Hello,
I have to start the post with catching up on the weekend. The boys went to Auntie Lisa's for a sleepover (even Tom) and had a great time. Thank you Auntie Lisa. I heard all 3 boys were well behaved and had fun swimming in the lake. Greg & I had some time to and took advantage of the 4-wheeling trails behind our house. We headed out for a 3 hour journey.
Colby & Nick started school today. We were very excited to get them on the bus but also concerned how Nick would handle a full day of school. Last year, he was in the half day kindergarten program and was usually wiped out by the time he got home. Today, everything was fine. The boys are now playing legos and enjoying being inside, away from our heat wave. Greg took Nick to clinic yesterday and his counts were good:
WBC: 3.9
RBC: 10
Plts: 473 - high, not sure why
APC: 2,500
He is scheduled for his 18wk spinal (lumbar puncture) on 9/8. He is not happy that he has to miss school so early in the year but this could be the last one. We have a 3 day school week and then a nice long weekend. Take care.
September is National Childhood Awareness Month. Click on Cancer Facts for information on childhood cancer. There are ways to help out: donate blood and donate platelets. I will try to post more facts throughout the month....
Tuesday, August 31, 2010
Monday, August 23, 2010
Week is Over -- Great Weekend
Hello All,
The week of steroids were okay. Nick was definitely very emotional and meltdowns came everyday. He was getting upset over the little things and then it just escalated to food and not looking at him the right way. One day I sent him to his room to chill out and he ended up throwing everyhing around. He then came down stairs and pulled one of our kitchen drawers out and dumping all the stuff. I was a little surprised to see this much aggresstion in him but then again, it has been almost 2 years worth of steroids in his body. After his sadness came the love and happiness, the Nick we know. He would calm down and give me a hug and tell me how much he loves me, and the family. He gets over it pretty quickly. That is the thing about kids, they forget and move on and be happy. A little challenging for the adults to see it, deal with it and know it will be okay. Greg and I try to talk to him about the episodes a day or so later and let him know it is okay to feel that way and we are here for him. It is not okay to take it out on his brothers and us and yelling. We try to do our best.... As we are starting to say, another round of steroids down, hopefully only a few more to go.
On a great note, we (Colby, Nick and I) spent Saturday night at Aunt Amy's house for a girls night and kid night out. We had a great time. Nick was in pain most of the time and luckily I brought all the pain pills I could. He went through most of them but really handlded everything well. We have figured out, as long as he feels comfortable where he is, then he can get through the pain. He is astute to his vocabulary that he did say he felt 'left out' and 'alone' at times and people do not understand his chemo. Every child was great to him, I know he was feeling different and wanted to express it. Of course, by Sunday morning he was ready to go and back to himself. Which bring us to clinic:
I decided to take my chances (keep up with me on this) and bring Colby, Joey and Nick to clinic. 3 active boys and the lecture about behaving came way before we walked into clinic. They were great. It was a long day today. I know the clinic was short on staff and we ended up there for about 3 hours. The boys were good because we had the Wii to play and plenty of snacks. Nick's counts were high... to be expected aftet steroid week, but also counts we have not seen in a while.
WBC: 10.3 - normal range
RBC: 10.3
PLTS: 416 -- that is high
APC: 7,400
We will see next week what the 'real' counts are because they will probably drop and level off. He is on 6MP still and the upped dose. Nick is looking forward to his playdate tomorrow and the last week before school starts. Wow, time for 1st grade and full day of school.
This Saturday the kids (yes, all 3) are going to Auntie Lisa's for a sleepover, with their friend Brian. They are very excited and looking forward to swimming in the lake. Tom does not know yet, (of course, he is a 2 yr old) and will hopefully be good for Auntie Lisa. We will post later on their adventure. Take care. Another week down.... yes, scary we are starting to talk about the end. We pray it will come. Take care. Karen
Oh yeah, above is a picture of the boys at clinic. We can not leave out Tom. Tom was running around in the rain outside and decided sunglasses were necessary. Enjoy.
Wednesday, August 18, 2010
Back on the Steroids
We had a great weekend and definitely one to remember. We spent Saturday at Auntie Lisa's lake, going paddle boating and fishing. Sunday we decided a family day to the beach was needed. The weather was a little overcast and windy but that did not stop us from having a blast. The waves were huge and the boys brought their boogie boards. Nick was riding the waves and crashing in the water. It was nerving wrecking for me to watch him because he would go under and it took a few seconds before I could see him come back up. He would come up smiling and running back into the ocean. We have not seen Nick be so strong in the water and enjoy himself so much. The bigger the waves the more fun he was having. Colby had a rash on his stomach from the day before at the lake so the salt water stung a little. He eventually got through it all and joined Nick in the water. We've been telling Nick this week that when he feels sad or something does not go his way to remember the ocean and waves he road into shore.
I took Nick to clinic this week. It was uneventful.... which we always like. His counts were good and the doctor has decided to increase his 6MP dose, Vincristine, Methotrexate and 5 days of steroids. As I mentioned in the past, we would like him to be at 100% dose for all his chemo. The doctors have decreased it in the past because of his virus's and being neutropenic. Hopefully he will stay fever free during this cycle. He seems to break a fever everytime we increase the dose. Steroid week is only half way through and he seems okay. He does have little meltdowns over little things. We have 2 weeks left before school starts and I am looking forward to it. The summer has been great and I am sure the boys enjoyed not having a schedule and staying up late most nights. I will be meeting with Nick's teacher next week to update his 504 plan and already write down the dates he will be out of class for Sept.
Counts:
WBC: 4.2
RBC: 10.0
APC: 2,500
On a very positive side note: I spoke with Nurse Pat on monday about our Make A Wish Trip and planning it during the start of Nick's cycle. She said since we are in the maintenance phase of his treatment we can push the start of the cycle out 1 week. Yes, we can go on the trip and Nick will actually be PILL FREE the entire time.
I took Nick to clinic this week. It was uneventful.... which we always like. His counts were good and the doctor has decided to increase his 6MP dose, Vincristine, Methotrexate and 5 days of steroids. As I mentioned in the past, we would like him to be at 100% dose for all his chemo. The doctors have decreased it in the past because of his virus's and being neutropenic. Hopefully he will stay fever free during this cycle. He seems to break a fever everytime we increase the dose. Steroid week is only half way through and he seems okay. He does have little meltdowns over little things. We have 2 weeks left before school starts and I am looking forward to it. The summer has been great and I am sure the boys enjoyed not having a schedule and staying up late most nights. I will be meeting with Nick's teacher next week to update his 504 plan and already write down the dates he will be out of class for Sept.
Counts:
WBC: 4.2
RBC: 10.0
APC: 2,500
On a very positive side note: I spoke with Nurse Pat on monday about our Make A Wish Trip and planning it during the start of Nick's cycle. She said since we are in the maintenance phase of his treatment we can push the start of the cycle out 1 week. Yes, we can go on the trip and Nick will actually be PILL FREE the entire time.
Friday, August 13, 2010
Just a quick update today. Yesterday, the boys, Joey and Megan went to Newport to set sail on a sailboat. The program 'sail away' was sponsored by Hasbro Children's Hospital. They all had a great time but were also scared as the sail boat sailed further out to sea. Aunt Amy and Tara (our wonderful sitter for the summer) accompanined the kids.
Click on this article. I can definitely relate to the entire piece. As we start to approach our date, there are still numerous questions that go through my mind. To think back over the past 2 years and see everything Nick has gone through and then wonder.... what will come next. There is always the looming words 'side effects' that come to my mind. We can not react to anything until we see it. Greg & I both believe we see some changes in Nick. The innocence was taken from him the day he was diagnosed and now he knows more at the age of 6 than most of us. He helps the nurses attach and unattach his tubes from his port and helps insert his blood into the tubes for the lab. The steroids really do a number on his attitude and feelings. We will continue our journey with the positive attitude and adjust how we see fit. Karen
Click on this article. I can definitely relate to the entire piece. As we start to approach our date, there are still numerous questions that go through my mind. To think back over the past 2 years and see everything Nick has gone through and then wonder.... what will come next. There is always the looming words 'side effects' that come to my mind. We can not react to anything until we see it. Greg & I both believe we see some changes in Nick. The innocence was taken from him the day he was diagnosed and now he knows more at the age of 6 than most of us. He helps the nurses attach and unattach his tubes from his port and helps insert his blood into the tubes for the lab. The steroids really do a number on his attitude and feelings. We will continue our journey with the positive attitude and adjust how we see fit. Karen
Tuesday, August 10, 2010
Clinic
Hello,
We are all well here. Nick is feeling much better and back to himself this week. On the way into clinic today Nick asked me when he was going to finished getting his medicine. I told we are scheduled to be finished in November and then he said: "So I do not have to go to clinic after that". I told, no, we will still go for updates and see our favorite nurses, right? He said: "Yeah, I will miss them if I do not see them." It is amazing how the people at clinic have become like family to us or maybe our security blanket is a better way to put it. So, yes, I have stated Nick's scheduled end date above but Greg & I do not really look that far out. The thought of it is exciting but scary at the same time. We are not ready to take the step into 'Life after Cancer yet', which is okay as long as Nick is doing well.
Everything went well with clinic. Counts are good:
WBC: 3.3
RBC: 10.0
APC: 2,600
He received his methotrexate and will start another cycle next week. I think I am organized with Nick's schedule but I just learned today that I am not. I write down the start of his cycyle's and when we expect his LP (spinal) to be performed. Well, I just found out I missed a week in his cycle and had to re-do my calendar. (No big deal, right). Well, it turns out that we will now be going on Nick's Make A Wish Trip at the start of his cycle and not at the end of it. We know how the start of it goes and how Nick feels by the end of the week. I can not believe I did this. We will still make the best of it and have a blast. It is just a bump we'll get over. Karen
We are all well here. Nick is feeling much better and back to himself this week. On the way into clinic today Nick asked me when he was going to finished getting his medicine. I told we are scheduled to be finished in November and then he said: "So I do not have to go to clinic after that". I told, no, we will still go for updates and see our favorite nurses, right? He said: "Yeah, I will miss them if I do not see them." It is amazing how the people at clinic have become like family to us or maybe our security blanket is a better way to put it. So, yes, I have stated Nick's scheduled end date above but Greg & I do not really look that far out. The thought of it is exciting but scary at the same time. We are not ready to take the step into 'Life after Cancer yet', which is okay as long as Nick is doing well.
Everything went well with clinic. Counts are good:
WBC: 3.3
RBC: 10.0
APC: 2,600
He received his methotrexate and will start another cycle next week. I think I am organized with Nick's schedule but I just learned today that I am not. I write down the start of his cycyle's and when we expect his LP (spinal) to be performed. Well, I just found out I missed a week in his cycle and had to re-do my calendar. (No big deal, right). Well, it turns out that we will now be going on Nick's Make A Wish Trip at the start of his cycle and not at the end of it. We know how the start of it goes and how Nick feels by the end of the week. I can not believe I did this. We will still make the best of it and have a blast. It is just a bump we'll get over. Karen
Wednesday, August 4, 2010
Back to the Usual
Steroid week is over and Nick is back to himself again. We had a wonderful time at the Red Sox game and the Picnic in the Park after. We decided to take the T into Boston and Colby was very scared to ride the train but once we got moving, he was okay. We did not get to the game until the 5th inning because we knew we were staying late. Nick was great up until the picnic. He was having a lot of pain from the steroids. We brought his codeine and morphine with us but ended up going through all of it by 7pm. We received blankets for the picnic and you can see Nick took advantage of them. Colby was running all over the field and really enjoyed seeing Blue Man Group play. We really wish Nick could of enjoyed the experience as much as Colby but we are thankful for the opportunity to go. (You just have to make the best of the situation).
I took Nick and Colby to clinic on Monday. The place was very busy and we there for about 3 hours. Nick's counts are good and he recieved his Methotrexate.
I took Nick and Colby to clinic on Monday. The place was very busy and we there for about 3 hours. Nick's counts are good and he recieved his Methotrexate.
Saturday, July 31, 2010
Good Week for Nick
Nick completed his round of steroids for this cycle. He was pretty good this week, only a few meltdowns and lots of french fries to curve his appetite. One morning he cried for an hour b/c he wanted ice cream for breakfast and I told him to eat something healthy first and then he can have ice cream. It is amazing to see him turn into a different child when the meltdowns occur. You know he will snap out of it and forget all about it but watching him can be sad. He ended up having a sleepover at Papa's (Boston) house with his cousin Megan. They both had a great time and I believe getting him away from our house is good for him.
I received a call yesterday from the Make A Wish Foundation and they were given 4 tickets to the Red Sox on Sunday and the Picnic in the Park charity event after the game and she offered it all to us. We are very excited and the weather should good. We have never been on the field before and we are even thinking of bringing Tom. You might be wondering why they called us and I have not actually blogged about Nick's Make A Wish Trip. For us, it is to far out to think about. We are making plans, have our plane flight and know were we are going but I try not to get to excited until the date gets closer. Of course it is Disney World and we are staying at Give Kids the World. Check it out. I have heard some many wonderful stories about this place. We are still humbled by the generosity people give to help kids. There are our family, friends and the many foundations that have given so much to our family. We thank all of you who continue to support us through our journey.
I received a call yesterday from the Make A Wish Foundation and they were given 4 tickets to the Red Sox on Sunday and the Picnic in the Park charity event after the game and she offered it all to us. We are very excited and the weather should good. We have never been on the field before and we are even thinking of bringing Tom. You might be wondering why they called us and I have not actually blogged about Nick's Make A Wish Trip. For us, it is to far out to think about. We are making plans, have our plane flight and know were we are going but I try not to get to excited until the date gets closer. Of course it is Disney World and we are staying at Give Kids the World. Check it out. I have heard some many wonderful stories about this place. We are still humbled by the generosity people give to help kids. There are our family, friends and the many foundations that have given so much to our family. We thank all of you who continue to support us through our journey.
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