About the Author

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Plainville, CT, United States
Having achieved my goal of becoming a published author, I contribute it to the fact that I have been writing since the age of 9. My boys were the inspiration for my children's stories and my life is the inspiration for my autobiography. I have a tendency to write about whatever I feel, relevant, interesting or not. I welcome any comments you may have, positive or constructive. Thank you so much for visiting and following my blog, My life.

Thursday, July 12, 2018

Chapter 3



3


  What a tiny room.  Nothing compared to the room he was in upstairs.  maybe 10x10?  I'm not a very good judge of measurement but it was a super tiny room in the PICU.   The bed was sort of off centered to the right, a lounge chair and a rocking chair to the left. Counter with a small sink, cabinets, and drawers.  The toilet was even in a cabinet. Pretty ingenious actually, but nothing I'd ever use.   Off to the right was the medical paraphernalia.  Didn't leave much room for anything else. This room was going to be my "home" for the next 45 days.

I can remember sitting in the room in the lounge chair, looking at Axel lying in that bed, holding his little hand.  We kept the TV on cartoon network so he wouldn't miss Teen Titans.  Sometimes when we talked to him there would be a little bit of movement in his hands or an ever so small nod of his head.  I even saw a tear fall when I told him that I loved him, not to be afraid and that I was right here with him.  That broke my heart because while we were told he would have no memory of his sedation, he could hear everything we were saying to him.

I know I was out of work for a while.  I can't remember how long, maybe a week before I would slowly make myself go for a few hours a day.  It killed me to be away from the hospital not knowing if something were to go wrong, would I get back in time?  Working helped a little, but I could tell that people didn't know how to act around me.  They were afraid to talk to me.  I get it.  I totally get it.  When you see someone what's the first thing most people say?  "Hi!, How you doing?"  Well, you kind of think twice about saying that to someone who just got told their kid has cancer so instead, you say nothing at all which can at times be even worse.   If you're reading this book because you want to understand what people go through who have a child with cancer, know this.  TREAT US NORMALLY.  Don't ignore us because you don't know what to say.  Say hi to us.  If you don't want to ask "how are you" then say perhaps "How are you TODAY?" Maybe just say "hi" if you don't know what to say, just don't ignore us.   Sometimes all we need is one person to acknowledge us to make us feel better about being there.   If we go back to work it's for 2 reasons.  1.  We have to.  2.  We need to feel some type of normalcy in our lives that have been so rudely and abruptly turned upside down.  Don't be afraid to talk to us and don't be afraid to listen either but be prepared for either a wealth of information or a short quick response.

When I returned to work I had so much anxiety walking through that door.  Don't get me wrong, the people I work for are absolutely wonderful and are taking such wonderful care of me while I am missing time from work.  I just didn't know what kind of reception I was going to get, how I was going to be able to handle that one person that came out with the "c" word instead of leukemia. I still hadn't come to grips with Leukemia.  Never mind someone calling it cancer.  I was afraid that if someone did that I would totally lose it.

It was nice to see familiar faces and everyone was so wonderful.  At first, it was just an escape for me.  While I did answer the phones and try to do a little work, I mostly just breathed. Over the course of time, I did do more and more but I really didn't spend too much time there.  Generally, just a few hours and then I rushed back to the hospital.  With Axel in the PICU, there was no telling what would or could happen so I didn't want to stay away too long.

This was going to be a long road of uncertainty.  Bill and I just sat in the room in silence, we would stand by his bed, holding his hand, whispering to him, giving him kisses on his hand.  Every little bit we felt was encouraging to him to know that we were there.  I slept in the room with Axel as I was too afraid to sleep anywhere else.  The beeps would start in the middle of the night and wake me up instantly.  There were a few nights in the beginning that Bill and I both spent the night in the room with Axel.  Two of us sleeping together in the pullout chair bed.  Anyone who has ever had a child at CCMC knows that they are barely big enough or comfortable enough for just one person.  We made it work because we weren't about to leave any time soon.

Watching Axel fight for his life was the most grueling, heart-wrenching thing we have ever had to go through.  Here was our little boy, sedated, a tube down his throat, tubes in his chest, catheterized and swollen to 5 times his normal body size from all the fluid.  I've never prayed so much in my life.  I've always been somewhat religious as I would go to church when the mood hit me (yes, I know that doesn't sound very nice), I believe in God, Jesus and that he died for our sins.  I'm just not overly religious.  I try to do good and to be a good person and I think that's really important.  Here I was, praying and praying day in and day out to God thinking he's not going to listen to me - I only talk to him when I need his help.  Still, I needed to give it a whirl.  I felt good and it calmed me in a way and Lord knows I needed "calming".

Axel had a lot of issues going on when he was in the PICU.  The fluid in and around the lungs, typhlitis, an enlarged spleen, a strain on his heart and a scrotum the size of a grapefruit.  Oh, I'm sure there were more than that but our brains were in a blender from day 1.  We listened to everything we were being told but some just slipped through the cracks.  One thing for sure though it was enough that every night we would pray before we went to bed that we would have just one more day with him and every morning we would wake up wondering if this was going to be our last day with him.  It's a thought that no parent should ever have but it consumed us every waking hour of every single day.

It still does.




Sunday, June 24, 2018

Chapter 2



2

Chances are if you are reading this book it's because you have a loved one with Leukemia, know someone with Leukemia or have taken care of someone with Leukemia. If you have a child or loved one with Leukemia then you are probably feeling much of the same feelings that we did when we found out about Axel's diagnosis.  Anger, hate, frustration, fear, despair, helplessness, hopelessness amongst others.  It's perfectly fine to feel those emotions, cancer is a serious thing.  If you really think about it, how else are you supposed to feel?

When we were told that Axel has Leukemia, we just sat in that room in the ED at UCONN and cried.  We didn't know what else to do.  We were so scared and felt so helpless.  What we would have given to make it all go away. We couldn't do anything about it so here we are.  There are a lot of feelings that will surface that you didn't know you were capable of feeling and that's ok.  Just remember one thing:  Your child or loved one needs you to be strong, positive and happy.  If you aren't, how do you expect them to be?

It was time to make phone calls.  We had to let everyone know but it was very late and there were only a few people we knew we could call at that hour.  The two we were dreading the most?  His mother and father.  I took Jennifer and Bill took Michael.  They were simple, to the point and as caring and compassionate as we could make them.  Michaels first words were "is he going to die?" and Jennifer just cried. We hated making those calls but knew we had to.

I went to CCMC in the ambulance with Axel.  Bill took his car home and then had someone else give him a ride back to UCONN to get my car and then he met us at the hospital.  With everything that was going on, do you know what Axel was concerned with?  Whether or not they were going to put the sirens on for him!  This kid is unreal.  Here he is, at the beginning of the biggest, mightiest battle of his life and he is worried about a siren!   It turned out to be the longest ride of my life.  The anxiety was overwhelming but I tried not to let Axel know.  It was a good thing I was strapped in behind him so he couldn't see my face.  The last thing I wanted was to let him see how scared I was.

We finally got to CCMC and were brought to one of the rooms in the ED.  I don't even know how long we were there before Bill showed up.  Maybe 45 minutes, maybe an hour.  I think it was another hour before they had a bed ready for him and we were brought upstairs.  MS8.  The Hemonc floor.

We started out in room 809.  Right across from the nurses' station.  Pretty convenient if you needed anything. Now we were going on 24 hours with no sleep.  Axel was settled into his room and we didn't know which end was up.  Our normal was changing.  Our lives were changing. We were watching our little boy sleep with uncertainty.  You bet we were scared.  I can't even remember how much sleep we got.  I'm sure we dozed a little but sleep was something we did not get much of.

We were only on the 8th floor for a day before Axel had trouble breathing.  Not gasping for air or anything, just shallow.  The pain in his chest was getting worse and he was starting to get pain in his belly.  Here we are, still reeling from the news that he has leukemia and now we have all kinds of doctors coming in because things were getting worse.

I probably should have started to write this book sooner because the small details and string of events are muddled now.  I try to pick things out of my brain and memories to piece them together but there are always a few pieces of the puzzle that I can't seem to find. Who knows, maybe I never will.

Axel ended up being transferred to the PICU on August 7th or 8th.  After a barrage of x-rays and CT scans, they found that Axel had an excessive amount of fluid in his chest which was causing the pain.  As a result, tubes had to be put in his chest to drain the fluid and he had to be intubated to help him breathe.  He couldn't do it on his own anymore because his lungs were getting to heavy with the fluid.  I can't imagine any 9-year old that would be comfortable with a plastic tube in his throat so they had to sedate him and this is how he remained for a little over a month.

My sister Mindy is a trauma nurse in Oklahoma.  Yes, here we were dealing with cancer but she knew all about PICU and what they were doing.  If I had a question about a medication, she knew the answer.  If I was confused about why they were doing something, she would explain it to me.  Sometimes I would try to tell her what was going on or what they were doing for Axel and I wouldn't be able to relay the information to her accurately.  Given the circumstances, I just gave them permission to talk to her about Axel's condition and treatment so she knew what was going on and knew what to say to me.  I don't know if I ever told her how much that meant to me so if you are reading this book Mindy, I love you so very much for the way you helped me and I want to tell you how much it meant to me. How much you mean to me.  I don't think we would have gotten through the PICU stage of his leukemia had you not been there for us.

After we were admitted I decided to start a Facebook page for Axel so I could post every day about his progress, good or bad and keep everyone up to date at the same time.  It would end up being good therapy for me as well.  Having an outlet allowed me to "vent" while at the same time feeling welcomed support from so many people, a lot of whom I have never met. Those first few days were brutal. I was answering a text almost every 10 minutes and was always saying the same thing to about 60 different people.   I didn't want to keep doing that so on August 6th, our group 'Friends of Axel Sundberg'  was born.



© 2018 M.J. Williams


Thursday, June 14, 2018

Chapter 1


1



Axel has been a part of our family since he was five months old.  Maybe it was six. Yes, definitely six.  It's been a long time, lets put it that way. No, we didn't adopt him, he's our grandson. My oldest son is his father.  Having him with us for the past 9 years has been a blessing at best.  We both had kids that were grown and out of the house and were in no way ready to take on another child.  Needless to say, we did what we had to do.  The circumstances were less than pleasing that led up to Axel being with us, but that's a story for another day.

Axel was always an extremely healthy child.  Rarely did he have a cold, fever, stomach ache, headache, etc.  Hell.  I think he threw up twice in the 9 years he's been with us.  It was always easy for us to tell when something was wrong because of the fact he was always so healthy.

Summer 2017.  Axel just finished 2nd grade and was looking forward to starting 3rd with his first male teacher.  This summer wasn't any different than any other. We were planning all the usual summertime activities.  We set up our pool, went to Vermont, Bill and Axel went fishing, we spent time with friends or just hung out at home.  

Sunday, July 16 we had been invited to spend the day with one of Bill's friends at a lake house they rented for the week.  We had a really nice time visiting, going on the boat, tubing and if I'm not mistaken, Axel even went for a ride on the jet ski.  We ended up spending almost the whole day there but had to cut it short to get home for Sadie, our dog.  She was getting up there in years and not knowing what we were going to find, we figured it would be best to head home around 6.

Arriving home, we knew right away something was wrong when we saw her.  She couldn't stand up and was just laying on the dining room floor.  Bill had to pick her up and carry her outside to relieve herself which she did promptly.  It wasn't long after that, she just laid down on the grass and we knew at that moment that she wasn't going to get back up.  Surrounded by her family and with her head on my lap, our beloved Sadie quietly took her last few breaths. 



This would be Axel's first experience with the loss of a pet.  He did remarkably well for an 8-year-old.  He cried, he hugged her, pet her and then got up and went about his business.  Sometime later that week, when Bill was sad about the loss of his best friend, Axel asked him why.    "Pepe, why are you so sad about Sadie?"  he asks him.  Bill would reply with the obvious answer, "because I miss Sadie so much.  Don't you?"  "Yes, I do Pepe but I'm over it."  pointing to his heart he continued, "because she will always be right here."    Such an amazing kid.

The next couple weeks were pretty normal.  Axel went to "kids camp" at the local child care center in the morning, Bill and I went to work then we are home, swim in the pool, miss the dog, look for a puppy, etc. 

Friday, July 28 Axel woke up and didn't seem right.  He was a little flushed in the face and just blah.  No fever, no cough, no sniffles, just a headache.  He went to his camp and about 1:00 I got a call at work that he had a fever and wasn't feeling well.  His fever was 102.

I tried to get ahold of his pediatrician in town and explained that he had a headache and a high fever.  I was asked if I could come in on Monday because they were really busy and didn't have an opening.  Really?  Three days after I call with a 102 fever?? at that point, I figured he was fighting a bug so I took him home gave him some Tylenol and he slept.  When he woke up he felt better but then Saturday and Sunday were pretty much the same so I made the decision to take him to the walk-in center on Monday if the fever still persisted.  Come Monday am his fever was back up to 102 so I just took him in. After examination, Axel had all the symptoms of a sinus infection so that's what they treated him for with  Amoxicillin for the "infection"  and Tylenol for the fever.  If it wasn't better by Wednesday I needed to bring him back.

Everyone who has had a child in daycare knows that they are not allowed until they are fever free for 24 hours.  We never got to that point so Axel had to come to work with me.  He was doing ok, otherwise, just had the persistent fever.  By Wednesday we were still doing the fever thing so I took him back in and this time he was given stronger meds.  I was starting to get a little concerned at this point because for one, this wasn't going away and for 2, it seemed to be getting worse.  "If it isn't better by Friday come back.  We will need to do more tests."  All I could say was "Ok."  

On Friday am, Axel was just "not right". He was complaining about his headache and the fever was more persistent.  Around noon, he started complaining that his chest hurt and his side hurt.  I called Bill after that as I was starting to get worried. More worried than I had been already.

"Something is seriously wrong with this child.  They are missing something and I'm not fooling around anymore." I told him.  "Meet me at the UCONN ED after work."

I work in West Hartford so I am only 7 minutes away from UCONN.  I called Bill as soon as I left work and he said he was already on his way.  Being as close as I was, Axel and I got there first so we waited for Bill to arrive and go in together.  I think we finally got there around 5:20 or so.  We didn't have to wait very long before Axel was called in.  They took one look at him and immediately took his temperature and ordered a blood culture. Temp was 104.  

The waiting was torturous.  The blood had to be sent out to their lab so the not knowing was absolutely killing us.  They kept giving him Tylenol for his fever, put ice packs on him and pretty much that's all they could do.  We sat there wondering, worrying, and just comforting an 8-year old that didn't feel good and was obviously uncomfortable in his chest and side.  His fever did finally break so he was a little more relaxed but it kept coming back and he was right back to being uncomfortable again.  It was an extremely vicious cycle.

Around 10 a bunch of people came in.  In all my experience with hospitals and ER's, it's NEVER good when a lot of people come into the room.  One was the resident doctor and the others were interns I believe.  

"We got the results back from the blood tests.  It's not good."  Those were the first words we heard.  "His white cell count is astronomically high.  We ordered an ambulance to take you to CCMC.  Your child has Leukemia."

©2018 MJ Williams

Living With Leukemia-Prologue

Cancer is a big part of this world, too big I think. Especially when those afflicted are children.
This book is about a journey. A journey that started only 10 months ago. A journey of a family whose perfectly healthy child was suddenly diagnosed with Acute Myeloid Leukemia. A story of their struggles, obstacles and many challenges as they fight this battle together.
It's my story.


Prologue

You know those commercials that come on T.V., asking you for money to find a cure for this disease or that disease and you donate what you can because you can't imagine what its like to ever go through something like that?  I dislike them so much. I loathe them in fact. Not because they ask for money, but because children are sick.  So sick in fact that some die. No child should die. Not one.  I hate to think of what their families are going through, finding out that their child has some type of cancer or another debilitating disease that is in some way life-threatening.  I thank God that it isn't my child and give what I can to support the cause.  I throw my change into the Ronald McDonald house donation bin at McDonald's drive-thru when I get my coffee in the am, knowing that it's a place where families can stay to be close to their sick child and not have to worry about high-cost accommodations.  I can't afford much, but I know that every little bit helps and I can only imagine how grateful I would be if I were in their shoes.

I go about my daily business never giving it another thought.  I complain about the weather, get tired of doing the same thing over and over again.  Bitch about the phones and the traffic on the drive home. I dread the thought of living another day like the one before, yet it happens all the time and somehow I manage to get through it.

Then it hits like a ton of bricks, knocks us on our ass and we stumble to our feet thinking our whole world will fall apart around us.  Our child has cancer.  Our child has cancer.  Words I will never forget hearing. Never in a million years would I have thought it could happen to us but it did and now we have to figure out how we are going to get through something like this.  We have a new normal now.  A normal that others can not comprehend.  Others who are blessed to have healthy children. Others who can go to work every day and come home to a healthy family.  Others who can watch those T.V. commercials and say "I am so glad that hasn't happened to my family."    You know, things that we used to say before Axel was diagnosed with Leukemia. Before our lives changed more than we could ever have possibly imagined.





© 2018 M.J. Williams

Sunday, May 1, 2016

5.1.16

Occasionally, well, ok often, I feel the need to vent about my pathetic life.  If I don't like it, change it you say?  Ok, no problem.  I'll just come up with thousands of dollars for an attorney, thousands of dollars for a psychiatrist for a seven year old that was ripped away from his "dad", friends, school, and every bit of security he has known, live in a homeless shelter or in my car because I can't afford a rent.

It really pisses me off when people think they know so much about someone elses life.  You know what? YOU DON'T so stop acting like you are a perfect, all knowing human being.  You don't know shit about my life, what I've been through and what my current circumstances are so until you do - I have only one thing to say to you: SHUT THE HELL UP AND MIND YOUR OWN DAMN BUSINESS.

I deal with a lot of shit and I consider myself an extremely patient person.  I'm a very loyal friend, a genuinely nice person, I trust too easily and get hurt too often.  I pick my head up and move on.  I deserve respect, consideration, compassion and understanding.  If you want it, you had better be prepared to give it.

Sunday, November 29, 2015

11.29.15

The Thanksgiving Holiday has officially come to a close and the Christmas holiday has officially begun. Sure the commercialism of the holiday started in September, but I refuse to take any part in it until the day after Thanksgiving, when I begin the traditional Christmas decorating.
I almost finished with the decorations today, leaving a few outdoor wreaths and the tree which is usually last due to the major re-arranging of the living room to accommodate it for a month.

I have to say that the house is beginning to look Christmas-y, but still quite messy as I have boxes and toys laying around that I have yet to put away for a few weeks.  I'll finish up during the week, hopefully and then I can relax and get back to some sort of normalcy until its time to take them all down.

I look forward to the evenings of driving around town looking at all the lights and decorations, maybe taking a trip to Bright Nights in Massachusetts, the snuggles under a blanket, warm hot chocolate, Christmas shows and festive music. Christmas truly is my favorite time of year.

Now if I could only remember to move that damn elf.............

Saturday, November 28, 2015

11.28.15

I spent most of Thanksgiving day baking, cooking and cleaning.  I never did like Thanksgiving for just that reason. Why can't it just be a normal day, normal dinner, normal routine with "what are we thankful for" added in?
I envy those women who have mates that help them.  I do everything alone from start to finish while mine is hunting in the morning, comes home and sleeps on the couch to a point where i get everything on the table and by the time he finally gets off the couch, i'm microwaving my plate to reheat everything. Sure.  I'm thankful that I have food to eat, a job to provide me with the money to buy the food and pay my bills.  I'm thankful for my grandson and that i have a roof over my head because I know that there are others that do not.  Other than that, I find it hard to be thankful for anything.
Friday and today, I tried to get into the Christmas spirit.  Most anyone who knows me is aware that I spend the weekend after Thanksgiving putting up Christmas decorations.  This year however I am finding it very hard to do anything. I got almost all the outside decorations up on Friday, and worked inside today.  I still have a bit to do, but since I started using the 3M command performance system for my decorating, I need to get the adhesive backers every year.  Off to Walmart tomorrow it would appear.
So tomorrow will be spent shopping at Walmart for supplies and whatever groceries I need that are cheaper there.  Then off to the grocery store and back home to decorate some more and get ready to go back to work on Monday.
Depression sucks - it drags me down and takes away the joy I once felt this time of year. Now I feel like I do it just for Axel.  If he weren't here, I really don't think I would put forth the effort with the decorating.
At least there's one thing I can look forward to - I can wear all my Christmas sweaters now.  I think I have almost enough to wear a different one every day until Christmas.