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
Counts:
WBC: 7.2
RBC: 11.3
APC: 6,300

Challenging week/weekend

Hello,
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??

Yesterday was Nick's last spinal for his protocal of ALL T-Cell. I have mentioned before how much he has gone through and what a great child he is. He was great yesterday during clinic and only asked a few times for food. It was a long day for us, Nick was up at 6am and he did not have his procedure until noon. He could not eat before his procedure so basically the last time he ate was 6pm the night before. The procedure went smoothly and the fluid looked clear dripping out of his spine. We do not have pathology reports yet, but we remain optismistic everything is ok. When everything was done, Nick was snoozing and Greg & I just looked at each other.... We both know,it feels great on one hand to think no more chemo will be injected into his spine but then you think.... is that okay? Could he relaspe? Nick knows he is almost at the end of his treatment but I try to be careful in telling him he will 'never' have this done again. Greg & I are just not there yet.
He woke up quickly after the procedure and felt a little dizzy, but still tried to play his DS right away. We promised him lunch on the way home and we stopped at a small Italian restaurant with patio seating. Luckily Nick chose to sit outside and enjoy the warm weather. He did mention he felt like throwing up and then he was okay. His food came and after a few bites he did throw up... good thing we were outside. After that he said he felt better and continued to eat half his meal. This has happened to us before and I just think it is a combination of the chemo, his sleepy medicine and the fact he likes to get up right away after the procedure and leave.
He is back in school today and looking forward to seeing his friends. It will be interesting if he tells them about his day yesterday. His story usually goes like this: "I was not in school today because I had to get sleepy medicine so the doctor can stick a needle in my back. I know this because I always find a band aid on my back when I wake up." Another round of steroids start this week along with 6MP. We hope to enjoy this weekend with the great weather and Nick sleeping over at Papa Boston's house. Karen

Great Weekend and It is that time again

Hello All,
We have a wonderful long weekend with the family and friends. Colby had his first football game and Nick will start baseball this week. We enjoyed having some friends over on Saturday night, 4-wheeling, and smores by the bonfire. Monday we took advantage of the sunny weather and headed to the beach for the day. The waves were great and Nick and Colby ditched their boogy boards for body surfing. My sister and he kids joined us and we had a fun time.
Tomorrow Nick is scheduled for his spinal (lumbar puncture). He receives this procedure every 18 weeks and I can not believe how fast the last 18 wks have gone by. This is positive for us because we are moving further out to acheiving our goal of being off treatment. It will be a long day for us. We go to clinic to access his port, get his counts down. He will receive Vincristine through his port and steroids and Methotrexate through his spine. We go down to the PICU recovery floor and can watch the procedure. The doctor will also take a sample from his spine and send it off to pathology to check for any leukemia cells. We usually have the answers back that day but could be on Thursday. Nick is not a big fan of getting his 'sleepy' medicine and always wakes up right away. They like to have him lie down for 30minutes after the procedure is down but he is usually up and telling us it is time to leave 15 minutes after he is done. We'll take him to lunch and then home to rest for the day. Since this is a start of a cycle he will also start 5 days of steroids and 6MP at home. Hoping tomorrow goes okay.
I forget how easy it is talk about the day tomorrow. Nick has endured over 12 of these procedures in the past 2 years, while on chemo, taking steroids, through radiation treatments and he can still have a smile on his face after we leave the hospital. Greg and I will be anxious tonight and go through the motions with Nick tomorrow but the constant worry will be there until we actually have the tests back.

First Day of School

Hello,
I have to start the post with catching up on the weekend. The boys went to Auntie Lisa's for a sleepover (even Tom) and had a great time. Thank you Auntie Lisa. I heard all 3 boys were well behaved and had fun swimming in the lake. Greg & I had some time to and took advantage of the 4-wheeling trails behind our house. We headed out for a 3 hour journey.
Colby & Nick started school today. We were very excited to get them on the bus but also concerned how Nick would handle a full day of school. Last year, he was in the half day kindergarten program and was usually wiped out by the time he got home. Today, everything was fine. The boys are now playing legos and enjoying being inside, away from our heat wave. Greg took Nick to clinic yesterday and his counts were good:
WBC: 3.9
RBC: 10
Plts: 473 - high, not sure why
APC: 2,500
He is scheduled for his 18wk spinal (lumbar puncture) on 9/8. He is not happy that he has to miss school so early in the year but this could be the last one. We have a 3 day school week and then a nice long weekend. Take care.

September is National Childhood Awareness Month. Click on Cancer Facts for information on childhood cancer. There are ways to help out: donate blood and donate platelets. I will try to post more facts throughout the month....

Week is Over -- Great Weekend

Hello All,
The week of steroids were okay. Nick was definitely very emotional and meltdowns came everyday. He was getting upset over the little things and then it just escalated to food and not looking at him the right way. One day I sent him to his room to chill out and he ended up throwing everyhing around. He then came down stairs and pulled one of our kitchen drawers out and dumping all the stuff. I was a little surprised to see this much aggresstion in him but then again, it has been almost 2 years worth of steroids in his body. After his sadness came the love and happiness, the Nick we know. He would calm down and give me a hug and tell me how much he loves me, and the family. He gets over it pretty quickly. That is the thing about kids, they forget and move on and be happy. A little challenging for the adults to see it, deal with it and know it will be okay. Greg and I try to talk to him about the episodes a day or so later and let him know it is okay to feel that way and we are here for him. It is not okay to take it out on his brothers and us and yelling. We try to do our best.... As we are starting to say, another round of steroids down, hopefully only a few more to go.
On a great note, we (Colby, Nick and I) spent Saturday night at Aunt Amy's house for a girls night and kid night out. We had a great time. Nick was in pain most of the time and luckily I brought all the pain pills I could. He went through most of them but really handlded everything well. We have figured out, as long as he feels comfortable where he is, then he can get through the pain. He is astute to his vocabulary that he did say he felt 'left out' and 'alone' at times and people do not understand his chemo. Every child was great to him, I know he was feeling different and wanted to express it. Of course, by Sunday morning he was ready to go and back to himself. Which bring us to clinic:
I decided to take my chances (keep up with me on this) and bring Colby, Joey and Nick to clinic. 3 active boys and the lecture about behaving came way before we walked into clinic. They were great. It was a long day today. I know the clinic was short on staff and we ended up there for about 3 hours. The boys were good because we had the Wii to play and plenty of snacks. Nick's counts were high... to be expected aftet steroid week, but also counts we have not seen in a while.
WBC: 10.3 - normal range
RBC: 10.3
PLTS: 416 -- that is high
APC: 7,400
We will see next week what the 'real' counts are because they will probably drop and level off. He is on 6MP still and the upped dose. Nick is looking forward to his playdate tomorrow and the last week before school starts. Wow, time for 1st grade and full day of school.
This Saturday the kids (yes, all 3) are going to Auntie Lisa's for a sleepover, with their friend Brian. They are very excited and looking forward to swimming in the lake. Tom does not know yet, (of course, he is a 2 yr old) and will hopefully be good for Auntie Lisa. We will post later on their adventure. Take care. Another week down.... yes, scary we are starting to talk about the end. We pray it will come. Take care. Karen
Oh yeah, above is a picture of the boys at clinic. We can not leave out Tom. Tom was running around in the rain outside and decided sunglasses were necessary. Enjoy.

Back on the Steroids

We had a great weekend and definitely one to remember. We spent Saturday at Auntie Lisa's lake, going paddle boating and fishing. Sunday we decided a family day to the beach was needed. The weather was a little overcast and windy but that did not stop us from having a blast. The waves were huge and the boys brought their boogie boards. Nick was riding the waves and crashing in the water. It was nerving wrecking for me to watch him because he would go under and it took a few seconds before I could see him come back up. He would come up smiling and running back into the ocean. We have not seen Nick be so strong in the water and enjoy himself so much. The bigger the waves the more fun he was having. Colby had a rash on his stomach from the day before at the lake so the salt water stung a little. He eventually got through it all and joined Nick in the water. We've been telling Nick this week that when he feels sad or something does not go his way to remember the ocean and waves he road into shore.
I took Nick to clinic this week. It was uneventful.... which we always like. His counts were good and the doctor has decided to increase his 6MP dose, Vincristine, Methotrexate and 5 days of steroids. As I mentioned in the past, we would like him to be at 100% dose for all his chemo. The doctors have decreased it in the past because of his virus's and being neutropenic. Hopefully he will stay fever free during this cycle. He seems to break a fever everytime we increase the dose. Steroid week is only half way through and he seems okay. He does have little meltdowns over little things. We have 2 weeks left before school starts and I am looking forward to it. The summer has been great and I am sure the boys enjoyed not having a schedule and staying up late most nights. I will be meeting with Nick's teacher next week to update his 504 plan and already write down the dates he will be out of class for Sept.
Counts:
WBC: 4.2
RBC: 10.0
APC: 2,500

On a very positive side note: I spoke with Nurse Pat on monday about our Make A Wish Trip and planning it during the start of Nick's cycle. She said since we are in the maintenance phase of his treatment we can push the start of the cycle out 1 week. Yes, we can go on the trip and Nick will actually be PILL FREE the entire time.