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
