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

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.

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. 

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

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.

 

Sunday, August 26th

Tuesday is the BIG day around here, the first day of school. Both boys will have teachers they already know which makes the transition a little easier. I had the opportunity to sit down with Mac’s teacher and principal on Friday to talk a little bit about his special needs as he transitions back into school. Any anxiety I had was quickly put to rest after speaking with them. The whole St. Margaret School community has gone above and beyond to make sure both boys have everything they need to be successful in the upcoming year.  We will continue to take it one day at a time since there is no road map of what to expect from Mac or Liam.

Although I am excited for them to start the new year and try to get back some normalcy in their lives I am a little nervous for myself. I think about how this time last year I was putting the final preparations together for my own classroom and looking forward to meeting my class. Once school starts I will have a lot of free time on my hands. It seems now whenever I have a few minutes at home alone I use them to get my emotions out and cry. I just do not want to be overcome by this sadness for all that Mac and Liam have lost over the last 8 months.  I would never choose this life for myself or anyone else but feel like as long as I do not live “angry” all the time I can get by. I just hate this life for my boys. They deserve so much better. They deserve to always have “good days” like most 7 and 9 year olds. They deserve to have a mother who doesn’t smile to hold back her tears every day.  They deserve to have a family that can talk about plans for a future without a black cloud hovering over all the time. I just wish I could give them what they deserve. I know what is happening is not a reflection on our parenting or anything that is in our control, but I think all parents want better for their kids than what they had for themselves. It is hard realizing I cannot give that to my kids because they have already seen, heard, and felt too much! I am forever grateful for the fact that Mac is doing so amazingly well but most days feel like it is not good enough for him.

                                                          

 We will never know what caused this cancer or how long Mac had lived with it before it was found. We will never understand why there are so little resources and funding for these little heroes that smile and laugh through their horrific journeys. But I do know it has forever changed me and my entire family.  I only wish I could say it was for the better.

Mac is scheduled for his next MRI on September 5^th. Please keep him in your prayers.

Thank you for following and allowing me to get out my thoughts and feelings.

1 Week until School!

As we enter our last week of summer vacation I am filled with so many emotions.

Liam is slowing slipping into a depression as each day passes and it gets closer and closer to school starting back up. It seems he has grown rather fond of his staying up late reading The Simpson’s comic books and then sleeping until 10. Although this last week will be the first week all summer that I don’t have to constantly nag him to do his summer reading or math since we finished it all on Friday. I don’t know who was happier about it me or him! I literally got up from the table when the last word was written on the final book report and did a jig!

Mac continues to amaze us with this strength and endurance. His hair is growing quickly and he even told his Occupational Therapist he was looking forward to starting school again “a little bit”. I am hoping his need for perfection will relax a bit when he starts school. He is so hard on himself when he makes a mistake. I only wish he could see himself through my eyes and see the constant reminder of courage, faith, hope, and all things in this world, that he is to me.

We have had some of the best times this summer as a family. When Mac was at Fenway Park last weekend and very innocent woman asked what his bracelet was for, when it was explained he would be throwing out the 1^st pitch for the Spinners she responded with “how did you get so lucky?” I know nothing was meant by it but the comment made me want to cry and scream and have a fit any 2 year old would be jealous of. “Lucky” is not a word I would use to describe Mac or the reason he had the opportunity he had at Fenway Park.  “Lucky” is not a word I would use to describe the daily battles Mac faces just to try to be a “normal” kid. “Lucky” is not even a word I would use to describe the good days we have together as a family because for each and every one of those days Mac, Liam, Billy and I fight with everything we have just to get to them and sometimes through them. I am forever grateful for those good days but don’t feel “lucky” to have them.

As the boys return to school most parents have hopes their child does well, gets along well with others, and maybe even finds that one subject that will turn into a lifelong love or career for them. This year, I hope Mac finishes 1^st grade and Liam learns how to be a kid again without so many grown-up worries. Please continue to send prayers and positive thoughts.