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
Thursday, August 13, 2009
Monday, August 10, 2009
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
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
Wednesday, July 29, 2009
Quick Update before We Take a Break
Hi All,
I just wanted to let you know that Nick's red blood cell transfusion went fine. He went with Grammy and according to her 'Nick called all the shots'. He told her what to do and what games he wanted to play at clinic. His only complaint was that the transfusion took too long. If that is the only complaint, we'll take it. Grammy bought him a lemonade on the way out. Nick will finish his class today and the 4 of us (Tom will be at daycare) will head into Boston tomorrow for a Red Sox's game. We are very excited about the game since this will be the boys first time to Fenway. As an added bonus we will be going on the field, prior to the game, to watch batting practice. Greg is soooo excited about the experience and the boys think they can play to. This is a new adventure for us and are looking forward to a great game.... Go SOX! Nick has reminded me that he needs a souvenir before we leave the game. It was so funny because Colby asked Nick 'what is a souvenir'. How many 5 yr olds would have to explain to a 6 yr old what a souvenir is? We are crossing our fingers for NO rain tomorrow.
As I mentioned before we will be going to Camp Sunshine next week. The camp starts on Sunday, but since Nick needs chemo on Monday, we will go to clinic first and then drive up after. The boys are looking forward to a 'vacation' in Maine. This weekend we will be busy for us to. The Tomorrow Fund is having a family picnic on Sunday in Warwick, RI. We will be going to the picnic and hopefully seeing some of our friends from clinic. It still amazes me how strong the parents we have met are. These children have cancer or are in remission and yet they let nothing stop them when it comes to playing. They definitely give us strength and help us through the day.
We hope everyone has a great week, I will not be posting another blog until I get back from vacation... I need a little break and we hope to have lots of pictures to share with everyone when we get back. Take Care... Signing off! The Shannon Family
I just wanted to let you know that Nick's red blood cell transfusion went fine. He went with Grammy and according to her 'Nick called all the shots'. He told her what to do and what games he wanted to play at clinic. His only complaint was that the transfusion took too long. If that is the only complaint, we'll take it. Grammy bought him a lemonade on the way out. Nick will finish his class today and the 4 of us (Tom will be at daycare) will head into Boston tomorrow for a Red Sox's game. We are very excited about the game since this will be the boys first time to Fenway. As an added bonus we will be going on the field, prior to the game, to watch batting practice. Greg is soooo excited about the experience and the boys think they can play to. This is a new adventure for us and are looking forward to a great game.... Go SOX! Nick has reminded me that he needs a souvenir before we leave the game. It was so funny because Colby asked Nick 'what is a souvenir'. How many 5 yr olds would have to explain to a 6 yr old what a souvenir is? We are crossing our fingers for NO rain tomorrow.
As I mentioned before we will be going to Camp Sunshine next week. The camp starts on Sunday, but since Nick needs chemo on Monday, we will go to clinic first and then drive up after. The boys are looking forward to a 'vacation' in Maine. This weekend we will be busy for us to. The Tomorrow Fund is having a family picnic on Sunday in Warwick, RI. We will be going to the picnic and hopefully seeing some of our friends from clinic. It still amazes me how strong the parents we have met are. These children have cancer or are in remission and yet they let nothing stop them when it comes to playing. They definitely give us strength and help us through the day.
We hope everyone has a great week, I will not be posting another blog until I get back from vacation... I need a little break and we hope to have lots of pictures to share with everyone when we get back. Take Care... Signing off! The Shannon Family
Tuesday, July 28, 2009
Uneventful week turned into ER visits
Hello,
To our surprise Nick started spiking a fever Thursday night and then his temp. went back down Friday morning and spiked again Friday late afternoon. Greg took him to the ER and they accessed his port, drew blood and gave him some antibiotics immediately. We had a feeling he might be fighting a little virus because of his cough and a little runny nose. Also, Tom (our 1 yr old) had caught a virus as well and was fighting it off. Nick's ANC number: Remember this is the number that shows his 'immature' white blood cells (which can NOT fight off virus's) to his 'mature' white cells = 975. Anything below 500 is considered neutropenic and he would have been admitted. Waiting for that number is always scary because we really do not ever know how his body is fighting and if it has enough 'ammunition' to fight off a virus. His red blood cells were at 7.4, which is borderline a transfusion, but the doctors decided to send him home and bring him back on Saturday for more blood work and another round of antibiotics. Nick is such a trouper and was okay with everything. I think he really liked the idea that he did not have to spend the night and agreed to come back the next day.
Greg brought him again on Saturday afternoon. As I have stated before, you really have to be on your toes in the ER. The nurse tried to access Nick's port the first time and used the wrong needle.... Greg had to point that out to her. The second time she could not get it, so Greg requested a nurse from the 5th floor to come down and access it correctly. I heard Nick was a brave boy throughout, but he was left with some bruising on the skin of his port. His counts came back about the same and the doctors sent Nick home again. This week I have Nick signed up for a Ready-Set-Go Kindergarten class in the morning w/his friend Michael. I took him there Monday morning and picked him up at lunch time and headed down to clinic w/Colby. His red blood cells were still low and we are heading back today for a transfusion. The process can be a little frustrating. I think the clinic doctors had planned on a transfusion on Monday, but we did not have enough time (for clinic hours) to give him one. The ER doctors never mentioned it to Greg on Saturday, so Nick gets his port accessed again today. Grammy is going to take him today... it will the first time Greg or I have not taken him. He said he wanted to go w/Grammy today.... what a difference from just 9 months ago. We'll let you know it goes.
take care, Karen
To our surprise Nick started spiking a fever Thursday night and then his temp. went back down Friday morning and spiked again Friday late afternoon. Greg took him to the ER and they accessed his port, drew blood and gave him some antibiotics immediately. We had a feeling he might be fighting a little virus because of his cough and a little runny nose. Also, Tom (our 1 yr old) had caught a virus as well and was fighting it off. Nick's ANC number: Remember this is the number that shows his 'immature' white blood cells (which can NOT fight off virus's) to his 'mature' white cells = 975. Anything below 500 is considered neutropenic and he would have been admitted. Waiting for that number is always scary because we really do not ever know how his body is fighting and if it has enough 'ammunition' to fight off a virus. His red blood cells were at 7.4, which is borderline a transfusion, but the doctors decided to send him home and bring him back on Saturday for more blood work and another round of antibiotics. Nick is such a trouper and was okay with everything. I think he really liked the idea that he did not have to spend the night and agreed to come back the next day.
Greg brought him again on Saturday afternoon. As I have stated before, you really have to be on your toes in the ER. The nurse tried to access Nick's port the first time and used the wrong needle.... Greg had to point that out to her. The second time she could not get it, so Greg requested a nurse from the 5th floor to come down and access it correctly. I heard Nick was a brave boy throughout, but he was left with some bruising on the skin of his port. His counts came back about the same and the doctors sent Nick home again. This week I have Nick signed up for a Ready-Set-Go Kindergarten class in the morning w/his friend Michael. I took him there Monday morning and picked him up at lunch time and headed down to clinic w/Colby. His red blood cells were still low and we are heading back today for a transfusion. The process can be a little frustrating. I think the clinic doctors had planned on a transfusion on Monday, but we did not have enough time (for clinic hours) to give him one. The ER doctors never mentioned it to Greg on Saturday, so Nick gets his port accessed again today. Grammy is going to take him today... it will the first time Greg or I have not taken him. He said he wanted to go w/Grammy today.... what a difference from just 9 months ago. We'll let you know it goes.
take care, Karen
Wednesday, July 22, 2009
Uneventful Week
Hi Everyone,
I know I owe everyone a post. Things have been uneventful for us, which is good. Nick and Colby went to clinic on Monday for Nick's IV Methotrexate. His counts were very good, despite this cough he has. The cough seems to come and go, but the doctor said his lungs sound good, so I guess there is no need to worry right now.
Our only big news is that we are going to Camp Sunshine (Maine) in two weeks. A while back I mentioned this camp in a blog and we originally had plans to go in February, but had to cancel because Nick was not feeling well then. Camp Sunshine is a camp for children with life-threatening illnesses and their families. The camp is non-profit and run through volunteers and sponsor donations http://www.campsunshine.org/. We will leave on Monday, Aug. 3, after Nick's clinic visit. We are really looking forward to a family getaway and some time to relax and regroup as a family.
On a side note, we ask that you continue to pray for all the kids that are battling cancer. I have met many friends and follow various websites like ours. The journey of these kids can lead to many different paths and some to earning their 'angel wings'. There are two very special boys out there who fouhgt like crazy and both past away this past Saturday..... we pray for Kyle (www.caringbridge.org/co/kylel) and Aidan and their families. Aidan is a 5 yr. old boy who battled T-cell Leukemia for 1 month and passed away (July 17th) due to complications in the treatment. He was a fighter and our hearts go to his family. Take care.
I know I owe everyone a post. Things have been uneventful for us, which is good. Nick and Colby went to clinic on Monday for Nick's IV Methotrexate. His counts were very good, despite this cough he has. The cough seems to come and go, but the doctor said his lungs sound good, so I guess there is no need to worry right now.
Our only big news is that we are going to Camp Sunshine (Maine) in two weeks. A while back I mentioned this camp in a blog and we originally had plans to go in February, but had to cancel because Nick was not feeling well then. Camp Sunshine is a camp for children with life-threatening illnesses and their families. The camp is non-profit and run through volunteers and sponsor donations http://www.campsunshine.org/. We will leave on Monday, Aug. 3, after Nick's clinic visit. We are really looking forward to a family getaway and some time to relax and regroup as a family.
On a side note, we ask that you continue to pray for all the kids that are battling cancer. I have met many friends and follow various websites like ours. The journey of these kids can lead to many different paths and some to earning their 'angel wings'. There are two very special boys out there who fouhgt like crazy and both past away this past Saturday..... we pray for Kyle (www.caringbridge.org/co/kylel) and Aidan and their families. Aidan is a 5 yr. old boy who battled T-cell Leukemia for 1 month and passed away (July 17th) due to complications in the treatment. He was a fighter and our hearts go to his family. Take care.
Thursday, July 16, 2009
Steroids Reduced
Nick is on steroids this week. As previously mentioned, we started another round of chemo and steroids. His dose is only a third of what he usually received. We have seen little improvement this time around. He is very emotional and little things he can set him off. He had about 3 different melt downs yesterday and it is hard to comfort him and try to change his 'mood'. The good news so far is that he has NOT complained about pain yet and he said his legs were feeling better yesterday. We will know more as the weekend approaches. A lot of people have asked me about Nick's treatment and the chemo he is on. I found a website (imagine that, I have been reading about MANY other kids w/ALL), that had an attachment describing the different chemo drugs and the effects of each. If you scroll down this blog and on the right hand side you will see the link... chemo information. Nick has received the following chemo throughout his treatment:
Doxorubicin, Vincristine, 6-MP, Methotrexate, L-Asparaginase, Steroids & Cytarabine-in spine. I am not sure if I am missing any drugs, since the first month of Nick's treatment was a blur and I do not have the protocol during that time. These drugs are powerful and to think of all the stuff that has entered Nick's little body.... he is amazing.
I really needed to post today because we wanted to share with everyone that Colby lost his first tooth. This is a big deal for a 6 year old. The tooth fairy came last night and he received $5 for the first tooth. (very generous tooth fairy) Colby continues to go with the flow and will do whatever Nick wants him to do. The boys now have sleepovers almost every night. Nick is having bad dreams lately (or maybe it is just an excuse) and can not sleep by himself. It's okay by Mom and Dad. We enjoy seeing ALL the boys happy.
Doxorubicin, Vincristine, 6-MP, Methotrexate, L-Asparaginase, Steroids & Cytarabine-in spine. I am not sure if I am missing any drugs, since the first month of Nick's treatment was a blur and I do not have the protocol during that time. These drugs are powerful and to think of all the stuff that has entered Nick's little body.... he is amazing.
I really needed to post today because we wanted to share with everyone that Colby lost his first tooth. This is a big deal for a 6 year old. The tooth fairy came last night and he received $5 for the first tooth. (very generous tooth fairy) Colby continues to go with the flow and will do whatever Nick wants him to do. The boys now have sleepovers almost every night. Nick is having bad dreams lately (or maybe it is just an excuse) and can not sleep by himself. It's okay by Mom and Dad. We enjoy seeing ALL the boys happy.
Monday, July 13, 2009
We are Officially in Continuation Phase
Greg, Colby & Nick all went to clinic today. Nicholas is now in continuation phase. This is the last and longest phase of his treatment, at least 70 weeks. This phase is similar to the previous phase, in which we work off of 3 wk intervals. Day 1 (of 3 wks) Nick receives Vincristine and Methotrexate via port, he is on 5 days of steroids and 14 days of 6MP-chemo pill. He is not on any medicine days 15-21. Then we repeat the cycle above. The only big change (and we hope to see a change) is the steroids. The steroids are reduced down by 2/3. We are hoping this change will alleviate some of the pain, moodiness and cravings he has been experiencing throughout the last phase. He has been in physical therapy for the past few weeks and the times in the pool have helped him to. We are SLOWLY seeing improvement in his leg movement, but that is only when his counts are up. Nick definitely has a different outlook at clinic. He does not cry to have his port accessed and he holds still. (very important when you get a needle stuck in you). Nick knowing that he does not have to get a shot in his leg, has made things easier for all of us. Who could blame him for acting so unhappy all those weeks. He is fighter and that's why he pushes our buttons. Nick started camp last week. He goes 3 days a week, 1/2 day only. Colby goes to the same place, but 3 full days. They both loved it and had so much fun. It was actually weird for me to have Nick gone 3 days in a row. We have adjusted to him being home everyday (except the occasional visit to daycare every once in a while) since October. It is also a good feeling to know he is trying to get back into his 5 year old body and enjoy time with his friends. I know he needs, that because Mommy can be pretty boring while she works during the day. Take care everyone, Karen
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