All is Quiet

Hello,
We had a good week and weekend. The boys have been getting along so good and playing really well. Over our school break we decided to buy bunk beds for Colby's room. He had been asking for them and likes to sleep on the top bunk. We were also having an issue with Nick and constantly finding his way in our bed. Nick did not like sleeping alone and I guess his bed was uncomfortable. He was so excited to see the bunk beds and very happy to sleep on the bottom bunk. The boys are also very good at bedtime. We had a quiet weekend and lots of play time with Joey & Megan.
I took Nick to clinic yesterday and it was uneventful. Nick counts were good, on the normal side.
WBC: 7.7
RBC: 10.4
Plts: 300
APC: 6,300
Nurse Pat has decided to increase his 6MP dose. Nick started a new cycle this week, Vincristine, Methotrexate, Steroids (5 days), and 6MP (14 days). We decided to tell Nick that he was on his 'Happy' pills this week, instead of the 'Cranky' pills. Not sure if it will help with the emotions, but we'll try. Take Care, Karen

Good Day at Clinic "The House is still Standing"

Hi all,
Nick had a good day at clinic today. Laurie actually took care of him which I think is her first time, definitely with me. I do believe that the staff see's me coming and uses the opportunity to try new things out. Karen probably asks a few more questions than I, but no worries everything went smooth. Nick didn't care who was doing what. How far he has come. He never ceases to amaze me. Counts were fine...I don't have them with me so you will have to take my word on that. It really has been a while since I have posted and to be quite honest even read the blog. (I might pay for that one, should I delete it???) No. I will just say that Karen has come quite a long way. The site looks great and quite informative. You did a great job hunny! Karen can't be with us tonight because she is in Racine Wisconsin. Working her butt off as usual. Some how all the boys are in bed and things are quiet, so for now the house is still standing. Hope I didn't jinx myself. Thanks Karen you have done a great job of telling Nick's story. You show how beautiful and strong our son is.
Good night,
Greg

Clinic

Nick is feeling much better and back to himself again. The roller coaster of pain, emotions, sadness and then smiling seems to be a vicious cycle at times. You have to keep reminding yourself that tomorrow is another day. Which brings us to the past couple of days. Tuesday, we had fun playing in the snow and 4-wheeler rides with dad. Wed. was clinic day and Colby came with Nick and I. The boys were fairly good during the time there. They each made a Mardi-Gras mask and played the Wii together. Nick's counts were great:

WBC: 5.7
RBC: 11.1
Plts: 350
APC: 4800

Nurse Pat did notice that has thrush in the mouth and he will be on an antibiotic for 2 weeks. This can be painful for anyone, if not caught right away. Luckily, Nick just has minimal amount of the infection and no pain. It is just another pill for him. After clinic I took the boys to Dave&Busters for some games and food. Debbie, Michael and Maggie met up with us and the kids had a blast. Debbie (so bravely) invited Colby & Nick for a sleepover last night. The boys were so excited and I believe were well behaved? They came home this morning and talked about the sleepover for a long time. The imagination of 5-6 yr. old boys is pretty funny and keeps us entertained. Now the boys are off to the movies with Auntie Michele and ice cream after. These are the days we cherish and seeing the smile on Nick's face all morning makes me feel relieved. He is tough and we will keep fighting. Karen

On a side note, below is really good source for kids to understand Leukemia, the medicine, port and how the body reacts. It is simple and to the point. You can read the book online (no need to purchase). I know some of our friends have mentioned their kids had questions about why Nick is sick. Hopefully this can help answer some of them. I know I read this book (a couple of times) to Nick & Colby, during the beginning part of our treatment. It really helped Nick understand what was happening to him.
http://chemo-to-the-rescue.com/

Pain and Locks of Love

Hi All,

Just a quick update for the weekend. Nick did so well on the steroids and his emotions. I know it is hard and definitely uncontrollable at times, but handled the week very well. On Friday night he fell asleep in our bed and woke up screaming in pain. His legs hurt, which is typical for him right after ending steroids. It took us almost 2 hours to get the pain under control. We gave him Tylenol w/codeine and morphine. We explained to Nick that as soon as he feels pain, we need to give him medicine. He said he was in pain early in the night but felt he could handle it then. By the time we tried to control it, he was in so much pain. No matter what we go through, it SUCKS watching your child scream out in pain, knowing there is not much you can do. You just wait, sit with him and hope it goes away quickly. It was pretty much that way all weekend. The pain came and went and he would begging for more pain medicine. We decided to stick with the Morphine since it is working best. He feels better today, but still not at 100%. He is getting a running nose and we hope it is not another virus he is catching. The kids have a week off of school, so hopefully we can fill it with some play dates this week and have Nick feeling better.

On a side note, my sister (Amy) and I had 10 inches of hair cut off and donated to Locks of Love. We have been growing our hair out for almost 2 years and it felt so good to finally be able to cut it. Little things we can give back during this battle helps us feel good. As we said in the hair place, it feels like 10 pounds is gone. (If only it were true). Karen

Steroid week almost over

Hello,
We have had a good week on steroids. (How often do you hear that?) Nick was happy most of the week and even went to school everyday. I do not believe he has made it to school for a full 5 days during the week of steroids since the beginning of school. He was feeling a little sad this morning but I reminded him that next week is school break and today they are having a Valentine's party, so he would have fun. He will not go back to clinic until Wed. of next week for Methotraxate. We are looking forward to the week off with the kids. I took a couple days off from work, so looking forward to hanging out as a family. Nothing to exciting going on here. We needed some quiet this week. Take care and thanks again for everyone's support and prayers.

Thank You

I would like to say thank you to everyone for your support and prayers over the past couple of weeks. We had so much help last week, especially Grammy, helping with Tom, that is has not gone unnoticed. We are so lucky to have our family close by and there to help out when needed. Thank you to our friends for your support and understanding.


We are finally back to healthy kids again. Nick is much better and almost back to his funny self. Tom is definitely back and talking up a storm. He is very happy all the time and likes the remote controls the best. (Must take after dad). The weekend was great. The boys went to a Reptile Birthday party. I will post some pictures as soon as I can. They held a snake, skunk, scorpion, flying squirrel and many more animals. It was a fun night and really good to see Nick finally laugh again. On Sunday, Greg & Colby headed over to the Nasuti's house for the 'big game', Nick played with Michael all day and Tom stayed home. I bounced around from staying with Tom, to the Superbowl party and then Michael's house. It was a busy day for all the boys, which made for an early bed time. Monday, Nick went to clinic. I took him and brought Joey (his cousin) and Aunt Amy (my twin sister). Joey was very excited to see clinic and everything that goes on with Nick. He watched his port being accessed, the blood draw and then the medicine being administered. Although, I think they like playing the Wii the best.
Nick started his cycle again: Vincristine & Methotraxate through the port, 10 days of 6MP at night and 5 days on steroids. He was asking for a 'variety' of food this morning and of course it was none of the food I bought yesterday. After school, Nick and I have a 'date' at the grocery store. We hoping for a smoother week and getting through the steroids. Karen

We Came Home Yesterday

Everyone was able to make it home yesterday. Tom was released and is now on steroids, at least we are familia with this and a different antibiotic to treat his ear infection. Nick and Tom stayed home today and hopefully we can get back on schedule tomorrow. Nick is unsure of going back to school. He has been out for 10 days now and I think his shy side is coming out. He likes his 'comfort' zone, but I remind him that his friends are waiting for him at school. Tom is definitely hyper on steroids and not quite sure what he wants, but he will eat any food you give him. He can say some words but it is hard to tell what he wants. Colby is doing great, but of course not receiving our full attention. I think he keeps everything inside of him and then acts out after it boils up. He was upset tonight because Nick did not like his idea and then it turned into a 'my life stinks' crying fit. I feel so bad. We will just have to try as parents to work with him a little harder. Take care, Karen