Update:

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 10, 2009

Meet the Teacher Night

Tonight was meet the teacher night at Colby & Nick's school. We had Papa 'Boston' babysit the kids today and they were excited to see him, as always. Nick kept telling us he wanted to go with us but we told him it was an adult only night. I have met Nick's teacher prior to school, we covered his protocol and discussed Nick's health and some watch 'out' signs she needed to know. His room was great and I was sitting there the whole time excited to actually believe my son is now in Kindergarten. For one of the first times, there were NO tears in my eyes, just admiration for our son who will make new friends and hopefully enjoy his first year in school. On his table there was a cookie made for each parent with a note to us. It was so cute and we soon realized why Nick wanted to be there.... to make sure we did not eat the cookie. The teacher told us all the kids were worried that their parents would eat the cookie and not save some for them. Of course we saved the whole cookie for him and Colby to share. There were so many times when I felt fear of Nick going to school and is it the right decision right now. Of course Nick would never let us keep him in the 'bubble' we feel comfortable with. He gets up every morning looking forward to the bus and school. Colby's classroom was very busy and very active. I was amazed to see how many learning stations he has in one day. Greg and I were tired just listening to his day. He enjoys going to the bus stop with Nick and I think (secretly) being a big brother and telling Nick all about school.

We would like to thank Peter Walsh for sending a prayer request to the Shrine of St. Jude Thaddeus. We know there are MANY people out there praying for Nicholas and we truly appreciate all your thoughts in helping to heal our child. Next week Nick will receive another round of Vincristine, Methotraxate, 6MP and back on steroids. This will be the first time going to school on steroids and I have to pack a 'goody' bag for him. His appetite will be picking up.
Take Care, Karen

Tuesday, September 8, 2009

The Shannon Family

Hi All,
We had a nice Long weekend with the family. The kids were great and Nick seemed better and fighting off the virus he had. He was almost back to himself during the weekend. He felt cold and tired some of the weekend but still enjoyed a friend's Bday party and visit with the cousins. Today, was back to school and Nick gave us another surprise. He woke up in pain this morning. He said his ear hurt and he was crying and really upset. Even though we kept insisting he stay home, he refused and really wanted to go to school today. His temperature hovered around 99.6 this morning. He cried at the bus stop because he wanted water because he was coughing. It is really upsetting to see him this way because he just wants to be 'normal', attend school and meet new friends and especially ride the bus. So, off he went on the bus and no sooner that I sat down to start work, the phone rang. The nurse at school called to say Nick was upset and not feeling well. Greg came home early from work and took Nick to clinic. We have been thinking over the weekend that he would probably need a blood transfusion today. His counts were not bad and his red blood cells were at 8.5 (normal=10.6-14.6). His white blood cells were 5.9 (normal=4.4-11). Greg figured out what we thought was an ear infection was actually a jaw bone pain. There was rough playing this weekend with Colby and Joey and we think Nick might of hit his jaw bone on something. The clinic nurses drew cultures and also gave him some antibiotics just to be sure. If he still feels tired tomorrow, I will take him to clinic for the transfusion. His body is definitely still fighting off the virus he had and we think it just takes a lot out of him. He was really sad he could not stay at school but hopefully he will make it tomorrow. It has been a rough start for him in Kindergarten. We know it will get better and hopefully Nick continues to show the 'spunk' he has for school.

This month is National Childhood Cancer Awareness Month. There are different ways you can help support all the families who have children battling cancer. You can become a bone marrow donor. It is just a swab in the mouth. You can order kits online: marrow.org. Another way is to donate blood or platelets. Here are some facts about Childhood Cancer:

  • Each school day, 46 children are diagnosed with cancer.
  • One in 330 children will develop cancer by age 20.
  • Each year in the U.S. over 12,600 children are diagnosed with cancer.
  • Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
  • Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
  • 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
  • There are currently more than 270,000 childhood cancer survivors in the U.S.
    Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe

Karen