Hello,
We had an awesome Holiday Break and lots of parties to attend/host. It has been nice to take a break from the blog for 2 weeks. I think this is the longest time I have gone without blogging. The Shannon family is feeling great and just getting back into the routine of school. We have truly been making the most of time together as a family. I am not even sure where to start. I will start with an update on Nick: The pathology results from his spinal and bone aspiration came back with zero leukemia cells. Yes, this is exactly what we hoped for. The MRD (minimal residual of disease) testing that was sent to Dana Farber is not back yet. This test can take a 'deeper dive' into the cell make up and see if there is a potential for relapse. Since Nick was diagnosed with T-Cell Leukemia the doctors at Dana Farber (clinical trial) are not sure if the results will be accurate or not. The MRD testing is typically done with Pre-B low-risk leukemia patients. Nick is very high risk with T-cell. The results should come back in the next few weeks, but we are moving forward with the port removal. We go on the 11th for a consult with the surgeon and then will make our appointment. It will almost be a month since our last clinic visit, so we will stop in at clinic for his port access and blood counts to be done.
Overall we are great. Nick is physically changing some. He is losing the bloated steroids face and really looking like the Nick we had 2+ years ago. He is getting stronger and has more energy than before. We are still working on some of the bad habits he picked up during treatment (just being spoiled) and his temper will flare but not as often. We even see a change in Colby. He tells people my brother 'used' to have cancer but now he does not. The boys rough house a lot now and no one holds back. Tom always tries to jump in on the fun.......
Christmas break we nice and relaxing, besides the few parties we had. It felt great to entertain again and enjoy fun times with the family and friends. Nick made it to New Year's this year. He took a 3 hour nap during the day and rang in the New Year's with Colby, Greg & I and lots of friends. He was very proud of himself for staying awake.
I will continue to update the blog site, but not as often. I am working on a project in conjunction with this site and I am asking everyone a favor: Please post any comment you would like for Nick. I am hoping to hear from everyone who reads this site. I will give details later.... but please post to us. Thanks, Karen
6 comments:
I have been reading this blog since the first post to follow Nick's journey and that of his family.
My heart is singing with joy of this good news and of your first words about life getting back to "normal."
Thank you for sharing your story during times when every moment was precious or over-whelming or trying or .......
Your story has come from the heart ... and made a difference on my perspective of so many aspects of life.
My comments may have been few ... but I was with you all along the way.
Andrea
Cousin Nick,
We have been with you throughout this whole experience. Although we could not be with you on the day to day basis, not one day went by we did not say a prayer or wonder how you were feeling. It is nice to tell people "our cousin HAD cancer". Now we hope you can come visit us in NC!!!!
Justin, Luke and Kaitlyn
Hi Shannon Family-
We have never met, but have a friend in common. I am good friends with Anne (Luciano) O'Neil. She told me about your blog over a year ago when my son Kevin was diagnosed with ALL. I read your blog posts from the beginning and felt like I was reading about my son- everything matched up about age of diagnosis, how it was diagnosed, etc. I stayed up one night and read a year's worth of posts so I could catch a glimpse at what we were in store for. Thank you for sharing everything that you have with this blog- it was so hopeful to read about your amazing son and family. You have all been an inspiration on how to get through this crazy stuff. Your most recent post was such great news- I can only imagine the emotions you all must be having now!!!
Thank you again and please know you are all in my family's prayers.
-Cara Rich from Mansfield
Hello, We are so glad to be close to you to be able to see Nick often. He has changed right before our eyes for the better - at least now he will give me a hug without too much coaching that a hug means to put your arms around the person instead of just leaning up against their body.
Karen and Greg you have done an amazing job of keeping a positive attitude throughout these past 2+ years. We know first hand how difficult it is to see your child suffer. Eileen has been watching over Nicholas and will continue until he is diagnosed as cancer free.
Colby has gone through a lot in this time span and he is also amazing. What can I say about Thomas - well Thomas will be Thomas. He is too young to understand just what has been going on with your family situation.
Well I guess I better sign off for now. Love Nana and Papa Charlie
Nick,
After two long years I am thrilled to hear your treatment is a success and you will soon have your port removed.
You truly have been a brave boy throughout the process. I will never forget watching you help the nurse push on the syringe as medicine entered your port.
May God continue to bless you, Colby, Thomas, mom, and dad.
Papa Boston
Nick,
YOU did it! you did it with your awesome brothers and parents! Big hugs to you all.
Shannon Family,
I am SO happy for all of you and hope only the best things as you start new normal.
I am so thankful for your blog, it does help to read someone that is going through simillar challenges and situations. I am also I glad I go to meet all of you this summer we hoope to see you at camp again!
Hugs and Kisses,
Kat
Iza Mimi Magi
letskickallsbutt.blogspot.com
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