Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Thursday, September 16, 2010

Wow, No Pain! Ambassador Day for Nick

This week has been much better than last, which is why we try to look forward and take things week by week. Colby will try again this weekend at football and we hope to see him continue to shack his fear. He does not want to quit and we support his decision. He did end up with a fever on Tues. night and into Wed. I am thinking he caught a strand of it from Tom’s virus last week.
Nick ended steroids on Tuesday morning and we thought for sure he would be in pain by the afternoon. To our delight he has not complained about pain at all this week. His appetite was there but I think he was to busy to think about any pain. In the past he would lie on the couch and watch TV and not feeling up to do anything. He has been busy with school and baseball practice this week and just being active. He is back to his smiling self again and we love to see it.
Today was a special day for Nicholas. He was awarded a medal from the Governor of RI and represented the town of Bellingham as an Ambassador. The Governor is very supportive of the Tomorrow Fund and has been giving away awards to the kids for the past 8 years.
The head of the Tomorrow Fund, Dr. Swhaltz gave us a great analogy today. She talked about how Hurricanes are always forming out to sea and we are made aware of them through the news. We go out and buy groceries, milk, etc.. and get ready for the storm. Sometimes the storm hits big, sometimes it blows over and other times you are in the eye of the storm. All the families and patients who have cancer do not have the chance to be ready for the storm. You are told your child has cancer and the next day your world is turned upside down. There is no notice but we as parents have to ride the storm and do the best we can for our children. Kids are resilient and the parents are there to fight for their child.
As I mentioned before, this month is National Childhood Cancer Awareness Month. It is through donations that the Tomorrow Fund exists to help families in financial need and support. They receive 50-70 newly diagnosed cases of childhood cancer a year. They unfortunately expect this but continue to look to the best possible treatment available in the USA. Here are some facts:

• Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
• Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
• The cause of most childhood cancers are unknown and at present, cannot be prevented.

• One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
• On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
• While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
• Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
• Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
• Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

Greg took Nick on Monday to clinic and his were good. They have decided to increase his Methotrexate dose. He is still not at 100% dosage for his protocol but they keep increasing until we reach it. In the past when they increased the dose he would have a fever or be neutropenic so then it would be lowered again. It is a balancing act on Nick's body to see how much he can tolerate. Some kids can tolerate the full dose and other's can not. Nick seems to tolerate the full dose for a couple of weeks and then his body gets tired, fever starts and back to the ER. We hoping this will not happen this time around. Karen
WBC: 7.2
RBC: 11.3
APC: 6,300

Sunday, September 12, 2010

Challenging week/weekend

We have had an interesting few days. There have been challenges, melt downs and smiles for the past few days. I am not sure where to start this blog but I will back it up to Friday morning. Nick is on steroids and had a tough week last week for school. He was really moody at nighttime and ended up sleeping in our bed during the nights until sat. Friday morning was really hard for him. He did not feel like going to school and was asking to be picked up after lunch to come home. He is full day now and the teacher is wonderful with him and lets him rest on the mat when needed. I explained this to him on Friday morning but he still cried at the bus stop and went to school. I called the school around noon to check on him and they he had just come in from recess and was ready (his quotes) "To walk home and see his mom." I picked him up and he was fine and happy once he got home. Saturday was no different with his mood swings. He was very excited for the sleepover at Papa Boston's house that night but kept asking all morning when he could go. Nick was upset with every little going on in the house and Colby was making him upset. (eventhough Nick was bugging him to) He decided to not attend the birthday party the boys were invited to and stayed home. He play his first baseball game in the afternoon but was not really into it. Again he asked to go home but we convinced him to stay and be with the team. Once Papa showed up Nick was all smiles and had a great time being away for the night. Papa said he was good but still has those moments when he really wants something and can get upset quickly. We believe these steroids just make him so moody that once he something stuck in his mind he wants and does not get it... he changes and the meltdown comes. His last dose of steroids (for this cycle) is tomorrow morning. Hopefully he will be okay at school and no pain. Greg will take him to clinic in the afternoon.
Colby has been playing football for almost 6 weeks now. He has had his ups and downs with the sport but continues to tell us how much he likes it. The challenge we have is during game time. As soon as he sees the other team he gets scared of them. The coaches really try hard to make him feel comfortable and tell him everything is going to be okay. Today was very hard because he turns his emotion into crying and not wanting to play. Greg and I are not sure where to go with his behavior because you practice to play the game. Greg and I want the best for Colby and to overcome this fear because we believe the fear is generated from football alone but other things. Emotions are running a little high tonight but felt like I had to write it all down. I am traveling on business the next 2 days and we have laid out a couple of things for Colby and Nick to do while we are gone.
I have to include Tom in the blog to, he was a little cranky this weekend to. He was sick with a rash and a little fussy. As soon as we gave him tylenol he was back to himself and feeling much better today. He continues to amaze us with all his sentences (not just words), his smile, laughter and giving us hugs.
Although I feel like I am complaining in this blog, we move forward and make adjustments.... a learning experience that will challenge us to the end. That is why we have kids right??