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