It is always an eventful week when Nick is on steroids. We just never know which way his mood swing will go. Tuesday he went to Prospect Hill and did great. The teachers said he was a little sad, but then played with his friends. On Wednesday he had his big play date with Michael. It has been a couple of weeks since the boys have played together and Debbie bravely took Nick for the day. I know Nick had fun playing at his house and then going to Michael's school to pick him up. (Michael's full day) Nick was so tired that night when he came home. It was funny because he walked in the door and told everyone to be quiet (we had auntie Michele and Uncle Norm over) and then fell asleep on the couch in about 5 minutes. Thursday was a rough day at school for Nick. The nurse ended calling (all the phone numbers we gave her) and eventually got a hold of Greg. He was feeling 'homesick', as he calls it and melancholy. After talking to Greg, Nick agreed to stay in school until dismissal and Greg picked him up. He was suppose to go to Prospect. They went to lunch together and then Nick slept in the afternoon. Friday at school proved to be the same thing. It is so hard because we are trying to figure out when he has had enough or if we should keep pushing and make him get through the day. It is only half day and we want him to enjoy the school day, not have a miserable time. He goes through a lot and we do the best we can at 'picking the battles for him'. The teacher is great and she gives him options to relax in the book corner or go to the nurse's office. We agreed to have him stick it out today and take the bus home. I think I will work with the social worker to find out ways to make him feel comfortable during steroid weeks at school. I'll have to find a book to read with some ideas.
Looking forward to the weekend and the party. Two more does of steroids and then a break for 2 weeks. I do not like watching Nick change and feel so sad at times but I know he will be back to himself in a couple of days. Take care.

Started Another Round of Chemo

Nick had clinic today. He started another round of chemo. Vincristine, Methotraxate and antibiotic through the port. He is back on steroids (5 days) and 6mp at night (14 days). Clinic was quiet this week, much better than last week. I think our busy weekend caught up with him and ended up taking a 3 hr nap today. He is still up right now and in good spirits. The doctors have increased the 6mp because his counts are still high. We were prepared for this and understand why this is necessary. The purpose of increasing the dose is to bring his counts down, which can be scary going into the flu season. There have been some kids out sick in his class and so far his body has handled everything okay. We will get ready for the steroid craze this week and hopefully he will not be in so much pain by the end. We always try to look for the signs if he is feeling pain but he is so tough that by the time we know, we are reacting to it. The boys will also start afternoon daycare (tues.,wed.,thrus) at Prospect Hill. Nick is in half day Kindergarten and tends to get bored when he is home and I am working. Our work schedules have been a little hectic and Nick feels very comfortable at Prospect. He will see his friends again and Colby will join him in the late afternoon. The teachers are wonderful and understand Nick's mood swings and help out however they can. It's a little stressful because we always worry about the germs, but again, Nick wants to play and have fun. We still have our family helping out on Mon. and Friday's, which is a huge help and we appreciate it.
This past weekend we decided to take the boys to a corn maze and apple picking. They had a blast. We were worried Nick would be tired during the corn maze and he made it through the maze for the first 20 minutes. We were almost done, finding 3 mailboxes with stamps and then he decided to take a break. Tom was in the back pack on Greg's shoulders and it was a good time to leave the maze and find the fry stand. Colby and I stayed in the maze and the last mailbox. It was good bonding time for Colby and I and he was getting worried we would not find it. He is so sensitive and was worried where Nick was that he almost gave up. We found the mailbox together and he was so proud of the accomplishment. After that we headed to the apple orchards and picked two bags of apples. I think they have eaten about 6 of them since Sunday.
We are looking forward to this weekend and the big party. We'll give more details later but let's say we were completely surprised and truly amazed of the generosity and effort that everyone has done. Take care. Karen

Tomorrow Fund Clinic Visits Nick's Classroom

Hello,
We have had a good week. Greg and I thought it would be a good idea to have our Social Worker (Rachel) and Child Life Specialist (Lisa) visit Nick's class and give a presentation about him. We know Nick talks about clinic, his port, his medicine and all the things that 5 yr olds probably do not understand. We also thought it would help the kids understand Nick when he is moody or absent from school at times. Of course, I had to go and I was very curious to see the kids reactions to the 'terms' and the word 'cancer'. The kids were very responsive and tried to relate times to when they were sick and how they felt. The women showed how a port is accessed and how Nick receives his medicine through a really cool doll that had velcro patch where you insert the port. They brought a couple of ports for the kids to hold and feel. Nick described how his port gets accessed and what it felt like getting shots in his leg. He was really into it and not shy at all. Nick had packed his little port doll that he received the 2nd day in the hospital after his surgery for his port.
I was giving Greg an update about it tonight and I was thinking about how man times the word 'cancer' was said during the presentation. Greg and I usually say Leukemia, I guess for some reason it does not sound so awful. It just really brings you back into perspective and exactly what Nick is going through. We appreciated Rachel and Lisa taking the time to come to class today and we hope the kids have an understanding of who Nick is and when he is sometimes not himself. I know the teacher has done a great job with teaching the kids to wash their hands and use purell as often as needed. She mentioned the kids like the smell of purell, whatever works. The boys are settling in tonight to watch the opening premiere of the Clone Wars. They have been waiting for this night the whole summer. I can not believe we are approaching a year since Nick was diagnosed. So much has happened and Nick has been through a lot. Colby and Tom have also grown up in the past year. We were worried about Colby starting school this year, he had a rough time last year. Colby is adjusting very well and really enjoying 1st grade. Colby told us tonight: "Everyone that sees me in school tells me they saw me in the paper, it is cool to be famous."
Tom is the definitely our 'crazy' of the family. He is so active and so into the boys. He follows them everywhere and tries to play with them, but of course, the boys are not into sharing their toys with him. I can remember the days when Nick was home and always sleeping on the couch, as soon as he saw Tom, his eyes would light up. Tom (and someday he will know) kept Nick going at times and especially when Nick was feeling sad or lonely. Greg and I are so proud of all our boys and how each one has their own personality. Karen

Nick is in the paper. Check it out.

Hi Everyone,
Nick and Colby made the paper for their big day at the State House. They were both so excited to see their picture (in color) in the paper. The link does not show the second picture of the boys. It is the one I posted on the blog recently of the medal and award certificate. We sure wish Tom could of been there for the picture.


http://www.milforddailynews.com/news/x356129942/Bellingham-boy-receives-honor-for-fight-against-cancer

We took Nick to clinic yesterday. It was a very busy day at Hasbor Clinic. I decided to bring my dad (Papa Boston) and Tom with me. Tom needed his blood work taken for his 1 yr visit, (I am little behind on the schedule) and my dad wanted to see how the process works at clinic. We were surprised to learn that everyone must wear a mask when you are in the playroom at clinic. If the child can not/will not (due to age) wear a mask then they will be assigned a private room for their visit. Of course, Tom could not wear a mask and there was some confusion going on about 'where to put us', since all the private rooms were taken to by the younger patients. Papa kept Tom out of clinic most of the time and they found us a spot for Nick. I think it is great the pre-cautions they are taking with up coming flu season but makes it a little more crazy at clinic. We will adjust to make sure we keep those bad germs away. Nick's counts were very good.

WBC: 3.7 (a little low)
RBC: 9.1
Plts: 330 (normal)
APC: 2,600 (still a little high and they might adjust the chemo again next week)

Take Care, Karen

Port Access and Congratulations to Finn

Since I had the camera the other day from the State House, I thought it would be neat to take pictures of Nick getting his port accessed. We have come a long way since the start of his treatment. He used to cry and scream and really did not like the needle. He is now much more comfortable getting his port accessed and even helping the nurse out. Here are steps he takes:

1. Numbing cream was placed on his port prior to accessing. When we get to clinic Nick will take the bandage w/cream off.

2. The nurse cleans the area with something we call the 'stinky angel'. It smells bad, but keeps the skin sterile

3. You can not see this picture too well, but the nurse actually has a needle w/IV tube attached and she sticks the needle through his skin and into the port.

4. The nurse then attaches a syringe like needle and tries to draw blood. (Sometimes the port can move and the blood does not come out, that's for another day)

5. She fills up a couple of syringes

6. Nick helps her move the blood from the syringe to the test tubes. He really likes this job

7. There is his blood to be sent off to the lab.

He keeps the needle in to wait for the IV chemo to come. Once that comes, they send it through the port and then de-access the port. This is the only way he likes his blood drawn. He is not used to a needle in the arm.

Nick has been doing great in school and we are happy he is enjoying it and making new friends.

I have some wonderful news that I wanted to share: A family we have met at clinic, The Whelan Family, have just finished treatment for Finn. Finn was diagnosed with ALL T-Cell and followed the same protocol Nick is currently on. They just received the great news a couple of weeks ago and his last day (of all those toxic drugs) is today. Way to Go Finn, we are proud of you and your family can hopefully fall back into some 'normalcy' and more play time at home. The Whelan family have really helped us through our clinic visits and they have seen Nick at his worst and would always re-assure us that it gets better. They gave us advice and were a shoulder to lean on. We thank you Whelan Family. Take Care Karen

Nick the Ambassador

Today was a big day for Nick and a very humbling experience for all of us. The boys woke up eager this morning to wear their new clothes, a tie, shirt and dress pants. They looked so handsome and of course tears came to my eyes. (That is pretty much how the day went, I think my eyes were never dry). We then headed to the RI State House for the big press conference. I was amazed to see how many kids showed up, I guess 'skipping' school today is okay. The Governor gave a speech and then the Child Life Speciallist started with announcing the kids who have lost their life, 2009 Ambassadors and then Lifetime Ambassadors. They brought the kids out of the room and had them enter through a side door when their name was called. Nick got up and left on his own and waited in line w/o his parents. Colby would check on him during the announcements of the kids and then come back and sit with us. When they announced Nick's name he walked (I really should say strutted) up to the Governor to shake hands and have his picture taken. We did not originally tell Nick he was going to receive a medal, so he was very excited when he received the medal and a certificate. After the ceremony, we headed to the state stairs for a group picture. Nick and Colby sat on the first step and the Governor sat right next to nick. We were able to visit with our Clinic friends and even see the ones who are now in remission. This day was for RI to honor The Tomorrow Fund Clinic and all they have done (financially and emotionally) for patients at the clinic.

After the morning, we headed over to clinic. I think today was our quickest visit EVER. We were at clinic less than an hour, that never happens and Nurse Paula was great. She even let me take pictures of Nick having his port accessed. I will post those pics on the next blog. We missed Tom very much today but we know he much more fun at Nancy's house than us trying to keep him quiet during the ceremony. We will have much to tell him as he gets older and hopefully this blog site will help him understand as well. Karen

Chemo Dose was Increased

Hello All,
Nick went to clinic on Monday. His counts were good and he received another round of chemo. They have decided to increase his Methotrexate dose on a weekly basis. He will be 3% from maxing out on the dose. The reason to do this was because of his counts. He counts were still a little too high for his protocol, so this will bring his counts down some. He is on steroids this week and is doing well with everything. He is very emotional on the steroids and anything can set him off. Greg and I definitely watch what we say to him and look for the reaction. He was the star of the day today at school, which is great because he ended up having a rough day. Nick said it was to loud and we agreed that we would buy him some ear muffs and he can wear them whenever he feels like it. He did this at daycare and it worked really well.

White Blood Cells: 3.9 (Normal 5-10)
Red Blood Cells: 9.3 (normal 10.6-14.6)
Platelets: 337 (normal 150-400) - goodd
APC: 2,700 (They want to see this number around 1,000)
**The APC is a calculation of the immature WBC to the mature WBC.

As I have mentioned before it is National Childhood Cancer Awareness Month-September. In honor of this month, Governor Carcieri (of RI) will be holding a press conference in conjunction with The Tomorrow Fund next Tuesday at 10am at the RI State House. Nicholas has been asked to be an ambassador for Bellingham and will recieve special recognition and a medal. While we are so exicted he will part of this event, we can not forget the reason for us being there. Cancer Sucks. No child deserves to go through the treatment of cancer and what it does to their bodies. But, again, we can help these kids out there just by donating blood, platelets or become a bone marrow donor. (marrow.org). We will take Colby out of school to, as he is just a part of our journey too. The day will be remembered for all the kids who are there, the ones that could not make it and all the kids who have lost their battle to cancer. We will be sure to post pictures of our Brave Son. So, give your kids extra hugs and enjoy the moment.

A lot of people ask us how long is Nick's treatment, his protocol lasts approx. 2 year. I have figured out, if everything keeps on schedule, that we have 60 weeks left of his treatment.
Karen