Hi all,
Nick did great at clinic today. His counts were good.
WBC: 4.3
HGB: 10.0
PLTS: 275
APC: 2200
He did not get another IVIG infusion as we thought...It is next week. I guess since he seems to be feeling better since we had our first IVIG we were ready for more. Another interesting note about the week was that Nick has not complained about any pain! Yehaaa! You are always holding your breath that last day of steroids wondering, when is it going to come. Maybe there is something to be said about your mental state that can block pain. If you read Karen's last blog you know where I am going with this. Yes, the Hole in the Wall Gang Camp was awesome. Awesome for me, awesome for Karen. She and I climbed the rock tower and then leaped off down the 350 ft. zip line. No big deal, for Karen that is. She is fearless. Me not a big heights guy, but I am quite proud of myself. Oh wait this is about the boys! Tom really was absolutely the most perfect almost 2 yr. old you have ever seen. I don't think he cried all weekend. That must have something to do with our "Family Pals" Beth and Sadie. Beth is the same incredible woman who we had the pleasure of leaving Tom with last year. Sadie is new to The Hole in the Wall Gang Camp but not new to the family. She has spent time at the Painted Turtle in California. Nick had a bit of hard time as is expected being on Steroids but he had is "flashes of brialiance moments" like at Mother's Day breakfast ( a big deal at Camp) he was one of only 2 kids who got up in front of everyone put the mic in his hand and wowed the crowd with his off the cuff ellegant praise of his mother. He was beautiful. I now come to Colby. What can I say about how incredible this place is for Colby. Karen said it perfectly, "Colby is made for Camp". He went from crying about Mom having to do the "Bushy tail" dance (who knows why) to being a star at stage night when he did a Karate display that ended with him breaking a board in half and I tell you it was cool! He thrives at this place, I guess everybody does. Sorry for the rambling, I hope that Karen follows this up and makes some more sense. It will take a while to come down but we will bask in it as long as we can.
Take Care,
Greg
Monday, May 10, 2010
Tuesday, May 4, 2010
Clinic and LP
Hello,
Nick finished his weekend a very high note. Colby bought his new bike (from his Birthday money) and we moved Nick up to Colby's bike with training wheels. Nick was very excited and rode the bike for over 20 minutes. This is a big hurdle for us. Nick would ride his old bike about 2 houses down and then feel tired and not ride again. He would get upset because everyone else could ride bikes but he was not strong enough. His new bike has bigger tires and easy to manage. Nick is now out and about riding in our cul-de-sac. The little things for us make a difference.
For today: Spinal (LP) w/methotrexate and Vincristine through port, 5 days steroids (we decided not to wean this time, since it did not help him) and 6MP for 14 days. Colby was very curious and really wanted to come with us today. He has been watching Nick go through treatment for so long and I believe he feels like he can protect Nick at times. We explained to Colby at dinner last night that he could not eat anything this morning if he was going to go. The rule always is: if Nick can not eat, no one eats when we are with him. Colby agreed to it and let the boys stay up late last night with snacks. They both did great at clinic today and Colby only bugged us a couple of times for food. Nick had his LP in the PICU recovery, just like last time. We could stay and watch but I had to take Colby out of the room once Nick fell asleep. Colby was surprised to see Nick fall asleep so quickly after the medicine was injected into his port. Greg said the spinal fluid was clear, no results yet but what we want to see in it. Nick, of course, woke up early and wanted to jump up and move around. We left soon after and had a nice family lunch together. I asked Nick what he was dreaming about while he was asleep, his answer: "On a tropical beach with Mommy" ooh and then "Daddy and Colby picked us up by a boat". Happy thoughts.... Nick started feeling queasy at lunch and ended up throwing up the whole way home. We had given him Zofran in the morning, but I think the combination of the everything today just caught up to his system.
Greg & I were feeling a little relieved/drained by the time we got home........ but then the call came in: Hole In The Wall Gang Camp had an extra opening for Family Weekend this weekend and invited us to go. To say that there was not a tear in my eye, would be lying. I know it is corny, but with work, school, sports and clinic visits we have definitely been a little stressed and we are ready for a break. The boys always ask us when we can go back to Hole in the wall and I applied for this weekend but it was filled up by the time I sent in my application. Obviously the smiles on their faces when we told them, was awesome.
Happy Mother's Day to Nana and Grammy and all our moms out there this weekend. Enjoy every minute you can with your kids.
Nick finished his weekend a very high note. Colby bought his new bike (from his Birthday money) and we moved Nick up to Colby's bike with training wheels. Nick was very excited and rode the bike for over 20 minutes. This is a big hurdle for us. Nick would ride his old bike about 2 houses down and then feel tired and not ride again. He would get upset because everyone else could ride bikes but he was not strong enough. His new bike has bigger tires and easy to manage. Nick is now out and about riding in our cul-de-sac. The little things for us make a difference.
For today: Spinal (LP) w/methotrexate and Vincristine through port, 5 days steroids (we decided not to wean this time, since it did not help him) and 6MP for 14 days. Colby was very curious and really wanted to come with us today. He has been watching Nick go through treatment for so long and I believe he feels like he can protect Nick at times. We explained to Colby at dinner last night that he could not eat anything this morning if he was going to go. The rule always is: if Nick can not eat, no one eats when we are with him. Colby agreed to it and let the boys stay up late last night with snacks. They both did great at clinic today and Colby only bugged us a couple of times for food. Nick had his LP in the PICU recovery, just like last time. We could stay and watch but I had to take Colby out of the room once Nick fell asleep. Colby was surprised to see Nick fall asleep so quickly after the medicine was injected into his port. Greg said the spinal fluid was clear, no results yet but what we want to see in it. Nick, of course, woke up early and wanted to jump up and move around. We left soon after and had a nice family lunch together. I asked Nick what he was dreaming about while he was asleep, his answer: "On a tropical beach with Mommy" ooh and then "Daddy and Colby picked us up by a boat". Happy thoughts.... Nick started feeling queasy at lunch and ended up throwing up the whole way home. We had given him Zofran in the morning, but I think the combination of the everything today just caught up to his system.
Greg & I were feeling a little relieved/drained by the time we got home........ but then the call came in: Hole In The Wall Gang Camp had an extra opening for Family Weekend this weekend and invited us to go. To say that there was not a tear in my eye, would be lying. I know it is corny, but with work, school, sports and clinic visits we have definitely been a little stressed and we are ready for a break. The boys always ask us when we can go back to Hole in the wall and I applied for this weekend but it was filled up by the time I sent in my application. Obviously the smiles on their faces when we told them, was awesome.
Happy Mother's Day to Nana and Grammy and all our moms out there this weekend. Enjoy every minute you can with your kids.
Tuesday, April 27, 2010
Rainy Day
Nick, Joey, Michael,
Colby Megan & Maggie
Hi All,
I would like to first start by saying Thank you to everyone who participated in the Tomorrow Fund walk and thank you to all the people who donated on behalf of Nicholas. It was a rainy day but it did not stop the kids from jumping in the puddles and blowing bubbles. Throughout the walk their are posters of the children who are/were patients of the clinic. Nick was the first child this year. The Tomorrow Fund Clinic has been wonderful to us over this past 1.5 years. They consider each patient as part of their family and will not give up on anyone. As I have mentioned before, Nick feels safe at clinic, it is part of his life and will probably always be part of it. We enjoyed a family party Sunday afternoon back at our house. Greg took Nick to clinic on Monday after school. His counts were good, except his red blood cells:
WBC: 3.9
RBC: 8.5
Plts: 289
APC: 2,500
We will monitor him this week and see how he feels. If he is acting really tired and no energy we will bring him in for a red blood cell transfusion. The doctor has decided to give him one more treatment of the IVIG next month. They tested his level last week and he is just above the normal range, so as precautionary, we will go ahead with another infusion. Next Tuesday, Nick will have another Lumbar Puncture (spinal). He has one every 18 weeks, so Greg & I will be there with him. I believe we will be in PICU recovery during the procedure and be able to watch the whole time. We will tell Nick the night before because he can not eat or drink anything after midnight. I try not to think about the day until it arrives, we are always anxious waiting for the results and praying for the best.
On a side note, there is a family I have been following through caringbridge site because their son has ALL T-Cell. This little boy has endured so much and is losing his battle to leukemia through a rare chromosome disorder. Nick was tested for this chromosome at the time of his dx and he does not have it. This family really needs lots of prayers to get through the next few weeks. We are so greatful that Nick has been strong and his body has accepted the chemo to date. www.caringbridge.org/visit/caseydesombre
Saturday, April 24, 2010
Colby's Birthday and The Tomorrow Fund Stroll
Hello,
The kids have had a good week. Auntie Michele had them for a sleepover and I know they had fun. Nick was able to go in the jacuzzi and I am sure it felt good on his back. Colby was at Karate camp yesterday and had a blast with his friends. Tomorrow we will participate in the annual Tomorrow Fund Stroll for Nick's clinic. We are very excited to go and have our friends and family with us. http://tomorrowfund.org/ If you would like to read about the walk and the Tomorrow Fund, I have attached the link. We are team 'Nick Dragon' for tomorrow and if you are interested in donating, please reference our team. I will post pictures next week.
Nick is feeling good this week. He has developed a really deep cough and we have been giving cough drops for it. Hoping it will pass and not develop into anything. He has also complained of hand pain and we are not sure why. I think it is muscle spasms but we will ask at clinic on Monday. Take care, Karen
The kids have had a good week. Auntie Michele had them for a sleepover and I know they had fun. Nick was able to go in the jacuzzi and I am sure it felt good on his back. Colby was at Karate camp yesterday and had a blast with his friends. Tomorrow we will participate in the annual Tomorrow Fund Stroll for Nick's clinic. We are very excited to go and have our friends and family with us. http://tomorrowfund.org/ If you would like to read about the walk and the Tomorrow Fund, I have attached the link. We are team 'Nick Dragon' for tomorrow and if you are interested in donating, please reference our team. I will post pictures next week.
Nick is feeling good this week. He has developed a really deep cough and we have been giving cough drops for it. Hoping it will pass and not develop into anything. He has also complained of hand pain and we are not sure why. I think it is muscle spasms but we will ask at clinic on Monday. Take care, Karen
Monday, April 19, 2010
School Vacation
Hello,
Nick did very well with the steroids this time around. He did not have a huge craving of anything but did favor cheese, crackers & pepperoni. We weaned him off the steroids over the weekend and we believe it did not make a difference. Nick had a melt down on Sat. because he wanted a sleepover at Joey's house and we said no, not tonight. Aunt Amy agreed to take Nick & Colby last night for a sleepover and after Joey's birthday party. Nick was good at the party but once we got to Amy's house, he fell asleep on the couch. He pretty much slept the rest of the afternoon and we asked him to come home with us when we where leaving, but he said no. Amazing that Nick is not fazed by the fact he slept through his whole sleepover while everyone played around him. We brought morphine and Tylenol w/codeine to help with the pain if needed. We briefed Amy on the timing and when to give it and then we headed home. I never heard our phone ring last night (come to find out it was not working) and figured it was a good night..... not so much. I guess Amy was up with Nick some of the night because he was in pain. She ended up giving him 2 morphine (half) pills and the codeine later in the evening. Nick woke up this morning feeling great and has not had pain all day. We think we know why he is in pain but it is a lot of pain for a short period of time. I spoke with Nurse Pat today and told her I did not think the weaning was worth it and he only ate more during the extra two days. I am not sure if we will do this again for the next cycle. Thank you Aunt Amy for being with Nick through the night.... you got first hand experience of our Nick.
Today was clinic day and Colby came with us. The place was very busy with school break and all. We ran into a family who is back... their daughter, Samantha (3) had a brain tumor over a year ago and was confirmed cancer free last summer. They are back now because Samantha just had 3 tumors removed from her brain and has an aggressive form of cancer now. This is the first family we know who is going through the process for a second time. Please say an extra prayer for this family. Today was their first day and I know the mother was pretty upset. Colby was able to distract her brother, Ethan, and they played the Wii together for a long time. We are looking forward to the Tomorrow Fund stroll this weekend. We are team 'Nick Dragon' and we hope for good weather.
Nick's counts:
WBC: 5.6
RBC: 10.6
Plts: 153
APC: 2,900
Take care, Karen
Nick did very well with the steroids this time around. He did not have a huge craving of anything but did favor cheese, crackers & pepperoni. We weaned him off the steroids over the weekend and we believe it did not make a difference. Nick had a melt down on Sat. because he wanted a sleepover at Joey's house and we said no, not tonight. Aunt Amy agreed to take Nick & Colby last night for a sleepover and after Joey's birthday party. Nick was good at the party but once we got to Amy's house, he fell asleep on the couch. He pretty much slept the rest of the afternoon and we asked him to come home with us when we where leaving, but he said no. Amazing that Nick is not fazed by the fact he slept through his whole sleepover while everyone played around him. We brought morphine and Tylenol w/codeine to help with the pain if needed. We briefed Amy on the timing and when to give it and then we headed home. I never heard our phone ring last night (come to find out it was not working) and figured it was a good night..... not so much. I guess Amy was up with Nick some of the night because he was in pain. She ended up giving him 2 morphine (half) pills and the codeine later in the evening. Nick woke up this morning feeling great and has not had pain all day. We think we know why he is in pain but it is a lot of pain for a short period of time. I spoke with Nurse Pat today and told her I did not think the weaning was worth it and he only ate more during the extra two days. I am not sure if we will do this again for the next cycle. Thank you Aunt Amy for being with Nick through the night.... you got first hand experience of our Nick.
Today was clinic day and Colby came with us. The place was very busy with school break and all. We ran into a family who is back... their daughter, Samantha (3) had a brain tumor over a year ago and was confirmed cancer free last summer. They are back now because Samantha just had 3 tumors removed from her brain and has an aggressive form of cancer now. This is the first family we know who is going through the process for a second time. Please say an extra prayer for this family. Today was their first day and I know the mother was pretty upset. Colby was able to distract her brother, Ethan, and they played the Wii together for a long time. We are looking forward to the Tomorrow Fund stroll this weekend. We are team 'Nick Dragon' and we hope for good weather.
Nick's counts:
WBC: 5.6
RBC: 10.6
Plts: 153
APC: 2,900
Take care, Karen
Tuesday, April 13, 2010
Hello,
Nothing to exciting to report this week. It is always a great week when there are no pills to give and Nick can eat whatever time he wants. This past weekend he was feeling great and back to himself again. Monday Greg took Nick to clinic in the afternoon. His counts were good, that's about all:
WBC: 3.3
RBC: 9.6 (normal: 10.6)
Plts: 127 (normal: 150-400)
APC: 1,800
We are not sure why his platelet count is low, we have not seen it this low in a long time. His APC is also on the low side considering he had his 6 days off at the end of the cycle. The doctor said it is okay and they will continue to watch his counts. He will receive another dose of the IVIG next week and his potamamine (monthly antibiotic) next week. He started his cycle yesterday and received: Vincristine, Methotrexate, 5 days of steroids and 14 days of 6MP. The doctors have decided to stretch his 5 days of steroids into 7 days and wean him off the medicine. They are concerned about the level of pain nick feels we he ends his dose, so we will try it this time around and see if Nick feels more comfortable. I am sure this will also keep Nick's appetite up for a longer period of time.
Colby's birthday is coming up in 2 weeks and the boys will no longer both be 6. I think Colby is ready to be 7 and of course have his Karate party. The boys will start school break next week and some much needed time off. Karen
Nothing to exciting to report this week. It is always a great week when there are no pills to give and Nick can eat whatever time he wants. This past weekend he was feeling great and back to himself again. Monday Greg took Nick to clinic in the afternoon. His counts were good, that's about all:
WBC: 3.3
RBC: 9.6 (normal: 10.6)
Plts: 127 (normal: 150-400)
APC: 1,800
We are not sure why his platelet count is low, we have not seen it this low in a long time. His APC is also on the low side considering he had his 6 days off at the end of the cycle. The doctor said it is okay and they will continue to watch his counts. He will receive another dose of the IVIG next week and his potamamine (monthly antibiotic) next week. He started his cycle yesterday and received: Vincristine, Methotrexate, 5 days of steroids and 14 days of 6MP. The doctors have decided to stretch his 5 days of steroids into 7 days and wean him off the medicine. They are concerned about the level of pain nick feels we he ends his dose, so we will try it this time around and see if Nick feels more comfortable. I am sure this will also keep Nick's appetite up for a longer period of time.
Colby's birthday is coming up in 2 weeks and the boys will no longer both be 6. I think Colby is ready to be 7 and of course have his Karate party. The boys will start school break next week and some much needed time off. Karen
Tuesday, April 6, 2010
Great Weekend and Quick ER Visit
Hello,
I have to say that I am finding it hard to blog..... I would like to keep the Happy Birthday blog up for a long, I do not want it to be pushed down. Nick is 6 and he had a wonderful birthday. We took the boys to the movies to see The Wimpy Kid. We were a little skeptical about the age bracket for the movie, but the kids really like it and were well behaved. Then we came home, boys played Wii and then onto cupcakes and ice cream. Nick received his 'big gift' from us which was a spy camera ATV360. He has been asking for this for a while now. Saturday was a beautiful day and the kids played outside all day. Nick stayed in for most of the day, I think he was worn out from his birthday. He took a shower right before dinner and then started having the chills. He said he was freezing even though it was 70 degrees outside. Sure enough, by 6pm he was spiking a fever. I took him to the ER. He had the best port access at the ER for the first time. The drew blood on the first prick and the nurse was great. His counts ended up being okay so he received an antibiotic and were sent home.
Sunday we had scheduled to go to Auntie Michele's house for Easter dinner and an egg hunt. Greg took the 2 boys and I stayed home with Nick. He was tired from the ER visit and we felt it would be safe to keep him home for the day. It was a good thing we did because he slept for 5 hours that day and feeling great once he woke up. Monday Greg took him to clinic and his counts were improved from Saturday night.
Quick story before I sign off:
Saturday: Nick and Joey were playing outside and decided to get a Popsicle out of the frig in the garage. Joey grabbed one and went back to playing basketball. I noticed Nick was lingering around the frig and I asked him what he was doing. He just replied and said nothing, with a smirk on his face and then he headed inside. Sunday: Greg comes home with the boys and he noticed the name Colby written on the frig with a black sharpie pen. Greg could tell right away it was not Colby's handwriting. Nick was at the table eating and Greg asked him if had written on the frig, his response: "No, but I bet the person that did that really regrets doing it."
I have to say that I am finding it hard to blog..... I would like to keep the Happy Birthday blog up for a long, I do not want it to be pushed down. Nick is 6 and he had a wonderful birthday. We took the boys to the movies to see The Wimpy Kid. We were a little skeptical about the age bracket for the movie, but the kids really like it and were well behaved. Then we came home, boys played Wii and then onto cupcakes and ice cream. Nick received his 'big gift' from us which was a spy camera ATV360. He has been asking for this for a while now. Saturday was a beautiful day and the kids played outside all day. Nick stayed in for most of the day, I think he was worn out from his birthday. He took a shower right before dinner and then started having the chills. He said he was freezing even though it was 70 degrees outside. Sure enough, by 6pm he was spiking a fever. I took him to the ER. He had the best port access at the ER for the first time. The drew blood on the first prick and the nurse was great. His counts ended up being okay so he received an antibiotic and were sent home.
Sunday we had scheduled to go to Auntie Michele's house for Easter dinner and an egg hunt. Greg took the 2 boys and I stayed home with Nick. He was tired from the ER visit and we felt it would be safe to keep him home for the day. It was a good thing we did because he slept for 5 hours that day and feeling great once he woke up. Monday Greg took him to clinic and his counts were improved from Saturday night.
Quick story before I sign off:
Saturday: Nick and Joey were playing outside and decided to get a Popsicle out of the frig in the garage. Joey grabbed one and went back to playing basketball. I noticed Nick was lingering around the frig and I asked him what he was doing. He just replied and said nothing, with a smirk on his face and then he headed inside. Sunday: Greg comes home with the boys and he noticed the name Colby written on the frig with a black sharpie pen. Greg could tell right away it was not Colby's handwriting. Nick was at the table eating and Greg asked him if had written on the frig, his response: "No, but I bet the person that did that really regrets doing it."
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