A picture of Thomas

Hello,
I am blogging tonight about a picture that was posted in the last photo album I uploaded. The people who did see the album will understand the picture of Thomas. I apologize for this picture and really believed it was deleted before the album was uploaded to this blogsite. You have to go through the Picasso web album site to create an album, save it, reboot your computer, log into our blogsite and then upload it. I am still not sure how this picture showed up because I went back into my Picasso album and did not see it. It is a public site, so a little scary to know about this.

Of course I woud like to end this blog on a positive note. We all had a great weekend. Nick had a sleepover at Michael's house Friday night, thank you Debbie & Mike (Michael's dad). Mike also took Nick for a hair cut. He looks great. Hair is very thin and pretty much gone in the back. He wanted a mo-hock, but he almost has one. We all went to Auntie Lisa's and Uncle Hectors house for an ice-skating party on Saturday. It was warm out during the day, but Greg & Colby skated at night. We enjoyed our time with family and friends. No big news to report. We head to clinic on Tuesday afternoon and then we start the cycle. The boys are off tomorrow and Papa Boston is coming for a full day of fun. Take care, Karen

Hello Everyone,
I have to back up a few days to Monday, January 11th. This is the day, 7 years ago, that I married Greg. I am so lucky to have him and how much he supports me during those 'down' times. We have grown stronger in our marriage and family through this journey. I love you Greg.

WBC: 5.7
RBC: 9.8
Plts: 217
APC: 4000

Nick was very excited to go to clinic with Grammy this week. They went on Tuesday and everything was great. We are working on getting back to a Monday schedule. (He was off schedule because his last spinal was on the Thursday and then he started his cycle that day to.) We will go next week on Tuesday and then back to the Monday schedule. Nothing really exciting to report this week. The boys will start swimming lessons this weekend. Nick is looking forward to it. He remembers how the pool helped him with his back and leg pain last time. He still has some pain during those steroid weeks, so this should help him. Between sleepovers, playdates, school, karate and swimming we have been busy. We'll take these good weeks and enjoy them. Karen

Glad steroids are over

I feel like a broken record at times with his steroids but they really do a number on him, mentally and physically. He ate a lot this time around. I think he had 2 cans of soup at dinner the past 2 nights and was still hungry. He has complained of some back pain and definitely had stomach aches this week. He had a very rough day at school on Tuesday and the nurse called to say he was crying because he was in pain. Greg ended up picking him up early and his mood changed as soon as he got home. I think he just really feels more comfortable at home during steroid week and does not want to be at school or daycare. It's tough to have patience during the steroid week. You try everything to calm him down when he starts to get upset and sometimes it just does not work.
Yesterday was clinic day and Greg brought Colby with him. Colby has not been to clinic in a while because of the 'mask' policy, but they have now lifted it. Everything went fine and Nick's counts are VERY high. This is very typical coming off of a steroid week, his counts usually go up. We expect them to go back down next week, after he finishes his 2wks of 6MP. After clinic, the boys headed over to Dave&Busters for some play time. They all had fun and Nick was in bed early last night.

WBC: 10.4
RBC: 11.3
APC: 7,100

I posted some new pictures. They are from Oct-Dec. of 2009. You will our friends, family and the kids in them. I know they are hard to see because the box is so small and I do not know of way to make it bigger. I'll have to try and work on it. Take Care, Karen

Happy New Year & Spinal Tap is clear

The good news was just confirmed and Nick had 0 blasts in his spine. His spinal tap last Thursday was much different from the past ones he has had. The procedure is the same but this time we were able to be with Nick the whole time. The clinic usually uses the 'procedure' room in the OR at the hospital. The room is very small and overwhelming with machines, people and everything constantly beeping. Nick gets really scared going into the room and I hold him while he falls asleep and then I have to leave. This time around his spinal was actually done in the PICU recovery room. I held him while he fell asleep and then Greg & I stood back while the doctor performed the spinal. It was very interesting to see and watching the spinal fluid drip and seeing how clear it was, made us feel better. The doctor talked us the whole way through and Nick actually woke up happy and hungry.
We did lots of day trips this Holiday break, up until Thursday. We also had many firsts this week:
1. First sleep over with Michael at our house
2. First time the boys have ice skated
Colby did a great job and really enjoyed it. Nick was afraid of falling but still tried. Each of boys used 2 milk crates tied together for balance. Nick enjoyed sitting on his crates and getting rides around the rink. Thanks to Amy and Jen for helping us out
3. First time Colby & Tom stayed up until midnight and watched the ball drop
Nick was disappointed he did not make it this year but we told him next year he can try again

Today is back to school for the kids and back to work for Greg & I. We will be getting back into the routine and Nick will end his steroids tomorrow. He has been emotional and we pick the battles with him that we feel necessary. He has been craving apples and broccoli this time. Go figure, I keep running out of broccoli. His hair is still falling out and we did talk to the doctors about it last week and it is just part of the treatment. We met another family there who is going through our same treatment and they mentioned the same thing with their daughter. Her hair was growing back and then all of sudden it just started to fall out again.
Hopefully I can post some new pictures this week and share with you our Holiday break.
Take care, Karen

Hello,
We hope everyone had a wonderful Christmas. We had our count of 29 family members and then an extra 7 for dessert. Tim & Anne from Maine (Greg's brother) were able to come down for the day and spend time with us. We have not seen them in a couple of years and it was good to catch up and have the cousins play. Ann from Ohio (Greg's oldest sister) drove from Ohio to come spend time with us and Therese and Charlie. The Shannon side of the family were able to have all 5 children together (and Ilene in spirit) for the day. As crazy as t was, we really enjoyed all the entertainment.
We are still planned for Nick's LP (spinal) on Thursday. We have seen over the past week that he is losing his hair again. He complained about his head being itchy a month ago and I was using Baby Oil on it to help it. I am not sure why, but it is a side effect of the treatments. This phase of his has NOT changed and I am thinking it is just the combination of chemo and maybe the baby hair falling out and the new hair growing in. I do not think it is the later effect, more the chemo. He is okay with it, but of course I worry when he goes back to school next week. Colby has noticed it and mentioned to Nick that he is going bald. I think it is hard for Colby to remember when he was bald. Nick, as usual, just laughs at it and says he is taking his medicine.
We take everything in stride and hopefully will see new growth soon. Take care, Karen

We love to hear all your engourgement and prayers. Nick has been asking about his site lately and who is ther. thank you all.

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