The Results are In

Hello,
I know I have not posted in a while. I think about it everytime but then something else comes up like hanging with the kids or playing outside, so I think my excuses are pretty good. Greg & I had our appt. today with Dr. Selke -- Pediactirc Neuropsychologist to receive Nick's results on his testing.
Many people have asked why is this test being done and what will we get out of it. When Nick was treated for Leukemia he received radiation (8 days of it) and high dose chemo. There are many side effects from both which can lead to brain deficiencies, such as cognitive skills, comprehension, fatigue, etc.... Nick was in testing for a full day and they were able to complete the whole series of tests. I will first start by saying Nicholas is VERY smart and we are so proud of him. His total IQ number did drop from 124 to 113. Anybody who knows about IQ testing is aware that there are varying degrees in the actual measure (ie:number) that each test uses. His testing is in the range from 1-145. We are satisfied with the results and the areas that Greg & I thought he would need help, did show up on his tests. Our concerns were correct and we still have to accept the fact that there is side effects from everything his body/brain went through. As the doctor states... we saved our child by treating him with chemo and radiation, so we take the side effects and work through them. Nick is showing the 'common' signs from radiation. Here is the breakdown to make it more clear:
- 8 hours of testing -- the dr. uses activities to work on different areas of the brain
- During testing Nick was fatigue by 11am and in the early afternoon by 3pm. The tests going on during this time was not 100% dx due to fatigue
- Nick did drop or show slow response to comprehension & motor skills


The Dr. said he is working on a study where fatigue actually continues through during his delvelopment phase of life. Greg & I always thought Nick would be back to his original energy level and now studies are proving that is not the case. While we see improvement in his energy, he is still not there yet and we do not know if ever will be. He may stay awake all day and play but activities such as baseball can wear him out quickly. We have seen this on the baseball field. He takes a few swings and then he complains he is tired....Of course we try to encourage him and keep telling him to try but in reality his brain/motor skils are slow and tired. Just something we, as parents, need to watch as time goes by.

The big question I asked the Dr. was if Nick would ever re-gain or improve on these skills in which he has shown a decrease in. The Dr. explained it to me like this: Your brain cells (white mass growing around your nerves) grow until about the mid20's and if a normal child is at 100% motor skills and then becomes sick (like Nick), those cells could drop down to about 75%, with radiation killing the 25%. He will never get back to 100% but he can maintain or drop where he is today. So our goal is to continue to challenge Nick and focus on these areas to keep his level of 'smartness' up.

I will post more on this next week when I receive the actual paperwork. The Dr. had some updating to do on his medication sheet of the report and will be sending it out to us. The meeting was very overwhelming for Greg & I to learn just the terminology and then apply it to the exact behavior going on in his brain/everday functions. The testing Nick endured was very draining for him but it is so important to work each part of the brain. The Dr. is not instructed to tell us how to handle the coming years but we have a better idea what we need to do as parents. More details on next blog. Sorry if this is confusing reading about it... I am trying to process everything that was said and also dissect what is the priorities for keeping Nick on track.

On a very happy note: Thomas turns 3 on July 3rd. He has grown up so much and barely looks like our 'baby' anymore. The years pasted by so quickly for us with Tom and missing him during Nick's treatment. I think he has become more independent than the other 2 because of this. He is our little 'madman' in the house. Mom & Dad love you very much Thomas!!!!! We are celebrating this year with a big Mickey Mouse Cake.

Neuropsychology Test

Nick had his IQ test on Wednesday. It was a long full day of testing and he was very exhuasted by the end of the day. The IQ test is done because Nick received total brain radiation back in December of 2008. It was part of his protocol to treat his leukemia because it had spread to his brain/spinal (CNS) when dx. Radiation can cause long term side effects such as learning disabilities, tiredness and can even lead to new cancers. Our goal was to treat the leukemia and you deal with the side effects later. Nick is healthy but he will continue to have follow up neuro testing done to see how he is progressing. The good news is that he was off the charts smart back in 2008 and the doctor said you will probably see some decline but hopefully not a lot. Nick missed a lot of school in Kindergarten and some in 1st grade so that can contribute to it as well. The testing will give us guidance if we should pursue a tutor for the summer and where we need to focus on for 2nd grade. Nick was a trooper during testing, he wanted to go home many times but he continued with it. I had to bribe him with Go-Gos, but he made it through.
This weekend is his last baseball game. I think he likes socializing on the bench more than playing, but that's okay because at least he is out there and being a kid again. I can't believe it has been 7 months since Nick finished treatment. It still amazes me and I have not forgotten everything he went through. I stopped in at clinic while Nick was in testing to make an appt. for his next blood work and I saw so many kids in the waiting room.... battling some disease. It breaks my heart to see these kids knowing the battle they are facing. Please continue to pray for all the kids who are battling this disease. Take Care Karen

All Medication is completed

Nick is completely done with all medication. He finished his Bactrum last week. I think he was happy about it. When I told him last week that he had finished all his 'clinic' meds he said 'great'. I do not think it really phases him, everything he has been through and how proud he should be to finally finish. He has moved on to being a 7yr old. He likes baseball and just picked up the basketball yesterday to try and play. He typically sits out of playing sports with his friends and I believe it is because he feels like he can not play or is not the fastest person. He knows the kids are better than him. We keep encouraging him that he will learn the game and to keep trying. I really believe he does not feel as strong as he looks. I know he tires easily but he will push himself when he wants to. We are fortunate that this is our 'biggest' concern. There are so many kids who are battling cancer and do not have the physical abilities like Nick does. Greg & I undertsand it will take some time for Nick to find his niche and what he really wants to do.
The kids are almost done with school and then will attend daycamp for the summer. Nick will be taking a summer enrichment program to help out with his reading. We have seen improvement with him and continue to try and find the books he likes. That is all news for now. I will have more to post next month with many activities coming up. Take Care, Karen

Monthly Clinic Visit

Our house continues to be busy with baseball and enjoying the warm weather when we have those days. Those of us who live in New England now that summer has not hit and we are still having cold days. Nick has his monthly clinic visit yesterday. We were worried about his eyes and how red they were over the weekend. He complained all day Sunday about how much they bothered him. We decided to give him some Benadryl on Sunday night and they seemed to work for a while. Nurse Pat at clinic thinks it is just allergies and he is showing no other signs but a stuffy nose. He has never had allergies in the past but then again, he has been on so much steroids and antibiotics that we probably would not know. His counts were great, the highest we have seen:
WBC: 10.0
RBC: 12
Plts: 338
ANC: 3,200


My only concern at clinic was his constant bruising all over his body. He definitely bruises easily but the nurse did not show concern for that. I guess the bruises on his legs are normal and he has a few on his arms. I think we just forget how active and playful he is now that this is a boy enjoying himself. I also learned that Nick will now go to clinic every 6wks instead of every month. I was a bit surprised and still not sure if I like this 'plan', which is part of his protocol. He finishes his Bactrum in 2wks, which would be 6 months off treatment.... Still can not believe it at times.
Auntie Lisa and I took the boys to the Red Sox game on Friday night. We had a lot of fun. Colby was really into the game and Nick made sure I bought every food that came by us. He would tell me to get my hand up in the air. I mentioned to Nick that his first 2 times he was here, was steroid week and he was miserable. We stayed until the top of the 9th inning and they left, unfortunately the Red Sox were losing. The boys brought their gloves hoping to catch a foul ball. Thank you to my very dear friend for the tix and thinking of us..... the memories will last.
Greg and I would like to say thank you for everyone who participated/donated to The Tomorrow Fund Stroll. The stroll raised over $100,000 this year. That is the most they have ever raised and brought in over 3,000 'strollers' for the day. As the Shannon Family we can not say enough great things about what the Tomorrow Fund does to help out the families going through treatment. To say they care about people is an understatement and anyway we can help out, we try. Take care. Karen

I know I do not spend a lot of time blogging anymore. I am not sure if anyone is still reading this or not. I think about blogging and then I get busy and tell myself I will do it later. Everyone is great. It is school break this week and we have the boys busy everyday on top of baseball every night. There is a lot of laughter, screaming boys and tired parents at night. I have been doing double duty with work and Greg is in school and working so schedules seem to be filled these days. There is little time to think about the 'what if's' for Nick, so we move forward. Nick had his first pediatrician visit since his diagnosis this week. (I called the clinic for the everything...just did not trust anyone else during his treatment) He is great overall, below the bar on height and weight, it could be just genes or from the chemo/radiation. We really will not know until later on and when he is older. Colby on the other hand is growing leaps and bounds. He grew 4 inches in 1.5 years and gained weight. It is hard to tell I have two 7 year olds until 4/25 (then colby turns 8) with such a height difference. One month and Nick will be off the Bactrum, which means, he is done with all meds. I still have his old medicine in the cabinet and have not cleaned it out yet. I look at the bottles and of course memories flash into my head, I just need to get rid of the stuff.

Tomorrow Fund Stroll 4/10

Hello All,
I know I left some information hanging from the last post. We have been very busy and trying to absorb/adjust to the schedule. We had a surprise Birthday party for Nana (Greg's mom) on Sunday. She was completely surprised and we had family come into town to celebrate with us. The day was great with all the cousins playing together. I feel like the house is alive when we are able to have friends and family over. It can be crazy but lots of fun. We have spent the past couple of years not allowing people in our house so it is nice to open our doors again. We hope it will stay that way.
The last blog I posted about a family member who was diagnosed with cancer. Papa Charlie (Greg's dad) was diaganosed with prostate cancer and he recieved the results on Friday. He is in the early stages of cancer and he does have options. We are all here to support him and he loves we love him very much. I think the overwhelming factor of it all is hearing the 'C' word again. As always, we will unite and fight!

On Sunday we be participating in the Tomorrow Fund Stroll for the 3rd year in a row. The kids look forward to the stroll, not knowing 100% the meaning of it. That is okay because we, as parents, are coming together to support a wonderful clinic. We are able to see the doctors and nurses outside of clinic with their families to. You really know they care about the children. We are hoping for great weather so the kids will get a few laps in and enjoy the time with old/new friends from clinic. If anyone is interested in donating to the Tomorrow fund, please go to www.tomorrowfund.org. Thank you.

Happy 7th Birthday Nicholas

Nicholas will be 7 tomorrow. We get to enjoy having two 7 yr olds in the house for the next 3 weeks and then Colby is 8. We have decided to not plan a party this year for either of the boys. We have a celebration after the Tomorrow Fund Walk for them and enjoy our family time together tomorrow. The kids have been asking us for a big present this year so we decided to go ahead and get them that instead of a birthday party. Nick will have his 'traditional' breakfast in bed tomorrow morning and enjoy the day, probably bossing us around.
Last weekend we took the boys to the Hole in Wall open house for summer campers. This year Nick is old enough to go for a week. He is really excited and both boys did not want to leave the place. Everytime we have pulled up to Hole in the Wall you have a feeling of peace. Just for Greg & I to be there w/the family for a few hours, completely releived our stress and just relaxed us. We both have been busy with work, me traveling and school for Greg so to find a way (and it's free)to just be us is always great. I signed Nick up to go to camp at the beginning of August and then siblings (Colby) will go the last week in August.
Nick has been feeling great and contiues to work hard in school. We have just learned today of another family member who has been diagnosed with Cancer. For the privacy of our family and the new diagnosis, I am leaving the name out. I am asking for extra prayers in our family while they find the best treatment plan and course of action to take. We love you........