Hello,
We all had a great weekend. Greg & I went to a wedding and night away. The kids had sleepover's while Grammy watched Tom for the night. Thank you to Debbie and Aunt Amy for taking the boys, they had a great time and were very tired on Sunday. Grammy said Tom was wonderful and we thank you for taking his as well. He is at a great age and really talking up a storm. I can not believe he will be 2 in July. Colby marched in his first baseball parade and was excited to throw out candy to all the kids cheering them on. We actually felt 'normal' for the week and enjoyed the family time on Sunday.
I took Nick to clinic today. He was good but very upset to hear that his DS player was not there and we had lost it. We have looked everywhere for it and really thought clinic might have it. He was distracted playing the clinic's DS players with Alayna and together they teamed up to play games. His counts are good, still not as high as I thought they would be:
WBC: 3.9
RBC: 10.4
APC: 1,900
They have decided to lower the Methotrexate dose from 32mg to 25mg and the 6mp by 20%. The Vincristine will stay the same because that does not have an effect on dropping his counts. They believe Nick's bone marrow is just getting tired this late in treatment. They have seen this happen before and are not to concerned of dropping the dose. They are also checking his levels from the IVIG transfusions and we will see if he needs another one.
I am attaching an article Greg found from the Joe Gibbs (racing and former NFL coach). His grandson battled ALL and the article did a great job sharing the journey and how the parents felt. We can relate to a lot their quotes and how we felt at different time during the journey. They summed it up a lot better than I could.
http://sports.espn.go.com/rpm/nascar/cup/columns/story?columnist=smith_marty&id=5206059
Hope you enjoy it. Karen
Monday, May 24, 2010
Wednesday, May 19, 2010
Just Thinking Out Loud
There are just some days that my mind drifts to my family and everything we have been through. The emotional roller coaster, along with the stress and watching your child day to day can catch up to you at some point. I think Greg and I feel that way at times. We understand there are many families out there not as fortunate as us to have close family, friends, donations and jobs to take care of Nick however we can. I am thinking today that Nick has not had chemo in his body for over a week now, nothing. It feels okay to take a break but also scary that his body does not have that poison in him to keep any leukemic cells from popping out. (for lack of better terms).
Nick is having a great week. He is on his 2nd day at Prospect Hill (daycare) and as much as I miss him being home, I am able to focus on work a little more. The daycare did call yesterday because Nick wanted to say hello. I really appreciate everyone there and working with Nick however they can to make him happy. He was excited to go back today after school. Socially I believe Nick is fine but how can you blame a kid that goes from clinic, to hospital stay, to home, to school and then daycare all the time to not be a little cranky about it. I guess that I just needed to get some feelings out today. Greg & I will be going to dinner next week with Parents from the clinic. It is a 'time out' event from the Tomorrow Fund for the parents. Nana offered to help us out and babysit, which will be nice to talk with some people who 'get it'.
Nick is having a great week. He is on his 2nd day at Prospect Hill (daycare) and as much as I miss him being home, I am able to focus on work a little more. The daycare did call yesterday because Nick wanted to say hello. I really appreciate everyone there and working with Nick however they can to make him happy. He was excited to go back today after school. Socially I believe Nick is fine but how can you blame a kid that goes from clinic, to hospital stay, to home, to school and then daycare all the time to not be a little cranky about it. I guess that I just needed to get some feelings out today. Greg & I will be going to dinner next week with Parents from the clinic. It is a 'time out' event from the Tomorrow Fund for the parents. Nana offered to help us out and babysit, which will be nice to talk with some people who 'get it'.
Monday, May 17, 2010
Clinic Day
Hello,
The weekend turned out to be great. Nick came home around 5pm Friday night. I gave tubs to Colby & Tom before Nick arrived and warned the boys it was going to be family night and we were staying inside. Greg & I felt Nick really needed one more night trying to stay germ 'free'. Nick agreed only if I let him play outside on Sat. and so that day Nick enjoyed hanging out with our neighbors. The Love family came over Sat. night for dinner and more playtime. Sunday, Nick headed over to Michael's and swimming. It was great to hear he finally put his DS down and got some exercise in.
Today we are at clinic. Nick just fell asleep and he is receiving the Pentimidine and IVIG. They pre-treat his IVIG with Tylenol and Benadryl and he is also on Zofran (anti-nauseau). It is amazing how much medicine, chemo and pre-treats he receives in one day. He is scheduled for Methotrexate (chemo) if his ANC is high enough.
Counts just came back:
WBC: 2.5
RBC: 8.8
APC: 1,200
ANC: around 400
He is still considered 'neutropenic' so they are holding his chemo today. We will just start another cycle next week. In this phase of Nick's treatment we do not make up any week he misses chemo, we just move on. Karen
The weekend turned out to be great. Nick came home around 5pm Friday night. I gave tubs to Colby & Tom before Nick arrived and warned the boys it was going to be family night and we were staying inside. Greg & I felt Nick really needed one more night trying to stay germ 'free'. Nick agreed only if I let him play outside on Sat. and so that day Nick enjoyed hanging out with our neighbors. The Love family came over Sat. night for dinner and more playtime. Sunday, Nick headed over to Michael's and swimming. It was great to hear he finally put his DS down and got some exercise in.
Today we are at clinic. Nick just fell asleep and he is receiving the Pentimidine and IVIG. They pre-treat his IVIG with Tylenol and Benadryl and he is also on Zofran (anti-nauseau). It is amazing how much medicine, chemo and pre-treats he receives in one day. He is scheduled for Methotrexate (chemo) if his ANC is high enough.
Counts just came back:
WBC: 2.5
RBC: 8.8
APC: 1,200
ANC: around 400
He is still considered 'neutropenic' so they are holding his chemo today. We will just start another cycle next week. In this phase of Nick's treatment we do not make up any week he misses chemo, we just move on. Karen
Friday, May 14, 2010
Coming Home
The plan is to have Nick discharged around 4:30pm this afternoon. He will still be on antibiotics for a week. The doctor did see a 'tiny' spot on his chest xray from Wed., so as a precaution we will start zithromax. His counts are a little better today:
WBC: 1.6
RBC: 7.9 (dropped but they do not believe he needs a transfusion)
ANC: around 200 - still waiting on the hand count
He is still neutropenic (under 500 for ANC) but the doctor believes it is just a virus and needs to run its course. Nick looks great and was running around the play room last night. Greg said he feels great today and of course wants to come home. If he does come home tonight we will be staying close to the house for the weekend and letting Nick rest. I will update later once I hear back from Greg on the final decision. Karen
Quick picture of Megan and Nick yesterday playing on the bed. Nick was proud to show Megan his port and how it works. Megan was a little scared of everything going on but then she warmed right up.
Thursday, May 13, 2010
Update: Still here
Hello,
We are definitely spending one more night. Nick's counts did not change to much but he has been fever free since this morning. He looks really good and thanks to a visit from cousin Megan and the Hole in the Group, his spirits are up to. Megan and Nick were able to go to the play room (they each wore masks of course) and play together. I think Megan really enjoyed Nick moving the bed up and down. Jeff, from Hole in the Wall came in and drew pictures on the windows and door of Nick's room. He is great with kids and had Nick laughing the whole time.
Counts today:
WBC: .8
RBC: 8.2 (down .4 from yesterday)
ANC: 144 (up from yesterday, 104)
The doctor said if he can stay fever free and still looks good then we might be able to go home tomorrow afternoon.
We are definitely spending one more night. Nick's counts did not change to much but he has been fever free since this morning. He looks really good and thanks to a visit from cousin Megan and the Hole in the Group, his spirits are up to. Megan and Nick were able to go to the play room (they each wore masks of course) and play together. I think Megan really enjoyed Nick moving the bed up and down. Jeff, from Hole in the Wall came in and drew pictures on the windows and door of Nick's room. He is great with kids and had Nick laughing the whole time.
Counts today:
WBC: .8
RBC: 8.2 (down .4 from yesterday)
ANC: 144 (up from yesterday, 104)
The doctor said if he can stay fever free and still looks good then we might be able to go home tomorrow afternoon.
Wednesday, May 12, 2010
ER visit turned into a stay
Hello,
I guess the excitement of the weekend was a lot for Nick. He started coughing yesterday and through the night last night. I kept taking his temp. and he was fine. He went to school today and was feeling tired after he got off the bus. Again, I took his temp. and he was fine. We decided to go to lunch at Teppanyki's and he did not eat much. He then fell asleep for a couple of hours and woke up around 3:30. He felt really warm and sure enough he spiked a fever. I called clinic to let them know we were going to the ER because it was to late to go through clinic. Of course Paula our nurse at clinic said she would come to the ER and access Nick's port for us if we could make it there before 4:30pm. Nick was not happy about leaving home and going to the hospital. At the ER his temp. was 104 and his heart rate was up 160. His labs came back and his ANC is 104... definitely neutropenic. I am staying with him tonight. We did not pack clothes, I guess thinking optimistically, Greg drove down and dropped some off for us. (Thank Nana for helping out at the last minute) We will see how his counts are tomorrow. His red blood cells dropped from 10.6 to 8.6 in two days, so not sure if he will need a transfusion tomorrow. I am thinking we will be here until Friday which really stinks because Nick has a performance at school in the morning. He has been practicing for his line and I know he will be very upset if he misses school. It has not been a big deal to Nick when he misses school but I know this time will be hard on the 6 year old. Take care, Karen
I guess the excitement of the weekend was a lot for Nick. He started coughing yesterday and through the night last night. I kept taking his temp. and he was fine. He went to school today and was feeling tired after he got off the bus. Again, I took his temp. and he was fine. We decided to go to lunch at Teppanyki's and he did not eat much. He then fell asleep for a couple of hours and woke up around 3:30. He felt really warm and sure enough he spiked a fever. I called clinic to let them know we were going to the ER because it was to late to go through clinic. Of course Paula our nurse at clinic said she would come to the ER and access Nick's port for us if we could make it there before 4:30pm. Nick was not happy about leaving home and going to the hospital. At the ER his temp. was 104 and his heart rate was up 160. His labs came back and his ANC is 104... definitely neutropenic. I am staying with him tonight. We did not pack clothes, I guess thinking optimistically, Greg drove down and dropped some off for us. (Thank Nana for helping out at the last minute) We will see how his counts are tomorrow. His red blood cells dropped from 10.6 to 8.6 in two days, so not sure if he will need a transfusion tomorrow. I am thinking we will be here until Friday which really stinks because Nick has a performance at school in the morning. He has been practicing for his line and I know he will be very upset if he misses school. It has not been a big deal to Nick when he misses school but I know this time will be hard on the 6 year old. Take care, Karen
Monday, May 10, 2010
Clinc today and a quick look back at the weekend
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
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
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