Still Feeling Great

Nothing new to report. Nick is still feeling great and with his doses lowered we can see the difference in him. His counts did not drop much this week as they usually do.
WBC: 6.7
RBC: 10.3

We do not want his counts to high as I have mentioned before and of course to low puts him neutropenic. It is finding the medium point where his body will tolerate the chemo and be able to keep his counts down that always seems hard for us. I am not sure next Monday if the doctor decides to increase the Methotrexate and 6MP, we will have to see.
We have two weeks left of school and then it is time for summer. I am traveling a bit for work this month but looking forward to our vacation in July. We will head to Camp Sunshine for the week. the boys had a wonderful time last year, eventhough Nick was on steroids. Keep praying for all our cancer kids. Karen

I know it has been a week and a half since my last post. I guess no news, is good news. Nick was really good on his steroids last week. He spent most of Saturday in pain all day but was back to himself by Sunday morning. We were on top of his pain this time because Nick kept asking for the medicine. We decided to stick with the Tylenol w/codeine and avoid the morphine. We all had a great/busy long weekend. Nick started his weekend with a playdate at Brady's house. He had a lot of fun swimming and I always feel that is the best exercise for him. We ended our weekend by going to the beach on Monday with the Love family. The day was fun for the kids. We always try to load up the sunscreen on Nick, give him a hat and have him wear his T-shirt when not swimming. The beach experience is so different this year than last year. Nick did not have hair last year and always wanted to go to the beach. I know we were very nervous about going and being in the sun to long. We would leave for the beach early in the morning and be home before lunchtime. This past weekend we stayed until after 1pm. The reason Nick will always need protection on his head is because of radiation back in Dec. 08. The doctor had told us that Nick should never have his head in the sun.

I have to tell a story about Nick: On Sunday we were on our way to Auntie Lisa's house for a cookout and swim in the lake. While we were in the car Nick noticed he was bleeding on his leg. I could not look back but all I heard from him: "Mom, I am bleeding, my platelet count must be really low, I do not think I have any platelets left. I hope it stops bleeding soon." Of course I looked back immediately and it was a tiny scab he had scratched, with a little blood showing. We had a good laugh (knowing he would be fine), but it reminds us of how much Nick knows at the age of 6..... things he should not worry about.

I took Nick to clinic yesterday. His counts are really good and the first time in over a couple of months I have seen them this high:
WBC: 8.0
RBC: 10.4
APC: 5,500

The DS Update: We ended up buying Nick another DS (refurbished model) and then we found his. I found it on our kitchen counter behind the knife set, an unlikely place for it. When I asked Nick about it he said he had forgotten he put it there. He was hiding it from Tom. These are times when you just have to laugh about it and move on. Of course all the nurses at clinic were wondering if we had found it and were happy to hear he did find it. Nick's friend Alayna at clinic even made Nick a star with beads because she was sad for him. The family was at clinic yesterday and they played the whole time. I have to say Thank you to the Cote family for offering there DS to us.... very thoughtful of you all.

Nick is very comfortable with his Monday friends at clinic. We have met some really great people and while the whole journey is not fair, you know that you are not alone. Karen

Clinic Visit and Doses Lowered

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

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'.

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

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.

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.