Monday, September 17, 2012

A Day of Yellow and Gold to Support Childhood Cancer

I would like to share with you campaign that has begun on Facebook. As I’m sure you all know by now September is Childhood Cancer Awareness Month. A page has been started on Facebook entitled “A Day of Yellow and Gold to Support Childhood Cancer”. I have listed the information below. I ask that you please spread the word and consider showing your support for all Children who are fighting, have fought, or may fight this horrific disease in the future.

About
On September 28th please wear yellow or gold clothing to raise awareness for those children who are currently fighting cancer and for those children who battled so valiantly. They deserve all the attention we can possibly bring to finding a cure!
Description
I created this page, "A Day of Yellow and Gold to Fight Childhood Cancer" in order to bring attention to the need for much greater awareness and funding to eradicate all forms of childhood cancer. I don't want to bombard you with statistics but simply state that not enough is being done by our government, pharmaceutical companies, and institutions such as the American Cancer Society to put an end 
to the suffering of children who face the horror of cancer. If enough of us can do something as simple as wearing yellow and gold on the same day (September 28th) I believe that this could get the ball rolling towards creating enough media attention. This could put pressure on those institutions I mentioned above to do more to help our children. I dream of the day when Major League sports teams choose a day and wear yellow and gold to help raise awareness for childhood cancer as they do for breast cancer awareness by wearing pink. I dream of the day when the American Cancer Society gives a much more equitable amount of research funds to childhood cancer, as of now they only allocate one cent of every donated dollar to our children. I dream of the day when no other mothers, fathers, sisters and brothers have to feel the searing pain of losing a son, daughter, or sibling to the monster that is childhood cancer. Please share this page with your friends throughout the world; our little Heroes’ and Angels deserve all the attention we can possibly bring to fighting Childhood Cancer. There is strength in numbers and if the numbers are great enough they will not be ignored!
"Smile, Be Happy"
Tony Stoddard

Sunday, September 16, 2012

September 16, 2012


I’m not really sure where to start this post because I am happy to say we don’t have much going on. We are starting to fall into regular routines with the start of school. I am having a hard time finding ways to keep my mind off things while the boys are at school. There is plenty of housework to do but can’t seem to motivate myself to do it. I am really enjoying out time together after school though. I LOVE that I can now sit down with Liam every afternoon and really do his homework with him. Previously, I would be busy doing schoolwork and would check it over quickly. We actually sit together, just the two of us, and talk about his day and what he is working on. I never realized how much I was missing that one on one time with him. I also have been thinking a lot about how much our life has changed and although there are many times I feel I will be completely engulfed in my pain and sadness over the loss of the childhoods both my kids are missing, just those few minutes a day with Liam seem to rejuvenate me. I am so thankful and blessed that I have him in my life. He has a way of teaching me about gratitude without even knowing it.

Mac is really adjusting well to school. He seems to be finding it easier and easier to go in the mornings.  I am shocked at his stamina and energy. After all he has been through I thought he would have a harder time getting through the school days. We are going into Boston this Wednesday to change out his g-tube button. The one he has now has started to leak a bit and is getting gross. I am hoping it will be a quick trip since we do not need to go to clinic for a couple weeks!

It’s hard for me to say how I am doing. It all depends on what moment of the day you are asking. Every day I go through a roller coaster of emotions. I get so sad at times when Mac struggles to do things that used to come so easy to him or I can see on his face how badly he wants to eat one of his favorite foods that taste just awful to him now. I am so happy at other times when I think back to all that he has been through and the awe inspiring courage he has shown. I am grateful I was chosen to be the mom of two boys that have taught me more about life then I could have ever dreamed to teach them. But mostly I am scared. Scared for what tomorrow might look like for our family, scared for what may or may not happen. I wish I was one of those people who lived in the moment with no thought to the future. I think this is the only way to truly enjoy and be grateful for each new day that we have together and at home. This is my new mission, to try to look at my children and see not two kids who have been robbed of the innocence and naivety that is childhood, but to see the two people in the world who have knowledge beyond their years and the ability to make my day or break my heart with just one little look.  Mac carries the physical scars of cancer while Liam carries the emotional ones. I will never understand why our family was chosen for this journey, but when I look at them and hear their laughter it gives me the hope that we can come through it.

Thursday, September 6, 2012

September 6, 2012


Well, we could not be happier with the MRI results from yesterday. I find myself looking back over his original MRI and seeing how far he has come. The fact that the tumor is continueing to get smaller is a miracle for our family. We cannot say enough about the people at the Floating Hospital. With the start of Childhood Cancer Awareness Month I find myself reflecting on our journey. It is funny how there are certain parts of our journey that I will never forget. I remember the ER doctor coming in while Mac was still sedated and sleeping, shutting off the tv, closing the door and saying “These are words I never want to have to say to parents. Your son has a very large tumor on his brain.” While saying this he put his hand on my shoulder to steady me and in a way offer his support.  I remember the very first nurse in the PICU giving us a tour of the unit and letting us know what to expect overnight.  She then turned to me and said “I know he is your son, but while he is here he is ours too.” I will never forget the feeling that came over me when the doctor sat down to give us the results of the pathology report. With tears flowing down her face she turned to us and said “Mac has a grade IV Astrocytoma. I’m sorry. The prognosis is not good.” When they say at the Floating Hospital they treat every child like their own it is absolutely true. In a way, January seems so long ago and so much has changed, but at the same time it seems like just yesterday. I know we have just started on this journey and that the road ahead will be paved with ups and downs, but for today we are celebrating this up and thanking God for all the people we have met and gotten closer with throughout this journey. 


Tuesday, September 4, 2012

September Slideshow

Please take a few minutes to watch this slideshow of pictures. It is our journey with Mac through Childhood Cancer from January through today.


http://youtu.be/Llq1dR8f4ME

Saturday, September 1, 2012

September is Childhood Cancer Awareness Month


Today is the start of Childhood Cancer Awareness Month. I feel like I have been posting so much about it on Facebook, but am not sure what it means to most people. I can tell you what it meant to me last year. The start of September meant the start of a new school year for the boys and for me. It meant the start of numerous Fantasy Football drafts for Billy and the beginning of my favorite season. I read a little about childhood cancer and donated to St. Jude’s. I thought about childhood cancer as a tragic and horrific thing that happened to other people. Never in my worst nightmare did I think it would touch my family.
Since last September so much has changed for us. I have met countless heroic children battling this disease with a grace, dignity, and courage that is unmatched. I have met their siblings who have grown up far too soon and seen far too much pain and suffering within their families. Childhood Cancer has a whole new meaning to me now!
Today, Childhood Cancer means to me living in fear every day that Mac will get a fever or worse. It means that Liam worries every day that his brother is going to die. It means that we cannot plan a family vacation for next year or even next week because our life is a constant unknown. I am now a full time caregiver for Mac instead of a teacher. There is a constant feeling of stress in our house because we are always watching the clock making sure his meds are given at the right time and his g-tube feeds are started. We have all given up the ability to go anywhere without timing it with the meds and feeds. Mac has lost his childhood. Liam has lost the brother he once knew. We have all sacrificed the life we once took for granted for this one in the world of Childhood Cancer. Our lives and family has been torn apart. We continue to pray and hope that one day we will be able to put it back together but we will never be the same.
This September please take the time to think about the lack of funding for research and resources for these amazing children. If there is one thing I am sure of it is that Mac deserves better, Liam deserves better and all children deserve better. They deserve a chance at life.