Hi All,
This week we were at clinic on Monday and Tuesday. Both days were uneventful, which is good. He received his shot (4 to go) and the Vincristine chemo. We had to go back to clinic on Tuesday for the Methortrexate chemo. He came home on Monday with his port still accessed, so the clinic could administer the chemo on Tuesday through the port. He did a great job protecting it. Tuesday morning was his Kindergarten orientation. The school had all the kids line up behind the cone with their teacher's name on it. Then the teachers brought the groups around the school and even for a bus ride around town, while the parents stayed back for the presentation from the principal. Nick said he had a fun time on the bus except it was 'so bumpy, that his bum hurt'. He seems really excited about going to Kindergarten in September. I decided to send him to school (Prospect Hill) today. He said this morning that he did not feel like going, but was happy once we got there. I know he feels comfortable at school and the teachers are wonderful with him and the kids. They really go out of their way for Nick, we can't thank them enough. Greg and I believe Nick still needs to be with his friends and socialize, even on the days when he feels off a little. Today was one of those days. Nick said he was feeling 'homesick' when I picked him up today. I know being back on the steroids has his emotions going through a roller coaster. He will relax this afternoon and then off to see Joey tomorrow and maybe Michael on Friday.
Take Care, Karen
Wednesday, June 3, 2009
Tuesday, May 26, 2009
Nick Counts on ONE hand
Hi All,
Nick received his 6th shot today and now can count on one hand.... 5 to go. It is amazing/hard to count back to 30 and everything he has been through. He still walked through the door excited to be almost done with the shots. I do not think he really knows how far he still has to go, but we keep plugging away day by day. He keeps us happy all the time, with Colby and Tom cheering him on. We are enjoying the warmer weather and Nick is actually getting used to wearing his baseball hats. We had are friends over this weekend and it was really great to see everyone. A last minute plan, but fun we had.
Next week Nick will start clinic two days a week until the shots are done. One of the Chemo's he was receiving is done (Doxurubicin), due to the dosage amount. It is so powerful that you can only receive the max dose and then we move on to another one (Methotraxate). The other one can not be combined with the shot so we go the day after. Greg has been helping a lot with double duty and clinic. Our work has been crazy, but everyone has been very flexible and helping out when they can. We truly appreciate all the support. Love, Karen
Nick received his 6th shot today and now can count on one hand.... 5 to go. It is amazing/hard to count back to 30 and everything he has been through. He still walked through the door excited to be almost done with the shots. I do not think he really knows how far he still has to go, but we keep plugging away day by day. He keeps us happy all the time, with Colby and Tom cheering him on. We are enjoying the warmer weather and Nick is actually getting used to wearing his baseball hats. We had are friends over this weekend and it was really great to see everyone. A last minute plan, but fun we had.
Next week Nick will start clinic two days a week until the shots are done. One of the Chemo's he was receiving is done (Doxurubicin), due to the dosage amount. It is so powerful that you can only receive the max dose and then we move on to another one (Methotraxate). The other one can not be combined with the shot so we go the day after. Greg has been helping a lot with double duty and clinic. Our work has been crazy, but everyone has been very flexible and helping out when they can. We truly appreciate all the support. Love, Karen
Friday, May 22, 2009
A pretty normal week
Nick has completed another week of his shots. He has 6 left. We are telling him next week that we can count the number left on one hand. Nick had a lot of pain in the beginning of the week, but has steadily got better as the week has progressed. So much so, that he went to school yesterday. They played outside all morning as it was a nice day. Nick really pushed himself and was doing his best to keep up with the other kids. He really gets quite bloated and large after the steroids. You can see he is uncomfortable, but of course he just deals with it. We try and limit the amount of food intake during this time, but it is hard when he is tapping you on the forehead at 3 am asking for cheez-its. That is when you realize he has no control over these feelings. It is great when Nick comes off the steroids and starts becoming himself again. He and Colby really play well together when he is feeling good although he does take advantage of Colby's good nature. Tom is all over the place and the two older boys are starting to understand that he is a person and he wants to be involved. They don't necessarily want to involve him all the time, but both of them are great big brothers. We are hoping for a great holiday weekend and wish you all the best.
Tuesday, May 12, 2009
Happy Mother's Day - A Weekend at Hole in the Wall
Hello All,
We had a wonderful weekend and can not say enough thanks to Hole in the Wall. I have attached some pictures and I can take you through them. Our camera battery died right at the Mother’s day breakfast and for some reason the pictures are out of order. I thought I was more digital inclined, but I guess not.
The first picture is coming into camp. The white building on the right is the administration building. We stopped their first and were greeted by Beth. Beth was our ‘Family Pal’ for the weekend and specifically there to take care of Tom for us. She was awesome and so good with Tom. He took right to her. It was kind of different to have someone carry your baby around while you had time to run after the boys and just relax. We also met Eric, another ‘Family Pal’ for us. He was great with the boys and Colby really took to him. The big building is the dining Hall. Greg and I can both say the food was great. Even though you have a camp style feel to the whole place, the food tasted homemade. The next pictures are of Sunday morning, Mother’s Day. The councilors decorated the dining hall and all the kids gave their moms presents. We sang songs and all the Mother’s received roses. This was definitely one of the best Mother’s Day I have ever had, especially with Tom this year. J
Let’s back up to Friday night. We had dinner and then headed over to the bon fire. The gang introduced themselves and Bruce kicked off the night with flame throwing. You can see Colby enjoyed the Smores. (Eric is behind them) We stayed in LuLu’s Lodge. It had the ski lodge feel but very clean and warm feeling. We had two rooms (2 bunks in each) with a joining bathroom/shower. You can see the boys getting ready for bed. On Saturday morning Beth was waiting for us in the Lounge area of the Lodge. She was ready to take the boys to the gym before breakfast. The gym was huge and a great place for all the kids to hang out. Saturday they had a bunch of activities for the families to do. We headed over to the boat dock for some fishing and you can see Colby caught a fish, although he refused to ‘kiss the fish’. We stopped in at the huge tree house and then the boys went to woodworking and each made an Army tank. After lunch Greg and I had time to ourselves. Beth and Eric played with the boys back at the lodge while Greg and I walked around the lake. We really enjoyed the time to ourselves and catching up with each other. After rest time we headed over to the rock climbing wall. We could not convince Colby to try, but they both decided to be spotters for us. The zip line was not working, so Greg and I repelled down the wall. The camp had stage night after dinner. The kids were so cute and most of them, not shy at all. Colby eventually got up and played the drums for the crowd. Sunday we were up bright and early and of course Beth was waiting for us. She took the boys (in the limo as they call it) to the gym, while Greg and I sadly packed up. After breakfast we headed back down to the boat dock for more fishing. And wouldn’t you know it, Colby caught the first fish of the day. He was so excited. The we headed over to Archery. The boys really loved it and I think Greg is getting some ideas for home. We ended the day after lunch and thanking our family pals.
We (I am sure greg agrees) can not put into words how wonderful this place was. The staff really made you feel at home and such a positive vibe throughout the place. We hope Colby will go to camp to next year, you have to be 7. Enjoy the pictures and we hope EVERYONE had a wonderful Mother’s Day. Take care.
We had a wonderful weekend and can not say enough thanks to Hole in the Wall. I have attached some pictures and I can take you through them. Our camera battery died right at the Mother’s day breakfast and for some reason the pictures are out of order. I thought I was more digital inclined, but I guess not.
The first picture is coming into camp. The white building on the right is the administration building. We stopped their first and were greeted by Beth. Beth was our ‘Family Pal’ for the weekend and specifically there to take care of Tom for us. She was awesome and so good with Tom. He took right to her. It was kind of different to have someone carry your baby around while you had time to run after the boys and just relax. We also met Eric, another ‘Family Pal’ for us. He was great with the boys and Colby really took to him. The big building is the dining Hall. Greg and I can both say the food was great. Even though you have a camp style feel to the whole place, the food tasted homemade. The next pictures are of Sunday morning, Mother’s Day. The councilors decorated the dining hall and all the kids gave their moms presents. We sang songs and all the Mother’s received roses. This was definitely one of the best Mother’s Day I have ever had, especially with Tom this year. J
Let’s back up to Friday night. We had dinner and then headed over to the bon fire. The gang introduced themselves and Bruce kicked off the night with flame throwing. You can see Colby enjoyed the Smores. (Eric is behind them) We stayed in LuLu’s Lodge. It had the ski lodge feel but very clean and warm feeling. We had two rooms (2 bunks in each) with a joining bathroom/shower. You can see the boys getting ready for bed. On Saturday morning Beth was waiting for us in the Lounge area of the Lodge. She was ready to take the boys to the gym before breakfast. The gym was huge and a great place for all the kids to hang out. Saturday they had a bunch of activities for the families to do. We headed over to the boat dock for some fishing and you can see Colby caught a fish, although he refused to ‘kiss the fish’. We stopped in at the huge tree house and then the boys went to woodworking and each made an Army tank. After lunch Greg and I had time to ourselves. Beth and Eric played with the boys back at the lodge while Greg and I walked around the lake. We really enjoyed the time to ourselves and catching up with each other. After rest time we headed over to the rock climbing wall. We could not convince Colby to try, but they both decided to be spotters for us. The zip line was not working, so Greg and I repelled down the wall. The camp had stage night after dinner. The kids were so cute and most of them, not shy at all. Colby eventually got up and played the drums for the crowd. Sunday we were up bright and early and of course Beth was waiting for us. She took the boys (in the limo as they call it) to the gym, while Greg and I sadly packed up. After breakfast we headed back down to the boat dock for more fishing. And wouldn’t you know it, Colby caught the first fish of the day. He was so excited. The we headed over to Archery. The boys really loved it and I think Greg is getting some ideas for home. We ended the day after lunch and thanking our family pals.
We (I am sure greg agrees) can not put into words how wonderful this place was. The staff really made you feel at home and such a positive vibe throughout the place. We hope Colby will go to camp to next year, you have to be 7. Enjoy the pictures and we hope EVERYONE had a wonderful Mother’s Day. Take care.
Tuesday, May 5, 2009
New Clinic opens early due to H1N1
Hello All,
Nick has received another shot yesterday, so we are down to 8 left. We were surprised when we showed up at clinic and the doors were locked. The clinic had been preparing to move this Thursday, but due to the "swine flu" (H1N1) they moved last Thursday. It was a bit scary when we arrived. I parked in the garage which leads through Rhode Island Hospitals emergency. There were a lot of people in there wearing masks and coughing up a storm. I don't think I ever got through there as fast as I did yesterday. We have Nick wear a mask when we travel through the hospital, but we are not fooled to think that protects everything. Anyway, the new Clinic is much larger than the old. Obviously, it is very clean. That being said, I know I will miss the front room of the old clinic as it seemed to be our personal waiting room. Nick was in great spirits yesterday until the shot. He then just wanted to go home....Imagine that. I spoke with Donna from the tomorrow fund and she stated that the stroll raised $85k for the fund. This is down $20k from last year but more than they had expected in this economy. This weekend we are lucky enough to be invited to the Hole in the Wall Gang Camp. I know that Karen and I are extremely excited about being able to enjoy the weekend with the family in such an incredible environment. I could try and explain the camp, but maybe we could do a better job next week after we experience it. We will give the full rundown next week.
Thank you to all and take care.
Greg
Nick has received another shot yesterday, so we are down to 8 left. We were surprised when we showed up at clinic and the doors were locked. The clinic had been preparing to move this Thursday, but due to the "swine flu" (H1N1) they moved last Thursday. It was a bit scary when we arrived. I parked in the garage which leads through Rhode Island Hospitals emergency. There were a lot of people in there wearing masks and coughing up a storm. I don't think I ever got through there as fast as I did yesterday. We have Nick wear a mask when we travel through the hospital, but we are not fooled to think that protects everything. Anyway, the new Clinic is much larger than the old. Obviously, it is very clean. That being said, I know I will miss the front room of the old clinic as it seemed to be our personal waiting room. Nick was in great spirits yesterday until the shot. He then just wanted to go home....Imagine that. I spoke with Donna from the tomorrow fund and she stated that the stroll raised $85k for the fund. This is down $20k from last year but more than they had expected in this economy. This weekend we are lucky enough to be invited to the Hole in the Wall Gang Camp. I know that Karen and I are extremely excited about being able to enjoy the weekend with the family in such an incredible environment. I could try and explain the camp, but maybe we could do a better job next week after we experience it. We will give the full rundown next week.
Thank you to all and take care.
Greg
Tuesday, April 28, 2009
The Tomorrow Fund Stroll for Nick
Hi Everyone,
We embarked on our first Tomorrow Fund Stroll for Nick and his clinic. The stroll is a fund raiser event for his clinic that 100% of the proceeds go to The Tomorrow Fund. (There website is listed on our blog). We decided it would be fun to make T-shirts and walk as a family. Of course we were called The Nick Shannon Rocks team and there was a 4-wheeler on the back of the T-shirt. Thank you to Amy for taking of this. (We will vote on the color next time). We had a beautiful 80 degree day and kids all had fun. I sent in a picture of Nick and along the stroll they post all the patients in his clinic. There are even kids posted that are cured and took part in the event. It was very inspiring to see one of the first nurses we met when Nick was first diagnosed. Her name is Tracy and her son was diagnosed with ALL about 6 years ago at Hasbro. Tracy decided to go into nursing (oncology) at that time and now today her son is cured and she is still a very active member of the fund. She even had his picture at the stroll and I was able to meet him. I can personally say it was great to get out and participate in an event that I know has made a difference for many families. We want to thank all the family and friends who came out and donated to the fund. Nick was all bundled up and in the stroller most of the time. We just finished the steroids and he had a pretty tough weekend. He woke up Sunday morning craving a McDonald's happy meal. As we all know, McD's does not serve lunch until 11am, so he decided the best way to alleviate all of his energy was to cry for a couple of hours. He calmed down during the stroll but Greg made sure to pick up lunch on the way home. He spent most of the day on the couch. (This should have been a hint to me before taking him to clinic).
Clinic on Monday came with a little surprise. The nurse accessed his port, drew blood and then we decided to take it out, thinking his counts would be fine. It turned out his red blood cells were very low and he needed a transfusion. When your red blood cells are very low you feel very tired and have no energy. You usually look very pale, but Nick did not look that way. He still received his shot and now we are in the single digits.... 9 to go. We ended up re-accessing his port for the transfusion. Nick was okay with everything until he decided the blood was taking too long and he was ready to go home. He is doing much today and is even telling us jokes.
We know Nick does not understand how many people are praying for him and sending him well wishes, but we tell him all the time how proud we are him. I will try to post pictures next of the stroll.
We embarked on our first Tomorrow Fund Stroll for Nick and his clinic. The stroll is a fund raiser event for his clinic that 100% of the proceeds go to The Tomorrow Fund. (There website is listed on our blog). We decided it would be fun to make T-shirts and walk as a family. Of course we were called The Nick Shannon Rocks team and there was a 4-wheeler on the back of the T-shirt. Thank you to Amy for taking of this. (We will vote on the color next time). We had a beautiful 80 degree day and kids all had fun. I sent in a picture of Nick and along the stroll they post all the patients in his clinic. There are even kids posted that are cured and took part in the event. It was very inspiring to see one of the first nurses we met when Nick was first diagnosed. Her name is Tracy and her son was diagnosed with ALL about 6 years ago at Hasbro. Tracy decided to go into nursing (oncology) at that time and now today her son is cured and she is still a very active member of the fund. She even had his picture at the stroll and I was able to meet him. I can personally say it was great to get out and participate in an event that I know has made a difference for many families. We want to thank all the family and friends who came out and donated to the fund. Nick was all bundled up and in the stroller most of the time. We just finished the steroids and he had a pretty tough weekend. He woke up Sunday morning craving a McDonald's happy meal. As we all know, McD's does not serve lunch until 11am, so he decided the best way to alleviate all of his energy was to cry for a couple of hours. He calmed down during the stroll but Greg made sure to pick up lunch on the way home. He spent most of the day on the couch. (This should have been a hint to me before taking him to clinic).
Clinic on Monday came with a little surprise. The nurse accessed his port, drew blood and then we decided to take it out, thinking his counts would be fine. It turned out his red blood cells were very low and he needed a transfusion. When your red blood cells are very low you feel very tired and have no energy. You usually look very pale, but Nick did not look that way. He still received his shot and now we are in the single digits.... 9 to go. We ended up re-accessing his port for the transfusion. Nick was okay with everything until he decided the blood was taking too long and he was ready to go home. He is doing much today and is even telling us jokes.
We know Nick does not understand how many people are praying for him and sending him well wishes, but we tell him all the time how proud we are him. I will try to post pictures next of the stroll.
Wednesday, April 22, 2009
One small milestone passed
Hello,
First with the good news. Nick has no blasts in his spinal fluid!! Karen told me the news earlier today and now I am walking on the clouds. Every day these baby steps are really helping our outlook and hope. We did find out some sad news (for us). Nick's good buddy Sean and family are moving back to San Diego. We were just getting to know them and we will be sad to see them go. We went to their house in Newport on Sunday and it was a beautiful day. The three boys Colby,Nick and Sean all got to play down at the beach for a while and had a blast. Colby really understands the greatness of summer. When it was time to leave he said, "No, I love the way the sand feels on my feet." It really made me think how close it is and how much I love summer. The Love family came over for a while on Monday. It was great because it was Joeys birthday and the our boys were happy to be able to share it with him. We have a large event coming this Sunday as the Tomorrow Fund (Nick's Oncology Support at Hasbro) is holding their annual stroll. We have a large contingent of family and some friends going. Amy had shirts made up for everyone so that we can all support Nick in a united way. The event is held to make money for the Tomorrow Fund and we hope our contributions will help these great people continue their great work. After the stroll all are coming back to our house to wish Colby and Nick a happy Birthday so we are praying for good weather. That is all for now. It is nice to be able to share good news. We thank you all for your prayers. God Bless!
Greg
First with the good news. Nick has no blasts in his spinal fluid!! Karen told me the news earlier today and now I am walking on the clouds. Every day these baby steps are really helping our outlook and hope. We did find out some sad news (for us). Nick's good buddy Sean and family are moving back to San Diego. We were just getting to know them and we will be sad to see them go. We went to their house in Newport on Sunday and it was a beautiful day. The three boys Colby,Nick and Sean all got to play down at the beach for a while and had a blast. Colby really understands the greatness of summer. When it was time to leave he said, "No, I love the way the sand feels on my feet." It really made me think how close it is and how much I love summer. The Love family came over for a while on Monday. It was great because it was Joeys birthday and the our boys were happy to be able to share it with him. We have a large event coming this Sunday as the Tomorrow Fund (Nick's Oncology Support at Hasbro) is holding their annual stroll. We have a large contingent of family and some friends going. Amy had shirts made up for everyone so that we can all support Nick in a united way. The event is held to make money for the Tomorrow Fund and we hope our contributions will help these great people continue their great work. After the stroll all are coming back to our house to wish Colby and Nick a happy Birthday so we are praying for good weather. That is all for now. It is nice to be able to share good news. We thank you all for your prayers. God Bless!
Greg
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