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

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.

Happy Thanksgiving & 2 visits

Hi All,
We hope everyone has enjoyed the Thanksgiving day. Nick woke up with a slight fever yesterday and we kept him home from school. He was very disappointed about not being able to ride the bus home from school with Colby. He is half day and always rides the bus home by himself. I took him to clinic to make sure his counts were okay. He had dropped about 20% in his white blood cells, but his APC was 7,300. They gave him an antibiotic drip that lasts for about 24 hours. The doctor mentioned if he spikes a fever again today after 1pm to bring him into the ER. Auntie Lisa hosted the Thanksgiving feast and Nick was so excited to go there today, that we actually showed up early. He was good all day. A little on and off with his energy. By 5pm, (after checking his temp a couple of times) we thought he had a fever, 101.1. Greg took him to the ER and the temp was at 97.9, normal. I think all that resting and under 2 blankets made him really hot. His cough was rough and the ER did a chest ex ray. Everything came out okay. His white blood cells did drop to 4.3, over 50% from yesterday. His body is definitely fighting something and we are lucky that his counts were high on Monday, because they are dropping. We plan on relaxing this weekend with the kids and taking it easy. Nick really wants to do so much, but when he gets sick, he feels so tired, so we maintain. I mentioned before, that at this time last year, we just came home from the hospital after a 9 day stay. We begged the doctor to let Nick come home, at that time, for Thanksgiving and were given strick orders to keep him in and under lock down. (Nick's ANC was 250 at the time, very low) Charlie (papa, Greg's dad), gave a speech today at dinner and mentioned about Nick being able to be here today. The dinner tonight really makes the family come together. We miss Tim & Anne from Maine and think about you and family all the time.
Greg & I both thought he would end up at the hospital tonight, but it is okay. We were able to be with family tonight and Nick had a great time. Lisa & Jack did a great job with dinner. Colby decided at the last minute to spend the night with Mitchel..... I guess he thinks they still have battles to settle. I can not say enough about how much family means to us today.
Greg and Nick are pulling into the garage and I am signing off to give more big hugs to our brave boy. 3 port accesses in 4 days. We are looking forward to a quiet weekend. I really do not think that will happen because the boys love being social and think the parents are so boring.... Take care. Love, Karen

Clinic Today & Tom

Hello All,
As we head into a long weekend and giving thanks, we would like to say thank you to all of you and everyone who has been there for our family. About 2 months ago Thomas had his 15 month check up. The doctor detected a heart murmur in him. His blood work also came back a little anemic. I think this is what happens when a child decides to not eat green vegetables. We have tried everything and he just does not like it. How can you not like green beans with butter & salt. Dr. M. decided to schedule Tom for a visit with the cardiologist. The appointment was today.
Tom was due for another round of blood work and Nick for chemo. We (Greg & I) took both the boys to clinic. Debbie does a great job of drawing blood for the kids and Tom did not even cry until the needle was pulled out. He is such a trooper. Tom & I then headed over to the Pediatric Heart building.
I can tell you that Greg & I did not really prepare ourselves for this day and we did not talk about it a lot. As I was leaving Nick & Greg the tears started to come to my eyes, but I really believed everything would be okay. We have been through this and we can handle the visit. Tom had an EKG done and then I met with the doctor. Tom was great through everything and babbled away while eating goldfish. The doctor said everything checked out fine and he is okay. It was a relief, but for some reason, I knew he was going to be okay. You can definitely say, we were much more relaxed about the visit than before everything has happened with Nick. I can not explain it and even seeing Tom with the stickers and cords hooked up to him through the whole process, I was calm. You know, it has to be done and it did not hurt him, that is what matters (no pain, we have seen a lot of that through Nick). We will take him back when he is 3, just to make sure everything is good.
Tom & I went back to clinic to pick Greg & Nick up. Nick's counts were great. A little surprising:
WBC: 10.5
RBC: 11.2
Plts: 309
APC: 8,700
Neutrophil: 72% (the neutrophils are the percentage of the mature white blood cells to the immature white blood cells, the higher the percentage means he is producing more mature white blood cells..... not cancer cells)
We are looking forward to a few days off and Nick being off steroids for the Holiday weekend. We have to get creative because are greatful for 3 VERY active boys.
HAPPY THANKSGIVING and give extra hugs to the people around you and the ones who you are fortunate to see this week. Enjoy the day and take care. Karen

Great Weekend for All

Hi,
Greg and I had our weekend away. We had a wonderful time to relax and de-stress some. We met some wonderful families and know we are working together in every effort to help Nick. The 80's Prom dance on Sat. night was a lot fun. Many of the councilors & parents dressed up in old prom dresses and bow ties made of colorful tape. Without trying to get too deep into the weekend, Greg & I realized how fortunate we are to have each other and how strong our relationship has grown from this experience. As Father Dom stated during his presentation: 'Happy Parents, make Happy Kids', plain and simple.
Greg took Nick to clinic on Monday. His counts were great:
WBC: 5.4
RBC: 10.4
Plts: 260
APC: 3,500
They decided to lower his Methotrexate does this round and then try to bump it back up the next round. The reason for this is because he was sick two weeks ago and they want to make sure the chemo will not drop his counts drastically again. He is back on steroids this week and sometimes I think he is actually playing us. He moaned about going to school yesterday and then the teacher emailed to let us know that he felt tired and had to lay down by himself. He was scheduled to go to daycare, via the van pickup, but I ended up going to get him and bring him home. He came home very happy, played with Grimace and then took a nap. Today, he took the van to Prospect and then ran into Debbie, who was picking up Maggie. He asked Debbie if he could go home with her and wait for Michael to get out of school. Of course, with his sad face, she could not resist. He is at Michael's today playing. He will should sleep good tonight. I think it is better he is on steroids this week before we get into the Thanksgiving Holiday weekend. Take Care, Karen

Hello,
My friend Debbie sent this picture of Nick & Michael over to me. We took the boys to St. Rocco's in Franklin for the Italian Fair back in the summer. The boys had a great time. I can remember Nick getting really upset because he was not tall enough to the ride the big rides. I went on one of the big rides with Michael and Nick cried the whole time. It just reminds me how tough he is. He does not want anything to get in his way.
The Hole In the Wall Group sent us an invitation for a 'Great Escape Weekend' at the Heritage Hotel in CT, couples only. We signed up for this weekend awhile back but were never really convinced we would actually be going. We can not commit to anything in the long term, we plan our schedule week to week now. Well, here it is and it is time for us to get ready to go. This will be the first time we have left all 3 of our children in over 2 years. We are so excited to go, yet apprehensive too. The coordinator asked us to bring a picture of our children and a picture of our family. I immediately pulled out the picture of the 3 boys that was taken professionally after Christmas of last year. At the time, my plan was to have Tom's picture taken only, since I missed so much of him in 6 months. Nick was not suppose to leave the house because his counts were real low but he was so excited and wanted his picture taken. We were scared the whole time and tried to keep Nick away from anyone walking by the photo area. I can look back now and say I am so happy we captured this moment for Nick. He had lost just about all of his hair, he looks pale, but he is smiling. Greg & I laugh at each other because we are the worst people when it comes to taking pictures. We are lucky to remember to bring our camera and then pull it out of the bag. We will be bringing this picture with us and a picture of Greg & I at my High School prom, yes that is right, they are having a 'Prom Dinner Dance' on Sat. night.
We informed Nick and Colby of our big weekend and Colby said it was okay. Nick said we could go for 2 nights only and we had to promise we would be home by Sunday. I am sure I will be crying leaving the house and part of the time away from the kids. We know this good for Greg & I, but also hard to be away. There are many parents who are not able to go these events because their children are in the hospital battling cancer or really sick. We are so fortunate to have Nick back in good health mode and this opportunity for us. I believe the coordinator will probably have seminars and presentations and we are hoping to meet some parents who are going our same journey. I think most of all we would like to relax. Between us both working, Nick going to clinic, the boys in sports and Tom a very active child, there is not a lot of time to rest.
Nick will start another round of chemo & steroids on Monday. He was taken off of the 6mp pill last week when we went into the Hospital, so we have had a little break from everything. Unfortunately Nick is so conditioned about his medicine that he asked us for his pill last night before he went to bed. We explained that he gets a break for a week and he said to us: "did you ask the doctor? Is that okay?". He is a fighter and he believes his medicine will help cure him. We continue to pray it will.
Thank you to everyone who is helping out this weekend, a big family crew is coming together, we appreciate it. Take Care, Karen

Back To Clinic

Hi All,
Nick and I headed to clinic today. He first went to school and was very excited to get back on the bus. Clinic went very well. The nurse (Angie) was surprised to see his red spot from where the ER first tried to access his port. It was pretty high and not where the spot usually is. We still battle with the concept that the ER does not exactly know how to access the port, but since Nick is getting better at it we try our best. In other words, mom did not ask them to call the 5th floor for a nurse to come and do it the right way.
At clinic, we thought his counts would not 'make it' for chemo today, but to our surprise (not Nick's) he made it. Today was Methotraxate only. We will start another round next week. His counts re-bounded great.
WBC:4.5
RBC: 10.4
Plts: 478 (on the high side)
APC: 2,600 (we thought this number would a lot lower)

He still has a cough, but it is loose and so far they are not worried about it. He ended up taking a 3 hour nap today, so tonight will probably be a late night. It is definitely hard to get him back into a good sleeping pattern after leaving the hospital. You can never get a good night sleep there. The nurses check on you all the time, which is good, but does wake us up. We should have a good week this week, and maybe mom and dad can go away. We have had this weekend planned for awhile and will give more details as we approach the weekend.

PS. I would like to say thank you to Debbie and Mike for having Colby & Nick over on Sunday. Nick was going a little stir crazy being cooped up in the house all day and I decided to give Deb a call, planning on having Michael over. She ended up taking both boys, giving Greg & I some time to catch up on house work. This weekend was also originally planned for Tom and I to go to Maine to visit my dear friend Frannie in Portland. She has a little boy, Dawson, who is the same age as Tom and we were planning a shopping adventure and so good winter ale. I ended up canceling with Nick being the hospital. While I was really looking forward to spending some quality time with Tom, I realized we could do that at home to. Greg & I took advantage of giving Tom some 1 on 1 time while the boys were gone. He has such a great personality and loves to laugh a lot, which we all need at times. I'll catch up with you soon Frannie. Take Care. Karen

Test was Negative

Hi,
Just a quick update to let everyone know that Nick's H1N1 test was negative. They did find he had 2 viruses, thus leading to the fever. The new swab test can test for everything. We are trying to keep all the boys busy while at home. Nick understands he can not go anywhere and is okay with it.

Also, Tom and Colby finally received their first dose of the H1N1 shot. Our doctor's office called last week and said they would hold a dose for each child. I took them both yesterday. Colby was so nervous and kept saying he would not get the shot. He cried right up until they gave it to him and then he realized it did not even hurt. After everything Nick has gone through, I think he was scared and worried it would really hurt. I have to say, it was easy for me to deal with. You see so much more that goes on with Nick, that this is just a walk in the park to take care of. Tomorrow we will head to clinic after school. Take care. Karen

Day #2 in the Hospital

Hi All,
2pm Update:
Nick was released from the hospital. His ANC is up to 280 today. He has no fever and the doctor really believes he probably caught a cold and has been fighting it, on top of the steroids and chemo doses, it can knock him down. The doctors also feel it is better to be home these days than in the hospital. So we are going to take it easy this weekend and enjoy lots of family time. Nick will be back at clinic on Monday and hopefully his counts have re-bounded. Take care. Karen

10am Update:
We do not have too much news. Greg spent the night with Nick and he said everything went okay. They had to wake Nick at 10pm to give him the tamiflu and he was not to happy about it. He has to take it in liquid form and not the fun (starburst coated) pills. Greg feels he will still probably leave today, but not until late afternoon, after rounds. His WBC went up slightly to 1.9. Greg did not have any other numbers, but I will keep everyone posted. We figure we will be in 'lockdown' this weekend as a precaution for Nick. More to come.

Nick is in the Hospital

Update as 12 noon today:
Nick's fever has broken. He is feeling okay. The doctors have decided to go ahead and give him Tamiflu as a preventative. They also did a nose swab to check for the flu, H1N1, and any other viruses he might have. He is resting comfortably and watching Indiana Jones. We may be able to go home tomorrow, but we will have to wait and see how his counts are.


Hi Everyone,
I guess there was a reason for his ANC to drop over a week. I am back from my trip and glad I jumped on an earlier flight to be home. Nick had a great day today and a playdate with Michael. I was able to give him a hug before he fell asleep on the couch. Greg carried him to bed and he seemed to be fine. Nick ended up coming into our room around 11:30pm and we noticed he was feeling very warm. We took his temp. and it was 101.1. I mentioned before and I have to repeat it, we were waiting for this. I took him into the ER and the place was packed. We were both wearing masks and I was surprised to see many parents not wearing masks while their children were coughing away. I found the first person I could and asked for a room right away. I guess I thought I would be prepared for our ER visit, but it does not change. Nick did not like his port being accessed and cried through it. We are now up in the 'red' pod, a familiar place but it has been since March the last time we were here. Of course there are new restrictions, no visitors under 18, including siblings and the doors remain closed into the pod. The precautions are good. The doctor wants to start him on tamiflu. They do not think he actually has H1N1, but because of his counts and fever, it is a precautionary measure. His ANC is 60, pretty low from just Monday when he was clinic. His White blood cells is 1.2 and red blood cells at 9.4. I'll try to keep everyone posted on his progress back to a healthy bill. I am going to try and get some sleep. I think I have been up for 24 hours now. Take care. Karen

Holding down the fort without the boss here

Karen is away on business for the first time since Nick was diagnosed. The boys miss mom but enjoy running all over me. Nick finally got his H1N1 shot at clinic Monday. They will not have any for Karen or I as they first anticipated. Our Nurse was telling me that the staff has not received it yet and may not get it through the clinic either. We are still scurring to try and get the other two immunized but we don't know when that will happen. Nick had a little unusual drop in his APC this week. It went from 2400 to 1200 even though he was on steroids (Usually steroids bump his APC..the opposite happened.) It could be attributed to the fact that Nick had a high white blood cell count last week that we think was caused by his body fighting a little cold, therefore his APC was pushed higher and now that his white blood cell is back down the APC dropped as well. No large concern shown by our Nurse Practitioner, I guess we will see what next week brings. It is now time to get kids to bed. Have a great week.
Sincerely,
Greg

Fun Party Tonight

Hi Everyone,
We are doing well this week. Nick has weathered his steroids pretty good. The first day of it (Tuesday) I picked him up from school and he decided he would like a playdate with Michael. Michael and family are in FL this week and I explained we would have to wait. I think Nick cried, yelled at me and kicked things for about an 1.5 hours. He finally exhausted himself and took a 3 hour nap. I feel like I am getting a little better when I know he is going 'lose it' and get really upset. Once he gets lost in the world of 'why can't I do this', it is hard to bring him back. I think it works best when I count to ten first and then have Nick count with me. He has been good since then.
Colby, Nick and I went to a Halloween party tonight. We had so much fun. The kids had a scavenger hunt outside, dodge ball in the garage, ice cream sundaes, donuts on a string and best of all a scary story where you would put your hand in a box and feel the 'body part' (aka food) of the person in the story. Darcy and family had the house decorated and very spooky. Thank you.
The boys are very into Halloween this year. Last year, Nick was home with us but not feeling too well, with all the new chemo & steroids in him. Nick and I sat on our front steps (Kim across from us and we were yelling over to her) handing out candy. I had him all bundled up from head to toe and it was not a cold evening. He was happy just sitting on the steps, knowing he did not feel strong enough to walk around with his brother and dad. Nick remembers Halloween from last year and this year he said he really wants to try and walk around the whole neighborhood. We have the red wagon and maybe we can take Tom in tow with us.

Our family is well now and healthy. Greg and I are very concerned about the H1N1/flu going around. I leave for a business trip to Racine, WI on Monday. I look forward to the trip and seeing some of my co-workers I have not seen in a while and look forward to learning new business tools. I am also scared of leaving Nick and family. I know this blog is not about 'me', but the thought of leaving my family for 3 days is hard. I have not traveled in over a year and a half. I think I would feel much better if we had received the H1N1 shot. We are ALL still waiting for this. We can only receive the shot and NOT the nasal. It amazes me how I have learned some Pediatricians have the shot available, but our clinic does not. I really feel like it is just a matter of time before one of us gets sick. We are taking as much preventative measures as we can w/o trying to hold our kids back. Marie Cowles gave me some good advice tonight. If anyone knows of a pediatrician that have the H1N1 shots for a 6yr old and 16month old, please let me know. I know there is a lot of push back if you are not their patient, but at least I can ask. Nick is not in 'his window' to receive the shot. He can only receive the shot on days 15-21 of the 3 wk protocol. (He repeats his cycle from day 1-21). His counts will start to go down this week and next and then back up on week 3. If the shot is not available then, we will have to wait another 3 weeks for it. I am trying to focus on the rest of the family receiving the shot asap. Thanks for everyone's thoughts and prayers. Take care, Karen

Clinic

Hi All,
Today will be a quick update from us. No really big news to report. Greg took Nick to clinic yesterday and his counts were very good.

WBC: 5.9
RBC: 10.2
Plts: 245
APC:4,600

They have decided to increase his methortraxte to 100% dosage this week. He recieved Vincristine and is back on steroids and 6mp. We are still waiting for the H1N1 shot for Nick and nasal spray for the boys. It is frustrating waiting, but we know everyone else is waiting to. Until then, we continue to remind the boys to Purell all the time.
We are looking forward to the two Halloween parties for Colby & Nick and of course Saturday night. Nick is going to be the red Power Ranger and Colby is going to be a jedi. (Although his costume looks like a warrior, but that's okay). Everyone take care and have a great week. Karen

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

Nick is in the paper. Check it out.

Hi Everyone,
Nick and Colby made the paper for their big day at the State House. They were both so excited to see their picture (in color) in the paper. The link does not show the second picture of the boys. It is the one I posted on the blog recently of the medal and award certificate. We sure wish Tom could of been there for the picture.


http://www.milforddailynews.com/news/x356129942/Bellingham-boy-receives-honor-for-fight-against-cancer

We took Nick to clinic yesterday. It was a very busy day at Hasbor Clinic. I decided to bring my dad (Papa Boston) and Tom with me. Tom needed his blood work taken for his 1 yr visit, (I am little behind on the schedule) and my dad wanted to see how the process works at clinic. We were surprised to learn that everyone must wear a mask when you are in the playroom at clinic. If the child can not/will not (due to age) wear a mask then they will be assigned a private room for their visit. Of course, Tom could not wear a mask and there was some confusion going on about 'where to put us', since all the private rooms were taken to by the younger patients. Papa kept Tom out of clinic most of the time and they found us a spot for Nick. I think it is great the pre-cautions they are taking with up coming flu season but makes it a little more crazy at clinic. We will adjust to make sure we keep those bad germs away. Nick's counts were very good.

WBC: 3.7 (a little low)
RBC: 9.1
Plts: 330 (normal)
APC: 2,600 (still a little high and they might adjust the chemo again next week)

Take Care, Karen

Port Access and Congratulations to Finn

Since I had the camera the other day from the State House, I thought it would be neat to take pictures of Nick getting his port accessed. We have come a long way since the start of his treatment. He used to cry and scream and really did not like the needle. He is now much more comfortable getting his port accessed and even helping the nurse out. Here are steps he takes:

1. Numbing cream was placed on his port prior to accessing. When we get to clinic Nick will take the bandage w/cream off.

2. The nurse cleans the area with something we call the 'stinky angel'. It smells bad, but keeps the skin sterile

3. You can not see this picture too well, but the nurse actually has a needle w/IV tube attached and she sticks the needle through his skin and into the port.

4. The nurse then attaches a syringe like needle and tries to draw blood. (Sometimes the port can move and the blood does not come out, that's for another day)

5. She fills up a couple of syringes

6. Nick helps her move the blood from the syringe to the test tubes. He really likes this job

7. There is his blood to be sent off to the lab.

He keeps the needle in to wait for the IV chemo to come. Once that comes, they send it through the port and then de-access the port. This is the only way he likes his blood drawn. He is not used to a needle in the arm.

Nick has been doing great in school and we are happy he is enjoying it and making new friends.

I have some wonderful news that I wanted to share: A family we have met at clinic, The Whelan Family, have just finished treatment for Finn. Finn was diagnosed with ALL T-Cell and followed the same protocol Nick is currently on. They just received the great news a couple of weeks ago and his last day (of all those toxic drugs) is today. Way to Go Finn, we are proud of you and your family can hopefully fall back into some 'normalcy' and more play time at home. The Whelan family have really helped us through our clinic visits and they have seen Nick at his worst and would always re-assure us that it gets better. They gave us advice and were a shoulder to lean on. We thank you Whelan Family. Take Care Karen

Nick the Ambassador

Today was a big day for Nick and a very humbling experience for all of us. The boys woke up eager this morning to wear their new clothes, a tie, shirt and dress pants. They looked so handsome and of course tears came to my eyes. (That is pretty much how the day went, I think my eyes were never dry). We then headed to the RI State House for the big press conference. I was amazed to see how many kids showed up, I guess 'skipping' school today is okay. The Governor gave a speech and then the Child Life Speciallist started with announcing the kids who have lost their life, 2009 Ambassadors and then Lifetime Ambassadors. They brought the kids out of the room and had them enter through a side door when their name was called. Nick got up and left on his own and waited in line w/o his parents. Colby would check on him during the announcements of the kids and then come back and sit with us. When they announced Nick's name he walked (I really should say strutted) up to the Governor to shake hands and have his picture taken. We did not originally tell Nick he was going to receive a medal, so he was very excited when he received the medal and a certificate. After the ceremony, we headed to the state stairs for a group picture. Nick and Colby sat on the first step and the Governor sat right next to nick. We were able to visit with our Clinic friends and even see the ones who are now in remission. This day was for RI to honor The Tomorrow Fund Clinic and all they have done (financially and emotionally) for patients at the clinic.

After the morning, we headed over to clinic. I think today was our quickest visit EVER. We were at clinic less than an hour, that never happens and Nurse Paula was great. She even let me take pictures of Nick having his port accessed. I will post those pics on the next blog. We missed Tom very much today but we know he much more fun at Nancy's house than us trying to keep him quiet during the ceremony. We will have much to tell him as he gets older and hopefully this blog site will help him understand as well. Karen

Chemo Dose was Increased

Hello All,
Nick went to clinic on Monday. His counts were good and he received another round of chemo. They have decided to increase his Methotrexate dose on a weekly basis. He will be 3% from maxing out on the dose. The reason to do this was because of his counts. He counts were still a little too high for his protocol, so this will bring his counts down some. He is on steroids this week and is doing well with everything. He is very emotional on the steroids and anything can set him off. Greg and I definitely watch what we say to him and look for the reaction. He was the star of the day today at school, which is great because he ended up having a rough day. Nick said it was to loud and we agreed that we would buy him some ear muffs and he can wear them whenever he feels like it. He did this at daycare and it worked really well.

White Blood Cells: 3.9 (Normal 5-10)
Red Blood Cells: 9.3 (normal 10.6-14.6)
Platelets: 337 (normal 150-400) - goodd
APC: 2,700 (They want to see this number around 1,000)
**The APC is a calculation of the immature WBC to the mature WBC.

As I have mentioned before it is National Childhood Cancer Awareness Month-September. In honor of this month, Governor Carcieri (of RI) will be holding a press conference in conjunction with The Tomorrow Fund next Tuesday at 10am at the RI State House. Nicholas has been asked to be an ambassador for Bellingham and will recieve special recognition and a medal. While we are so exicted he will part of this event, we can not forget the reason for us being there. Cancer Sucks. No child deserves to go through the treatment of cancer and what it does to their bodies. But, again, we can help these kids out there just by donating blood, platelets or become a bone marrow donor. (marrow.org). We will take Colby out of school to, as he is just a part of our journey too. The day will be remembered for all the kids who are there, the ones that could not make it and all the kids who have lost their battle to cancer. We will be sure to post pictures of our Brave Son. So, give your kids extra hugs and enjoy the moment.

A lot of people ask us how long is Nick's treatment, his protocol lasts approx. 2 year. I have figured out, if everything keeps on schedule, that we have 60 weeks left of his treatment.
Karen

Meet the Teacher Night

Tonight was meet the teacher night at Colby & Nick's school. We had Papa 'Boston' babysit the kids today and they were excited to see him, as always. Nick kept telling us he wanted to go with us but we told him it was an adult only night. I have met Nick's teacher prior to school, we covered his protocol and discussed Nick's health and some watch 'out' signs she needed to know. His room was great and I was sitting there the whole time excited to actually believe my son is now in Kindergarten. For one of the first times, there were NO tears in my eyes, just admiration for our son who will make new friends and hopefully enjoy his first year in school. On his table there was a cookie made for each parent with a note to us. It was so cute and we soon realized why Nick wanted to be there.... to make sure we did not eat the cookie. The teacher told us all the kids were worried that their parents would eat the cookie and not save some for them. Of course we saved the whole cookie for him and Colby to share. There were so many times when I felt fear of Nick going to school and is it the right decision right now. Of course Nick would never let us keep him in the 'bubble' we feel comfortable with. He gets up every morning looking forward to the bus and school. Colby's classroom was very busy and very active. I was amazed to see how many learning stations he has in one day. Greg and I were tired just listening to his day. He enjoys going to the bus stop with Nick and I think (secretly) being a big brother and telling Nick all about school.

We would like to thank Peter Walsh for sending a prayer request to the Shrine of St. Jude Thaddeus. We know there are MANY people out there praying for Nicholas and we truly appreciate all your thoughts in helping to heal our child. Next week Nick will receive another round of Vincristine, Methotraxate, 6MP and back on steroids. This will be the first time going to school on steroids and I have to pack a 'goody' bag for him. His appetite will be picking up.
Take Care, Karen

The Shannon Family

Hi All,
We had a nice Long weekend with the family. The kids were great and Nick seemed better and fighting off the virus he had. He was almost back to himself during the weekend. He felt cold and tired some of the weekend but still enjoyed a friend's Bday party and visit with the cousins. Today, was back to school and Nick gave us another surprise. He woke up in pain this morning. He said his ear hurt and he was crying and really upset. Even though we kept insisting he stay home, he refused and really wanted to go to school today. His temperature hovered around 99.6 this morning. He cried at the bus stop because he wanted water because he was coughing. It is really upsetting to see him this way because he just wants to be 'normal', attend school and meet new friends and especially ride the bus. So, off he went on the bus and no sooner that I sat down to start work, the phone rang. The nurse at school called to say Nick was upset and not feeling well. Greg came home early from work and took Nick to clinic. We have been thinking over the weekend that he would probably need a blood transfusion today. His counts were not bad and his red blood cells were at 8.5 (normal=10.6-14.6). His white blood cells were 5.9 (normal=4.4-11). Greg figured out what we thought was an ear infection was actually a jaw bone pain. There was rough playing this weekend with Colby and Joey and we think Nick might of hit his jaw bone on something. The clinic nurses drew cultures and also gave him some antibiotics just to be sure. If he still feels tired tomorrow, I will take him to clinic for the transfusion. His body is definitely still fighting off the virus he had and we think it just takes a lot out of him. He was really sad he could not stay at school but hopefully he will make it tomorrow. It has been a rough start for him in Kindergarten. We know it will get better and hopefully Nick continues to show the 'spunk' he has for school.

This month is National Childhood Cancer Awareness Month. There are different ways you can help support all the families who have children battling cancer. You can become a bone marrow donor. It is just a swab in the mouth. You can order kits online: marrow.org. Another way is to donate blood or platelets. Here are some facts about Childhood Cancer:

• Each school day, 46 children are diagnosed with cancer.
• One in 330 children will develop cancer by age 20.
• Each year in the U.S. over 12,600 children are diagnosed with cancer.
• Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
• Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
• 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
• There are currently more than 270,000 childhood cancer survivors in the U.S.
  Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe

Karen

Nick missed his 4th day of school

Hello,
I guess scared is all that I can think of these days. We are so proud that Nick has started kindergarten and he absolutely loves it. I can actually enjoy some quiet time at home and get my work done without interuptions. There is not a minute that goes by while Nick is at school that I can not help but wonder.... is he washing his hands, did he touch anything, did someone sneeze on him. I understand these things are out of my control, but letting go, is not easy. So, what happened? Nick definitely had some dirarhea on Wednesday during the day. He went to bed Wed. night and woke up in the middle of the night and threw up. We told him Thursday morning that he could not go to school and he was so upset. He was worried that he might be 'star of the day' and he would miss it. We explained to him that star of the day would be someone attending school that day and he would have another chance. Greg called clinic and Nurse Clarie said to give him some zofran (anti-nausea medicine we usually give him before chemo). She said as long as he does not have a fever, to continue to watch him and keep liquids in him. The zofran seemed to help his stomach pain and stop the throwing up. He went to the bathroom quite a bit, but we think he was just getting rid of the virus he had. He feels much better today and the kids are actually off today, which is good, because I do not think I would have sent him anyways. We are planning on enjoying the long weekend with the kids and some outdoor time. Karen

Kindergarten Here We Come

Hello,
I have to first start off with our day at the beach. A thank you to Debbie and Mike who hosted us for a day in Marshfield. The boys were so excited to hang to with Michael and Maggie and Colby learned how to Boogie board and 'dive' the waves. Nick was more chill and played with maggie on the swingset. It was a great way to end the summer. This summer has gone by so fast and I am sure many people agree, although it has been different this year, we really enjoyed every non-rainy minute we could.

Colby and Nicholas started school on Monday. Colby is in 1st grade and Nick started Kindergarten. If we think back to about 10 months ago we never would have thought Nick would be able to go to kindergarten. We are so proud of him and how strong he has been through the harsh treatments. Sunday night, Greg and I were so happy to have the boys asleep by 8:30pm. Unfortunately it did not last to long, Nick woke up with extreme back pain. Greg was up with him most of the night trying to ice pack his back and giving him some medicine. We think the pain was from his spinal and just coming off steroids. He was still in a lot of pain on Monday morning. We told him it was okay to skip school today, but what 5 year old wants to miss their first day of school. He was so determined to take the bus and get to school, he just dealt with the pain and off he went. It was wonderful to see both our boys get on the bus and have an awesome first day. Colby came home to tell us that: "He does not have homework, but Greg and I do." I picked Nick up from school and headed to clinic after. He was very tired but everyone at clinic were walking around and congratulating Nick on his first day of school. (I think he wanted to be left alone and rest.... but he deserved the spotlight). We are off for another eventful day. Nick is feeling much better today. Take care and good luck to all the kids starting school. Karen

Spinals and getting ready for Kindegarten

Hello Everyone,
Karen tried to Blog yesterday after she got the results of Nick's Spinal, but could not log in for some reason. It is good news as there were no "blasts" in Nick's spinal fluid. You can't imagine the feeling of hearing those words. Karen and I could not sleep before the procedure. It is funny 5 months ago, Nick getting a lumbar puncture was just another in a long line of procedures. Maybe we were numb? Now, you get farther away and it is like the first time, scary and that is not to mention waiting to find out the results. Nick handled the whole procedure like a grown man while mom and I worried, oh and of course we forgot his "Thomas The Train Pillow". No big deal to him. So with that behind us and Nick just accelerating back to being the kid we once knew he has to get ready for another scary change in his life. School! He starts Kindegarten on Monday. That means the bus, new friends and having to listen(yikes), maybe even homework. Luckily for Nick, his big brother will be close. Knowing Colby he will try and check in on him often. We are excited to see him get on the Bus and at the same point we will be nervous of the unkown...just like any Parent.
Thanks for caring,
Greg

Fun Weekend

Hello Everyone,

We had a great and busy weekend. Our neighbors invited us over on Friday night for a cook out and swimming to cool off. The boys were great and Colby has now started swimming on his own, w/o swimmies. Thomas kept us on our toes. He likes to stay close to the water. Nick is enjoying swimming a lot more this year than last. When I think about last summer, Nick never wanted to swim in pools and always complained the water was too cold and made him 'hurt'. We never understood why and would tell him to just try and swim. He would love going to the beach, which we did lots of day trips and play in the water. He would takes walk on the beach with Greg and then complain on the way back that he could not walk because his legs hurt. We thought he was just tired from the walk and wanted to be carried. We know we can not blame ourselves for the 'unknown' at that time, but it does not leave our minds either... something was not right.

This weekend was great because Nick was swimming everday from Friday-Sunday and never complained about pain or how cold the water was. We went to see Auntie Michele and cousin Rachel down in Sandwich on Saturday. The boys have boogie boards and once across the rocky sand, they were good to go in the ocean. Nick was hesitant at first, but once he was out in the water and floating, he was so happy. Colby is a fish and stayed in the water most of the day. The weather was beautiful and we enjoyed a cookout before heading home. On Sunday, I took Colby & Nick to St. Rocco's fair and met up with Michael and family. Nick wanted to ride every ride but unfortunately he was too short for a couple of them. He cried and was truly upset that he could not ride with Michael. Hopefully next year he will be tall enough. We headed back to the Diddario pool for lunch and cooling off. The boys had a great time and were tired by the time we got home.

Clinic was uneventful. We had a follow up appt. with Dr. O'Connor, our radiation doctor. She had no concerns and we do not have to go back until the end of his treatment. His counts have dropped some, which makes me feel a little better. People have asked why do you want his counts to be on the lower side and I thought of this example. (Hopefully you can follow me on this one, it definitely came out of no where). Imagine a huge bees nest and you are trying to get rid of the sick bees and keep the healthy ones in the nest. You only have one bottle of 'Raid' to use. If there are too many bees in the nest and you run out of raid, what happens? The sick bees could multiple faster and prevent the healthy bees from doing their job. We can only give Nick so much chemo, before you max out and the lower the counts, the easier for the chemo to attack the weak/leukemia cells. Now, they will also get rid of some of the healthy ones as well, but the weaker cells usually do not survive. I hope I made some sense. Of course, too low, means he could be neutropenic, which we do not want. The doctor's look for the happy/medium point on his counts.

Next week, Nick will have another spinal. He will receive Methotrexate through the spine and the doctor will take a sample to make sure they do not see blasts in the central nervous system. He will be asleep for this and I think the most difficult part is not being able to eat before. Nick is usually hungry and grouchy by the end. He does not like to be put to asleep, it does scare him but Greg or I will be in the room when he falls asleep. He will also have his 'Thomas the Train' pillow. This pillow has been with Nick since day 2 of his treatment and he feels 'safe' with it. I have attached a picture of Nick and his pillow. Take care and pray his spinal will go okay. Karen

Uneventful day at Clinic

Greg took Nick to clinic on Tuesday and it was business as usual. Nick was in great spirits and joked with Nurse Pat. His counts are really good... for us, they are almost too good. As the nurse explained to us, you do not want them too high for his protocol. They have adjusted his 6mp up and will continue to monitor his levels. Nick's legs seem to be gaining some strength back into them. He can run a little now and we have seen him chase Colby around the house. Nick even tried Karate last night. Colby has been learning Karate since January and Nick was never interested. I think he knew he did not have the stamina for it. Last night he surprised me and asked if he could try. He had a great time, I was so proud of him. Eventhough he was the last to finish in every sprint race, he still had a smile on his face. The lesson was actually very cute because Colby (the ever protective brother) kept looking back at Nick to make sure he was okay. The instructor had to keep reminding Colby to look forward. We are going to try again tonight.

Counts:
WBC: 6.3 (Norm. 5-11.0)
RBC: 11.5 (Norm. 10.6-14.6)
APC: 4,500 (Similiar to ANC)

We have a busy weekend planned as the summer nears to a close. I can not believe we only have a couple of weeks left. Take care everyone, Karen

We Are Home

Hello,

We hope this post finds everyone doing well. I am not sure where to start. We have had an active week in a half. First, the boys are great and Nick is doing well. He weathered the steroids even better this time. I believe this is the first time he did not complain of pain during the 5 days. His moodiness and appetite is still there, but we will take it over the pain.

The Red Sox game was great. We had plans to go on the field before the game started and watch batting practice, but unfortunately it rained before the game and instead we received a tour of the stadium. The parents enjoyed the tour, but the kids kept asking to go to their seats. They thought it was cool to shout out and order (every) food that came by our seats. Papa and Jane were at the game and their seats were about 20 rows in front of us. Nick sat with them most of the time and Colby chilled with us. The boys lasted until the 6th inning and then we headed back to Papa's house. The boys rode the subway for the first time. Colby was so scared to get on the subway and then had a blast riding. The day turned out to be beautiful and just what we needed before heading out to Camp Sunshine. Thank you the Daddario family for the tickets.... It was a time to remember, especially since the Red Sox won.

I took Nick and Colby to clinic Monday morning. Nick was due for another round of treatment. He received Vincristine and Methortrexate through the port. He was on steroids last week and 14 days of 6mp (Chemo, pill form). His counts were great and the boys were ready to head out on vacation.

We had a wonderful experience at Camp Sunshine. First, the weather was unbelievable. Sunny everyday. Anyone who lives in New England, knows we have had a VERY rainy summer and to have 5 days of pure sunshine, was awesome. Camp Sunshine, as I mentioned before, is a FAMILY camp for children with illnesses. The week we went was for oncology kids. I was surprised to see so many of the kids in remission and the families keep coming back year after year. The camp was designed for the kids to have 'camp' time, while the adults participated in group sessions or free time. We also had 'family' time during the day as well. Camp Sunshine is located on Sebago lake and you could swim, kayaked or paddle boat. They had an indoor pool, which was a favorite for Nick and Colby. The campers were broken out into groups by age, (3-5, 6-8 and so on). Since Colby really wanted to stay with Nick (and vice versa), Colby stayed in the 3-5 group. Colby was so great with all the kids, he kept saying he was the oldest in the group and would help out whenever he could. Nick was steroids this week and could be somewhat moody. Colby always tried to make him happy and would do whatever Nick wanted to do. The Camp had 2 huge playgrounds and sandboxes. The inside activity building was amazing. The Arts and Crafts room was big, as well as the 'tot lot'. They had rooms set up for the pre-teens and teenagers. There were about 40 families there and the majority of the families were either survivors of ALL or still in treatment. The boys made some new friends and are now asking for playdates with them. Tom was one of two babies there and of course received extra attention from everyone. He, as always, just goes with the flow. He was definitely worn out by the end of each day and slept great at night for us.
As for Mom and Dad, we really had a great time. We enjoyed each other's company when the kids were in camp and then looked forward to picking them up and spending time with them. It was definitely a unique experience to have: we kayaked together and felt so relaxed knowing our kids were having a blast. If I could describe Camp Sunshine in one word, it would be: Peaceful. It is hard to put into words why this week was so special to us. We understand we are going through a 'different' situation than most families and we really try to not take anything for granted. Little issues do not effect us the way it might affect other people. We made the most of each day. We came to Camp Sunshine not knowing what to expect and left with a feeling of confidence and knowing we will fight to the end as a family. The volunteer counselors as well as all the families we met are special to us and welcomed us without judgement. I attended some of the parent discussion groups and learned a lot about myself as well as the journey of these families. Greg was able to take some time to himself and enjoyed the walk along the marina. The last night we all walked down to the pond and each child had a made a 'wish boat' during the day. We lit candles for each boat and the kids made a wish and put the boats in the water. After, we headed back to the auditorium where each group performed on stage. The kids are amazing, to know what they have been through or are going through, you would never know with the smiles on their faces and the fun they had. We even learned that some of the counselors (a family of 4 in particular) where 'campers' at one time. They are survivors and come back every year to volunteer.

I am working on downloading my pictures and the disc Camp Sunshine provided with a bunch of pictures. I will try to post the slideshow soon. Take Care, Karen