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

Waking up.

I slept in today. I feel exhausted lately and felt I needed to just sleep. Kezia got up early. When I woke up for just a split second as I lay there, I listened for Saoirse playing downstairs. Then it "hit me".

Deep breath.

So as I lay there this morning I just thought of the days when I would sleep in (this didn't happen often :)) and then wake up and hear her laughing, talking, playing and tormenting Fallon. :) I would just lay there and smile, listening to her. Listening to Kezia talking to Saoirse and Saoirse taking to Kezia in her own way,  or laughing. Listening to the thumps of her little feet running around the house. She loved running around the house. Then I would hear the gate at the bottom of the stairs rattle. That was my cue to get up. That was Saoirse looking for daddy. Of course I worried that the gate was open and she would come up the stairs alone.. (she loved climbing the stairs when she could). I was excited to get up. I couldn't wait to see her and go downstairs. I would  open my bedroom door and look downstairs and she would see me and start laughing and talking to me in her own way. Then she would start rattling the gate. My cue to come downstairs. I couldn't wait to get downstairs. I loved playing with her. She was so much fun. The closer I got to her down the stairs, the more excited she became. I can't tell you how good that feeling is to have your child so excited to see you.

Deep breath.. Good feelings and thoughts.

I haven't been in her room since we returned. This morning was the morning. I felt drawn to her room after the good memories I had when I woke up. I went in and just started crying. Her shoes laid out on the floor next to her changing table. All of her stuffed animals in her crib. Packed bins of her clothes next to her closet. I sat in the rocking chair and just thought of all the moments I would rock her to sleep. Sometimes all night because she couldn't sleep. I started to hum the song I would hum to her every night. I still do actually. I know she feels it. She hears it. She senses it. I thought of when she was really small and just started to sleep in the crib. Then when she learned to stand up in the crib and I had to lower the mattress. As I sat there this morning I imagined me rocking her. I felt her sink into my chest. I felt the warmth of her breath. I felt the tiny patter of her heart against my chest. I smelt the smell of her baby breath and just her baby smell all together. I felt her fall asleep. I miss that. I miss her.

Deep breath. Deep breath Deep breath.

I miss my daughter.

Deep breath.

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! "