Merry Christmas & Happy New Year from The Shannon Family

Hello All,
As many of you know, I did not send out Christmas cards this year. However, I did write my annual Christmas letter and wanted to share it with you all. We enjoyed receiving all the cards this year from our family and friends. We are going to enjoy the next week as a family and spending lots of time together. Wishing many Christmas joys this year.

Merry Christmas to All Our Family and Friends,

I am not even sure how to start our letter this year. We are first and foremost so proud of our children and all they have accomplished over the past year. We have come a long way since the beginning of our journey with Nicholas. Let’s start with the youngest this year:

Thomas:
He is now 17 months and heading straight into the terrible 2 stage. He was walking at 10 months and chatting up a storm shortly after that. We believe he is saying phrases now and we can even understand what he wants. He is so happy all the time and stays curious about what his brothers are up to. He does not miss a beat. Thomas will make you laugh and cheer up your day when you need it. We know he does not understand everything going on with our family, but he does know how much we love him and how to keep us smiling all the time.

Nicholas:
Our strongest child. I have to say this because he hardly complains about anything. (Except on steroid week) He endures a lot with his treatment and accepts the things he can & can not do at times. He is so smart and really enjoying Kindergarten this year. I think it is about socializing. He is making new friends and loves riding the bus. I do not know what goes on during the bus ride, but somehow it is super cool to be part of it. He started Karate and just earned his first yellow belt.

Colby:
Our passive child. He plays soccer and Karate (purple belt). He is having a great year in 1st grade. He is above average in reading and loves his word search puzzles. He has lost 2 teeth and we think at least 3 are loose. He is very helpful and really into the Holiday spirit this year. He put up most of our decorations and stockings. He continues to look after Nick and ‘Wish’ Nick would get better and not be sick. I have to say that if you ask Colby what his one wish would be, it would be that… Nick gets better. He is such an unselfish child and we are so proud of him.

Mom&Dad:
Greg is still working at Bose, going on 15 years with the company. He is back in the Mechanical Design group and building some great products. (We get to test them from time to time). Karen is working at SC Johnson and going on 4 years now. She is enjoying her job and the challenges of it as well. We were very fortunate to take 2 family vacations this year. Although, we never thought we would actually be going to a camp for families with cancer, the experiences we had were amazing. Hole in the Wall Gang Camp (started by Paul Newman) was over a weekend in May. The place was amazing and it was our first time to actually relax and enjoy family time. Then we went to Camp Sunshine in Maine. The camp was wonderful and gave Mom & Dad some time off together. We met wonderful families and heard their stories of survival.

We continue our journey with Nick and staying strong as a family. We are blessed to have our family together for the Holidays and Nick in a better phase of his treatment. The support and prayers have not gone unnoticed and we are truly thankful to have you in our lives.
God bless and enjoy the Holidays!

The snow storm and clinic

Hi All,
We had a great weekend as a family and celebrated with friends. We went over the Love house on Friday night to give Grammy her presents before she drives down to NC to visit the Wykoff Family for the holidays (Karen's sister and family). Saturday night we celebrated at Al & Robyn Nasuti's house. It felt so great to relax, enjoy some adult beverages, good food and just let the kids play. We woke up Sunday to about a foot of snow. The kids played outside twice and enjoyed the hot coco by the fire after. Tom has his first experience of playing in the snow. He loved it, until he stuck his face right in the snow. I actually brought my camera outside and took pictures.
Today, Nick decided he would like Papa (Boston) to take him to clinic. It is hard to give Nick that little freedom of Greg or I not being there and asking the nurses about him and always checking up on everything that is going on at clinic. Papa does a great job and of course I send him with my questions and concerns. His counts were good:

WBC: 2.2
RBC: 9.8
Plts: 263
Neut. 27.7

We were originally scheduled to have Nick's next spinal (LP-lumbar puncture) on the 29th but the doctor moved the appt. to the 31st. I guess there are a few doctors taking some time off, so no one is available on the 29th to perform the LP. There are no issues with moving the date out a couple of days for Nick, it will be an adjustment for us. Nick will not start his next cycle (w/steroids & Vincristine) until the 31st. We will be moving clinic days to a Thursday for at least a little while. We will try to catch back up to a Monday clinic day over time. The good news for us is Nick will be able to enjoy his Christmas school break the whole time and not have those 'cranky' (steroids) in him.
As I mentioned before the Sturbridge Federated Youth Group is hosting a charity dance in honor of Nick and The Tomorrow Fund. We will be bringing the kids to the dance on Wed. night. We are looking forward to meeting Ryan and Sharie, who have worked very hard to put the whole event together. We will post pictures after the event. Take care, Karen

Feeling Much Better

Nick is feeling much better. He rested all day Monday and was up early Tuesday and ready for school. We are understanding now what a virus can do to his system and how quickly he can change from running around to a quick fever. It is a constant worry and I think he gets tired of us always checking his temp. As I mentioned, I think we are going to have a long winter, but we will take it in strides and do our best to have fun.
I was hoping to have my Christmas cards sent out this year and of course I could never get the 3 boys together for a picture. I tried a couple of times and it just did not work out. Things have been very busy between clinic, ER visits and Greg & I both catching a bug. I will be posting my Christmas letter (something I like to do every year) on this blog site next week, so stay tuned. We are so thankful to have Christmas back at our house this year. I can think back to last year and Nick was so tired and not feeling well. We went over Auntie Lisa's house for a quick visit with the family and open some presents and then came right back home. This year, we will be at home and thinking we will have around 35 people to celebrate the day with us. Karen

Good weekend

Hi All,

We all had a very good weekend. Friday night the boys had their show and as always, it was so cute to see them singing and dancing on stage. Nick was very excited to go and (being on steroids) asked me all day long when it was time to go. He started to get really upset because the time could not go by fast enough.
On Saturday the boys took a special trip to the Enchanted Village with Auntie Lisa and Auntie Michele. It sounds like they had a great time and then stayed overnight at Auntie Michele's house. Our plans on Sunday was to go to the Sturbridge Federated Church and meet the youth group who will be hosting a charity dance in honor of Nick. When I got to Auntie Michele's Nick was on the couch and not feeling too well. I ended up taking him home and Colby went to the church to represent the Shannon Family. Nick was definitely not feeling well all day and we ended up calling the fellow doctor to see if we should bring into the ER. The Fellow Dr. said it was okay to give him Tylenol and then wait and see if he continue to spike the fever. He made it through the night and we decided to keep him home from school on Monday and bring him to clinic right away for counts. He was okay with it and I do not think he had the energy to make it to school anyways.
His counts at clinic came back very good. When Nurse Pat went to listen to his lungs she thought she heard some congestion, so Nick was sent for an x-ray. The x-ray turned out to be fine, so Nick was given an antibiotic (just as a pre-caution) his chemo and we were done. He woke up this morning feeling much better and running around again. He was excited to go to school and see his friends. I think it is going to be a long winter for us, with a constant watch on Nick.

I would say a big thank you to Chemo Angel Melissa. Nick received a Christmas package from Melissa in the mail yesterday and he was so excited. To our surprise, he decided to put the Christmas gifts under the tree and wait until Christmas to open. He is much different from last week and not being on steroids. (Last week he kept asking to open his presents because he could not wait any longer... is his own words) Take care, Karen

Tough Time with Steroids this week

Hello,
We had a great weekend. We were able to buy our Christmas tree on Thursday and then decorated the tree on Saturday. Nick earned his first Karate belt (yellow striped) on Friday night, along with Colby (purple striped). They were both very excited and we are so proud of them. I took Nick to clinic on Monday. It was uneventful and long this time. Nick received his Methotraxate and Vincristine. His counts were all normal except for his WBC: 3.6, it is still low. He started his steroids this week and so far it has been challenging. On Tuesday, Greg & I decided to take the day off and go Christmas shopping. I think Nick really wanted to come with us and he had a hard time at school and daycare. The school and daycare both worked really hard in keeping Nick and making him feel comfortable, but by mid-afternoon he had enough. We cut our shopping trip early and picked him & Colby up. Today was no different. Since I am working from home today, I ended up picking Nick up at school.
As a parent it is hard to watch your child be 'knocked down' again and then a week later, he is back to himself. This gets repeated every 3 weeks. It is a tireless process for us but one we know we must do. Nick cried for about an hour last night because we were watching the local channel telethon. Each class from the elementary schools sang songs. Colby's class was on TV and we were waiting for his class to come up. Nick was getting so upset and I think it was because he was sick on the day of taping and he was not on TV. These are just things we deal with and it has become a part of our life, Nick misses the things he likes to do, Colby gets to do them and Nick gets upset. It really hurts to see Nick miss special events, as he told us, he has missed 2 special events at school so far.
We are really trying to work with Nick and trying to find ways that will make him feel comfortable at school and daycare, so he can stay. Tomorrow we are going to bring in a small blanket for the classroom and when he feels like he needs a break, he can lay down. He is sleeping now. This Friday the boys have their Prospect Hill Concert and we are looking forward to the performance. It will be our third year going. Last year, Nick was going through radiation, hair loss and not a lot of energy, but he insisted on being in the performance. We have come along way in only a year and hopefully we adjust on steroids week and keep Nick going strong. Take care, Karen

Another little bug going around

Nick left for school yesterday feeling great. I ended up receiving a phone call from daycare that he had thrown up and had an upset stomach. I picked him and he felt warm, but not really hot. We waited until about 9pm last night and then decided to take him to the ER. We are not on schedule these days. All of our thermometers were broken and the one I ran out to buy last night did not work great. We really could not tell if he was spiking or just hot from the blankets. After 5 hours in the ER, 3 attempts to access his port, we were sent home. They gave him an antibiotic during our stay, but his counts were good enough to let us go. We kept him home from school today once we found out this morning that Nick threw up again in the middle of the night. He said, he was glad he made it to the bathroom on his own, so he did not have to wake us. He had been napping on/off all day today. I am thinking he just caught the stomach bug, which is probably going around between school and daycare.
Colby is really excited for Christmas and was hoping to get a tree last night. We told him maybe tonight, if everyone feels up to it. It is so hard to get into the spirit when we keep having set backs and definitely some lack of sleep. Tom is teething and waking up a lot at night now. We will just make some adjustments and hope for a better weekend. Karen

PS. I might have lost some of my perspective and the point of our blog. It has been a long week with some unexpected turns. While the intentions is to share with everyone Nick's progress and how we are all doing, this blog is also meant for Nick and hopefully he will be able to read it and truly understand how much he went through during his treatment. I am also hoping for him to see how people are encouraging him along the journey. (not me). He is one who deserves all the credit.

Nick at clinic

Hello Everyone,
The Thanksgiving Holiday is over and how quickly it went by. It is never a dull moment in the Shannon household. I ended up getting sick most of the weekend. I am pretty sure it was the swine flu, due to the symptoms I had, but I can not confirm this. We are fortunate Nick and the boys were able to receive their first shot of H1N1 and I am even thinking Nick could of had a mild form of this virus last week and past it onto me. We will never know but it's definitely frustrating trying to spend a weekend with your family and enjoying time off and then get sick on top of it. I think I am through the worst and now Greg is sick today. I really hoping Tom & Colby do not catch it, but not sure how we stop that.
Nick is great and asked to have Papa (Boston) take him to clinic today. We were able to make that happen and Grammy came over to help out. His counts were good. His White blood cells still low, at 2.4, but all other counts are normal. The boys had no school today, so hopefully we will be back on track tomorrow with school and daycare. Not to much else going on. We are planning on getting the Christmas stuff out this week, but we will have to see how everyone is feeling. Take care, Karen
PS. We would love to hear from anyone who is reading this blog. There are just some days when I do not feel like writing, but keep thinking people would like to know what is going on. I try my best to keep everyone updated with family events but not really sure if it helps.