2 to Go

Hello. We had clinic Monday and Tuesday of this week. Everything went very well and Nick was even somewhat happy. On Tuesday the Child Life Specialist asked him to participate in the arts and crafts activity and he did. He had a lot of fun and we even stayed a little longer than planned. We have 2 shots to go and one more round of high dose chemo and steroids. The next phase of the treatment is maintenance and this will last for at least 70 weeks. We are looking forward to the reduced dosage of the steroids, which should help Nick with all the pain he has had. Colby ends school next Monday and he is really excited to go see the new clinic. He has not been to clinic in a long time and I believe he is feeling 'left out' of the trips we take 2 days a week. For Colby, clinic is a place to meet new kids and do fun activities for a little while. The IV's on poles, kids in wheelchairs and kids with no hair does not even phase Colby. It is amazing how adaptable Colby has been to all the changes around him. We are very proud of him and can not believe his Kindergarten year is over. We are planning on sending Nick to Kindergarten next year, he will go half day. We are hoping to keep the boys close together during their school years and we felt Nick was ready to go. He is really excited about riding the bus.... the scariest part for Greg and I. We prefer to drive him and keep as many germs away from him as we can. We'll deal with it in September. Next week we have my sister (Christa) and family driving up from NC. We are looking forward to some time off and enjoying the cousins being abel to see each other. Take care everyone, Karen

Oh, I wanted to mention that Nick's hair is starting to grow back. We are pretty excited about it and coming just in time for the summer and sun. I think he is already sick of everyone telling him they see hair on his head. We love it.

Nick spiked a Fever

I was surprised yesterday morning when Nick woke up and was very hot. He insisted on wearing feety pj's to bed the night before, which did not help his temp. We tried to cool him down some by changing his clothes and putting him in a warm bath, which helped some. By lunchtime, I realized that we really needed to take him to clinic to find out how his counts are. His temp. was wavering around 99-100.8. Anything over 100.4 requires us to go in. Nick was great and agreed to go. (I had to bride him with a McD's meal). He did not even fight when the nurse accessed his port and we played games while waiting for his blood work to come back. The good news is that his ANC level was NOT below 500 (if it was, we were going to be admitted), so we were sent home and put on 'fever' watch. Nick woke up this morning full of energy and a smile on his face. He feels much better today and we hoping it was just 'chemo' fever. This week was his second dose of the Meth. chemo and I think his body was having a reaction to it. We are happy that we can relax (a little) and enjoy the weekend. The rest of his counts were low, but will hopefully go back up soon.
WBC: 1.5
RBC: 8.6
Plt: 102
Have a great weekend. Karen

3 To Go

After a hard day at clinic on Monday Nick now has 3 more shots to go. It was not an easy day for Nick as the steroids were raging and the back pain was causing discomfort but I think what tipped him over was the thought of the shot. Karen and I both recognize the amount of pain the shot creates. We were talking today about what it must be like to know it is coming and there is nothing he can do...and oh how he tries to get out of it. "Not today" or "I just have to tell you something" are some of his most infamous rants against getting the shot. With that being said, I have nothing but the greatest admiration for Nick. He bounced back great today when we were back there for his methotrexate. He was smiling and happy, which in turn made for a much easier morning. I will divert a minute here and tell everyone about some amazing people out there who have been a great support cast for Nick. Even Colby gets excited when Nick gets his "Angel Mail". The "Chemo Angels" are people out there who volunteer to send a letter sometimes a gift, other times a poem or a picture to cancer patients while they are undergoing there chemotherapy. Nick has had two "Angels" Laura and Trista. These two ladies really have put smiles on Nicks face as well as the rest of the family. The thought of not knowing yet still caring and never letting down and just being consistent is a show of true kindness. The organization is obviously run by people who understand the needs of cancer patients and do a seemingly small thing that turns into a monumental gesture to those who receive it. Back to another week in this phase of the treatment and closer to the next. We wish all well.
Greg

The Shannon Family

Hi All,
This week we were at clinic on Monday and Tuesday. Both days were uneventful, which is good. He received his shot (4 to go) and the Vincristine chemo. We had to go back to clinic on Tuesday for the Methortrexate chemo. He came home on Monday with his port still accessed, so the clinic could administer the chemo on Tuesday through the port. He did a great job protecting it. Tuesday morning was his Kindergarten orientation. The school had all the kids line up behind the cone with their teacher's name on it. Then the teachers brought the groups around the school and even for a bus ride around town, while the parents stayed back for the presentation from the principal. Nick said he had a fun time on the bus except it was 'so bumpy, that his bum hurt'. He seems really excited about going to Kindergarten in September. I decided to send him to school (Prospect Hill) today. He said this morning that he did not feel like going, but was happy once we got there. I know he feels comfortable at school and the teachers are wonderful with him and the kids. They really go out of their way for Nick, we can't thank them enough. Greg and I believe Nick still needs to be with his friends and socialize, even on the days when he feels off a little. Today was one of those days. Nick said he was feeling 'homesick' when I picked him up today. I know being back on the steroids has his emotions going through a roller coaster. He will relax this afternoon and then off to see Joey tomorrow and maybe Michael on Friday.
Take Care, Karen

Nick Counts on ONE hand

Hi All,
Nick received his 6th shot today and now can count on one hand.... 5 to go. It is amazing/hard to count back to 30 and everything he has been through. He still walked through the door excited to be almost done with the shots. I do not think he really knows how far he still has to go, but we keep plugging away day by day. He keeps us happy all the time, with Colby and Tom cheering him on. We are enjoying the warmer weather and Nick is actually getting used to wearing his baseball hats. We had are friends over this weekend and it was really great to see everyone. A last minute plan, but fun we had.
Next week Nick will start clinic two days a week until the shots are done. One of the Chemo's he was receiving is done (Doxurubicin), due to the dosage amount. It is so powerful that you can only receive the max dose and then we move on to another one (Methotraxate). The other one can not be combined with the shot so we go the day after. Greg has been helping a lot with double duty and clinic. Our work has been crazy, but everyone has been very flexible and helping out when they can. We truly appreciate all the support. Love, Karen

A pretty normal week

Nick has completed another week of his shots. He has 6 left. We are telling him next week that we can count the number left on one hand. Nick had a lot of pain in the beginning of the week, but has steadily got better as the week has progressed. So much so, that he went to school yesterday. They played outside all morning as it was a nice day. Nick really pushed himself and was doing his best to keep up with the other kids. He really gets quite bloated and large after the steroids. You can see he is uncomfortable, but of course he just deals with it. We try and limit the amount of food intake during this time, but it is hard when he is tapping you on the forehead at 3 am asking for cheez-its. That is when you realize he has no control over these feelings. It is great when Nick comes off the steroids and starts becoming himself again. He and Colby really play well together when he is feeling good although he does take advantage of Colby's good nature. Tom is all over the place and the two older boys are starting to understand that he is a person and he wants to be involved. They don't necessarily want to involve him all the time, but both of them are great big brothers. We are hoping for a great holiday weekend and wish you all the best.

Happy Mother's Day - A Weekend at Hole in the Wall

Hello All,
We had a wonderful weekend and can not say enough thanks to Hole in the Wall. I have attached some pictures and I can take you through them. Our camera battery died right at the Mother’s day breakfast and for some reason the pictures are out of order. I thought I was more digital inclined, but I guess not.

The first picture is coming into camp. The white building on the right is the administration building. We stopped their first and were greeted by Beth. Beth was our ‘Family Pal’ for the weekend and specifically there to take care of Tom for us. She was awesome and so good with Tom. He took right to her. It was kind of different to have someone carry your baby around while you had time to run after the boys and just relax. We also met Eric, another ‘Family Pal’ for us. He was great with the boys and Colby really took to him. The big building is the dining Hall. Greg and I can both say the food was great. Even though you have a camp style feel to the whole place, the food tasted homemade. The next pictures are of Sunday morning, Mother’s Day. The councilors decorated the dining hall and all the kids gave their moms presents. We sang songs and all the Mother’s received roses. This was definitely one of the best Mother’s Day I have ever had, especially with Tom this year. J

Let’s back up to Friday night. We had dinner and then headed over to the bon fire. The gang introduced themselves and Bruce kicked off the night with flame throwing. You can see Colby enjoyed the Smores. (Eric is behind them) We stayed in LuLu’s Lodge. It had the ski lodge feel but very clean and warm feeling. We had two rooms (2 bunks in each) with a joining bathroom/shower. You can see the boys getting ready for bed. On Saturday morning Beth was waiting for us in the Lounge area of the Lodge. She was ready to take the boys to the gym before breakfast. The gym was huge and a great place for all the kids to hang out. Saturday they had a bunch of activities for the families to do. We headed over to the boat dock for some fishing and you can see Colby caught a fish, although he refused to ‘kiss the fish’. We stopped in at the huge tree house and then the boys went to woodworking and each made an Army tank. After lunch Greg and I had time to ourselves. Beth and Eric played with the boys back at the lodge while Greg and I walked around the lake. We really enjoyed the time to ourselves and catching up with each other. After rest time we headed over to the rock climbing wall. We could not convince Colby to try, but they both decided to be spotters for us. The zip line was not working, so Greg and I repelled down the wall. The camp had stage night after dinner. The kids were so cute and most of them, not shy at all. Colby eventually got up and played the drums for the crowd. Sunday we were up bright and early and of course Beth was waiting for us. She took the boys (in the limo as they call it) to the gym, while Greg and I sadly packed up. After breakfast we headed back down to the boat dock for more fishing. And wouldn’t you know it, Colby caught the first fish of the day. He was so excited. The we headed over to Archery. The boys really loved it and I think Greg is getting some ideas for home. We ended the day after lunch and thanking our family pals.

We (I am sure greg agrees) can not put into words how wonderful this place was. The staff really made you feel at home and such a positive vibe throughout the place. We hope Colby will go to camp to next year, you have to be 7. Enjoy the pictures and we hope EVERYONE had a wonderful Mother’s Day. Take care.