An important race track. On so many levels.

"🎼 🎧 🎹 🎻 🎤", the music played the background. 

It was faint. Also blended into the muffled sound of other shoppers, beeps and buzzers. 

"that's a stupid song", I mumbled to myself. I took a deep breath. 

"🎤 🎻 🎹 🎧 🎼", the music played in the background. 

Ug. 

Its no longer faint. I can't here the other people anymore. The Isle smells like a mixture between molded rubber and pet food. This music is incredibly sad. Its cold in here. Should be warm.

"why the fuck would a grocery store play such fucked up sad music!", I mumbled loudly, trying to fight back... 

I was searching deep .. Trying to focus on the dog food. The price. Color of the bag. Then I thought of Fallon and how she hasn't had regular dog food since breakfast on tuesday. She ate, and she loved it. It wasn't the regular. But I thought about how unfair this all is to Fallon. I felt as if I had let her down by not giving her dog food for a couple of meals. 

TO FALLON?  I let Fallon down? 

NOOOOOOOOO

I can't hold it back. 
No Mike. 
Fight it. 
We are in a grocery store. 
Keep it together. 


Deep Breath.
DEEP BREATH

Ug. I need to get out of her. 

"ok. ok. ok.", I said out loud hopping no one else was in the isle. They will think Im crazy. I haven't shaved, or had a hair cut in a week. I smell. I need a shower.

When will I have time for a shower. 

DEEP BREATH. 
DEEP BREATH.

In through the nose. Out through the mouth. 

Stupid sad songs. I hate them. 

Then it came. It overpowered me like the ebb during a bad tide. ??
I could not stop it. 

Thats OK... :)

----------     ----------     ----------     ----------

Crying is good. 

The above happened this morning at the Market Basket. Kezia and I were on our way back home from Kezia's yoga class. She was in the car. 

This is my reality, however Not a common occurrence. Most of the time I can make it out of the store, or where ever I am at the time. 

Its part of our exclusive dues. These dues may or may not be due every day. But on the days they are due.. there is little or no warning. 

Positive self talk. Many counts to 5. Sometimes 20. Sometimes to a 100. Deep breathing and visual realization exercises. 

Thinking things through logically. Talking.. or for me, venting to others.

A lot. To much I think sometimes. I do fear I wear out my welcome to my buddies when I need to vent. 

Just an excuse to avoid. So I push and keep asking. 

They keep listening. 

I have an extremely large amount of pressure on me right now. I am the caretaker of my family, business & home. With one of my family members sick. The other dead. 

By the way.. we are coming off of Saoirse's birthday week. Its been an excruciating amount of pain this year. 

I put so much into other people that its easy to neglect myself. 

This afternoon I was sitting at my computer working and waiting for Kristina to bring Lochlan home from a morning of fun and adventure at Grammy & Grampa camp. 

I was overwhelmed by the fact that we will need inventory soon. And we need the cash for it. ORRRR all of the medical facilities that owe us money can pay us on time. Or not in 45 days. We will make it. 

Customers. Inventory. Get more customers. Clinical trials. Kezia. Saoirse. Lochlan. Fallon. The house. The camper.

WE need to sell that thing. Now. We need the money. 

Its a tremendous amount of stress managing a start up in the medical industry. Its a constant uphill battle. However there are great roads on the horizon. Its a far horizon. 

I was feeling very stressed and Lochlan would be home soon. 

I had to get it together. 

Then I received a text message out of the blue from Emily. It changed my day. 

"You need to take 10 minutes a day strictly for yourself. It's not optional -- you need to mentally have something to look forward to and a chance, even a small chance, to reset every single day. As a caregiver you are taking care of everyones needs and it's easy to say your 10 minutes a day can be skipped bc there are "more important things" to do but you have to fight that instinct. Im insisting that you do. I know that 10 minutes a day isnt enough obviously but it's something and it's consistent and it's mandatory. If you get sick or you burn out youre no help to anyone -- to put it bluntly -- so you cant allow that to happen if for no other reason than that. And taking care of yourself -- including taking a shower and getting dressed every day whether you feel like it or not -- is part of that insurance that you can keep going and keep being there for the people who need you. I know youre putting you last bc they need you but if you neglect yourself youre not helping them either. Esp L who's watching you closely...as you know. Please trust me on this even though it goes against what youre feeling right now..................

Your 10 minutes can be a walk by yourself or a shower or a beer or whatever you want -- whatever makes you happy in that moment.........."

I let her know that she made not only my day, but also my blog. 

I felt it was important to share this because everyone needs a friend  like Emily in their lives.

Its important for me to let people in. To humble myself and step back for a moment and say "wait what?" - https://youtu.be/bW0NguMGIbE (thank you Dean Ryan from Harvard Graduate School - Ill write about this later and no I am not a Harvard grad, but would love to get my MBA there. Or Doctorate. I saw this online)

Sometimes these people are already in our lives and we just don't know it.. 

or want to see it. Or accept it. 

For me this happens when I put blinders on and get so focused on projects. This creates more stress and then that stress comes out sideways. Usually frustration and anger. Yelling. 

Emily politely, yet bluntly told me to remove my blinders. 

I agreed. My day went on. We had a great intake meeting for work with the NEPDC. 

I am still behind in EVERYTHING. I am still stressed. I am still deeply, very deeply sad. 

However my perspective has been a bit different today and that has greatly helped my emotional self and allowed me to stabilize my day. 

And so are my expectations on myself. 

Thank you Emily. 

Tomorrow I start all over again. But I will take that 10 minutes. Ill tell you about it. 

Lochlan and I had a great art filled afternoon building a race track out of construction paper for his new matchbox jeep. I video'd the entire time and will edit the video and put it up this weekend sometime. Until then here is a small blurb to end the night. 

I want to start off by saying that our life does have a lot of positive. I will write about it I promise. I am working on finding my writing balance. I know what I want to say, but sometimes I don't know how. I have a lot to say.

Its all part of our club

I also need to mention that I am, and can be pretty forward in my writing. Sometimes blunt. Yesterday I wrote about support. Let me say that there are some people who go above and beyond to be with and to help Kezia and our family. You know who you are. We know who you are.  I am not speaking to you in some situations I write about.

I do not, nor will I apologize for what I write. This is my life and I'm writing from my perspective.

Also. I am communicating how I feel and on what I see, and hear about from Kezia and our life in general. She tells me her needs and wants. We do communicate - sometimes not very well, however we make the effort with each other.

I want to write dialog about something that happened a few years ago. But I'm a bit thrown off on writing today. I am not sure if its a "self-conscience" think or what. I started to think last night that no-one will read what Im writing, and if they do; they will think its stupid and just "another cancer blog about a family that lost a kid to cancer".


NO NO NO .. STOP THIS.

----------      ----------      ----------      ----------

Ug.. Tuesday mornings are now the most stressful day of the week for me. It use to be Tuesday & Wednesday. So things are getting better. My anxiety races and my heart pounds hard. Its bad sometimes.

Kezia has treatment on Tuesday mornings. When she could drive, she would drive and meet her mom up in Haverhill and her mom would take Lochlan to her house, or shopping, or the studio, or park. Kezia would go on to treatment.

This gave me a whole morning from 7am to noon or 1pm alone. No one home but me and the pup. Work Time.

Time for the daily dues for our club.

That sounds like a normal morning for most, or some. Wife or hubby takes kids to school, daycare, nanny, granny, shopping, etc.. A car is involved. ..

Here it comes.

For me, when my family gets in a car without me and I am not driving, I panic. I fear something is going to happen. I can not protect my family if I am not with them. Its overwhelming sometimes.

Its scary enough when my child drives in the car with a family member. It gets even worse when my child and/or wife gets in a car with a non-family member. I feel scared and vulnerable in that moment.

Deep breath.

Plus. I do not trust other drivers. Not anymore. It wasn't long before Saoirse was borne that texting became a big thing. This added another distraction on top of tuning the radio, talking to others in the car, thinking, looking for that perfect song on the portable music device, reading a book, grading papers, reading the newspaper, drinking, smoking, smoking pot, reading a map (paper and phone), putting on makeup (seen both men and women do this on highway), etc.

I have done a lot of commuting in my life. I'm sure you have too. I've seen some scary messed up stuff that people do while driving.

Now texting.

Yes, I have tuned my radio while driving, talked to others, I think while driving and have eaten while driving.
Yes I go to the extreme sometimes. Its part of the club. Its a constant fear. Its getting more manageable though.

An Important PB & J and a Smile Post #3

"Daddy.................. Daddy.", said the determined little voice.
"DADDYYYYYYYYYYYYYY. ...............DAAAAAAADDDDDDDYYYYYYYYYY. AN YOU LEAAAAASE UM UP EARRRR", screamed the more determined little voice in perfect toddler language.

I just put him down for bed. Its 7:45pm and Lochlan has been up since 7am. He missed his nap. I kinda did that on purpose (its not wrong).  I really needed hi to go to bed and go to sleep. Lochlan sometimes gets out of bed 2 or 3 times before he settles. Usually he needs a "sip" of water; or he has to "all of the sudden" poop. Or he wants  to talk. Or he wants me to rock him in the rocker just "one more time". Or he wants me to sing to him. Usually muffin man on drurey lane.

Ug. I am so tired and hungry and I have some great momentum going on putting stuff away and cleanup up our clutter. I feel pretty good about what I have done today and better yet, its going to make Kezia feel good. Something about a non-cluttered house. More importantly, a non-cluttered entranceway.  I still have about 2 hours worth of work to do and I still have not eaten dinner. Its going to be ok; Ill get it done and he will go to sleep. Ill be ok.

Deep breath.

"DADDYYYYYYYYYYYYYY. ...............DAAAAAAADDDDDDDYYYYYYYYYY. AN YOU LEAAAAASE UM UP EARRRR PLEASE. please um up earrrr leasssseeee", he yelled and sadly whispered all in the same sentence.

I need to let him cry it out a bit. I can be strong. I kept working - I did "8" loads of laundry yesterday. I shifed some wet clothes to the dryer and then focused on the broom. I needed to sweep.


...........

Crying baby. Broom. Need a clean floor. My mind shifted to a night in the hospital with Saoirse. Many nights actually. Crying. I need to sweep. She threw cherrios and french fries on the floor and I need to clean it up. She won't stop crying because her scar hurts her. Its healing. But it still hurts her. I can't help her. I can't take the pain away...........

..........

Sorry. I digress.

The crying baby is not Saoirse. Its Lochlan. I quickly snapped back and shook my head and took a deep breath. By the way.. its difficult to describe this but the type of digression is the kind that forces me to stop everything and just stand there. I feel the breath leave me. Yes, it knocks the wind out of me.

Its part of my club

Anyway, back to the story. Lochlan kept yelling for me to come up. I gave him 5 minutes and then answered him.

"Why are you out of bed Lochlan?", I firmly asked him.
"I need a sip leaaassssseeeeee!". He firmly stated to me.

OOPS I forgot to give him a sip. Oh well..

"ok sorry bud. I forgot too!", I said as I walked up the stairs. There are some dust bunnies on the stairs, I need to vacuum. Tomorrow Ill start pulling stuff out of the bedroom; when will I have time to prime the room before everyone gets here on Sunday to paint it.  I wonder how Kezia is doing. Is she eating? I hope she is sleeping and getting rest.....shit that office needs a lot of work.. I need to get that done.... oops.

"ok thats ok", my toddler said in an understanding voice.

He had is sip and went to bed.

------------      ---------------      ----------------      ------------------

Doing that much laundry is good.. However it creates this: and there is more in the dryer now and an overflowing basket waiting to be dryer. I have my work cut out for me :) Life. 

This morning I am stressing on a few different things. 

One: Lochlan. 

Two: Kezia

Three: CareAline: Our business

Four: Mortgage: we are on the verge of foreclosure

With being a single parent right now: let me clarify, I am not single. Currently I am single parenting due to Kezia's treatment, time management is key. Wish I was better at it. 

I stress that Lochlan isn't getting enough exercise and learning time. So Monday's are one of the only days I do not have any help at all. So I have gotten into the habit of plopping him in front of the TV with his favorite learning shows - Bob the Builder; Thomas; The Hive; Learning Math. Or Before the Land of Time. It depends on his "mood". This is no longer acceptable. So starting next Monday we will do something completely different and no more morning TV. 

You will see.. and read about it. 

Then its Cherio time while I cook him an egg and toast, or Oatmeal with peanut butter. Sometimes pancakes.

He eats and watches, I make sure he has plenty of water and I get caught up on Emails for our business CareAline - 

Then I think about Kezia. I worry about her. Yes because she is sick. But more now because she is not getting the kind of support, both emotionally and mentally, that she needs. She desperately needs this. 

Kezia decided to do non-conventional treatment for her relapsed Hodgkins Lymphoma. (see her blog: http://newmomnewcancer.blogspot.com ) 

This seems to have changed the course of her support after making this decision. This is complicated. Very complicated. Saoirse is mixed up in this somehow. So is Lochlan. 

She is still a human being. 

Type of support. I am angry at a lot of people for basically shitting all over Kezia. Here we go. I am off and running now........

Ok... Soairse. Her birthday was on June 1st, 2016. She would have been 6. 

While there were a couple of text messages and posts on Facebook to Kezia and myself - no one called us. Apparently it states on the internet somewhere that your not suppose to contact the family who lost a child on the said lost child's birthdays because it will remind them of their child. 

WTF? 

Deep breath. DEEP BREATH - KEEP BREATHING AND FOCUS. 

This was an excuse from someone once on why they don't call Kezia. 

You are not that special. You do not have the power to "make us remember", or "trigger" memories of our daughter. 

It is part of our exclusive club's daily dues. Oh, these particular dues are "Due" as soon as I wake up. No exceptions. Although the dues get easier to accept and cope with as time goes by. 

----------     ----------     ----------     ----------

.......... I had to stop writing and walk away. Its been a few hours since I wrote the above. 

I was starting to get really pissed over some things I have no control over. First I discussed kezia getting Shat on by some (a lot of) people for her Tx choice; then I touched the surface of people not calling on Saoirse's bd. I felt an immediate intervention was necessary. (Please note: If you did send a note on Facebook or by Text then I am not talking about you)

Yes, I will let it all loose at some point. Because I need to tell you about it all. Its important. But not today. 

I need to be there for Lochlan and me sitting on the computer potentially writing something I may regret, only to fuel my frustration and anger, was silly and not fair to him. Nor do I need that added stress. I asked him if he wanted to go for a walk and he immediately said, "YES PLEASEEEEEEEEEE". He is so cute. 

Call. It helps. Not every day. Once and A while goes a long way. Don't be emotionally restrained. We are not. I assure you. 

I accept very few excuses. As a matter of fact, I don't want to hear excuses. At all. Or justifications. All of that does not matter. I am not discounting your feelings; or the fact that you may not know how to handle the emotional part of it.. I get that. I don't have time to hear it. Neither does Kezia. 

She needs to hear "I love you". "I am here for you". Or a simple "Hi". 

My business needs to be tended to.  I'm glancing over at Lochlan's PB & J and I am guessing I have about 10 more minutes of keyboard time before its time to wash hands and go back outside to play Frisbee. Oh, he heard me. To late, he is rushing to eat so we can go out :) 

Until Tomorrow. 

M

NO NO NO NO

"Hi, I need to find organic rated pesticide to get rid of flea Beatle and slugs on my tomato plants.  Which way to the safe spray soaps?" I asked the the guy in orange.

My PawLaw told me what was wrong with my tomato plants. I needed to fix them right away.

Wait, wait. Should I be doing this? Why am I here asking for this. Will my kid get cancer because I spay our veggies? fuck. What do I do? What if I spray it and Lochlan develops a lump after eating the tomatoes. Let me read this label again. Fuck. Fuck it its rated for "organic gardening". Apparently I can eat my veggies and fruit right away after spaying. Whew.. that makes me feel better.

No it does not.

"Isle 3 sir, follow me", said the ever to happy to help me guy.
"I'm good", I quickly said.
"I'm going to take a quick look at these riding lawn motors first, thank you".

I hate it sometimes when I'm escorted to the isle and area that I need. I feel like I am obligated to rush. They always walk fast.

Walk fast. fast.

Sorry... my mind wonders sometimes. Its part of my exclusive clubs daily dues.

I have a rare night tonight. I planned this because I needed this.

You have no idea how much I look forward to a night where I can do what I want and not have to stress on when Lochlan is going to stop getting up out of bed and actually go to sleep. Or worry about if Kezia has had enough food. She is with Emily and I know she loves that. She needs that get away too.  Or need to plan Lochlans morning. This freedom for just a few short hours is refreshing.

Sort of.

Kezia is at Emily's and Lochlan is Grammy and Grampa's for the night. I am by myself tonight. rare. I planned it because Kezia is very sick. She need to be with Emily this weekend. Ill go more into this later.

The dialogue above happened tonight at the the Home Depot in Danvers. The one my side. Yes.... Danvers has an abundance of home improvement and garden centers. I told myself that I was going to take this rare opportunity to relax. Sit and eat. Sit and watch something with out stressing.

What did I do? I worked in the garden. I added string to my pea stalks so they have something to grab onto . I listened to music in my garage. (my man cave). I stressed about Kezia. Hard. I think about her all the time. I worry. I am angry. She shouldn't be sick. Fuck. This is happening all over again. I need to clean the house. I need to vacuum and clean our bedroom. She can't breath dust and mold. I need to change sheets. Shit I forgot I need to get lochlan's laundry started. Wait should I do towels. Let me take a look at the bathrooms. I think I should clean and vacuum. Wait wait. I need to slow down and focus. ..... Wait wait wait. Lets focus. NO NO NO NO NO

Don't think about it. NO NO NO NO NO.

NO NO NO

I can't tell you about the images or situations that cause me to scream NO NO NO NO. Not yet. It will scare the shit out of you. Get to know me more.

This happens. I ramble think. Its part of the dues.

I am going to make my nachos. My teeth hurt ( I need 2 root canals). I wonder if Saoirse's teeth hurt. Did she ..

NO NO NO ... I see the team around her. They are trying to incubate......

NO NO NO...

I say "No no no" out loud. It helps to rid of it. (Only people in the club will get this.. Sorry)

Ok.. in the morning I can finish planting. Where are those pumpkin seeds?

No.. I am not going there tonight. Does Kezia's teeth hurt? Do her tumors hurt? I wonder how her hear and breathing are tonight.. Wait wait.. I can't.

I am suppose to be relaxing and decompressing. I am going to find a movie to watch. I told myself that I should watch a movie. It will help to slow my mind down. My wife is sick.

Sometimes having time alone isn't what its cracked up to be. There is only a few places that I have had total peace since .. Well, since Saoirse died. Ill write about that later.

Lets give it a go. I'll write tomorrow about the movie. I have no Idea what I'm going to watch. But you will hear about it. Ill also write more about Kezia. I need to. Fucking cancer.

M

I belong to an exclusive club. You can not join.

"What can I get ya?" Muffled the lady
A few seconds passed.
"Hello? Do you want a drink and can I get you a menu?"

I was in space. I knew someone was talking to me and I knew why I was there, but I just couldn't comprehend what she was asking me.

I can do this. Deep breath............

A few more long seconds passed while I fumbled through the drink menu pretending to look. I knew what I wanted, but I just needed a few short micro seconds to compose myself. 
I forced myself to look at her and speak. 

"Pint of Guinness", I said with a smile.

Then I sat and did everything I could to focus on the Red Sox game on the many TV's above the bar. Focusing in on the batters stance; swing; facial expressions. Then I focus on the pitcher. His eyes; stance; shoulder placement - the crowd looked very red. Lots of people - I wonder what their lives are like. Then I focused on all the people in the bar and wondered how many people were playing trivia. Then back to the TV. 
Whew. I made it. I think. I can do this. Deep breath. 

My heart rate was up and pounding. The kind of pounding that made my chest bounce. I recognize the pounding. It's a familiar friend - or foe. I'm not sure yet. I forced myself to close my eyes and take a deep breath and release it slowly.

My drink showed up. I was a bit out of my fog now and I said with a smile, "Thank you, can I see a menu please?" 

She grabbed one and gave it to me. 

My heart pounded harder and my anxiety was high. My sadness and grief came over me and I just put my head down. Deep breath

-----    ------   ------   -----    ------   ------   ------   ------   ------    ------

Ok now lets back it out a bit and take a larger look at this from a different perspective. 

The story I wrote about above is real. It happened on June 1st 2016 at the Sylvan Street Grill in Danvers, MA. It was Saoirse's birthday and she would have been 6 years old.  She died of #neuroblastoma. I go there every year on her birthday and do the same thing. I sit and order a pint of Guinnes, take a picture of Saoirse's ashes with the pint and then I sit and think about her smile and talk to her in my mind. Then I drown myself in the baseball game and decompress. 

Once I finish my beer - usually take about an hour to drink the pint of Guinness,  I go home and work. Ill tell you why Guiness and Sylven Street later. Its important. 

I am a dad and a husband. My name is Mike. My wife is battling relapsed Hodgkins Lymhoma and our daughter Saiorse died on December 13th, 2011 at the age of one and a half. We also have a 3 year old son who is amazing and healthy. My wife and I own a start up that is focused in the health care sector; vascular access and medical product innovation. 

This rekindling of my blog is a necessity for me. I need a sounding board, story telling and decompression medium to talk about my everyday life essentially being a single parent while my wife is in treatment and getting better, taking care of a wife with cancer, taking care of a 3 year old, grieving the loss of a child from cancer and running a start up. I need to talk about everything. My every day is a fine line between chaos, calmness and everyday life. 

This is a bit of my everyday life. It usually starts at 5am and ends at midnight or 1am 

I get up at 5am (usually). I put on water for coffee, let the dog out and then start focusing on the day. Worry. Stress. Anxiety. Think about Kezia. Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking; Saoirse - My daughter. 
There is laundry to be done and started, trash to be taken out, dinner to be prepped (take out frozen stuff if needed), ingredient inventory for dinner, breakfast and lunch planning, child care planning Kezia care planning and emails for work. Oh.. did I mention that I need coffee and need to take the dog out? 

Then I focus on work. Think about Kezia. Worry. Stress. Anxiety.  Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking; Saoirse - My daughter. 

Customers to take care of, inventory to manage and my daily schedule to revisit. Get the boy up; make sure wife is ok and still sleeping; eat; cram in as much stuff as I can in the short window while Lochlan eats. Drive Kezia to treatment, drop off Lochlan at inlaws (couple days a week) then - list to do for work; yard; car; dishes; laundry; food for Kezia; spend time with Kezia. Sometimes cut grass; yard work; clean; write and read. Whew.. Then feed lochlan lunch if needed; get him back outside to play to wear him out for nap. Teaching and parenting time. Bugs; spiders; cool; yellow dump truck; teach to throw frisbie.   Work. Thinking about work. Kezia. Saoirse. Fallon. Lochlan. Business partner. Hospitals. Etc. Play with Lochlan. Run around the yard. Errands  post office; bank (hopefully); Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking; nap time for lochlan; It keeps going like this until all is in bed and sleeping. Then I work more. Work Work Work. Laundry. Plan next days work, menu, errands. Worry. Worry Worry. Kezia. Make sure she has everything she needs. Stupid friends. Awesome friends. Family.  Oh, and I squeeze in food for myself once and a while. 

I think that by now you may be starting to understand that life is busy. Like most. 

I will start writing on a regular basis. Everyday sometimes. About my thoughts, frustrations, why I may have cried at dinner, why I yelled at the moron speeding down my street. I'm going to write what its like to start a business and bring products to the health care market innovated by Kezia in a desperate time of necessity and its frustrations and successes in the uphill battle to succeed in the health care sector; all at the same time as managing all of the rest of the stuff in my life. I hope to connect with you. Relate with you and learn from you. 

You can look at my past post's. But please know that I am not the same person that wrote those. I was chest deep in cancer treatments for my wife and infant daughter and caretaking in the frustrating world of cancer treatment Then at the end, an immediate grieving father after watching my daughter die a horrible death.

My writing is much different. I am 5 years out. I am writing as a dad. A husband. A caretaker. A business owner. An artist. 

I belong to a very exclusive club.

"I belong to a very exclusive club. 
We are a smaller club, yet are growing by the day. 
30 - 100 new members daily. 
I lost count.
We are worldwide. 
I will be part of this club for the rest of my life....and so will my family. 
Membership is difficult. 
The fees are high. Very high.
Daily club fees are due every day. 
Its mandatory.
No negotiation. 

I belong to a very exclusive club. 
I do not want you in this club.
You can not join. 
You are not welcome here.
You cannot inherit membership. 
I, and the rest of our community do not want you in our club. 
We do not want you. 

But we need you."

m

Until Saturday evening. Have a great day. 

M

Young Mom's cancer returns, she treats it with a homeopathic cancer treatment

Its been a while.

I have been grieving and writing, however not publicly. I decided the other day to start writing again. Not just to write about my continued griving of Saoirse, but to write about Kezia, who's cancer has just returned. I needed another outlet and writing is a great way to release.

First of all, I will be trying to post every other day. My focus is to release my feelings and thoughts about several things.. my wife's cancer returning, her choice of a homeopathic treatment course, an infant to care for, making sure we all eat healthy, grieving our daughters death ... just to mention the most. I am aiming to photo journalize not only Kezia's journey through relapse, but our families journey through her relapse and her course of treatment.

Here is the link to the latest CNN Health story on Kezia

http://www.cnn.com/2014/04/17/health/cancer-relapse-fitzgerald/index.html?hpt=he_t2

Good article on how anxiety lingers after cancer

I thought this was interesting:

http://well.blogs.nytimes.com/2013/07/12/anxiety-lingers-long-after-cancer/?ref=health

Its a New York Times blog on getting well and how anxiety lingers after cancer. There is also a focus on caregivers. 

560 = 560

today is the 560 = 560


Today is the same amount of days Saoirse has been dead that she was alive.

I am not even sure how to wrap my head around that.

A determined father

a dad - a poem - a dad's day.

June 16th.

I am not sure exactly what June 16th means.

I am a dad. I know that my perspective on Fathers Day is forever changed since Saoirse died.

But the reality is.

I will forever be a dad

I loved her. I taught her. I learned from her.

I will forever be a dad

I taught her. I learned from her. I loved her.

I will forever be a dad

I learned from her. I loved her. I taught her.

I will forever be a dad

I love her. I teach her. I learn from her.

I will forever be a dad.

a dad.

A Fathers wish and frustration.

Ok. I am sure there are not many people reading my blog anymore - thats ok because I haven't published my writing much. I do write, just don't publish much.

I need to publish this though. I saw how there is state police in another state selling t-shirts and raising money for the boston one fund. I get that the families need help. Seems there will be and is plenty of help.

What gets me is there were a lot of stars who showed up for special concerts to raise money, extra media coverage and people keep pouring money into the fund.

While I have understanding and sympathy for the families who lost family members and who were hurt with life altering injuries, I get frustrated because all of the pediatric cancers are getting whitewashed again.  I watched my own child die a very violent death - I see her death every morning at 630 am.

What I wish - A fathers wish - is that some stars would come together and have a special concert for Neuroblasotma - a pediatric caner that kills a lot of kids each year.  Not sponsored by any of the conventional cancer groups because contrary to popular belief they do little for Neuroblastoma or any pediatric cancer for that matter. We need someone to help us raise a lot of money to help kids with cancer. I challenge stars to actually do their own research and do this because its the right thing to do.

Right now Kezia is planning a dance a thon - More details to come soon. She is doing her part, working hard and doing all the work to organize a fundraiser. She could use some big stars to help raise attention and a lot of money for the trial (to be announced on her website this week) they will be funding.

fitzgeraldcancerfund.org

It is a 501 charity and we make NO PERSONAL MONEY from the foundation.

Its the not-for-profit scientist and pharmaceuticals who are working on cutting edge treatments - including NON TOXIC and LESS TOXIC treatments. The government forces you to make your child take Chemo - for Neuroblastoma that is more times than not very deadly.

As a parent - I am frustrated because I hear every day of families struggling, kids in pain and getting sicker and chemo keeps getting pumped into them. No way a child's body can keep up with the poison. The chemo kills the immune system and has no way or encouragement to come back.

Everyone has heard of Breast cancer, colon cancer, pancreatic cancer, lung cancer -

Have you heard of Neuroblasoma? If not, look it up. Pass the word along. Share and help with awareness. What is it going to take to start getting people to pay attention?

Do I need to dress myself in orange and walk across the US?

Come on people.

Mothers Day - Written by Kezia

A grieving mothers positive message on mothers day: 

"

Mother's Day...

Mother's Day.....

It's a day set aside each year to show your appreciation to your mom and celebrate those who are mothers. I remember being a kid and going to crafts in the park, picking out a gift for my mum, and wrapping it up knowing she would love what I found for her. I'm pretty sure that for the most part they were all things she didn't need and just took up space, but she always kept them (the only one I remember her using was the pocket tissue holder that lingered in her purse until I was at least in high school). I think to her, it was the fact that we went out and chose it on our own that made her smile. My poor mother has gotten her fair share of strange, non-usefull gifts from me and my sister over the years, and unfortunately she is a packrat, so I'm pretty sure they are all still somewhere in her house. 

For those of us who have lost our children, mother's day is usually a dreaded day as it approaches. It's a difficult concept to grasp - do we celebrate our motherhood, or do we reject the made up holiday and steer clear of the cards and restaurant carnations? I know people on both sides, and I can't fault either one. Emotions are nasty bitches sometimes, and no one should be told how to feel. 

So far I haven't had any luck with mother's day. My first pregnant mother's day, I was due just 3 weeks later, and I was tired, cranky, uncomfortable, bloated and pissy. Pretty standard for 8 and a half months pregnant. My second mother's day was spent in children's hospital. Saoirse had been diagnosed just 3 days prior, and we were doing her first round of chemo. I spent the whole day with her, holding and cuddling her, playing with her and focusing on making her healthy again. It may not have been my ideal thought of what mother's day should be, but in reality, it was probably one of the best mother's days I'll have. I got to focus just on Saoirse - the little girl that made me a mum - and nothing was expected of me other than that. Last year, she was gone. I didn't feel like a mum. I felt like a failure. I had been unable to save her; unable to make her better; unable to give her the childhood she so deserved. Cancer had stolen my baby, stolen my motherhood, stolen my mother's day. I felt defeated. 

This year I feel a little different. Of course, I still hate cancer for what it did to my family - for tearing my Saoirse away from me and leaving a hole in my heart and my life. But I am still a mum. I was a mum starting the day I knew Saoirse was growing inside me. I was stuck with the title, and there was nothing I could do to loose it. From that moment on, she always came first, and that hasn't changed at all today. She is my first thought in the morning, and my last at night. She is my focus each day, and she keeps me running. 

And now there's a feisty little man awaiting his summer birthday. (Luckily, I'm not 8 1/2 months pregnant, only 6 1/2 so I'm not miserable (yet)). His acrobatics remind me that he's growing strong, and that he will soon take over my time and energy. He will be my living child; the one that others "see" as making me a mum; my outward/public sign of motherhood. And he will be all those things, but Saoirse will still be the one who made me a mother. For it was she that changed my life and transformed me from a woman to a mum - a lifetime commitment, a lifetime dedication, a lifetime joy. - Kezia Fitzgerald May 11 2013"

Happy Mothers Day :)

Violence Creates Violence

I also want to say this.


Violence Creates Violence.

I will write and they will read

I am still here and doing ok. I know its been a while since I writing on my blog, however I want you to all know I do journal and process. I will write soon. I have a lot to share.

Mike

Eyes.

I woke up this morning to Kezia crying in her sleep. She had a bad dream. I went back to sleep and when I woke up all I heard was Saoirse talking. I heard her telling us about a book (a video we have) and of her singing the cat in the hat song. She started to hum it. These are still bitter sweet moments for me. I want to cry because I miss her, yet memories of her make me smile and laugh. She was so funny. And clever. And strong.

She loved it when I would get down on the floor to play with her. As soon as she saw me she would smile and get excited. I could immediately see her look for the toy she wanted me to play with. She would find it, go get it and bring it to me. She loved playing so much. I loved playing with her. I could watch her learn as she played. I could see the connections happen in her eyes. Her eyes always showed her feelings.

Thats enough for now. I have a business to run.

The Raw reality. There is no easy way to say this.... So I will just say it.

I want to thank those who wrote response comments to my post the other day. It helps. It helps a lot. Sometimes just knowing that someone is listening, or reading in this case really help a great deal. I can really feel the love and positive thoughts and I look forward to many more comments.

I want all of you to know that I appreciate you.

I think it is important to note that my experiences and my PTSD are unique to me. However, I do want to mention that life after the death of a child to pediatric cancer is still very much a part of pediatric cancer.  It is a reality.  It does not go away when your child dies. Its not just fighting for a diagnosis, getting a diagnosis, chemotherapy, radiation and surgery and countless hours crying and countless hours of emergency calls to the doctor and drives to the ER as well as countless hours of hospital stays and staying awake making sure your child is doing ok. Oh, did I mention the countless hours worrying where money is going to come from to pay for gas, food and a mortgage. (over 60% of families diagnosed with pediatric cancer file bankruptcy) There are so many facets to this that only a parent/caregiver of a child with pediatric cancer can know them all.  You can not pretend to know.

The reason I post is to vent my own feelings and it helps me process. My other motive is to work on documenting what happens after. I hope to draw out other fathers who have lost a child to pediatric cancer and to make the grieving process and struggles aware to the public.

My daughter was killed by cancer, she was an infant. 18 Months old. Full of life and such a great large personality. She was a person. A wonderful person who cared for others, loved sharing and loved her parents and sometimes more importantly, her faithful Grape Ape and loyal puppy Fallon. Life for me after her death is still very much a part of how pediatric cancer effects parents and families. The grieving process is raw. Very raw. In my opinion, one can not grieve without being raw at some point. I cry a lot. I am not sure when, if ever that will go away. It may lesson. I just do not know right now and I am the only one who will determine that. I will not move on at anyone else's pace. I will move on at my pace.

I am a bit unique though. I was the caregiver to both Kezia and Saoirse. I almost lost my entire family to cancer. Hodgkins Lymphoma (Kezia's Cancer) is relatively easy to treat - however it does kill people.  When she was diagnosed it scared the shit out of me. That still haunts me and I still worry about Kezia's cancer coming back. I could not work and we almost lost our home - which I would have gladly lost to make sure my family had medical treatment and a car to get back and fourth. We had a lot of help and for that I am forever grateful. That is another post though. Soon.

Sometimes people do not like to hear the raw truth about what families go through when their child is diagnosed with cancer. I am not talking about an adult child ( I am not comfortable commenting on that because I do not have an adult child). Sometimes I think that the media really paints a different picture to try to spare the feelings of the general public. Actually, not sometimes. Most of the time. Yes there are a lot of kids who survive. Unfortunately, in the case of my child and most others, her cancer has a very low survival rate. That is a reality. Not an emotional reaction. The public needs to know the horrors of pediatric cancer. All of the horrors. The public needs to know the raw data described by a father who lost his daughter. I wish my story stopped on December 13 2011. I wished she was deemed NED (No Evidence of Disease) for more that 3 weeks. 3 weeks is about how long it took for her cancer to aggressively come back. The reality is, it did not stop. So I will write and continue to give the general public the raw data. It will make a difference.

The images and sounds I describe are very real. These are things most parents may see and hear when their child dies of pediatric cancer. It is a horrible death and the most helpless feeling one can possibly feel. Watching my child die was the most horrific scene I have ever experienced.

I can describe it as violent actually.

I can not say it was majestic. It was NOT meant to be. She was meant to grow up happy, live a life, make friends, do her own thing, maybe travel the world. She is not in a better place. A better place is sitting here with us, playing with Fallon and her toys, learning how to read, speak Gaelic and Spanish, going to Ireland and playing in her yard.

I describe reality.

I needed people to know this. I want people to know that there is no easy way to move through this. There is no special book or special saying that will magically make me just "move on". I will move on, and in many ways I have. I need to be there for Kezia - she is so wonderful and awesome. I need to be there for me. I need to be there for my life and my family. Writing helps this.

I want to thank everyone who reads this. I ask that you please share my blog when I post. Sometimes it may seem like rambling - but to the parent who has a child with pediatric cancer or who lost a child to pediatric cancer, my blog is not rambling, it is a harsh reality - something familiar.

It will get better.


Deep Breath............

Some details of the flood

So some people are curious about what I am being haunted by every second of the day.

Saoirse having a hard time breathing
Seing her tears turn white as soon as they exited her eyes
Seeing white salt lines coming from her eyes to ears
Seeing her swollen tung extremely dry because she couldn't have fluids
Saoirse signing "all done"
Saoirse being curious about in IV line clip about 2 hours before she died - she didn't want to die
Saoirse saying "elmo" the last thing I heard my child say
Saoirse's legs and feet swollen so much I thought she was going to pop
Hearing her moan in pain as the "team" was moving her to try and stabilize her so they could intubate her
Hearing the doctor order "more sedation"
Hearing the monitor beep
Watching the entire process - I am haunted by the entire process like its in slow motion
Watching the doctor stick a long needle in Saoirse's chest and hearing air come out
Watching them adjust her head so they could intubate her
Watching them struggle to intubate her - Saoirse was fighting them
Watching the eyes of the lead doctor directing the team - sad eyes
Hearing her crashing and hearing the "code" come over the intercom
Hearing the lead doctor order "cpr"
Seeing them perform CPR on Saoirse
Seeing her body flop around as they were performing CPR



Deep breath

Hearing my wife cry as I held her. 
Hearing the deep unexplainable cry come from her as the doctor came over and sat next to us
Hearing the doctor say "we are fighting a battle we can not win"
Hearing myself say "stop CPR"


Deep breath....

Telling the doctor to make sure she is cleaned up because I didn't want her mother to see what I saw
Seeing my daughter lay there motionless and pail. Needle holes in her chest
Seeing her front tooth chipped - probably from the intubation
Standing there wishing she would start breathing again
Seeing her eyes swollen
Seeing dark liquid come out of her nose
Watching my wife look at our daughter laying there


Deep breath....

There is much much more. This is just a portion of what haunts me every day. I will write again later.

A father is just not suppose to see these things happen. Period. 

There are a thousand good memories I play over and over. It helps, however does not alleviate the pain and memories.

Floods are always bad

My night mares are getting worse. I know its been over a year since Saoirse died. The images of the night she died are still very fresh in my mind. My regrets are still very strong. I will work through all of this and I know things take time. Regrets will lesson as I continue to realize and know that there was nothing I could do to save my child. The images of her dying may take some more time. I do not sleep very well because of it. I know some people may say to just turn them off. I say to them that they never watched their child die. A violent death. I regret having them try to intubate her. She was dying and maybe I needed to let them sedate her and let her die in peace. Instead I watched a team of wonderful doctors and nurses try to intubate her so she could live longer and have a chance to heal and get better so we could try to get her into another protocol. I just wanted her to get well. She wanted to live. But at the end, she just kept signing to us "all done" all done".

My mind is constantly flooded with the last few hours of her life, in particular the last hour. Then after she died I would not leave her side. I did not want to leave the hospital. I felt like I was leaving her. I sometimes feel I failed as a father because she died. I know I did the best I could, I get that. Saying that doesn't take the pain away though. It will in time.

I am going to start seeing a therapist. I need to do something about my PTSD. I need to be able to focus on our business. It may not help that our business is focused on a couple of products that Kezia designed while Saoirse was sick. So pretty much all day I am looking at pictures of my daughter and marketing to hospitals. What keeps me going is how much we know our products help other people.

I am also trying to make sure I don't stress out Kezia. She is pregnant and I am stressed about her cancer coming back.

PICC Line and Central Line care will never be the same

Central Line Wrap

PICC Line Sleeve - Child Size

We started shipping! CareAline Products have started shipping out to nurses and patients. I have been working on tweaking the website and trying to make it as easy to use as possible. Hopefully hospitals will see the benefit to supplying them to their patients. We know how much they helped with Saoirse's lines, and so we can't wait for more people to have access to them for their child's or their own lines. If you haven't seen CareAline Sleeves for PICC lines and CareAline Wraps for Central Lines check our our website!

www.carealine.com

Twas night before christmas

Writing is difficult, Kezia wrote a poem that says it all. I wish Saoirse was home with us. Please check out Kezia's blog.


http://www.newmomnewcancer.blogspot.com/2012/12/twas-night-before-christmas.html

A Smiling Earth and New Traditions

Having a rough Saoirse day. This time last year I was waiting for my daughter to be cremated. I feel for all of those parents in CT.

On the 13th, the anniversary of Saoirse's death, we decided to make some new traditions. We started with waking up crying. I didn't sleep very well and neither did Kezia. All of the moments of exactly one year prior were flooding my mind and I couldn't shake them.

We decided to go put the solar lights on the dedicated tree for Saoirse at Endicott Park. We walked with Fallon, its not too far from our house. It was a beautiful day, very sunny. Its felt as if the earth was smiling. We definitely felt Saoirse's presence with us. We walked back home and I put up lights on the house. I was actually excited about doing that. For the past year, I have been dreading the holidays. Just dreading them. I was against the tree and didn't want to put the lights on the house. However, the closer to the holidays it got, the more I allowed myself to feel for the holidays and get excited for the tree and the lights. It is extremely difficult. But I decided a log time ago that I am choosing to stand up and do positive things and make something good out of a sad tragedy. Kezia's family came over that night and we decorated our tree. So overall, it was a good day. It just sent a ping of emotions through me just to say that. Its just still so raw.

Deep breath

Here are a few pictures and a video

Moments frozen in time

Its been a very surreal week. I just don't know how else to describe it.


I kept waking up last night. Each time my first thought was "how is Saoirse". Then I started thinking about what I was doing at that exact moment last year.

Deep breath.

I just can't write anymore right now.

I will write later