Happy 2nd Birthday Tommy

Tom will be 2 tomorrow and our day is filled with fun, fireworks, pool and spending time with close friends. I have ordered an American Flag cake to celebrate with Tom tomorrow. I can not believe he will be 2. He was only 3 months old when Nicholas was dx and there were many nights I was not home with him.

The boys slept over Auntie Michele's house at the Cape last night and Greg, I and Tom drove down today. We had an awesome day and the boys ended up jumping off the bridge and into the water. Colby was very scared but once Greg picked him up there was no going back. Nick had Brittany hold him and two of them just counted to 3 and away they went. As everybody was packing up the beach stuff, I sat with Tom in arms for awhile. It felt so good to hold him and listen to the ocean. Of course as I thought back over the past 2 years and how much Tom has grown tears were coming to my eyes. He has adjusted to his surroundings and continues to challenge us each day. We love you so much Tom.

I forgot to mention that yesterday a playdate for nick turned into a Mohawk. He lookos so cute and it really suits him. I will post pictures of him soon.

Have a safe and happy 4th of July. Karen

Our Three Sons

Wow! Our 3 wonderful boys. We recieved the pictures from Flashes of Hope this week and I could not resist uploading this one. Flashes of Hope came to Hole in the Wall over Mother's Day Weekend and took a bunch of pictures for us. They are a non-profit organization and their goal is to put smiles on kids faces and hold the memories of them. Colby, Tom & Nick - this picture truly relects their personalities.

You can see how far we come in year. The picture up above is 2010 and the other one is 2009 both taken over Mother's Day Weekend. Enjoy every moment with your children, they grow up to fast.

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