The 100th Blog

I am honored to be the one who writes the 100th blog. I guess Karen wrote almost all other 99 this is my oportunity to raise my average. The duration of this blog can be thought of in a few different measurements. Yes, 100 times we sat down to comunicate Nick's condition. Some other ways would be how many phases of treatment Nick has gone through (5 + phases: Prophase,Induction,Consolidation I, CNS therapy, Consolidation II and currently in Continuation). Or how about the amount of different medicines Nick has recieved ( 14 Chemotherapy drugs and numerous antibiotic, fungal, nausea and fever reducers not to mention the radiation). We could try and count how many hairs Nick has lost and regrown (more beautiful now than ever by the way!) but I doubt I could get any real answer there. We could try and count a lot of other life changing events that this child has gone through since this blog's inception but the most important number is 1. 1 strong child growing stronger every day and thank God for that. May this 100th post find you as happy and excited about the future as it finds Nicholas. You must understand that his excitement doesn't have much to do with his treatment and how he is doing...it is all about the kitty cat that he and his brother call Grimace. The newest member to the family. That is right, Karen finally got her girl and they named it Grimace!!!
Take care and God Bless you all,
Love the Shannon's

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

Thank you!

Hello,
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

It is always an eventful week when Nick is on steroids. We just never know which way his mood swing will go. Tuesday he went to Prospect Hill and did great. The teachers said he was a little sad, but then played with his friends. On Wednesday he had his big play date with Michael. It has been a couple of weeks since the boys have played together and Debbie bravely took Nick for the day. I know Nick had fun playing at his house and then going to Michael's school to pick him up. (Michael's full day) Nick was so tired that night when he came home. It was funny because he walked in the door and told everyone to be quiet (we had auntie Michele and Uncle Norm over) and then fell asleep on the couch in about 5 minutes. Thursday was a rough day at school for Nick. The nurse ended calling (all the phone numbers we gave her) and eventually got a hold of Greg. He was feeling 'homesick', as he calls it and melancholy. After talking to Greg, Nick agreed to stay in school until dismissal and Greg picked him up. He was suppose to go to Prospect. They went to lunch together and then Nick slept in the afternoon. Friday at school proved to be the same thing. It is so hard because we are trying to figure out when he has had enough or if we should keep pushing and make him get through the day. It is only half day and we want him to enjoy the school day, not have a miserable time. He goes through a lot and we do the best we can at 'picking the battles for him'. The teacher is great and she gives him options to relax in the book corner or go to the nurse's office. We agreed to have him stick it out today and take the bus home. I think I will work with the social worker to find out ways to make him feel comfortable during steroid weeks at school. I'll have to find a book to read with some ideas.
Looking forward to the weekend and the party. Two more does of steroids and then a break for 2 weeks. I do not like watching Nick change and feel so sad at times but I know he will be back to himself in a couple of days. Take care.

Started Another Round of Chemo

Nick had clinic today. He started another round of chemo. Vincristine, Methotraxate and antibiotic through the port. He is back on steroids (5 days) and 6mp at night (14 days). Clinic was quiet this week, much better than last week. I think our busy weekend caught up with him and ended up taking a 3 hr nap today. He is still up right now and in good spirits. The doctors have increased the 6mp because his counts are still high. We were prepared for this and understand why this is necessary. The purpose of increasing the dose is to bring his counts down, which can be scary going into the flu season. There have been some kids out sick in his class and so far his body has handled everything okay. We will get ready for the steroid craze this week and hopefully he will not be in so much pain by the end. We always try to look for the signs if he is feeling pain but he is so tough that by the time we know, we are reacting to it. The boys will also start afternoon daycare (tues.,wed.,thrus) at Prospect Hill. Nick is in half day Kindergarten and tends to get bored when he is home and I am working. Our work schedules have been a little hectic and Nick feels very comfortable at Prospect. He will see his friends again and Colby will join him in the late afternoon. The teachers are wonderful and understand Nick's mood swings and help out however they can. It's a little stressful because we always worry about the germs, but again, Nick wants to play and have fun. We still have our family helping out on Mon. and Friday's, which is a huge help and we appreciate it.
This past weekend we decided to take the boys to a corn maze and apple picking. They had a blast. We were worried Nick would be tired during the corn maze and he made it through the maze for the first 20 minutes. We were almost done, finding 3 mailboxes with stamps and then he decided to take a break. Tom was in the back pack on Greg's shoulders and it was a good time to leave the maze and find the fry stand. Colby and I stayed in the maze and the last mailbox. It was good bonding time for Colby and I and he was getting worried we would not find it. He is so sensitive and was worried where Nick was that he almost gave up. We found the mailbox together and he was so proud of the accomplishment. After that we headed to the apple orchards and picked two bags of apples. I think they have eaten about 6 of them since Sunday.
We are looking forward to this weekend and the big party. We'll give more details later but let's say we were completely surprised and truly amazed of the generosity and effort that everyone has done. Take care. Karen

Tomorrow Fund Clinic Visits Nick's Classroom

Hello,
We have had a good week. Greg and I thought it would be a good idea to have our Social Worker (Rachel) and Child Life Specialist (Lisa) visit Nick's class and give a presentation about him. We know Nick talks about clinic, his port, his medicine and all the things that 5 yr olds probably do not understand. We also thought it would help the kids understand Nick when he is moody or absent from school at times. Of course, I had to go and I was very curious to see the kids reactions to the 'terms' and the word 'cancer'. The kids were very responsive and tried to relate times to when they were sick and how they felt. The women showed how a port is accessed and how Nick receives his medicine through a really cool doll that had velcro patch where you insert the port. They brought a couple of ports for the kids to hold and feel. Nick described how his port gets accessed and what it felt like getting shots in his leg. He was really into it and not shy at all. Nick had packed his little port doll that he received the 2nd day in the hospital after his surgery for his port.
I was giving Greg an update about it tonight and I was thinking about how man times the word 'cancer' was said during the presentation. Greg and I usually say Leukemia, I guess for some reason it does not sound so awful. It just really brings you back into perspective and exactly what Nick is going through. We appreciated Rachel and Lisa taking the time to come to class today and we hope the kids have an understanding of who Nick is and when he is sometimes not himself. I know the teacher has done a great job with teaching the kids to wash their hands and use purell as often as needed. She mentioned the kids like the smell of purell, whatever works. The boys are settling in tonight to watch the opening premiere of the Clone Wars. They have been waiting for this night the whole summer. I can not believe we are approaching a year since Nick was diagnosed. So much has happened and Nick has been through a lot. Colby and Tom have also grown up in the past year. We were worried about Colby starting school this year, he had a rough time last year. Colby is adjusting very well and really enjoying 1st grade. Colby told us tonight: "Everyone that sees me in school tells me they saw me in the paper, it is cool to be famous."
Tom is the definitely our 'crazy' of the family. He is so active and so into the boys. He follows them everywhere and tries to play with them, but of course, the boys are not into sharing their toys with him. I can remember the days when Nick was home and always sleeping on the couch, as soon as he saw Tom, his eyes would light up. Tom (and someday he will know) kept Nick going at times and especially when Nick was feeling sad or lonely. Greg and I are so proud of all our boys and how each one has their own personality. Karen