Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Wednesday, February 3, 2010

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

Tuesday, February 2, 2010

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

Monday, February 1, 2010

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:
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.