HAPPY 6TH BIRTHDAY NICHOLAS

Our boy turned 6 today. We are so proud of Nicholas! Our family tradition is the birthday person gets 'breakfast in bed'. Nick told me last night he would like to have breakfast at 7am. To our surprise he stayed in his bed all morning until 7am and we brought his tray up.

Above is the picture of Nick patiently waiting for his breakfast. He is so wonderful and I can not say enough about how happy we are today. We are going to enjoy the day at the movies, decorating eggs and finally having cupcakes. I'll post more pictures later.

Exciting week for Nick

Nick had a very routine visit to clinic on Monday besides the fact that he went early due to throwing up when he got to school. After clinic he threw up again but never really felt bad besides those two moments. He probably got sick from the morphine and the chemo but who is to know. Nick had a little pain over the weekend so we did our normal maintenance...start with tylenol w/ codeine follow with morphine if that is not enough, ice packs anything to relieve it. Karen met with Nick's doctor on Monday and she had some concern that he should not be feeling this much pain so we will probably try and wein him off the steroids next time and see how that goes. Nick has a single mindset this week. Friday is his birthday and he turns six years old. Where does the time go. He is having a sleepover with Michael, Joey and of course Colby. They are going to go to the movies and then color easter eggs. It will be a fun evening. I think there might be some tired boys on Saturday.
That is all for now...If you see Nick wish him a happy 6th Birthday!!

Long Day at Clinic on Monday

Hello All,

I have to start out saying that we had a great Sunny weekend and had fun playing. My friend from college and her family came down from Maine for a visit. Her little boy, Dawson is the same age as Tom and the 2 of them had so much fun together. It was great to see you Frannie. Nick was feeling great all weekend and he did go to school on Monday. Greg & I both took him to clinic on Monday. I was not suppose to go and Greg was home from work, but at the last minute I changed my mind. I think was concerned about the IVIG infusion and being the first time, I just had to go and be with Nick. We ended up being at clinic for over 4 hours, definitely a long day. Nick was scheduled for: IVIG, monthly does of Pentamine, Vincristine and Methotrexate. They also gave Nick Benadryl and Tylenol to pre-treat the IVIG in case of an allergic reaction. Just thinking how much chemo and other medications that were administered to Nick all in one day is amazing. Of course Nick was great and took a nap under the 'warm' blanket. The clinic has a blanket warmer and the nurse brought him a pillow to relax. Nick even took his pills w/o being coated with the Starburst. On top of everything Nick has started on 5 days of steroids and 14 days of 6MP. The doctor lowered his 6MP dose because he was neutropenic 2 weeks ago. The 6MP is the first chemo to be adjusted according to his counts and how much he can handle. I am not sure when he will go back to the full dose.
Counts:
WBC: 4.3
RBC: 10.9
Plts: 286
APC: 2,500

I am constantly reflecting back on Nick's life and our lives over the past year and a half and everything we have been through. People always ask us, how do you do it all? How can you handle a job, taking care of kids, and then 'Nick'? The simple is we just maintain. The real answer is we have been blessed with a strong support system from our family and friends, a strong family bond and Nick to keep us going. We do not have a choice but to keep fighting hard and keep believing. Not everyday is going to be how we would like it, but that's okay for us, we have learned to be very flexible and enjoy our time together. Anyways, I thought I would share how our world ticks.
The steroids are going okay this week and we actually forgot to give it to him this morning. I believe this is the first time we forgot and we can make it up at the end of the week. We will watch for the pain to come and hope to make Nick comfortable. Take care, Karen

Just a quick update today. Nothing new to report. Nick is great and really feeling much better. When he was admitted to the hospital last week, they stopped his 6MP dose, so he has been off this pill for 2 weeks now. I really thinks it make a difference on how he feels. The weather has been great and we might actually hit 70 degrees this weekend. It's time to bring out the baseball hats for Nick and he is loving that. We bought so many different baseball and beach hats last year due to his lack of hair and protecting his skin, that he is used to them now. He left this morning for school wearing Red Sox. We hope to enjoy the weekend and have lots of outside time. Take care Karen

Quiet Weekend and Clinic Today

Nick came home late Friday afternoon. He was very happy and understood he could not go skiing but chill for the weekend. He is so smart and with a smirk on his face convinced me to stop at Game Stop for a game. He picked the new Mario Wii game and I will say it was a great purchase. He played it all weekend. Michael and Debbie came over for pizza on Friday night and the boys enjoyed the time together. On Saturday, my mom and Joey came over to stay for the night. I had a little time away and the boys enjoyed playing games together. Greg and Colby came home on Sunday afternoon and they had a great time. Colby learned how to ski and playing with his friends. Nana & Papa Charlie had a sleep over with Tom on Friday night. I think Papa is still recovering from our Tornado Tom. (thank you)

Nick was a little shy to go to school today but I showed him all the wonderful get well cards the kids made for him. (Thank you kids, you do not know how much it means to us) I explained how much they missed him and he was ready to go. When he jumped off the bus today there was a smile on his face. We understand how tough it is to get back into a routine after a roller coaster week. We know he feels comfortable at clinic and the hospital and then finding his niche at school can be tough. His teacher is wonderful and helps out however she can.

Clinic was good. His counts are still pretty low:
WBC: 2.8
APC: 1,500
ANC: 800
In the hospital last week they took blood and checked for his antibody levels. This is a typical test taken every once in a while for children under going treatment. His last test was normal. Today we found out the results and it is low. He will receive an infusion of IVIG. I know our friends who are going through our journey understand this medicine. This is the first time Nick will receive it. It is to boost his immune system. His body is tired and that is the best word to sum it up. The multiple of virus's during the winter season and the pneumonia has really hit his system pretty good. The chemo brings his immune system down and he does not have enough immunities to fight all the outside germs, all the time. The doctors at the Tomorrow Fund have done a wonderful job through his protocol and giving him the right treatment. Greg will take him next week for his scheduled visit, start another cycle and receive the IVIG. Karen

Definition for IVIG:
Intravenous immunoglobulin (IVIG) therapy is helpful to some people with primary immunodeficiency (PI) because it temporarily replaces infection-fighting antibodies that some PI patients are missing

IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibodies levels to prevent infections and confers a passive immunity

Day #4 - Scheduled to go home

Hi All,
We should be going home today. Nick is feeling great but his counts are not exactly where we would like to be. His WBC is now 1.9 (yesterday 1.8) and his ANC is 380. (should be 500 to be released) I am waiting for the Doctors to come in and give me the protocol for leaving. They know Nick is eager to go but we will have pre-cautions to. I am thinking just living in a 'bubble' for a day or two so he will have a full recovery. I am sure Nick will be sent home with some antibiotics to, but as long as we can go home, we can adjust. Nick is already trying to line up playdates and really misses his friends. This will be the hard part, small visits at a time. I'll post more later.

I forgot to mention that over a month ago we booked a ski trip through Colby's Karate class to Stratton Mtn. Colby is so excited to go and we never book events a head of time because of Nick. This time we took a chance. We were hoping Nick and I could go up for the night (tonight) and then ski on Saturday and then come home. Nana & Papa Charlie are taking Tom for his first over night sleepover. The goods news is that Greg & Colby will be leaving to go up to the mountain today. Colby is taking a ski lesson tomorrow and then go tubbing. Nick is bummed he can not go, but he will get extra attention at home, so hopefully it works out for both of them.
These are the times that upset Greg & I personally, we can not be together as a family, but we know Nick is fighting and as long as he continues, we will beat this.

Day #3 In-Patient

11:30am Update:
Nick's ANC is 280. He is moving in the right direction, which is good. They will check his ANC again tomorrow morning and hopefully be able to go home.

First Update of the Day:
Just a quick update because I do not have all the information. We think Nick's fever has finally broke, he did not spike again after last night. His stats are great and normal, still no need for the oxygen. He is still on antibiotics and they not introduced any new ones. He will definitely be spending tonight at the hospital and maybe a possibility of going home tomorrow. We do not know his ANC number yet, be know the white blood cells is 1.8, not a big jump from yesterday (1.1), but at least moving in the right direction. I will be heading over to the hospital this afternoon and spend the night with Nick. The child life specialists are keeping Nick active and giving him projects to do. Yesterday we made a truck out of wood and nails and last night he built another Lego car with Greg. Today he has been playing the Wii a lot. I am hoping that tonight we can venture out of his room for a little while and down to the playroom. It would be nice to change things up a bit, but it all depends on his ANC number. I'll post later today and let you know how we are. Thanks for checking in. Karen