Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Thursday, October 15, 2009

Nicholas 1 Year Ago

A year ago today is a day that forever changed our lives. It is the anniversary date of Nick’s diagnosis. While I can talk about the day and everything that happened prior to the day, I also have to reflect on how happy we are today. Our life as a family is great and Greg and I have grown much stronger through this journey.

The story: I guess I could go back to late August and September of last year. We had gone to the beach a couple of times during the summer with the kids. Nick would take walks on the pier or run around in the water, just like any 4 year old boy. After playing or a walk he would complain his legs hurt. We just assumed he was tired and wanted to be carried. Over the next few weeks he started to really snore at night and we noticed his lymph nodes on his neck looked swollen. I was at the mall with my dad (Papa Boston), Tom and Nick and my dad asked why does Nick’s neck looked so swollen. I said: ‘oh, I have to call the doctor about it, I am not sure why. He is not sick and acting fine, but he is snoring at night and sounds at little stuffed up.’ I took Nick into the doctor’s office that day to see Dr. M and after a thorough check up she explained that we needed to go to the ER tonight. She said they should check his white blood count and run some tests. She explained the swollen lymph nodes could be a virus or something more. Greg brought him in that night and they ran tests, but everything came back negative. We waited one more week and repeated these tests, thanks to the follow up from our doctor. I can remember the phone call the next morning from Dr. M. She said the results showed malignant cells in the blood and we should head down to the Tomorrow Fund clinic right away. She explained we would be in excellent hands with Dr. Forman and their team and she had complete trust in them. Greg’s mom left work and came home to watch Thomas, while I picked Nick up at Prospect hill. (He is there today, while I am writing this blog). Greg left work and met us at home. The ride to the clinic and the waiting period are a little bleary now, but we knew at the time it was either Leukemia or a virus of some sort. The final results were devastating, but we knew we had to be strong. Greg spent the first night with him and the next morning the doctors performed a bone marrow sample to confirm he had T-cell. The 2nd night I spent with Nick and the next morning he had surgery to insert his port. He was then given 4 injections of chemo into his spine over 2 weeks and also received chemo through his port. Nick went through radiation, blood transfusions, side effects and most of all, bone pain. He was amazing through it all, and always found a way to smile. We have found our strength through the wonderful friends and family, co-workers and inspirational stories we have heard over the past year.

We are blessed with 3 wonderful boys and a house filled with love. We know God has watched over us.

We were explaining to Nick last night about today and how it is his anniversary. This morning the boys woke up and decided that we should have a party. Nick asked if we would get a cake and what we are going to do tonight. While I had tears in my eyes, they boys just smiled and talked about that day. It just reminds you of how kids perceive life and how they make the most of it. Keep Rockin Nick

Love, Karen and the Shannon Family
Hi all - From Aunt Amy
It was one year ago from today that Nick was diagnosed with ALL. What a year it has been for the Shannon family and all those related to them. I still remember the call from Karen that night as she drove home from the hospital (Greg stayed with Nick when he was admitted that day) - the tears and shock of learning her son had Leukemia. It impacted their family, our family, and friends in an upsetting and uplifting way. Our sister Christa and I immediately thought of getting this blog site together to share with everyone Nick's journey. I still get tears everytime Karen or Greg posts, even though I had most of the time just seen Nick. He really is a strong boy who really just want's to enjoy life and play. It's been a long year for everyone, especially Nick and his family. Just wanted to thank everyone who has and continue to support the Shannon family as Nick fights ALL.

I think Karen and Greg can elborate more on the day, the shock of the diagnosis, and Nick's journey through the year. With Love Aunt Amy

Monday, October 12, 2009

Thank you!

We had a great weekend. We have to thank Michele and Lisa (Greg's sisters) and all our friends for putting together the Silent Auction Charity Event for Nicholas. We are truly blessed to have people in our lives like all of you. The event was a lot of fun and it was great to see the kids really having a blast. We know many people donated gifts for the auction and put their time into helping out to make the event happen. Greg put together a wonderful speech for that evening. I have attached it for everyone to read. I know there were some people who could not attend but also helped to contribute to this event. The auctions items were great and of course Nick had to bid on the kid's game set. He wanted this one item so he decided to put his name down and bid on it. He then thought he could take it that right away and open it. We explained that he had to wait until the next day and see if anyone else would bid on it. He was definitely upset with that answer and Aunt Amy and Debbie both decided to keep bidding on the item for Nick. We could not figure out why Nick's name was the paper so many times and the bidding was getting higher, but once we knew who was bidding we decided to stop at the price and give it to Nick. He woke up on Sunday morning and played with the games all day.

Nicholas’ Journey (from The Shannon Family)

I would like to start by thanking my sisters Michele and Lisa for putting this great event on. According to Lisa, Michele has worked hard for a long time in setting this up, so thank you to both of you. Also, Mauri Tetreault has gone out of her way in helping to gather these great auction items. We would like to thank Mauri and all those who donated.

You never truly do know what obstacles life will throw at you. There are few people who have had a golden life where no real tragedies happen to anyone that they care about. There are a lot more people that have had to endure more and fight harder to keep this life. Nick is fighting his fight. He is the only one who can truly understand how much this cancer has and will affect him. It has been almost a year since we started to support Nick in this fight, this coming Thursday to be exact. As the parents of a child with cancer we have lived the emotional roller coaster that comes with this disease. We have not only had to come to the reality that our child has to go through this. We have also been blessed with the reality that people are inherently good. That people care. That you all here tonight were compelled to come out and support our son. It is not often in life, or it seemed not that often before Nick was diagnosed, that you see the extreme goodness of human kind. Karen and I are lucky enough to go to the Tomorrow Fund clinic every week and see these children who have not asked for this, who have not done anything wrong, fight for their lives. They are the most alive people you could ever meet and we are better people to have met them and to learn their stories. Nick is one of those children and we are extremely lucky to see him every day and every night. We are also blessed that of all people to have as a brother Nick has Colby. When Nick and Colby were real little Colby always worried about Nick. His empathy in dealing with the changes Nick has gone through. His understanding of how much this has affected all of us is well beyond his years. We are forever grateful to have family like we have that drops everything and races to help. We have friends who are willing to give up a day and make us a meal and deliver it with big smiles and warm hearts. I hope you can understand how humble we have become and how thankful we are that God has made people like you. You give us hope, but more importantly you give Nick hope that he will continue to live, love and grow up to be the great man that we know he can be.

At the end of the speech, the boys yelled into the mike - Let's PaaaRRty!!!

We know that saying thank you in this blog is not enough and we will work on our personal thanks in the coming weeks. Please know we appreciate everything everyone has done for all us since the beginning of his diagnosis and through this weekend. We'll be posting pictures soon. Take care, Karen