December 28, 2012

As January 17^th approaches, I have been reflecting on all that has happened this last year. I will never forget the look on the doctors face in the ER when he came in, turned off the tv, closed the door, stood over Mac sedated in the bed, placed his hand on my shoulder and said “These are words I never want to say to parents. Mac has a very large mass growing on his brain.”  The next couple of weeks went by in a haze. I remember watching Mac sleep with bandages on his head, a breathing tube, catheter, and his arms strapped to the bed. He looked so small. Then the pathology report came in. Through tears the doctor explained Mac had Stage IV, Glioblastoma Multiforme and that the prognosis was not good. I cannot even explain the fear in the pit of my stomach or the anger in my heart when I heard those words. Then we met with Doctor Wolff. He explained what he had planned for Mac and treatment. Billy asked the question I was too afraid to ask. How much time did we have with him? His doctor explained he could not possible begin to say because every person is different. All he could give us were statistics and generalizations. He told us the mean or average lifespan for this type of tumor from diagnosis is 2 years.

Over the past year my fear still exists, but most of the anger is gone. I believe in my heart I will have more than one more year with him because quite frankly our family does not work without him. I have learned so much from him in this past year and have said before how honored I am to be his mom, but he really is one of the most remarkable people I have ever met. He has a quiet and compassionate soul and faces each new obstacle with courage and grace. He is the person I hope to be someday.

Now I now must just put my trust in God’s plan and pray it is the same as mine. I also pray that someday our government will see that they have the power to change the horrifying statistics of Childhood Cancer. I thank God for all of the support we have received from so many and hope to have a New Year filled with more good days than bad and more laughter than tears.

Happy New Year to you all!

Christmas 2012

Well, it appears another Christmas had come and gone. I had a great day staying home with the boys and just relaxing. Although, to be honest, I was just not feeling the Christmas spirit this year. I never got around to putting our outdoor lights up, half of my decorations never made it out of the boxes, and once the boys finished unwrapping their gifts from Santa I was ready to take down the tree. I’m not real sure why I am so anxious to get back to our “regular” life or why this year I never really felt like it was Christmas. Something just seems to be missing and I’m not sure what it is. It could be that Christmas is full of magic and excitement because of the way kids experience it. It may just be my perception, but it seems some of that “magic” is missing this year because of all my boys of seen and experienced.  They have had their whole lives turned inside out and had to deal with depression, fear of loss, and the day to day side effects of cancer treatments that no children should ever have to deal with.

As we enter the New Year I will continue to try to take each day as it comes. January is historically a difficult time with the 15^th being the 2^nd Anniversary of Papa’s passing and the 17^th is the 1 year anniversary of our trip to the ER at the Floating Hospital which began this journey. We have learned so much that we could have lived happy lives without knowing this past year. So much has changed who we are as individuals and as a family. We are forever grateful for each day together, but I still long for those “pre-cancer” days when my heart didn’t stop with each cough or pain Mac experiences or the sadness I see so often in Liam’s eyes.

Tomorrow we head back into the clinic for counts and a check-up. Tomorrow I will see many of the faces of childhood cancer who have forever touched my heart. Tomorrow I will cry again for all the carefree childhood memories that were stolen from my boys and so many others. Tomorrow I will again begin to work towards making this world a better place for these children. 

December 18, 2012

I am not really sure where to begin this post. I have no new news to share in regards to Mac’s treatment. He is still doing well and amazing everyone with his strength and courage. I have been overly emotional, especially since the horrific events of Friday, recently. I have been crying a lot more, but to be honest, I have cried every day since January 17^th for one reason or another. I have found myself thinking so much about the parents whose hearts have been ripped out of their chests, siblings who lost their best friends, and families who will never be the same. The unfortunate thing is that these thoughts did not start on Friday. They started many months ago as I met and watched as children fought cancer bravely and heroically and when too many of them became angels.

This is our first Christmas since Mac’s diagnosis and so much has changed. I have always wanted to give the boys the perfect Christmas, what has changed it just what the “perfect Christmas” is. In years past this meant making sure the tree looked perfect, the lights were up outside, and all the gifts were perfectly wrapped and under the tree. This year our “perfect Christmas” has already started. We got great news about Mac’s MRI, my brother as able to come up to visit, and we have started spending time with our amazing family and friends. We are so blessed to have both our boys with us and not a day goes by that I do not remember that. I am trying my best not to think about our future and what next Christmas may be like. For now I will enjoy every moment with my boys.

I have listened to this song that I have heard before, but has taken on so much more meaning to me over the past year.  I wanted to share it because of how it so perfectly summarizes my feelings.

December 12, 2012

Well today we received better than hoped for news. We learned that Mac’s tumor continues to react unexpectedly to treatment and continues to shrink. I cannot even begin to explain the feeling of seeing the scans, seeing the HUGE smile on his doctors face, and just feeling hope. This is the best Christmas gift we could have ever received.

I also want to thank all of you that contributed to the gift card drive. I dropped off over $2,500 in gift cards today and still have some coming in. I have been overwhelmed by the generosity and compassion we have been shown throughout this last year. We could never thank you enough!

December 10, 2012

We have just returned from an especially needed family vacation. I was a complete stress ball for the first few days. I was a nervous wreck about getting all the meds through airport security, which proved to be no problem at all, and then spent the next few days worrying that Mac was going to get sick from all the germs on the plane. He wore a mask in the airport and on the plane, but those things are an illness just waiting to happen. I was so scared he would catch something and I would not know what to do with him down in Florida. Luckily, my prayers were answered and everyone stayed healthy! The boys had a great time at LEGOLAND and Universal Studios (although they spent more time in the gift shops than anywhere else). They spent most of the rest of the time in the pool at Nana’s. It was so nice to see them just be kids again. Mac spent most of his time smiling and chatting like I have not seen him do in many months. I can’t begin to explain the feeling of looking at your child, knowing all the pain and suffering they have been through and all the worry and stress they carry on their little shoulders, and seeing the look of pure joy on their face as they swim and splash in the pool. These are the things that I once took for granted, but now pray that we all have the chance to experience more of, together.

Wednesday is a big day for Mac. He has several appointments and will be going in for an MRI at 12:30.  I continue to hope and pray for a miracle for our family, but regardless of the results, I know that with my family, friends, and faith we will continue down this journey we have been thrown on, together. Please continue to pray for us all and as the holidays approach please do not lose focus on what is really important in this life. Hug all those children in your lives extra tight and never forget to be thankful for the many lessons they teach us and any amount of time we are granted to share with them. They are the true miracles in this world.