growing that into a joint activity. There are other ways I am spending time with each family member that I didn’t document. But I think I shared enough to give a general idea of what I’m saying. Having cancer makes us face our mortality. To me, the best way to face mortality is to make the best of our time with family while we are still alive.
PS. Once again, I broke my rule of keeping posts under 1000 words.
Song of the Day
I can’t write a good intro to this song explaining how it relates to the post without tears flowing. So without further ado here is That’s My Job from the great Conway Twitty.
The bonus song is how I feel about my soulmate Mindy.
On this blog, I have shared a lot about my cancer experience. It seems most of what I write about is negative. The negative direction of my blog is mostly due to the fact I’m trying to give others an idea of what they may experience when a loved one has cancer. Today’s post will be different in that it focuses on a negative aspect of my life from before being diagnosed with cancer. In this post, I will share how being a workaholic almost prevented me from ever being a good father or husband. Tomorrow I will have part two of this post, which will focus on what I am doing now to be the father and husband I wish I had always been.
Work was my life
I used to be a workaholic. Before moving back to South Dakota about seven years ago, I would spend almost every moment working. As a network engineer/project manager I always had work to do. There were a couple of jobs and consulting work I would do that had me traveling all over the Midwest US and Canada. There was one year, in particular, I had logged over two hundred nights staying in a hotel. That was time spent away from my family. One of my sons was a baby at that time, and he refused to let me feed him because he didn’t know me. Even when I was home, I was never really home. I would be logged onto the computer and creating scripts or router configs for customers. I lived for my work and barely noticed I had a family.
When my family moved back to South Dakota I left the tech world. I was now spending more time with the family. There was hardly a sporting or school event I would miss. I was going camping with the whole family. I spent some time helping my wife grow her accounting business. On the side I started blogging about South Dakota politics. Within a couple of years, I was spending at least eighty hours a week writing about politics on my blog and acting as a ghostwriter for people in the political and business world. Plus I was traveling all over to record events and interview politicians. I had changed from being a workaholic in the tech world to being a workaholic as a writer. Nothing substantial had changed.
My family suffered due to my focus on work
I love my wife and kids, and I feel that I have always loved them. But the old me chose the wrong method of showing my love. To be what I thought of as a good provider, I felt I had to work continuously. It never occurred to me that what my wife and kids wanted was more time with me. I remember wishing I could spend more time with the family. Instead of spending more time with the family, I would work longer to be the provider I thought they wanted.
In this post, I won’t go any further into how my family suffered. I imagine almost anyone can imagine how tough it is for a family to be an actual family when the dad/husband is never there. Plus I can think of dozens of times off the top of my head where I know I disappointed my boys by not being there.
Then cancer happened
My focus on family started before I became diagnosed with cancer. During the summer of 2018 I began to have significant breathing problems coupled with a lack of energy (documented in this post). I thought I was going to die. That summer, I spent as much time as I could with my family. I wasn’t able to do much with them due to my breathing problems. But I still tried to spend what I thought were my last days with my family. The biggest joy for me that summer was traveling around the state watching my two younger sons play baseball.
Monday, August 27, is when I got the news from my doctor that I had cancer. Specifically, I found out I have Stage 2 Follicular Lymphoma. Then I saw “the fireworks” on September 5 letting me know just how bad my cancer was. Since September 5 of last year, I have not stopped thinking about how much of my families life I have missed. Over the last year, I have been trying to find ways to make up for that lost time.
Failure as a dad and husband
As I look over the last fifteen years of marriage, I cannot help but feel I was a failure as a dad and husband. In my mind I was a good provider for my family. But in reality I was rarely a true father or husband. At the time I thought just making appearances at certain events was enough for my family. I was wrong. I wish I could say that my family missed me, but I don’t think that is true. Looking back, I don’t think my wife and kids were around me enough to actually miss me. I was the guy who would come and go and make the occasional bad joke (on the plus side they get to hear a lot more of my bad jokes now!).
I am also amazed my wife did not divorce me during this period. We both love each other very much. But I left the marriage in all ways that matter. There were times over the years I would be around for a little bit longer, and I would be more of an attentive husband. But that would never last long, and I would also return focus on work.
Looking back, I can recall dozens of ways I was a poor father and husband. But I won’t go into any more of those ways in this post. I imagine anyone reading this post an understand by now that I was not there for my family.
Refocus on being a true father and husband
As I close this post, I hope to close the dark period of my life where I chose not to be a true husband or dad. Unfortunately, it took cancer for me to realize I was not focusing on my family in the way I should have been. Part of me still feels that death is coming closer, and I can’t help but have some regrets about the lack of being an attentive father and husband. But at the same time, I have renewed focus on spending more time with my family and not falling into the trap of being a workaholic again. My next post will focus on what I am doing differently now to be the father and husband I should always have been.
Song of the day
The song that ran through my head while writing this post is a beautiful song by Zane Williams. In particular this part of the song hits close to home:
And for every dollar I earn there’s a lesson you learn without me there And every day I’m on the go I’m prayin’ that you know your Daddy cared ‘Cause the hardest part about workin’ hard ain’t the bills I gotta pay It’s you growin’ up while I was away
Of course taking about a dad who was never there brings Harry Chapin’s classic Cat’s in the Cradle to mind. Instead of sharing the original, I thought I would share what I feel is a great cover by Ugly Kid Joe.
This previous weekend a benefit was held to help my family out. With three family members dealing with medical issues all at once we have become financially overwhelmed. I am happy to say the benefit was a success. In this post (which I will try to keep short), I will share part of my experience of the benefit and try to express the thankfulness I feel.
Nerves were shot prior to the benefit
Prior to the benefit my nerves were shot. I am used to being the person that helps other people. It is a new experience for me to rely on the good hearts of others. I kept wondering if anyone would even show up. I kept wondering if people would think that because we own a business that we really didn’t need help. I kept wondering if maybe we weren’t deserving of help since there are other families out there in need of help. All of these thoughts, and more, kept running through my head.
Of course it didn’t help that on the day of benefit I was having a one of my rough days. I am sleeping very poorly and my energy levels on certain days are very low. In order to make it through that day I ended up taking energy drinks. I don’t really like drinking those. But before the benefit I had to drive an hour to watch my middle son in a basketball tournament. Actually going to the tournament probably calmed my nerves down more than anything. The boys played three great games. But as soon as the tournament was done I was back to being on the edge of what almost felt like a nervous breakdown.
On a side-note I want to mention that the coach brought some of the players to the benefit. This was such a pleasant surprise. It really brightened up Lawson’s evening, and mine.
The benefit itself went really well. I was told there were about two hundred and sixty people in attendance. It was all very overwhelming. I spent the whole time trying to go from person to person and thank them for coming. I didn’t make it to everyone, which I regret. Many times I repeated how we were all doing. In particular I had to constantly try to help people understand what is wrong with our youngest son Ashton. He has some sort of hypermobility, which he is still going through the diagnosis process. It is hard for people to grasp a condition which places Ashton in a wheelchair on certain days, and he appears to fine on other days.
At one point I had the microphone in order to introduce my family to the crowd and say thank-you. This was one of the hardest things I’ve ever tried to do. I had become so emotionally overwhelmed with the outpouring of love and support for my family that I was having a hard time speaking. When I tried to say thank-you I kept having tears form and found myself unable to get coherent words out. More than anything this benefit has helped me to understand there are still good people in the world.
How to show my grattitude
Another big worry of mine has been trying to figure out how to show my gratitude. We are working on thank-you cards and an ad in the local paper to thank people. But that seems so insufficient for the amount of support shown to my family. At the benefit I was speaking to a person I know a little bit. She is technically a client of my wife’s and I’ve met her a couple times over the years. She gave the answer I had been looking for as to how to best thank the community. Here is an approximation of what I remember her saying:
Ken, I’ve seen you and Mindy give to the community in many ways over the years. I know you guys have helped other families out. When you guys are back on your feet just continue to do so. That is all the thanks I need.
At the time I was still so overwhelmed from being at the benefit that I didn’t give it a lot of thought. But since then I have thought about it a lot. I agree. The best way for my family to give thanks is to continue helping others. This financial hump is hopefully a short-term condition. As we realign our finances and hopefully get back on firmer financial ground it will be possible to once again help others out. I can’t think of any better thank-you than to “pay it forward” when we are able to do so.
Time to end this post before I ramble too much
Really all I wanted to do in this post was to say thank-you to family, friends, and the community for the overwhelming support they have shown my family. I can’t find the words to properly show my gratitude. Instead I will continue to help others when we are back on our feet and try to live by a pay-it-forward lifestyle.
Today’s song – What a Wonderful World
Today’s song comes from the Great Satchmo, Louis Armstrong. I don’t think this song really needs an introduction. The song is so filled with hope and love that I feel it is appropriate for this post.
Bonus Song – Thank you
Doing a post about being thankful brought this great Led Zeppelin song to mind. This song is actually a love song and it sums up how much I love my wife and am very thankful to have her.
One of my favorite things to be in life is a dad. That is one of the reasons I call this blog Dad Against Cancer. They may not believe it, but almost everything I do is to somehow make their life better. Part of my motivation to kick the cancer out of my body is so I can keep spending time with my boys and the wife. I have a feeling they want to keep me around for a while as well. In this post I will highlight a few ways the boys have stepped up to help me get through chemo.
First and foremost the boys have adjusted their home life to accommodate my needs. The boys wash their hands on a regular basis and use hand sanitizer to ensure I don’t catch a nasty virus when my immune system is low. This may seem like a small thing. But it can sometimes be a pain to get kids to do things like wash hands. The boys now do this without even being told. If they do forget and the wife or I have to remind them, they do it without a huff. Little things like that show they are taking my health serious.
Another thing done by the two younger boys, Lawson and Ashton, is to open doors for me in public. When we go out in public I try to avoid touching doors or anything that a lot of other people may have touched. Yes I do keep hand sanitizer with me, but it is much easier to just avoid touching things when the boys are helping out. In the few times we have gone shopping while I’ve been on chemo, the boys will push the cart and load it up with what I tell them. They even somehow have found a way to do this without fighting or hurting each other with the cart (well mostly, they are boys after all).
Over Christmas break my oldest son really stepped up. He is now back from college and has been transporting his younger brothers to school, basketball practice, band practice, and various other things. These are activities I love to do myself. But the last two rounds of chemo really brought me down physically. Dustin stepping up to cover for me helps more than he will ever know. During all this he also made sure I was fed. I am very proud of that young man!
There are many other things the boys have done to help me out. But I think the above examples show some of what kids of cancer patients have to do. I am dang proud of those three boys and hope to be around for many years so I can meet and be proud of their children some day.
It is Thanksgiving today in the United States. Despite my diagnosis of non-Hodgkin’s lymphoma and going through chemotherapy treatments I feel there is a lot to be thankful for. Wait, make that because of what I am going through with cancer I know I have a lot to be thankful for. Going through cancer has made me appreciate just how good the world is and how great the people in it can be.
First I am thankful for my great neighbors. I have multiple neighbors who have offered to help around the house, have brought meals over, and a multitude of other things. I am truly thankful for these wonderful neighbors. Plus I think it has given my wife peace of mind knowing that as I sit at home recovering from chemo that any number of neighbors are a short call away in case she is unable to get a hold of me for some reason. Having good neighbors really reduces the stress on her.
Next up is friends and acquaintances. Sometimes in life it feels like I don’t really have a lot of friends. I’m sure a lot of other parents can relate to the fact that it is hard to have a lot of friendships when you are constantly traveling for kids sporting and school events. During times like this when I have cancer I found out how many people are willing to step forward and offer help. So many people have offered to help that I actually lost track. Even though I have not taken most of them up on their offer to help, I truly appreciate the fact they made the effort to help me and my family during this time.
Family has always been important to me, even if I never let them know. Both my family and my wife’s family have gone above and beyond to help us get through my cancer treatments. My wonderful mother-in-law has brought me meals while I do my chemo treatments and a brother-in-law has been there for me twice during chemo when my wife was unable to be there. My brothers and parents have helped just by being themselves and supporting me. I am truly blessed with family.
I am also thankful for the greatest wife in the world to help me get through my cancer treatments. Mindy is truly my soulmate and I don’t think I would be as mentally strong through this experience without her support. I only wish I could do something to reduce the stress on her. She really deserves a break.
Finally I am thankful for my boys. With my being on chemo the boys have had to put up with some major changes. They have handled these changes better than I believe many adults would. The boys have also stepped up to help me when they think I am overdoing it. My wife and I are truly blessed with great children.
To anyone reading this I would ask for you to think of those in your life you are thankful for. It is easy to get depressed or overwhelmed when going through cancer and/or chemotherapy. Instead of focusing on the negative aspects of cancer, I would urge everyone to stay positive and focus on people who are there to support you.
Parents want their children to be healthy and live longer than them. As a parent I worry about the health of my youngest child. After visiting with my parents this weekend, especially with my mom, it occurs to me this extends to children who are adults as well. In this post I will briefly blog about some ways my mom is impacted by my cancer diagnosis.
Before going on I will say I think I have the best parents. I think my mom and dad did the best to raise me and my brothers with what they had available. As my wife and I raise our children I tend to look back to what they did as guidance.
During each step of my cancer diagnosis my wife and I have made sure to keep my mom in the loop. She got calls when I went in for a biopsy, got the biopsy results, saw my PET scan results, had my port installed, went in for my first chemo treatment, and so much more. Each step of the way she had to wait on the phone and hope for the best. Being two hours away she simply can’t just drop by. The emotional stress of waiting each time must be almost unbearable at times.
Actually it really doesn’t even matter how far away my mom is. Since I’ve started chemo both my mom and dad have been battling their own health issues. Because of my immune system being so low they have not dared come visit me until this previous weekend. I can’t imagine the tremendous emotional strain this has been for my my mom. I’m sure many people are asking her how I have been responding to treatment, and she has been unable to say something like “yeah, I saw Ken the other day and he is looking good”. Hopefully we can all stay healthy enough that we are able to keep seeing each other more often.
But it is not just me that my mom is being kept away from. My youngest son Ashton has health issues, which appear to be getting worse. The middle son Lawson is definitely a grandma’s boy, and she has been unable to see him. And of course my mom sees my wife Mindy as one of her own children. My mom has been staying away to ensure I don’t get sick, but in doing so she has been unable to enjoy her grandchildren and comfort her daughter-in-law. This further adds to the emotional stress she is enduring.
I do believe this blog has been helping her cope, and she has said as much. In this blog my mom is able to better understand what I am going through. When friends and family ask about me, she is able to refer to my latest blog post. In some way this blog can help her to share my cancer experience, something I think as a parent would be invaluable.
I’m actually going to keep my word and make this a short post today. All I really wanted to do in this post is to briefly highlight that the parents of cancer patients are greatly impacted; especially if their children are adults and no longer living at home. Even adults have parents…
Its multimedia Friday again. Today I thought I would post a couple of videos to help people explain cancer to kids. I know my kids have had questions about cancer and I think my wife and I have done a fair job of explaining things to them. But I also think using videos such as the ones below can be helpful to supplement talks with kids.
I think this first video is great to explain to kids how some things might change when a family member has cancer.
This next video has some tips for parents about how to talk about cancer with children. The narrator of the video focuses on a couple of different age ranges.
Finally this last video is an animated video to possibly help younger children understand cancer in a visual way.
This weeks music video is from the Danish Band D-A-D. The lyrics from this song hit home for my cancer diagnosis. Especially the line “I got run over by truth one day”.
Yesterday I blogged about my third round of chemo. Overall I felt it went well, even with my blood pressure dropping quite a bit. My wife Mind however remembers yesterday differently. In this post I will briefly blog about how she though this round of chemo went.
First off Mindy agrees that my blood pressure was dropping. But she doesn’t see it as being no big deal. In fact her and one of the nurses were worried a bit because my blood pressure was dropping much quicker than it had the previous two rounds of chemo. My initial blood pressure was 130/68. It was 99/52 the last time it was checked. Telling her this is a known possible side-effect doesn’t make Mindy feel any better. It is just one of the things my poor wife has to worry about while I am on chemo.
Another thing other thing Mindy worried about yesterday was my dizziness. During this round dizziness seemed to be a larger side effect that it had been in the past. Even if I got up slowly to go the bathroom I would experience some dizziness. Mindy said it looked like I was about to fall over and I was very unsteady walking to and from the bathroom. I really think she wishes I would have called the nurse. But I couldn’t see calling a nurse for doing something so simple as walking to the bathroom. Mindy might have been right though…
Finally Mindy mentioned I was not sleeping as hard as I had during the previous two rounds of chemo. The Benadryl definitely knocked me out. But this time she said I would keep sitting forward in my chair and it would look like I was about to tip forward out of said chair. I don’t recall doing this. But I expect I was doing so because my back pain has been getting worse over the last few weeks. The shot I take to rebuild my bone marrow probably has something to do with my back pain getting worse. Sometimes the shots of pain I get are debilitating. But it doesn’t last long at high levels of pain and usually settles down to about a six on my pain scale. Mindy was definitely worried about this happening during chemo and me possibly falling forward onto my face.
I’ve said it before that chemo is hard on my body. It is also hard on my psyche at times. But I think in some ways Mindy is under much more mental stress due to my cancer than I am. It doesn’t help matters that we have a son with medical problem just as bad if not worse than my own. Hopefully I can find a way to reduce some of the stress on Mindy. She really has been a large reason I have coped so well with cancer so well.
This particular post won’t be about cancer. I’ve mentioned a few times on this site that my youngest son Ashton has medical issues. In the past I’ve used Facebook to keep family and friends updated as to his status. Going forward I am going to share the updates here. To get everyone up to date I’ll do a not so brief summary of what has happened with Ashton over the last year.
Ashton’s story began a little over a year ago when the wife and I were moving our family to a new house on the lake. All three boys were helping me clean out the basement in our old house. Somehow he fell into a plastic bin while carrying a picture. Ashton then began to cry and said something was wrong with his shoulder. I took a look at him and it appeared his left shoulder had kinda come out of its joint. I say ‘kinda’ because I’ve seen dislocated shoulders before, and this didn’t quite look like that. His arm was just hanging as if there was no shoulder. This is a condition we called “dropped” in our household now…
I gave my wife, Mindy, a call on the way to the Emergency Room and she met us there. The doctor at the ER seemed as confused as I was about the appearance of his shoulder. After an examination and x-ray the doctor said she couldn’t find a reason for the way Ashton’s shoulder was hanging. After conferring with another doctor on the phone, the ER doctor prescribed Ashton some muscle relaxant. It seems too long ago this, happened I can’t exactly recall the reason for the muscle relaxant. Ashton was in gymnastics during the summer, and we thought maybe he did something to his shoulder there.
For a couple of weeks things went fine. The muscle relaxer seemed to fix his shoulder issue. Then I received a call from Ashton’s school. He was in pain and his shoulder was “dropped” again. I still had some muscle relaxer and brought that to him. That seemed to fix the problem again, although it took a few hours. In the mean time we set up an appointment with an orthopedic doctor for Ashton. The referral for this doctor actually came from the ER doctor, although I had yet to set up the appointment because he seemed to be fixed. During the weekend prior to the orthopedic appointment his shoulder dropped more often. We realized by this time the muscle relaxer was doing nothing. Whether he had muscle relaxer or not, his shoulder would drop for a few hours and go back to normal as long as he didn’t overuse it.
When we finally had the orthopedic appointment Ashton’s should was dropping more often, at least once a day. He had a full exam. The orthopedic doctor put Ashton through a series of motions and tested his muscles and bones. The doctor noted Ashton had very strong muscles and there didn’t actually appear to be anything wrong with his bones. However (and isn’t there always a however), he said the problem is more widespread than just one shoulder dropping. With Ashton’s shirt off the doctor had us look at his back. To me his back looked normal. But the doctor noted his shoulder blades sticking out of his back. This is a condition called scapular winging. After the doctor pointed it out I was able to see just how bad it was. His shoulder blades stuck way out. Since Ashton had always been this way, we really never noticed the winging. The orthopedic doctor believed Ashton may be suffering from some sort of nerve or muscle disorder; both of which are out of his area of specialty. He said he would try to find a pediatric neurologist to refer Ashton to.
After a couple of weeks we finally got a call letting us know Ashton would have an appointment with a pediatric neurologist in Fargo. The only problem was the appointment wouldn’t be for about four months. Because of that the orthopedic specialist needed to fill out some sort of paperwork on their end and get Ashton’s case prioritized. After a couple weeks we had to meet the orthopedic doctor again. He informed us the pediatric neurologist he had originally referred us to was the wrong type of specialist and Ashton would not have an appointment in Fargo.
Once again the orthopedic specialist went about finding the right type of pediatric neurologist for Ashton. The doctor also noted this should be done by Ashton’s primary doctor. Since moving back to South Dakota some years ago our family has not had a primary physician. It never occurred to us this would be important. While the orthopedic doctor was working on getting a new referral I setup an appointment with a pediatrician I hoped would become the primary doctor for the two little boys. The doctor I met with ended up being a great doctor and as time went on became a great central point to make sure the medical records from various specialists all made it into Ashton’s file. He also helped us to understand what some specialists have said over the the last year. Oops. I’m getting off track… Back to Ashton’s story.
Finally in about November of 2017 Ashton had an appointment with a pediatric neurologist. We would have to bring Ashton to Gillette Children’s Hospital in St. Paul, MN. From November of 2017 to spring of 2018 we made many visits to St Paul for Ashton to be tested and meet with doctors. The neurologist believed Ashton may have some form of Muscular dystrophy or a neurological disorder. Ashton went through a series of genetic tests to rule out various neurological and muscular dystrophy related conditions. He also went through x-rays, CT scans, MRI’s and a host of other tests.
As time went on Ashton’s condition continued to deteriorate. By the end of the 2017 Ashton would miss a day of school every week or two. As we got into January and February of 2018 it became even worse. Ashton would be home from school one or two days a week. On these days Ashton would have extreme pain throughout his body. The worse of it would focus on his shoulders, knees, and sometimes his lower back. This would last for a day or two, and then suddenly he would be back to normal. It was during the middle of this time-period that Ashton first had to use a wheelchair, and it was for about a week. The poor kids knees hurt so bad he simply couldn’t walk. The doctors showed some exercises to help, and eventually he was walking again. Mentally Ashton was getting in rough condition at this time. He was tired of hurting for no apparent reason. And doctors appointments were weeks between each other to give time for various genetic tests to come back. The long periods of waiting for news from doctors really took its toll on Asthon.
When spring arrived we had our final appointment in St Paul. We actually met a different pediatric neurologist this time; our previous neurologist had unfortunately passed away earlier in the year. The current pediatric neurologist let us know all test results had come back and he said with full confidence that Ashton does not have muscular dystrophy. He believes Ashton is suffering from a type of hypermobility and that a referral to a closer hospital such as one in Sioux Falls would be possible. This was both great news and horrible news. On the one hand it was good to know Ashton doesn’t have MD or any of the other neurological conditions they tested for. But then we realized Ashton would be seemingly starting over with new doctors. The poor kid was not happy about starting over.
Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. Joint hypermobility is common in the general population. It may be present in just a few joints or it may be widespread. It is most common in childhood and adolescence, in females, and Asian and Afro-Caribbean races. It tends to lessen with age. In many people joint hypermobility is of no medical consequence and commonly does not give rise to symptoms. Hypermobility can even be considered an advantage, for example athletes, gymnasts, dancers and musicians might specifically be selected because of their extra range of movement.
For a small percentage of the population, instead of being advantageous, hypermobility may be associated with joint and ligament injuries, pain, fatigue and other symptoms. Hypermobility can also be a sign of a more serious underlying condition, which are often passed down through the generations. These conditions are known as Heritable Disorders of Connective Tissue (HDCT).
Ashton had always been flexible. That was part of why he enjoyed gymnastics so much. Actually during his diagnostic phase in St Paul his hypermobility had been noted. But at that time it was thought the hypermobility was a side-effect of muscular dystrophy.
At this point Ashton’s pediatrician was handling the referral. It took a while to find the right type of specialist for Ashton. Finally at the beginning of summer he had an appointment setup for September. We weren’t happy about waiting a few months. But we were told the Sanford Children’s Hospital in Sioux Falls was hiring a new genetic doctor specializing in cases such as Ashton. So we decided to wait it out and see how Ashton handled the summer.
The summer went pretty well for Ashton. He didn’t have to use the wheelchair at all. He still had one or two days each week he couldn’t move. But since we were home he would just hang out in his room. Ashton played midgets baseball. On the days he was having problems the coach would work with him and let him sit on the bench if he was too sore or his shoulder was dropped. There were a couple of game Ashton wasn’t happy with me or Mindy. When Ashton hurts really badly he doesn’t want to be around people at all, even if he can walk. One of the previous doctors said it was important to keep him social and make him go to school or sporting events, even if he couldn’t participate fully. So we did make him go to some games despite his protests. Overall though the summer went pretty well and we were almost thinking he was getting better. Then school began again.
Once school started again he was back to having one or two days a week where he had problems with his knees. Looking back, we don’t really think he was getting worse. It’s just that he didn’t have to move during the summer if he didn’t want to. School involves a lot of walking throughout the day. Instead of keeping him home every time, we were now sending him to school with a wheelchair on the really bad days. Since the beginning of this school year I would say he has had about five or six weeks where he went to school a day or two in a wheelchair.
Ashton’s appointment finally came in September. The only problem was it was set for the second day I would have my first round of chemo. At that time my breathing was so bad it was not possible for me to reschedule chemo; and we had waited so long for Ashton’s appointment we didn’t dare reschedule him. So Mindy took Ashton to Sioux Falls for his appointment while my brother-in-law sat through chemo with me. I really wish I could have gone to Ashton’s appointment. That is another thing cancer has taken from me…
The appointment with Ashton went well. Most of the time was spent by Mindy answering questions for the geneticist and going through his history. The doctors at the Sanford Children’s Castle believe they have a good idea of what type of hypermobility Ashton has. But just as the doctors at Gillette Children’s Hospital had noted, Ashton has some other symptoms that just don’t align with anything else. So he is also being tested for some other neurological condition which may or may not be related to hypermobility. His appointment with a neurologist at the Castle is actually coming up at the end of October.
Ashton also has an appointment with an occupational and physical therapist coming up. The doctors at the castle are covering multiple methods of diagnosing and helping Ashton with his pain. I really appreciate that.
I think two thousand words is enough for one post. In this post I shared a cliff note version of what has happened with Ashton over the last year (I could write a full book about everything that kid has gone through in such a short amount of time). Hopefully this post will help some family and friends of Ashton understand what he has been going through for the last year. I will post any major updates on this site to help keep people informed about his status.