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 :)

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

Cancer is Pain. Period.

Its been difficult starting our business. We attended our first conference last weekend in Dallas and it was a huge success. We retrieved 90 leads from nurses and nurse managers all over the US. They all loved our products and want samples for trial. It was overwhelming. Our booth was constantly packed with people. Although it was overwhelming, it was fun and we enjoyed meeting everyone as well as the feedback we received regarding our products. The difficult part was knowing our products were developed while our daughter was sick. I wish I didn't have this product, I would trade it all to have Saoirse back. I would trade it all to have her not had been sick.


There is no comparable feeling than to watch your child suffer.

There is no comparable feeling than watching your child die.

Cancer in children is a horrible thing. Its evil. Its unforgiving. Its ridged. Its smart.

Cancer doesn't consider feelings or thoughts.

Cancer doesn't care about pain.

Cancer is Pain. Period.

Deep breath.


We are going to help others with our products. Kezia is going to help others with her foundation. Its a choice to do this. We can sit and fall into our sorrow or we can embrace it and keep our heads high. We didn't teach Saoirse to fall into her sorrow, we encouraged and built encouragement and love. That is us, it has to be.


Deep breath.

Did the past year actually happen?

Did this past year actually happen? 


As I sit in my office or in my chair in the living room, I ask myself "did the past year actually happen?", "did we really have a child with cancer?" 


I have been having some bad days. I am again being flooded by images of saoirse the day she died. The sounds actually and the image of her getting cpr. I am haunted by all of the doctor talk. I am haunted by the machine that made the loud beeping noise.......


It had been getting better, but I have times where it really floods me. I know I am not crazy, its just difficult. It sucks all of the wind out of me. What was she thinking about? did she feel any pain? did she hear me tell her I love her from across the room? Did we make the right decisions? 


Regret..


Not bringing her home so she could die at home. 


Deep breath




I have been crying for a week actually. I feel such a deep sense of loss. Saoirse's birthday is tomorrow. We are having a Celebration Party for her on June 9th. Saoirse loved life and she loved parties. She loved being around her friends and playing. All of her friends are having birthday parties right now.. Thats the other thing.. we are invited to the parties and we go. Kezia's mom's group are wonderful and have stuck by our sides through and through. We love them all. We bring saoirse's Elmo doll with Curious Georges shirt on.. Saoirse's presence is always there. 

Kezia is also launching the Fitzgerald Cancer Fund by flooding the plaza of the Today Show on June 18th with large poster sized pictures of NB kids. Helping to organize this has been tolling on the both of us.. Its overwhelming actually because there are so many factors in putting it together. We still need to have the posters printed and find a place that is not expensive. The other challenge has been getting people to come down and help hold posters because we have to get there early.. Like super early to ensure the prime location. It is a monday so its difficult i realize. But we will make it work. 


I will write more later.. Also, I will write about our trip to Austin, TX later. This was significant for me because I got to speak with other parents - In particular other dads. 

NMTRC Symposium, liberation and anger.

We attended the NMTRC Symposium 2012 last week. It is important to us to fundraise for non toxic, less toxic and "out of the box" thinking. We are very involved in the research, we have to be. The reality is, the "standard" way of treatment is not working - it hasn't really changed in 40ish years. Kids should not be getting chemo. I am open to nano technology, which was discussed extensively during this conference, where scientist are getting some amazing results in delivering the right chemo to the cancer cells, virtually leaving the healthy cells alone. This makes it less toxic and can give a better quality of life for the kids. 

I have a lot to write about and will. I want to say that the meeting was bitter sweet. It was awesome listening to all of the doctors, scientist and other key figures in curing Neuroblastoma. My highlight was meeting other Neuroblastoma parents. I need that connection. I need to know I am not crazy. I have good news.. I am not crazy. I miss my daughter deeply. The pain, the loss is completely unexplainable that only a parent who went through a child die of cancer, or who has cancer can understand. 

Meeting all of the Doctors and Scientist was also liberating. I felt complete passion from all of them. I got the impression that this is not just a "job" for them. This is a life's passion. They truly want to help. They all agreed that their research was missing an element though.. The parents.  Meeting us for them was moving they said. It brings another element to the research, the motivation. The deep sleepless nights they have when they are seeing encouraging results in lab mice and rats. They are on the verge of a cure. I feel it. I wish that Childrens Hospital Boston was more about "thinking out of the box". I found myself really beating myself up a lot during this conference. Wishing I had taken her out of that hospital and put her in another trial. I am so upset with all of the doctors who still actually believe that the strong chemo works. Sorry, but stats are stats. Survival rates are actually on the mild decline for Neuroblastoma and still a death sentence for relapse/recurrent Neuroblastoma. And stupid politicians who only do what the doctors say. The childhood cancer arena is absolute chaos. There are wonderful and encouraging trials that are showing results but parents do not have a lot of that available to them. Our doctors were very closed mouthed about other trials. We had to do all of the research and decipher the clinical trial information the government provides. Dell is working on a "cloud" for an all encompassing information cloud for doctors, scientist, and parents. Each having their own portal. This will be huge for terrified parents who's child was just diagnosed. We will participate in the development of the Parent portal, along with other parents. This cloud will enable parents to easily find clinical trials to participate in. It will also allow clinical trials to find potential patients. We were those terrified parents. I can't tell you the sleepless nights we had (and still do) researching trials and a better quality of life for Saoirse. Chemo kills children. Its as simple as that. Now, some kids survive, but almost all have health issues of some kind as they grow up.

I am motivated by my daughter Saoirse. I am motivated by the pain. I am motivated by the love others have for Saoirse and our family. 

More to come. (P.S. - if you are in the greater NYC area and want to come show your support, visit fitzgeraldcancerfund.org for the launch event on the Plaza of The Today Show where we flood the plaza with posters of kids of NB.) 

No mother should have to deal with this

I think the best I can do is just be there for her. Not be overly hovering her, give space and lots of hugs.

Saoirse was diagnosed on Mothers day of 2011. So Kezia has a double pain. On top of that, Kezia was battling her own cancer and going through Chemo. I have been trying to place myself in her shoes to get her through this. I also have to make sure I am ok. I have been having dreams lately about Saoirse.. She is crying for me. I can't get to her. Then I wake up. For just a second, I think its just a dream and I listen for her in her room. Then it hits me.

Deep breath.

She loves, She continues to live.

I am going to try something new on my posts. I am going to highlight old post titled "she loves" and I am going to take each thing she loved and write a story about it. Each day a new story. I am doing this for a couple of different reasons. I need to really focus on good memories. The most prominent images I have right now are pretty traumatic of her last hour alive. I am finding that day and that moment and images hard to shake. I think it is keeping a part of me from moving forward. I also think its important to tell these stories to help bring awareness to Neuroblastoma as well as how it effects families, but most of all how it effects children. Most people just do not know because they look away and/or force themselves not to think about it. I believe this is one of the main reasons there is little awareness and funding for childhood cancer. Its difficult enough to see an adult fighting cancer (been there, my wife battled cancer at the same time as our daughter), but seeing a child fight cancer is almost unbearable.

I know I keep writing about this subject, but what else can it be? Is it because the general population of the world just doesn't care about children who are fighting cancer? No.. I don't think so. I think its more about emotions. A good way to avoid the emotions of seeing a child fighting cancer is to look away and think, "people are doing something about it, there are organizations who are helping". Well, this is correct. Unfortunately most of the large corporate "non-profit" organizations use children to advertise to get donations, however give very little to help childhood cancer. (we have done the research and know the reality and if you have read my blog for a while you know who they are). There are some great organizations that do raise money strictly for childhood cancer research and family assistance. They give all of the money to critical clinical trials, research and program funding and take extremely low salaries and in some cases no salaries.  Unfortunately the larger organizations overshadow this assistance by taking the money raised and giving most of it to adult cancer research or large paychecks. Yes it happens.

In my opinion, the only way this is going to change is to tap social media, conventional media, partnering with existing organizations and be persistent, consistent and to refuse to back down. We all have to stand up and just do it. Children and families can not wait any longer. I do this for Saoirse. I do this for my family. Most importantly I do this for all the children and families who have suffered, currently suffering and who will suffer from childhood cancers. I do this because there is no reason not to. There is no reason that we can not start a grass roots movement to bring an every day awareness to childhood cancer. (runs, walks, dance-a-thons, dads and moms getting together and walking across the US to go see Ellen :), art shows, media appearances, etc.. ) I have a ton of ideas. Most of which wonderful people are doing all over the country and world with their own organizations. This will bring more awareness, more funding and eventually bring a cure. Blowing this out of the water has to start somewhere. Why not here? We have a lot of great supporters and a lot of great people who are working hard to help. Thank you.

Now, tomorrow or maybe tonight I will start my stories of Saoirse of all the things she loved. I have plenty. :)

Please just take a moment and follow my blog as well as share it with others. Lets get it started. :)

www.myfamilyhascancerx2.blogspot.com

Change in diet and lifestyle. Thank you Saoirse.. I love you..

Just a quick post. It is Sunday and I am going to get the materials to build a Cold Frame Hoop house so I can start lettuces, carrots and get my bedding plants started. While we may still have some snow and nights that have freezing temps, this won't effect the cold frame. We didn't have a hard freeze this winter (odd in Massachusetts and a good part of New England) so my garden soil is soft, not frozen. so i figure "why not?". .. I just need to find a tiller.. Not a lot for sale in the area on craigslist. We are switching over to a whole foods diet and organic. That stuff is expensive, but we are finding ways to make it affordable. One of the ways is to grow our own root veggies, lettuces, kale, peppers, etc.. I have complete control of it. Through the summer I will gather supplies to build a hot house so I can grow all year round. I have the land to do this and no restrictions.  This will also enable me to grow more variety through out the year such as peppers, tomatoes, spices, and a wide range of winter lettuces and root veggies. (you can also grow your own veggies in buckets with grow lamps in the house through out the winter. Just a quick search online will produce a lot of good information on how to do this if you don't have the garden space. The other way is to join a co-op (info listed below in Kezia's post) as well as buying from local organic farms.  One of our Facebook followers also sent us a site called http://www.organicvalley.coop/ that has a lot of good information on it, including coupons. Yes coupons for organic food. :)

What I am finding since we started buying organic is the money spent on organic seems to be balancing itself out because we only buy the essentials. No junk food. No dairy. No waist. Also, not buying meat at this time also helps save. This includes red meat, chicken and turkey. The meat that is sold in stores is so full of antibiotics and chemicals. Also, cows raised for mass production are fed grain and kept in bins with very little time in the pasture.. this goes for dairy and cows for beef. Cows are not meant to eat grain or stay cooped up in a barn stall with no room to move.  They are meant to eat hay and grass.. Yes, buying mass production beef or chicken is cheaper than buying grass fed beef  or free range chickens in stores but when you either eliminate eating beef & chicken, or cut down drastically the amount you eat, you actually end up spending less to eat farm raised grass fed beef and free range chicken. This also goes for turkey and pork.  (you can buy it at the local farm much cheaper or join a co-op where the prices are reasonable) I found a site that lists a lot of local farms http://www.eatwild.com/products/massachusetts.html

We are not doing this because we think animals are cute.. it really has nothing to do with it at all. The conventionally grown vegetables and fruits are sprayed with pesticides that have chemicals in them and most apples and fruits are painted to make them look prettier and more appetizing.  Cattle are given antibiotics and the grain they eat has chemicals in it. I can keep my garden organic with organic sprays and plants that discourage bugs. This is about the health benefits of a whole foods diet. Its not about a "fad" or jumping on a band wagon. Its about getting healthy and doing things to prevent cancer and doing things to prevent heart disease and to prevent as much as we can from putting genetically modified chemicals and products into our body. Once the 3 weeks of the initial diet is up, I will occasionally eat farm eggs and bacon.. But only occasionally.

We have been doing our research. A lot of it. Below is Kezia's post yesterday on her blog www.newmomnewcancer.blogspot.com

Please read it and share it with your friends and family.

"Vegan is NOT a four letter word

So, in an effort to change our lives for the good, and improve our health, we have been reading and researching about how our diets in this country affect our overall health. After lots of research, and too much time spent on the internet, we have decided to make some major changes in our home and our lives. 


Change #1:
NO MORE CHEMICALS! We got rid of all of our traditional household cleaners, pesticides, and personal products. We will be replacing them with all natural oil soaps, and cleaners made from basic ingredients like vinegar, salt, lemon, and backing soda. 


Change #2:
ALL ORGANIC! Pesticides have a very strong link with Neuroblastoma in particular. They can also carry compounds that can have a profound impact on overall health. Avoiding them (and GM products) as much as we can is our goal here. 


Change #3:
WHOLE FOOD/PLANT BASED EATING! For a very full description on this concept, and the science behind it, see the documentary "Forks Over Knives."(ps: it's now on Netflix!) We are trying to prevent cancer in particular, but the benefit of having healthier hearts, and better overall health makes this lifestyle worth the little bit of extra effort at the grocery store. 


Change #4: 
EAT LOCAL! This one will take a little time for us to adopt. We have signed up for a CSA this year through the Farm Direct Coop. We are very excited to get some amazing local, organic produce over the majority of the year. We will be growing our own garden too, and will be putting a lot of effort into gathering enough produce over the season to hopefully can and freeze for the winter months. I think the most difficult thing to track down will be local beans and nuts, but we will be looking into that over the coming months, and hopefully work something out. We are still loving our local, organic produce being delivered to us each week by The Fruit Guys, and it's so great to know we have that to rely on. 


Some major life changes, but all for the better. It will be tough at first, but so far we are determined to make important changes like this to help our family grow strong and healthy in the future! "