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

Feeling Better Today

3pm Update:
Nick is fine. He was just waiting for chemo and one more antibiotic and then he is going home with Grammy. Tom (our 18 month old), has just been admitted to the ER. He had an ear infection last week and the past 2 days he was wheezing pretty good. Nancy (our daycare) called this morning to say he was really coughing and struggling. We trust Nancy so much and am so glad she called us. She offered to take Tom to the doctors for us. (I was still w/Nick & Greg is in CT for work). So sweet, since she takes of all those kids. Grammy was able to come and get and bring him to the pediatricians office. After a couple of neb treatments his wheezing did not go away and on top of a fever and ear infection not healing, the doctor recommended taking him to the ER. So, here I am with him now and he is sleeping. My mom (Grammy) is upstairs with Nick. I'll post more once the doctor comes in and we know what the plans are.

Nick is feeling much better today. They kept the oxygen on him all night and he was great. He tried to fight the nose tube but we explained to him that is wants to go to JJ's Bday party this weekend, we had to get better. He woke up once to go to the bathroom and for some reason his oxygen levels started to fluctuate and go down again. We were able to get it under control after a while. He slept great and is now coloring and just finished painting his lizard. His counts are their way up, except the RBC: 8.6. This is borderline transfusion but I think the doctor is going to hold off for now because his body is doing well. We hope to be out of here by this afternoon. He will receive his Methotraxate today (they held it off yesterday). I am not sure if we will send him to school tomorrow, we'll wait and see how he feels in the morning. Karen

Nick was admitted today

Greg came home from work to take Nick to clinic. He was still throwing up and going to the bathroom a lot. He definitely had a fever. When they got to clinic Nurse Paula immediately accessed his port, drew blood and started an IV drip to keep him hydrated. His temp. was 102.2 and they gave him some Tylenol. Unfortunately he started throwing up again and the Tylenol did not stay down. I was surprised that his counts were actually good:
WBC:2.1
RBC: 10.4
PLTS: 252
APC: 1,500
His heart rate was high 140's and his oxygen was low 80's. They sent him for a chest xray to make sure he did not have pneumonia and everything looked clear. Once his temp went down, his heart rate did go down some, but his oxygen was not changing. The doctor felt it would be safer to keep him at the hospital for the night and just monitor him. They have an oxygen tube hooked up blowing air to him and that is helping raise the levels. He is sleeping now. The nurse also took a nose swab (Nick was not happy about that) to send away and detect what virus he might have. We hope to be home tomorrow and fever free. If not, the next step is to order a CAT scan on his whole body to make sure there is nothing fungal going on. We don't think this will happen. Signing off for now. I will update as things change. Karen

Good weekend, but Nick is sick again

Nick stopped throwing up by Friday afternoon and was feeling better. He still had not eaten much the whole week. He really wanted to go for a sleepover at Auntie Lisa's house that night with Colby and their friend Brian. This was one of those things that we could not say no to. Of course we trusted Auntie Lisa very much, but it looked like Nick was starting to spike a fever. He was very sad during the week and this is what has kept him smiling all day Friday. He was going whether we said yes/no at the time. We over loaded Lisa with a list of instructions and to take his temp. all the time and of course call us if needed. Everything worked out great for Nick, but we received the call at 6am Sat. morning that Colby was now throwing up. This virus is nasty and we are still not done with it. They both had a great time Friday night and Auntie Lisa said Nick was smiling all night long watching the boys play Wii. Colby was much better by Saturday afternoon and we all stayed in for a family night. (And because it was 2 degrees outside)
On Sunday, the boys had swimming lessons and then off to their play dates. I received a photo of Nick during the day and he was beaming with Michael. When Nick came home, he even ate some Chinese Food. He was in bed early last night but woke up again throwing up. Just when we thought this virus has run its course, Nick is still sick. He is home today and not feeling much better. Greg will be taking him to clinic this afternoon and we'll see how his counts are. I keep taking his temp and he is slowing climbing towards a fever. His body is definitely weak, tired and ready to be over this.