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.

November 27, 2012

Sorry for the delay in posting. I am happy to report that I have nothing to report. Mac is doing so well. He still tires easily, especially at school, but other than that he is great. I am finding it easier and easier to look at him and see Mac, my son, and not Mac, my son that is battling for his life.

 With the holidays here it is so easy to get caught up in the commercial aspect of shopping and decorating and forget what the season is really about. One of Mac’s greatest gifts to us is his ability to see the magic of the season without questioning it. In his world, magic and miracles happen every day. He is teaching me how to enjoy today, and let tomorrow come as it may.

I still believe everything happens for a reason. As our family navigates through this journey the reason is still not clear, but we are adjusting, learning, and in many ways becoming better people because of it. As I think back over my life, there is nothing I am more proud of than my two boys. They are two of the most compassionate, loyal, and good people I know. They have allowed me to learn how to live with Mac’s cancer as an aspect of our life instead of continuing to focus on it as the center of our life on my own time. I know as we have our ups and downs all of us will continue to battle with feelings of resentment, anger, and disappointment for all of the “could have beens”. I don’t know if I will ever come to accept what has happened to our family, and hope that many of you will not either. There is no reason for so many of our children to be forced to rage war on their bodies with so little being done to stop it. Please continue to keep us and all families affected by Childhood Cancer in your prayers and thoughts, and please continue to talk about Mac and all the children who bravely smile through tears of pain and disappointment so that someday the research that could save them will get the funding and awareness our children deserve.

November 13, 2012

Thank you to all that have committed to sending gift cards to share with the families at the Hematology/Oncology Clinic at the Floating Hospital for Children. Please know you are not only bringing joy into the lives of children, but are also relieving a lot of stress that parents of sick children feel when money is so tight and the holidays are approaching.

Our family is doing great. Mac is back to feeling and acting like he was pre-cancer. Liam seems to be doing well also. We seem to have been going on as a “normal” family, well, as normal as any family that has a visiting nurse come on a Saturday to change out a g-tube or any other parent that  goes to their child’s school daily to pour formula down the g-tube so they don’t go all day without eating or drinking. These have all become part of our life. It’s funny how such unnatural things can become such a natural part of everyday life so quickly.

Halloween proved to be an incredibly emotional day for me. Halloween has always been Mac’s favorite holiday. The boys put on their costumes and we all headed out to trick or treat. We made it to a few homes on our street before Mac got tired. We put him in his wheelchair and pushed him from house to house. He walked on his own, well with his brother, up to each door for his candy. Candy that he was so thrilled to get even though we all knew he would never eat any of it. As I watched him and the sheer joy of childhood innocence on his face I could not help but think about his and our futures. What would next Halloween look like for our family? How much longer would he be able to celebrate all the things kids do that make them such special little people  without all the skepticism that we carry around as adults? After talking about my fears with some great friends and taking their words of wisdom I decided to live in today and try not think about the future and how different it is going to be for both my boys than anything I would have ever wanted for them and so different from what they deserve. I was really doing well and starting to feel more human.

I should have known better to think it would continue for more than a few days. My “new life“ slapped me back to reality today. I went to feed Mac his lunch to find him waiting in the office. As soon as he saw me the tears started. He had a terrible headache. In any other child a dose of Tylenol and nap would be all that was needed. But, our “new normal” life means taking a temp to make sure he can have Tylenol, putting him down for nap, then crying and worrying about what this new pain may be. It is probably nothing more than a 7 yr. old boy who was a little tired and needed a break from school. Of course for our 7 year boy it could mean so much more…

I can never thank anyone enough for all of the love and support. Please continue to keep us all in your prayers. 

Holiday Gift Card Drive

Dear family and friends,

As you all know, 2012 has been a challenging year for our family, beginning with Mac’s diagnosis of brain cancer in January and continuing through the past 10 months of radiation, chemo, scans, blood draws, joy over the reduced size of the tumor, fear over the unknown journey ahead, anger and sadness over the significant changes in our child – from weight loss to hair loss, nausea and anxiety.

Since January, we’ve put so many things in perspective and truly reflect on what matters in life like time with family and friends and making lasting memories.

The holiday season is a time to be thankful for and to celebrate what we have. We are so lucky to have our support system of family and friends – new and long-term – who helped us get through every day since January 17. We’re so grateful for all you have done for us!

We would like to ask our community of support to help others this holiday season. As you know from our experience, it is almost impossible for families to continue living the way they did prior to their child’s diagnosis. This obviously has emotional implications and financial impact as well. Many times, having a child with cancer means losing an income while also adding expenses to traveling to and from Boston, not to mention the medical costs.

We would like to collect gift cards for the parents of the children in the Hematology/Oncology Department to help with the stress that having a sick child and the holidays may bring. The gift cards can be for a gas station, a grocery store, or any store.

Help us alleviate some of the stress for these families during the holiday season so they focus on what is really important – celebrating every moment with their families – not worrying about whether or not they can afford to put together a holiday meal or purchase a special gift for their children.

If you would like to help, please send all donations by December 10, 2012 to:

Super Mac’s Support
c/o Bill & Rebecca Connor
2 Delmore Drive
Chelmsford, MA 01824

Again, thank you for all that you’ve done for us – and all that you may do for others whom you haven’t even met!