A normal day at clinic and some new athletic milestones

Nick, Colby and I went to clinic today as Karen is travelling again. Everything was quite routine except that Nick forgot his shoes this morning (now before anyone blames me, I told him, "I saw your crocks outside go out and get them and get in my car". He didn't get them). So he was trying to hide his feet but to no avail as Lori the nurse came in a pronounced to all he had forgetten them. It was pretty funny. Counts are good. We are going to increase the methotrexate next cycle and probably the 6mp the cycle after that.
APC:2100
WBC:3.3
HGB:10.9
PLTS: 392
On to my second subject in the title. Nick rode his bike with Karen and Colby to Walgreens on Saturday. This is by far the longest bike ride Nick has ever gone on and I was expecting that he would be useless the rest of the afternoon but we had forgotten about a party at my sisters house so we packed the kids up and headed over. Nick, Colby, Joey and Brian all swam across the lake with Mitchel and Alex. Yes, across the lake. They all wore life jackets but swam the whole thing. It is not a short swim so Karen and Amy went and picked Nick and Joey up in the paddle boat while Mitch, Alex, Colby and Brian all started walking back with the snapping turtle that Mitchel caught. Luckily for them they were picked up by Mitchels friend and drove home. Not sure Colby or Brian understood that the walk was a mile with no shoes on. So Saturday was quite an adventurous day for the boys and of course Tom was hangning back at Auntie Lisa's beach trying to surf on some body boards. For a kid who turns two Saturday he sure has no fear! Happy 4th to all. Have a safe and great holiday.
Greg

I can definitely state steroids were okay physically this week but not as much mentally. It is just one of the side effects we are worried about, his emotional state. He was feeling great by Mondy. We had a busy weekend with the boys…. I know you have heard this before, we like to stay busy and enjoy our time with family and friends. The boys ended their last day of school on Friday and it was off to see Toy Story 3 in 3D with Michael and Maggie. They loved the movie and I think Debbie and I enjoyed being inside in the AC, it was hot that day. Saturday was Colby’s baseball pool party at his coaches house. I brought Nick with me so he could play with his buddy Brady. Nick was so excited to go, but then decided he did not want to swim when we arrived and he would feel more comfortable going to Owen’s Bday party at the Kenshu Karate. I guess it was a good decision for all of us because he had a blast and was exhausted by the time he got home. He started to feel pain by late Saturday and of course slept with Mommy that night. We decided to go to the beach on Sunday for Father’s Day. Nick was excited to go (sound familiar) but once we got there he kept asking us ‘why are we at the beach so early in the morning, we should come later in the afternoon’. I had given him a Tylenol w/cod before we left and I think the medicine was catching up to him. Luckily he slept for an hour under the towel and woke up as our NICHOLAS. He was so happy, but decided it would be best to eat 2 hotdogs instead of swimming in the water. Colby and Tom loved the water and really had a good time together. Colby is our fish in water and Tom just follows the FUN.
I took Nick and Colby to clinic today. Colby was actually shy at first with everyone and was hesitant to see Nick’s port get accessed. (sometimes I need to take a step back and understand his feelings and what he must be thinking. I have grown so accustomed to it, like second nature). Colby is growing up and we are proud of the strides he has made with our journey and the adjustments we have made at home.
Nick’s counts were high, which we have not seen in a while. They are high because of the steroids (it can give a false read, but still okay):
WBC: 12.3
Red Blood Cells & Platelets: Normal
APC: 9,000

I believe the doctor will decide to increase his 6MP and Methotrexate starting the next cycle.

Happy Father’s Day to the most wonderful Father’s, husbands I know. My husband, my dad (Papa Boston), and Papa Charlie. We love the strength of our family has shown and continues to stay strong. Karen

Sorry for the quick update, I am in Penn. on business this week and just got online. I am traveling again next week, so Greg is holding the fort down.

Ugh Steroids

We are half way through steroid week and Nick is good. He seems more down lately than usual and very sensitive. He is eating a lot and a mixture of all the stuff he usually eats. It is the last week of school and I am not sure if he is just so excited about everyday during spirit week or really not feeling well. He has complained the past 2 mornings that he did not want to go to school. He gets all dressed up in his clothes and then decides he wants to stay home. We are making him go to school since it is the last week and there is so much fun stuff going on. He did not make it to daycare all week either. Today was his last day there for the summer and with him being so upset this morning, I decided to have come right home after school. Of course, the wonderful daycare center completely understood.
It just times like these that I hate watching him change so much over a week period. I know he will be back to himself hopefully by Sat. or Sunday. We have a busy weekend planned with grad. & Bday & baseballs parties, I really hope he gets to go to it all. He is sleeping now and his brother will be home soon to play.

I found this on another Caringbridge site and it sums up what I am sure most parents feel:
When you hear of a child with cancer your heart immediately goes out to them and you can't help but feel sorry for them. Facing the mortality of your child has to be the worst experience any parent faces. As a parent of a child with cancer, the emotions you feel are like a ride on an emotional roller coaster. The bad times are likened to an extended bereavement and the good times are compounded, with joy and sadness at the same time. Your emotional state is somewhat heightened to the point of being hyper sensitive and extremely protective. The only way to get through the emotional roller coaster is to think positive and be positive about the whole situation. (This is easier said than done.) We are told by the experts, childhood cancers are easier to cure than adult cancers, although this is some consolation in the early days, it is short lived, when you learn more about the cancer you have and the cocktail of drugs needed to cure the disease. With each drug administered you have to deal with all the potential side affects, the range of which is frightening at best but terrifying in general. The effects of cancer on the family will test it's relationship to the limit, some families won't make it but the ones that do, I believe come out stronger for the experience. The most important piece of advice I can offer any family in this situation is to be honest with each other. And not to underestimate the child's understanding of the situation.

Last Week of School

This week is the last week of school for Colby & Nicholas. We are so excited for the boys to finish this week and start summer vacation. I can reflect back in Nov. 08 when I was signing Nick up for kindergarten. He was dx in Oct. 08 and I was not sure if he would make it to kindergarten come Sept. I had the option of signing him up for half or full day. I originally planned on sending him full day but of course ended up signing him up for half day. Definitely a good choice, given the circumstances. He missed quite a few days this year but we know he is a very smart kid. We believe he has excelled in kindergarten and is now ready for 1st grade. We always have in the back of our minds side effects, especially ones from radiation. We will be taking him back to neuro psychologist sometime this summer for an evaluation. I really do not have much concerns for today, I believe he is right on course for his age.
His counts are good this week and the doctor has decided not to change his 6mp or Methotrexate dose for this cycle. He received Vincristine, Meth., 6mp and steroids. Yep, another steroid week.
WBC: 4.6
Red blood cells and Plts: normal
APC: 2,500

Take Care, Karen

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