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

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.

Happy Birthday

Happy Birthday My sweet baby


Saoirse


Today you turned 2. Mommy and I are always thinking of you and you will be happy to know that I am going to cut the grass today on your "tractor" :) There are a lot of people who love you and are thinking of you today. We might have a fire tonight outside because you love fires. Oh.. and I am sure you already know this, but the garden is doing great.. we are going to grow some potatoes this year! We are also trying some new white pumpkins..


Fallon misses you. She guards your toys keeping them safe for your future brothers and sisters. Fallon loves it when Colin, Thomas and Eleanor come over because she knows that they are your friends. Fallon needs her baby fix. :)


We know you are here. We feel your presence in the house and your room and on the yard. I want you to know that I love you so much and I miss you even more.. I feel so privileged to have known you and learned from you. I carry you with me every day and there is not a moment that goes buy that I don't think about you and smile. You always smiled no matter what. You are such an inspiration to us and to thousands of other people though out the world. Yes.. people know you from all over the world. :)


Lets go cut the grass.


Happy Birthday


Love


Daddy

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

Update on Saoirse

Hi All.  Saoirse has been very sick with a swollen liver for the past few weeks. Confirmed by an MIBG test today the neuroblastoma has attacked her liver. She was immediately planned for and started radiation to her liver this afternoon. She did not have to be sedated for the radiation or planning :) She is so swollen and sore that it must hurt to move a lot.. she gets very uncomfortable when touched or moved. Sometimes she wants to lay on her back, she either sleeps or watches tv. Most of the time she wants to lay on her stomach and knees. more her chest. It seems to relieve pressure from her liver being so swollen. This causes her organs to be squished a bit.. We have her on some good pain medication. We are hoping the radiation starts working immediately.. this will bring her some relief. She is also on medications to help release the excess fluids peeing them out. Her radiation oncologist thinks it should start working pretty fast, based on her last response to radiation to her skull, which was good. this is so stressful.. I hate seeing her in such discomfort and she wants to play, talk and have fun. it hurts me to watch this, and on top of her discomfort from a swollen liver, she is now dealing with side effects to radiation to the liver. nausea, vomiting and all kinds of internal issues such as retaining excess fluids, lack of adrenal glands and low platelets. She stays tough. She stairs at my eyes .. her eyes are scared and confused. deeply. then she focus on what ever is on tv. we are always playing her favorite shows. 

I can't imagine our life without her.

A better day

This will be a quick update. Saoirse is feeling much better today. Saoirse kept throwing up and was having some tremendous pain so the doctors were concerned about possible swelling in her brain so they ordered  another CT scan. The results were that she did not, which is good. So some medicines were changed and one dropped and low and behold we have a new kid. Saoirse started feeling better, kept her food down this afternoon and evening and even walked on her own. What a relief. I will have a more detailed update tomorrow. Thank you all for reading and following.