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.

Saturday, December 13, 2008

The Shannon Family

It is Saturday night and we have decided to take in the Love children (Joey & Megan). We can start with yesterday morning and Nick had his 4th radiation day and 2nd LP (lumbar puncture). Everything went well even though Nick is back on his steroids and VERY moody. He did not like to go or take the procedure well, but he took control and cried until he was asleep. The nurse took his port out for the weekend and then we came home. He was very adamant to play with Michael and I drove him over for the day to play. Thank you Debbie.... After that we brought him to the Prospect Hill Holiday Show at KP Middle School. He was so excited to see his friends again. Everyone accepted him so well and were amazed at his hair (or lack of). He told everyone 'I take my medicine and it makes my hair fall out, but it will grow back'. They all gave him hugs. He even went on stage to sing 'Mommy kissed Santa Claus' with all his friends. He did not even know the words, but danced and had a great time. We will always remember the moment we could see him on stage and the smile on his face. Yes, tears were in our eyes, as with every parent who sees their child enjoying the moment. Before the end of show, Nick was getting tired and ready to go, so we left a little early. We know that Nick not does understand the support of the teachers and parents at Prospect Hill, but we appreciate you ALL. We have 4 more days of radiation and 2 LP's left for this week. Also, the shot in the leg, once a week. We cherish another week at home with our family together and continue to enjoy the Holiday time. Take care everyone. (PS-I have to sign Greg up for the next blog) Oh yeah, and wish us luck for having a total of 5 kids tonight for the sleepover.....

Thursday, December 11, 2008

A First

Hello all,
I have been asked to pick up some of the slack around here, so I am writing my first ever blog. Karen has definitely found an outlet with writing in the blog, but it is also a bit of burden as she has started back at work. With all of the support we have received she spends a great deal of time writing thank you notes to all the wonderful people who have been so generous. It is an odd feeling to have so much support. At one moment you are both so thankful and yet feel as though there are others who need more than we.
Nick has been a constant focus and yet we are trying to make sure we balance our efforts with all three boys. Colby has had a lot thrown at him in a short amount of time. With the adjustment to kindergarten just beginning his new "normal life" changed again. This time it keeps changing. Nick goes in the hospital, nick comes home. Nick is sick, Nick is his old self. Nick also seems to take a lot out on Colby. Needless to say we are doubling our efforts to try and help Colby through this as well. We have faith that all of this will make us all stronger and closer.
Nick has gone through the first three rounds of eight radiation treatments. He has also had one Lumbar puncture out of the four he will have by next Friday. This phase of the treatment is called Central Nervous System Therapy. It runs for 3 weeks and is concurrent with the Continuation phase II which will last for 30 weeks. So, Nick has also started this. He has 3 week cycles which include on day 1 of each cylce 2 chemo's through the port and one injected by needle in the leg. This drug injected in the leg is called asperiginase. So far (with the one shot) Nick handled it well(He was sleeping). The concern here is that ~30% of kids are allergic to this drug. Some are allergic right away, some take a few additive shots. We have hurdled the first step with this drug. Now back to the 3 week cycles. He will also take a chemo pill home for him to take for 14 days and a steroid for 5 days. Along with these drugs Nick has to take zantac and zofran. As you can see Nick will begin each 3 week cycle with a lot and then have a week or so to recover. I know that Karen has writen a lot about how well Nick has been handling things. For the most part that is true, radiation started out on the wrong foot. Not the best Anasteseologist maybe or maybe Dad should have been a little more on his toes as to what should happen. Anyway, Nick got through that experience and is now much more relaxed and comfortable with going to sleep and getting the radiation. When he woke up this morning from the treatment he wanted to get right up and he hollars out with 6 or so people from the hospital in the room. "Whew, that medicine you put in my port makes me dizzy". Everyone cracked up laughing. He then proceeded to tell them what to do and they pretty much listened.
We as a family are trully looking forward to Christmas and the week after. Both Karen and I are off work the whole week and are looking forward to spedning quality time with all the kids. We are praying that it will be at home!! Take care and we hope this finds you all healthy and happy.