Nick is doing well. He handled his steroids last week real well. How well you ask? He handled it so well that he climbed a 40 foot rock wall and did a 900 foot zip line... twice!!! It is amazing to see how strong he is. I climbed the rock wall after he did and when I got to the top he was there to help me up. This all occcured at Hole in the Wall. Yet another amazing weekend with the most amazing of people. I actually did not want to go but felt that I should go for Karen and the kids. I am so glad I did. It is the type of place that rights you. It makes you realize how special life is, how you can not take a momet for granted and the people at hole in the wall don't take it for granted. They help the kids to learn how to enjoy the moment no matter how bad they feel. The kids all just enjoy the place and it goes by so fast. The other real interesting thing that happened at hole in the wall is that we stayed in a cabin for the first time which was awesome. The kids loved it and that is good since that is where they will stay when they go to camp there by themselves.
Nick's counts for the week
WBC 6.6
HGB 11.7
PLTS 407 (H)
APC 4000
Karen is traveling the next few days so it is all boys all the time at our house. I know that I already miss her and I am pretty sure the boys miss her too. Nick was feeling it last night before she left and demanded to sleep in our bed. It is funny how they show their worries in different ways.
Back to work now. Have a great week.
Greg
Wednesday, October 6, 2010
Monday, September 27, 2010
3 to go
This week is our 3rd to last (cycle) treatment. I can not believe it and October is already here. Nick is great and really looking forward to going away. He started his steroids this week and is 1/7 so far sleeping in our bed... Hoping it will not last all week. Colby misses him when he is not sleeping in his bed, since they share a room now.
I have attached 2 pictures of Nick. The second one was taken in 5/09 at Hole in the Wall and first one was taken this past month at clinic. I think one of the hardest parts about treatment is the changes we see in Nick. I have a daycare picture of him on the day he was diagnosised and to see the different changes his body has gone through over the past 2 years is amazing. He gained a lot of weight due to the steroids, which contributed to some of his pain, he lost hair, grew it back and lost it again last Christmas. Now it is back again and he is starting to feel stronger in his legs. He is not running as fast as his friends but he tries. I truly believe no matter how many changes Nick goes through, it will never change his personality and who he is. He always gives us his great smile and keeps fighting.
Clinic was busy on Monday and just about all of my 'Monday group moms' where there. The kids had fun running around and playing together. His counts were good:
WBC: 7.4
RBC: 11.3
APC: 6,300 - high but the doctor thought he could be fighting a virus, which we believe he is. He has a little cough going right now, so we will keep a close eye on him for fevers.
Wednesday, September 22, 2010
Between the last 1.5 weeks all of us in the family, with the exception of Nick was sick and with a fever. We could not believe this virus swept through our family but missed Nick. It is just the little things that excite us.
Nothing really new to report this week. I took Nick to clinic on Monday. He is feeling great and the doctor reminded us of the 'countdown' and asked how I was feeling about it. I think it was her way of preparing us for what is a head. Many parents have told us of the emotions/emptiness/excitement that goes along with end of treatment for your child. I am so lucky to have my clinic friends that I can reach out too. I told her my countdown is for Disney (from Make a Wish) and I have not thought about anything past this event. The boys are excited and they received a countdown calendar that they cross the days off. Nick is having fun at baseball and learning all the basics. Colby has decided to not play football this year but hopes to get back into it next year. We are going to a Cub Scouts meeting this week.... something Colby has been asking to do since last year. Nick will start another cycle next week, so we are looking forward to the annual Fall party at our friends house. Take care. Karen
counts:
WBC: 4.4
RBC: 10.1
APC: 2,800
Nothing really new to report this week. I took Nick to clinic on Monday. He is feeling great and the doctor reminded us of the 'countdown' and asked how I was feeling about it. I think it was her way of preparing us for what is a head. Many parents have told us of the emotions/emptiness/excitement that goes along with end of treatment for your child. I am so lucky to have my clinic friends that I can reach out too. I told her my countdown is for Disney (from Make a Wish) and I have not thought about anything past this event. The boys are excited and they received a countdown calendar that they cross the days off. Nick is having fun at baseball and learning all the basics. Colby has decided to not play football this year but hopes to get back into it next year. We are going to a Cub Scouts meeting this week.... something Colby has been asking to do since last year. Nick will start another cycle next week, so we are looking forward to the annual Fall party at our friends house. Take care. Karen
counts:
WBC: 4.4
RBC: 10.1
APC: 2,800
Thursday, September 16, 2010
Wow, No Pain! Ambassador Day for Nick
This week has been much better than last, which is why we try to look forward and take things week by week. Colby will try again this weekend at football and we hope to see him continue to shack his fear. He does not want to quit and we support his decision. He did end up with a fever on Tues. night and into Wed. I am thinking he caught a strand of it from Tom’s virus last week.
Nick ended steroids on Tuesday morning and we thought for sure he would be in pain by the afternoon. To our delight he has not complained about pain at all this week. His appetite was there but I think he was to busy to think about any pain. In the past he would lie on the couch and watch TV and not feeling up to do anything. He has been busy with school and baseball practice this week and just being active. He is back to his smiling self again and we love to see it.
Today was a special day for Nicholas. He was awarded a medal from the Governor of RI and represented the town of Bellingham as an Ambassador. The Governor is very supportive of the Tomorrow Fund and has been giving away awards to the kids for the past 8 years.
The head of the Tomorrow Fund, Dr. Swhaltz gave us a great analogy today. She talked about how Hurricanes are always forming out to sea and we are made aware of them through the news. We go out and buy groceries, milk, etc.. and get ready for the storm. Sometimes the storm hits big, sometimes it blows over and other times you are in the eye of the storm. All the families and patients who have cancer do not have the chance to be ready for the storm. You are told your child has cancer and the next day your world is turned upside down. There is no notice but we as parents have to ride the storm and do the best we can for our children. Kids are resilient and the parents are there to fight for their child.
As I mentioned before, this month is National Childhood Cancer Awareness Month. It is through donations that the Tomorrow Fund exists to help families in financial need and support. They receive 50-70 newly diagnosed cases of childhood cancer a year. They unfortunately expect this but continue to look to the best possible treatment available in the USA. Here are some facts:
• Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
• Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
• The cause of most childhood cancers are unknown and at present, cannot be prevented.
•
• One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
• On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
• While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
• Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
• Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
• Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
Greg took Nick on Monday to clinic and his were good. They have decided to increase his Methotrexate dose. He is still not at 100% dosage for his protocol but they keep increasing until we reach it. In the past when they increased the dose he would have a fever or be neutropenic so then it would be lowered again. It is a balancing act on Nick's body to see how much he can tolerate. Some kids can tolerate the full dose and other's can not. Nick seems to tolerate the full dose for a couple of weeks and then his body gets tired, fever starts and back to the ER. We hoping this will not happen this time around. Karen
Counts:
WBC: 7.2
RBC: 11.3
APC: 6,300
Nick ended steroids on Tuesday morning and we thought for sure he would be in pain by the afternoon. To our delight he has not complained about pain at all this week. His appetite was there but I think he was to busy to think about any pain. In the past he would lie on the couch and watch TV and not feeling up to do anything. He has been busy with school and baseball practice this week and just being active. He is back to his smiling self again and we love to see it.
Today was a special day for Nicholas. He was awarded a medal from the Governor of RI and represented the town of Bellingham as an Ambassador. The Governor is very supportive of the Tomorrow Fund and has been giving away awards to the kids for the past 8 years.
The head of the Tomorrow Fund, Dr. Swhaltz gave us a great analogy today. She talked about how Hurricanes are always forming out to sea and we are made aware of them through the news. We go out and buy groceries, milk, etc.. and get ready for the storm. Sometimes the storm hits big, sometimes it blows over and other times you are in the eye of the storm. All the families and patients who have cancer do not have the chance to be ready for the storm. You are told your child has cancer and the next day your world is turned upside down. There is no notice but we as parents have to ride the storm and do the best we can for our children. Kids are resilient and the parents are there to fight for their child.
As I mentioned before, this month is National Childhood Cancer Awareness Month. It is through donations that the Tomorrow Fund exists to help families in financial need and support. They receive 50-70 newly diagnosed cases of childhood cancer a year. They unfortunately expect this but continue to look to the best possible treatment available in the USA. Here are some facts:
• Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
• Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
• The cause of most childhood cancers are unknown and at present, cannot be prevented.
•
• One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
• On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
• While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
• Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
• Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
• Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
Greg took Nick on Monday to clinic and his were good. They have decided to increase his Methotrexate dose. He is still not at 100% dosage for his protocol but they keep increasing until we reach it. In the past when they increased the dose he would have a fever or be neutropenic so then it would be lowered again. It is a balancing act on Nick's body to see how much he can tolerate. Some kids can tolerate the full dose and other's can not. Nick seems to tolerate the full dose for a couple of weeks and then his body gets tired, fever starts and back to the ER. We hoping this will not happen this time around. Karen
Counts:
WBC: 7.2
RBC: 11.3
APC: 6,300
Sunday, September 12, 2010
Challenging week/weekend
Hello,
We have had an interesting few days. There have been challenges, melt downs and smiles for the past few days. I am not sure where to start this blog but I will back it up to Friday morning. Nick is on steroids and had a tough week last week for school. He was really moody at nighttime and ended up sleeping in our bed during the nights until sat. Friday morning was really hard for him. He did not feel like going to school and was asking to be picked up after lunch to come home. He is full day now and the teacher is wonderful with him and lets him rest on the mat when needed. I explained this to him on Friday morning but he still cried at the bus stop and went to school. I called the school around noon to check on him and they he had just come in from recess and was ready (his quotes) "To walk home and see his mom." I picked him up and he was fine and happy once he got home. Saturday was no different with his mood swings. He was very excited for the sleepover at Papa Boston's house that night but kept asking all morning when he could go. Nick was upset with every little going on in the house and Colby was making him upset. (eventhough Nick was bugging him to) He decided to not attend the birthday party the boys were invited to and stayed home. He play his first baseball game in the afternoon but was not really into it. Again he asked to go home but we convinced him to stay and be with the team. Once Papa showed up Nick was all smiles and had a great time being away for the night. Papa said he was good but still has those moments when he really wants something and can get upset quickly. We believe these steroids just make him so moody that once he something stuck in his mind he wants and does not get it... he changes and the meltdown comes. His last dose of steroids (for this cycle) is tomorrow morning. Hopefully he will be okay at school and no pain. Greg will take him to clinic in the afternoon.
Colby has been playing football for almost 6 weeks now. He has had his ups and downs with the sport but continues to tell us how much he likes it. The challenge we have is during game time. As soon as he sees the other team he gets scared of them. The coaches really try hard to make him feel comfortable and tell him everything is going to be okay. Today was very hard because he turns his emotion into crying and not wanting to play. Greg and I are not sure where to go with his behavior because you practice to play the game. Greg and I want the best for Colby and to overcome this fear because we believe the fear is generated from football alone but other things. Emotions are running a little high tonight but felt like I had to write it all down. I am traveling on business the next 2 days and we have laid out a couple of things for Colby and Nick to do while we are gone.
I have to include Tom in the blog to, he was a little cranky this weekend to. He was sick with a rash and a little fussy. As soon as we gave him tylenol he was back to himself and feeling much better today. He continues to amaze us with all his sentences (not just words), his smile, laughter and giving us hugs.
Although I feel like I am complaining in this blog, we move forward and make adjustments.... a learning experience that will challenge us to the end. That is why we have kids right??
We have had an interesting few days. There have been challenges, melt downs and smiles for the past few days. I am not sure where to start this blog but I will back it up to Friday morning. Nick is on steroids and had a tough week last week for school. He was really moody at nighttime and ended up sleeping in our bed during the nights until sat. Friday morning was really hard for him. He did not feel like going to school and was asking to be picked up after lunch to come home. He is full day now and the teacher is wonderful with him and lets him rest on the mat when needed. I explained this to him on Friday morning but he still cried at the bus stop and went to school. I called the school around noon to check on him and they he had just come in from recess and was ready (his quotes) "To walk home and see his mom." I picked him up and he was fine and happy once he got home. Saturday was no different with his mood swings. He was very excited for the sleepover at Papa Boston's house that night but kept asking all morning when he could go. Nick was upset with every little going on in the house and Colby was making him upset. (eventhough Nick was bugging him to) He decided to not attend the birthday party the boys were invited to and stayed home. He play his first baseball game in the afternoon but was not really into it. Again he asked to go home but we convinced him to stay and be with the team. Once Papa showed up Nick was all smiles and had a great time being away for the night. Papa said he was good but still has those moments when he really wants something and can get upset quickly. We believe these steroids just make him so moody that once he something stuck in his mind he wants and does not get it... he changes and the meltdown comes. His last dose of steroids (for this cycle) is tomorrow morning. Hopefully he will be okay at school and no pain. Greg will take him to clinic in the afternoon.
Colby has been playing football for almost 6 weeks now. He has had his ups and downs with the sport but continues to tell us how much he likes it. The challenge we have is during game time. As soon as he sees the other team he gets scared of them. The coaches really try hard to make him feel comfortable and tell him everything is going to be okay. Today was very hard because he turns his emotion into crying and not wanting to play. Greg and I are not sure where to go with his behavior because you practice to play the game. Greg and I want the best for Colby and to overcome this fear because we believe the fear is generated from football alone but other things. Emotions are running a little high tonight but felt like I had to write it all down. I am traveling on business the next 2 days and we have laid out a couple of things for Colby and Nick to do while we are gone.
I have to include Tom in the blog to, he was a little cranky this weekend to. He was sick with a rash and a little fussy. As soon as we gave him tylenol he was back to himself and feeling much better today. He continues to amaze us with all his sentences (not just words), his smile, laughter and giving us hugs.
Although I feel like I am complaining in this blog, we move forward and make adjustments.... a learning experience that will challenge us to the end. That is why we have kids right??
Thursday, September 9, 2010
Yesterday was Nick's last spinal for his protocal of ALL T-Cell. I have mentioned before how much he has gone through and what a great child he is. He was great yesterday during clinic and only asked a few times for food. It was a long day for us, Nick was up at 6am and he did not have his procedure until noon. He could not eat before his procedure so basically the last time he ate was 6pm the night before. The procedure went smoothly and the fluid looked clear dripping out of his spine. We do not have pathology reports yet, but we remain optismistic everything is ok. When everything was done, Nick was snoozing and Greg & I just looked at each other.... We both know,it feels great on one hand to think no more chemo will be injected into his spine but then you think.... is that okay? Could he relaspe? Nick knows he is almost at the end of his treatment but I try to be careful in telling him he will 'never' have this done again. Greg & I are just not there yet.
He woke up quickly after the procedure and felt a little dizzy, but still tried to play his DS right away. We promised him lunch on the way home and we stopped at a small Italian restaurant with patio seating. Luckily Nick chose to sit outside and enjoy the warm weather. He did mention he felt like throwing up and then he was okay. His food came and after a few bites he did throw up... good thing we were outside. After that he said he felt better and continued to eat half his meal. This has happened to us before and I just think it is a combination of the chemo, his sleepy medicine and the fact he likes to get up right away after the procedure and leave.
He is back in school today and looking forward to seeing his friends. It will be interesting if he tells them about his day yesterday. His story usually goes like this: "I was not in school today because I had to get sleepy medicine so the doctor can stick a needle in my back. I know this because I always find a band aid on my back when I wake up." Another round of steroids start this week along with 6MP. We hope to enjoy this weekend with the great weather and Nick sleeping over at Papa Boston's house. Karen
Tuesday, September 7, 2010
Great Weekend and It is that time again
Hello All,
We have a wonderful long weekend with the family and friends. Colby had his first football game and Nick will start baseball this week. We enjoyed having some friends over on Saturday night, 4-wheeling, and smores by the bonfire. Monday we took advantage of the sunny weather and headed to the beach for the day. The waves were great and Nick and Colby ditched their boogy boards for body surfing. My sister and he kids joined us and we had a fun time.
Tomorrow Nick is scheduled for his spinal (lumbar puncture). He receives this procedure every 18 weeks and I can not believe how fast the last 18 wks have gone by. This is positive for us because we are moving further out to acheiving our goal of being off treatment. It will be a long day for us. We go to clinic to access his port, get his counts down. He will receive Vincristine through his port and steroids and Methotrexate through his spine. We go down to the PICU recovery floor and can watch the procedure. The doctor will also take a sample from his spine and send it off to pathology to check for any leukemia cells. We usually have the answers back that day but could be on Thursday. Nick is not a big fan of getting his 'sleepy' medicine and always wakes up right away. They like to have him lie down for 30minutes after the procedure is down but he is usually up and telling us it is time to leave 15 minutes after he is done. We'll take him to lunch and then home to rest for the day. Since this is a start of a cycle he will also start 5 days of steroids and 6MP at home. Hoping tomorrow goes okay.
I forget how easy it is talk about the day tomorrow. Nick has endured over 12 of these procedures in the past 2 years, while on chemo, taking steroids, through radiation treatments and he can still have a smile on his face after we leave the hospital. Greg and I will be anxious tonight and go through the motions with Nick tomorrow but the constant worry will be there until we actually have the tests back.
We have a wonderful long weekend with the family and friends. Colby had his first football game and Nick will start baseball this week. We enjoyed having some friends over on Saturday night, 4-wheeling, and smores by the bonfire. Monday we took advantage of the sunny weather and headed to the beach for the day. The waves were great and Nick and Colby ditched their boogy boards for body surfing. My sister and he kids joined us and we had a fun time.
Tomorrow Nick is scheduled for his spinal (lumbar puncture). He receives this procedure every 18 weeks and I can not believe how fast the last 18 wks have gone by. This is positive for us because we are moving further out to acheiving our goal of being off treatment. It will be a long day for us. We go to clinic to access his port, get his counts down. He will receive Vincristine through his port and steroids and Methotrexate through his spine. We go down to the PICU recovery floor and can watch the procedure. The doctor will also take a sample from his spine and send it off to pathology to check for any leukemia cells. We usually have the answers back that day but could be on Thursday. Nick is not a big fan of getting his 'sleepy' medicine and always wakes up right away. They like to have him lie down for 30minutes after the procedure is down but he is usually up and telling us it is time to leave 15 minutes after he is done. We'll take him to lunch and then home to rest for the day. Since this is a start of a cycle he will also start 5 days of steroids and 6MP at home. Hoping tomorrow goes okay.
I forget how easy it is talk about the day tomorrow. Nick has endured over 12 of these procedures in the past 2 years, while on chemo, taking steroids, through radiation treatments and he can still have a smile on his face after we leave the hospital. Greg and I will be anxious tonight and go through the motions with Nick tomorrow but the constant worry will be there until we actually have the tests back.
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