Colby had a blast at camp. He made new friends and really enjoyed 'his' time there. When we dropped him off he told us that we could leave as soon as he was in his cabin. He made the most of his time and they even had a 'surprise' fire works night. Colby was excited to see us when we picked him up but I also think part of him wanted to stay. On our way back to the car, Nick & Colby started singing camp songs together and talking about each other's experiences, the counselors and friends they made. The moment for me was surreal in a way. We are so proud of them and having the opportunity for this experience. It is one they both will remember.
When we got home, Colby went and took a shower. When I checked on him he looked really upset. I asked him what was wrong and he said: "I miss my friends already. I wish I could see them again, I had so much fun." Another successful week.
For our final summer vacation we are heading out to Camp Sunshine tomorrow. The boys have been asking when we can go again and the only weekend available for us was Labor Day. I am looking forward to the trip and the kids enjoying their camp time. This weekend's theme at Camp Sunshine is 'Oncology Off-treatment program. I am looking forward to the group discussions and learning how other children are doing off treatment. My particular interest is in the side effects from chemo and radiation and wondering if kids are experiencing this.
I know I have said this before but we are truly blessed to have Nick off treatment and having the ability to be a normal kid. The 'C' word will always be part of our lives but Nick has conquered it so far and he keeps enjoying his life.
Nick's clinic on 8/18/11:
WBC: 10.4 -normal
RBC: 11.8 -normal
Plts: 340 - normal
ANC: 4,500 -great
The doctors say all the chemo is out of his body now. I have asked about re-immunizing him because we do not know for sure if the chemo has killed his immunizations. The doctor said they typically do not re-immunize because they do not know the facts about it.
-Karen
Thursday, September 1, 2011
Tuesday, August 9, 2011
Nick's Home from Hole in the Wall Gang Camp
Nick attended his first week ever of sleep over camp. He did great. Greg & I picked him up this morning. We were sent to the dining hall to get him and when we walked in Nick was dancing (w/one of his councilors) to the music. We both just watched him and he was still so happy. Once the song was over, I ran over and hugged him. Tears were, again, in my eyes and he was just smiling so brightly and hugging me tight. The councilors had so many positives things to say about Nick and I told them I was looking forward to hearing all about his week on the way home. In true Nick fashion, he did not dissappoint us. He talked the whole way home about camp. There were so many activities that he had opportunity to do this past week and most importantly, he made lots of friends at camp. He rode horses, swam, caught a bunch of fish, theatre, carnival night, woodshop and so much more. He told us funny incidents that happened during the week with the councilors and his friends.
Here is one of his stories: "I caught Lucy, no lips fish. See, the first person who caught Lucy,had the hook on her upper lip and her lip came out. the second person who caught it had the hook on the lower lip and it came out. I caught her on the cheek but you know, the lips will grow back on Lucy."
Another one: "The sad part of camp is once you stay in cabin 15 (the last one), you can no longer be a camper." Nick was in cabin 1 and he has 8 more years before that will happen. We explained to him that he could be an LIT (Leader in training) after that.
He also learned how to TP (yes, toilet paper) the cabins. He said he could throw the roll really good over the cabin. What 7 yr old knows how to do that these days? He kept saying "I can TP really good."
A week from Sunday we will be driving Colby to camp (siblings week) and Nick is already excited to go back and see his councilors. We know Colby will have a wonderful and exiting experience, just like Nick.
Here is one of his stories: "I caught Lucy, no lips fish. See, the first person who caught Lucy,had the hook on her upper lip and her lip came out. the second person who caught it had the hook on the lower lip and it came out. I caught her on the cheek but you know, the lips will grow back on Lucy."
Another one: "The sad part of camp is once you stay in cabin 15 (the last one), you can no longer be a camper." Nick was in cabin 1 and he has 8 more years before that will happen. We explained to him that he could be an LIT (Leader in training) after that.
He also learned how to TP (yes, toilet paper) the cabins. He said he could throw the roll really good over the cabin. What 7 yr old knows how to do that these days? He kept saying "I can TP really good."
A week from Sunday we will be driving Colby to camp (siblings week) and Nick is already excited to go back and see his councilors. We know Colby will have a wonderful and exiting experience, just like Nick.
Tuesday, July 26, 2011
We are Back
We are back from vacation and had a great time. The kids were great. We drove to North Carolina to see my sister, Christa and family. The kids really enjoyed spending time with their cousins, Justin, Luke and Kaitlyn. We went to the pool everyday and a couple of highs: Nick jumped off the high dive, Colby doing flips off the low dive and Tommy enjoying the trampoline everyday. The older boys enjoyed taking a ride on Uncle Mark's motorcycle. The kids woke up late everyday.
On Thursday we left and headed to Hershey park in PA for 2 nights. The first night was very adventorous for us. As we were leaving our room to go to dinner the boys were running down the hallway and took a quick right hand turn. My older son turned back and by accident pushed Tom into the corner of the wall. He ended up with a huge a gash on his forehead and to the ER we go. After 5 hours he ended up with 3 stitches inside and 5 on the outside. I think I have really lost my patience at the ER. Tom was bleeding and no one even came to look at him for over an hour. I believe it is just the thought of being there again. Greg took the boys to dinner and then took over 2nd shift so I could take Colby & Nick to Hershey Park for the nighttime premiere. Eventhough it was a set back for us, we still made the best of the trip on the next day. Nick's diagnosis has taught us so much and under the circumstances with Tom, Greg & I were very calm. The boys had so much fun at Hershey Park, even in the 103 degrees temperature. We ALL, as a family, rode a roller coaster together and many other rides.
8/3/2011:
We just dropped Nick off at Hole in the Wall Gang Camp for his first time at a sleepover camp. He was very excited today and definitely not patient waiting to go through the line and checking in with the doctor. Once he got to his cabin and met his roomies he was so happy. He gave us great big hugs and his smile told us everything would be just fine. I, of course, cried and luckily I had my sun glasses on so he would not see my tears. I think they were tears of happiness for him, knowing he is going to have fun but also missing him this week. Hole in the Wall is magical and Greg & I feel safe about nick spending the week there.
Quick Story:
I was out of town the past two days at a charity golf tournament for my work. The company we supported has the charity event every year and part of their donation goes to Hole in the Wall. So last night, at the dinner, after golfing, I was able to meet some of the top people at Hole in the Wall that make it all happen for these kids. Of course they remembered Nick from family weekends and were so excited to hear he was attending this week. You really feel part of their family. I will blog next week about his experience. I already packed a goody bag for him that I am mailing tomorrow and plan to mail a couple of letters to. I already miss the little guy so much......Karen
On Thursday we left and headed to Hershey park in PA for 2 nights. The first night was very adventorous for us. As we were leaving our room to go to dinner the boys were running down the hallway and took a quick right hand turn. My older son turned back and by accident pushed Tom into the corner of the wall. He ended up with a huge a gash on his forehead and to the ER we go. After 5 hours he ended up with 3 stitches inside and 5 on the outside. I think I have really lost my patience at the ER. Tom was bleeding and no one even came to look at him for over an hour. I believe it is just the thought of being there again. Greg took the boys to dinner and then took over 2nd shift so I could take Colby & Nick to Hershey Park for the nighttime premiere. Eventhough it was a set back for us, we still made the best of the trip on the next day. Nick's diagnosis has taught us so much and under the circumstances with Tom, Greg & I were very calm. The boys had so much fun at Hershey Park, even in the 103 degrees temperature. We ALL, as a family, rode a roller coaster together and many other rides.
8/3/2011:
We just dropped Nick off at Hole in the Wall Gang Camp for his first time at a sleepover camp. He was very excited today and definitely not patient waiting to go through the line and checking in with the doctor. Once he got to his cabin and met his roomies he was so happy. He gave us great big hugs and his smile told us everything would be just fine. I, of course, cried and luckily I had my sun glasses on so he would not see my tears. I think they were tears of happiness for him, knowing he is going to have fun but also missing him this week. Hole in the Wall is magical and Greg & I feel safe about nick spending the week there.
Quick Story:
I was out of town the past two days at a charity golf tournament for my work. The company we supported has the charity event every year and part of their donation goes to Hole in the Wall. So last night, at the dinner, after golfing, I was able to meet some of the top people at Hole in the Wall that make it all happen for these kids. Of course they remembered Nick from family weekends and were so excited to hear he was attending this week. You really feel part of their family. I will blog next week about his experience. I already packed a goody bag for him that I am mailing tomorrow and plan to mail a couple of letters to. I already miss the little guy so much......Karen
Tuesday, July 12, 2011
Off for Vacation
Nick had his 6wk clinic visit. I booked the appt. with our actual Oncologist doctor. In the past we have been the nurse practitioners because we go on Monday and our doctor is in clinic on Thursdays. I am glad I made the appointment with her and she answered all our questions and made us feel at ease. Nick has lost a pound and he does not eat a lot. The doctor mentioned that she sees kids actually keep eating once off treatment, as a habit. He did grow .25 of an inch so there is not a huge concern about his height & weight. Everyone has mentioned to us how different he looks now.... he looks like a 7 yr old boy, so we just need to work on him eating some more. We also brought up fatigue and his muscle strength but again, as we move forward he should improve on this. His were ALL normal:
WBC: 11.5
RBC: 4.17
Plts: 359
ANC: 3,000
We go back in 6wks again.
We are so lucky to see how well Nick is progressing but cancer never leaves my mind. A quick story. I was at Whole Foods the other day (a place I do not go to often) and as the woman was ringing me out at the register I noticed they were taking donations for Make A Wish Foundation. I decided to donate and the woman was so excited and stated that between Whole Foods and their customers they are trying to send a child from Bellingham on a wish trip. I explained to her that I am a Make A Wish Family to and how much our trip meant to all of us. She said to me: "My son passed away from AML and all he wanted to do was see Mickey." They took their trip and had a wonderful time. The woman then said to me: "When we got home, my son said to me, now I will prepare you, for when I die." The boy was 5 when he passed away and the mother said she started the Make A Wish donation at Whole Foods so she can give to other children. She showed me pictures of her son and she was smiling through our whole conversation. (as I was trying to hold my tears back). I of course lost it by the time I got to my car but knowing another child will receive their wish is comforting.
We are leaving this Saturday for our vacation to North Carolina to see the Wykoffs (Karen's sister and family). We are driving down and really looking forward to the cousins spending some time together. We have not been in over 3 years due to Nick, so this will be fun. We will stop at Hershey Park on the way and spend 2 nights there. The kids are very excited and Greg & I are looking forward to family time.
WBC: 11.5
RBC: 4.17
Plts: 359
ANC: 3,000
We go back in 6wks again.
We are so lucky to see how well Nick is progressing but cancer never leaves my mind. A quick story. I was at Whole Foods the other day (a place I do not go to often) and as the woman was ringing me out at the register I noticed they were taking donations for Make A Wish Foundation. I decided to donate and the woman was so excited and stated that between Whole Foods and their customers they are trying to send a child from Bellingham on a wish trip. I explained to her that I am a Make A Wish Family to and how much our trip meant to all of us. She said to me: "My son passed away from AML and all he wanted to do was see Mickey." They took their trip and had a wonderful time. The woman then said to me: "When we got home, my son said to me, now I will prepare you, for when I die." The boy was 5 when he passed away and the mother said she started the Make A Wish donation at Whole Foods so she can give to other children. She showed me pictures of her son and she was smiling through our whole conversation. (as I was trying to hold my tears back). I of course lost it by the time I got to my car but knowing another child will receive their wish is comforting.
We are leaving this Saturday for our vacation to North Carolina to see the Wykoffs (Karen's sister and family). We are driving down and really looking forward to the cousins spending some time together. We have not been in over 3 years due to Nick, so this will be fun. We will stop at Hershey Park on the way and spend 2 nights there. The kids are very excited and Greg & I are looking forward to family time.
Tuesday, June 28, 2011
The Results are In
Hello,
I know I have not posted in a while. I think about it everytime but then something else comes up like hanging with the kids or playing outside, so I think my excuses are pretty good. Greg & I had our appt. today with Dr. Selke -- Pediactirc Neuropsychologist to receive Nick's results on his testing.
Many people have asked why is this test being done and what will we get out of it. When Nick was treated for Leukemia he received radiation (8 days of it) and high dose chemo. There are many side effects from both which can lead to brain deficiencies, such as cognitive skills, comprehension, fatigue, etc.... Nick was in testing for a full day and they were able to complete the whole series of tests. I will first start by saying Nicholas is VERY smart and we are so proud of him. His total IQ number did drop from 124 to 113. Anybody who knows about IQ testing is aware that there are varying degrees in the actual measure (ie:number) that each test uses. His testing is in the range from 1-145. We are satisfied with the results and the areas that Greg & I thought he would need help, did show up on his tests. Our concerns were correct and we still have to accept the fact that there is side effects from everything his body/brain went through. As the doctor states... we saved our child by treating him with chemo and radiation, so we take the side effects and work through them. Nick is showing the 'common' signs from radiation. Here is the breakdown to make it more clear:
- 8 hours of testing -- the dr. uses activities to work on different areas of the brain
- During testing Nick was fatigue by 11am and in the early afternoon by 3pm. The tests going on during this time was not 100% dx due to fatigue
- Nick did drop or show slow response to comprehension & motor skills
The Dr. said he is working on a study where fatigue actually continues through during his delvelopment phase of life. Greg & I always thought Nick would be back to his original energy level and now studies are proving that is not the case. While we see improvement in his energy, he is still not there yet and we do not know if ever will be. He may stay awake all day and play but activities such as baseball can wear him out quickly. We have seen this on the baseball field. He takes a few swings and then he complains he is tired....Of course we try to encourage him and keep telling him to try but in reality his brain/motor skils are slow and tired. Just something we, as parents, need to watch as time goes by.
The big question I asked the Dr. was if Nick would ever re-gain or improve on these skills in which he has shown a decrease in. The Dr. explained it to me like this: Your brain cells (white mass growing around your nerves) grow until about the mid20's and if a normal child is at 100% motor skills and then becomes sick (like Nick), those cells could drop down to about 75%, with radiation killing the 25%. He will never get back to 100% but he can maintain or drop where he is today. So our goal is to continue to challenge Nick and focus on these areas to keep his level of 'smartness' up.
I will post more on this next week when I receive the actual paperwork. The Dr. had some updating to do on his medication sheet of the report and will be sending it out to us. The meeting was very overwhelming for Greg & I to learn just the terminology and then apply it to the exact behavior going on in his brain/everday functions. The testing Nick endured was very draining for him but it is so important to work each part of the brain. The Dr. is not instructed to tell us how to handle the coming years but we have a better idea what we need to do as parents. More details on next blog. Sorry if this is confusing reading about it... I am trying to process everything that was said and also dissect what is the priorities for keeping Nick on track.
On a very happy note: Thomas turns 3 on July 3rd. He has grown up so much and barely looks like our 'baby' anymore. The years pasted by so quickly for us with Tom and missing him during Nick's treatment. I think he has become more independent than the other 2 because of this. He is our little 'madman' in the house. Mom & Dad love you very much Thomas!!!!! We are celebrating this year with a big Mickey Mouse Cake.
I know I have not posted in a while. I think about it everytime but then something else comes up like hanging with the kids or playing outside, so I think my excuses are pretty good. Greg & I had our appt. today with Dr. Selke -- Pediactirc Neuropsychologist to receive Nick's results on his testing.
Many people have asked why is this test being done and what will we get out of it. When Nick was treated for Leukemia he received radiation (8 days of it) and high dose chemo. There are many side effects from both which can lead to brain deficiencies, such as cognitive skills, comprehension, fatigue, etc.... Nick was in testing for a full day and they were able to complete the whole series of tests. I will first start by saying Nicholas is VERY smart and we are so proud of him. His total IQ number did drop from 124 to 113. Anybody who knows about IQ testing is aware that there are varying degrees in the actual measure (ie:number) that each test uses. His testing is in the range from 1-145. We are satisfied with the results and the areas that Greg & I thought he would need help, did show up on his tests. Our concerns were correct and we still have to accept the fact that there is side effects from everything his body/brain went through. As the doctor states... we saved our child by treating him with chemo and radiation, so we take the side effects and work through them. Nick is showing the 'common' signs from radiation. Here is the breakdown to make it more clear:
- 8 hours of testing -- the dr. uses activities to work on different areas of the brain
- During testing Nick was fatigue by 11am and in the early afternoon by 3pm. The tests going on during this time was not 100% dx due to fatigue
- Nick did drop or show slow response to comprehension & motor skills
The Dr. said he is working on a study where fatigue actually continues through during his delvelopment phase of life. Greg & I always thought Nick would be back to his original energy level and now studies are proving that is not the case. While we see improvement in his energy, he is still not there yet and we do not know if ever will be. He may stay awake all day and play but activities such as baseball can wear him out quickly. We have seen this on the baseball field. He takes a few swings and then he complains he is tired....Of course we try to encourage him and keep telling him to try but in reality his brain/motor skils are slow and tired. Just something we, as parents, need to watch as time goes by.
The big question I asked the Dr. was if Nick would ever re-gain or improve on these skills in which he has shown a decrease in. The Dr. explained it to me like this: Your brain cells (white mass growing around your nerves) grow until about the mid20's and if a normal child is at 100% motor skills and then becomes sick (like Nick), those cells could drop down to about 75%, with radiation killing the 25%. He will never get back to 100% but he can maintain or drop where he is today. So our goal is to continue to challenge Nick and focus on these areas to keep his level of 'smartness' up.
I will post more on this next week when I receive the actual paperwork. The Dr. had some updating to do on his medication sheet of the report and will be sending it out to us. The meeting was very overwhelming for Greg & I to learn just the terminology and then apply it to the exact behavior going on in his brain/everday functions. The testing Nick endured was very draining for him but it is so important to work each part of the brain. The Dr. is not instructed to tell us how to handle the coming years but we have a better idea what we need to do as parents. More details on next blog. Sorry if this is confusing reading about it... I am trying to process everything that was said and also dissect what is the priorities for keeping Nick on track.
On a very happy note: Thomas turns 3 on July 3rd. He has grown up so much and barely looks like our 'baby' anymore. The years pasted by so quickly for us with Tom and missing him during Nick's treatment. I think he has become more independent than the other 2 because of this. He is our little 'madman' in the house. Mom & Dad love you very much Thomas!!!!! We are celebrating this year with a big Mickey Mouse Cake.
Friday, June 10, 2011
Neuropsychology Test
Nick had his IQ test on Wednesday. It was a long full day of testing and he was very exhuasted by the end of the day. The IQ test is done because Nick received total brain radiation back in December of 2008. It was part of his protocol to treat his leukemia because it had spread to his brain/spinal (CNS) when dx. Radiation can cause long term side effects such as learning disabilities, tiredness and can even lead to new cancers. Our goal was to treat the leukemia and you deal with the side effects later. Nick is healthy but he will continue to have follow up neuro testing done to see how he is progressing. The good news is that he was off the charts smart back in 2008 and the doctor said you will probably see some decline but hopefully not a lot. Nick missed a lot of school in Kindergarten and some in 1st grade so that can contribute to it as well. The testing will give us guidance if we should pursue a tutor for the summer and where we need to focus on for 2nd grade. Nick was a trooper during testing, he wanted to go home many times but he continued with it. I had to bribe him with Go-Gos, but he made it through.
This weekend is his last baseball game. I think he likes socializing on the bench more than playing, but that's okay because at least he is out there and being a kid again. I can't believe it has been 7 months since Nick finished treatment. It still amazes me and I have not forgotten everything he went through. I stopped in at clinic while Nick was in testing to make an appt. for his next blood work and I saw so many kids in the waiting room.... battling some disease. It breaks my heart to see these kids knowing the battle they are facing. Please continue to pray for all the kids who are battling this disease. Take Care Karen
This weekend is his last baseball game. I think he likes socializing on the bench more than playing, but that's okay because at least he is out there and being a kid again. I can't believe it has been 7 months since Nick finished treatment. It still amazes me and I have not forgotten everything he went through. I stopped in at clinic while Nick was in testing to make an appt. for his next blood work and I saw so many kids in the waiting room.... battling some disease. It breaks my heart to see these kids knowing the battle they are facing. Please continue to pray for all the kids who are battling this disease. Take Care Karen
Monday, May 23, 2011
All Medication is completed
Nick is completely done with all medication. He finished his Bactrum last week. I think he was happy about it. When I told him last week that he had finished all his 'clinic' meds he said 'great'. I do not think it really phases him, everything he has been through and how proud he should be to finally finish. He has moved on to being a 7yr old. He likes baseball and just picked up the basketball yesterday to try and play. He typically sits out of playing sports with his friends and I believe it is because he feels like he can not play or is not the fastest person. He knows the kids are better than him. We keep encouraging him that he will learn the game and to keep trying. I really believe he does not feel as strong as he looks. I know he tires easily but he will push himself when he wants to. We are fortunate that this is our 'biggest' concern. There are so many kids who are battling cancer and do not have the physical abilities like Nick does. Greg & I undertsand it will take some time for Nick to find his niche and what he really wants to do.
The kids are almost done with school and then will attend daycamp for the summer. Nick will be taking a summer enrichment program to help out with his reading. We have seen improvement with him and continue to try and find the books he likes. That is all news for now. I will have more to post next month with many activities coming up. Take Care, Karen
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