Boston Marathon support 2009

Happy New Year! We wanted to let everyone know of an opportunity to support an old family friend and the Leukemia and Lymphoma Society at once. A long time friend of the family, Bob Williams, is running his 5th Boston marathon this year and is raising money for the Leukemia and Lymphoma Society. If you would, please take a look at his site: http://pages.teamintraining.org/ma/boston09/bwilliadtr.

Nick did get to spend New Year's at home with mom, dad and his brothers.

Thank you for your support and prayers for Nick.

Aunt Christa

The Shannon -- Back at Home

We were able to come home today..... on many restrictions. Let's back up a bit. It took the nurses about 1.5 hours to access Nick's port the other night. Partly due to Nick being stubborn and the ER trying their best. We ended up having a nurse from the 5th floor come down and access the port. Nick's fever broke before the next day (Sunday I think). He did receive a blood transfusion, which went great so he did not need the platelet transfusion. He was back to himself again in no time. They drew blood yesterday to see how his 'counts' (the everlasting work to see how everything is working) and they were still a little low, so we decided to wait until today. Today's counts were good, but the ANC (again another technical term to show if his body is susceptible to getting sick, put mildly), was very low. The doctor gave us the option of heading home and keeping him 'in a bubble' or staying one more night. I explained everything to Nick and he decided he wanted to go home and keep his port accessed... in case he has to go back to the ER at night again this week. We decided it was better to try and be home as a family as much as can and take the consequences when they come. Colby is always really excited when Nick is home and able to play with him. Thomas even gets happy and jumps around on his jumper. We will see what happens in the next couple of days and go from there. Nick was suppose to start his next 3 week chemo treatment but will probably be pushed off until Monday. He did receive his shot in the leg this week. (that does NOT effect his counts). He did good and cried like everyone should when it hurt.
We would to wish everyone a VERY HAPPY AND HEALTHY NEW YEAR. TO 2009! GOD BLESS YOU :) Greg, Karen, Colby, Nicholas & Thomas

The Shannon Family-- Back in the Hospital

Hello All,
A bit of a surprise for us today. We had planned a sleepover at Grammy's and house and Karen dropped the kids off and came home. Nick fell asleep on the couch and worried Grammy took his temperature. It was high enough to send us to the ER. At the ER they access his port and draw blood for cultures and counts. His blood counts came back REALLY low, which means he earned himself a couple days (we hope only a couple) in the hospital. He will probably receive a blood and platelet transfusion tomorrow. Nick is snoozing now, but not to happy about having to stay. He knows some of the nurses on the 5th floor, red pod and is getting more comfortable during his stay their. It is frustrating not knowing what causes his little body to change so quickly and how to prevent this in the future. We can only try and do our best to look for signs in him. Greg and I are on vacation this week, so at least we can juggle our time with the kids and wait for Nick to get better asap.

The Shannon Family - Merry Christmas

Wow, what a year it has been. We have been blessed with many things this year, along with challenges that keeps us growing stronger as a family. Colby is 5 and in kindergarden.... Gym is his favorite class and he has met many new friends. Every night we sit for dinner as a family, (when we are all home) and ask all the kids how their day was. Colby is always full of new insights and 'the letter of the day.' So we think of the words we can come up with that begin with that letter. It is amazing the imagination kids have and how they keep us laughing. Then we move onto Nick and ask him how his day was... he will talk about the games he played at home and then remember the times he had at daycare and his friends. We tell him that one day he will go back to daycare and see all of them. We are hoping in the next couple of weeks that will happen to.Thomas, our now 6 month old is wonderful and a great baby. We try to keep up with his many changes and stages of his development. It is sometimes hard to give him the time with Nick and the busy schedule. Thomas is now sitting in his high chair and he laughs and eats while we ask him questions. So, we are sending a message to all the people we love and the families we have met along our journey.... cherish the moments you have and never forget to laugh and hug. God Bless and a Very Merry Christmas.

PS. We did not get a chance to send out Christmas cards this year... just decided it was to hectic but we loved receiving all the cards, pictures and kind words from everyone. They are posted on our door and the kids enjoy looking at the pictures. cheers!!!!!

The Shannon Family -- 3 shots down and 27 to Go

Hi Everyone,
We had clinic yesterday and Nick's first shot in the leg while he was awake. He took it pretty well. Only cried for a few minutes and then he was able to play Spongebob on the game system they had. He still struggles with his port being accessed. I think it feels uncomfortable at first and the needle scares him. Nick is adjusting/accepting the fact he will always have his port accessed. We are now 2 days away from Christmas and feel confident that Nick will be home with us. He has a week free of pills and treatments, so his counts should go back up. We hope everyone enjoys Christmas and time with the family...... I am signing off for now. God Bless!

.....updated by Aunt Amy, unfortunately it is 27 shots to go, but Nick is a trooper and will do great! Every week will become more difficult, as Nick will know what is in store for him at the clinic, but Karen and Greg are doing their best to keep Nick's spirits up and to get him through this phase. We are looking forward to the Shannon family visiting for Christmas Eve - Joey, Megan and Kendra are very excited to see everyone. A Merry Christmas and Happy Holidays to all!!!!! May this New Year continue to bring many more prayers and support to all....Love Aunt Amy

The Shannon Family -- We are Done with Radiation

Hello All. We have completed our CNS therapy phase for Nick. He did and even brought home his radiation mask. He knows he will still have to go to clinic and receive more chemo... the shots will be the surprise to him. As Greg said, we have been trying to say thanks to the many people supporting us and if we can't write to you here, we hope you all know how much we appreciate the support. I have to give some big hugs and thanks to Meaghan and Randi at Stop & Shop. Together they held a raffle (for Pats tickets) in their office to benefit Nick. Without even knowing Nick, they rounded up the tickets from Paul at Snyder's (thank you to) and posted signs for everyone to contribute. 2 sets of tickets were given away and as a surprise Snyder's gave mom and dad 2 tickets to join the winners. The philanthropic spirit has truly brought the joy of giving a real meaning.
Of course, how can I end this without saying thanks to the SCJ crew again. Sandy and I made some more meals last weekend and I can't wait to share them with family who helps out babysitting our 3 boys. As we get ready for Christmas, we hope everyone will enjoy the Holiday and the time they can spend with their family.

1 day of radiation left

Hope this finds all well. Nick has one last day of radiation tomorrow with an intrathecal lumbar puncture. He has gradually become more understanding of the procedure and getting put to sleep every morning. We as a family are truly looking forward to Nick not having to be subject to this treatment anymore. We will not know how adverse the side affects are until at least 5 weeks from now and some may not show up for years. Nick has been feeling great and wanting to do too much. It is hard to tell a 4 year old to slow down. Karen and I continue to owe great thanks to many people. Karen will update and thank some, but it would be remiss of me to not mention the fantastic people at Prospect Hill Country Day School. Kristen and her staff put all the procedes from the holiday show (in which Nick participated and what a joy it was for Karen and I) to Nicks fund. When Kristen told us about what she was planning we were stunned to see the event the way the women were all wearing the orange ribbons was mind blowing. I thought I was just about done crying....not quite I guess. These of course are tears of joy! Thank you Kristen and all the wonderful people at Prospect. You are truly more than just a great place for kids to grow, you are family and we love you all!!! Take care and we will give an update soon, but for now just finish your shopping the economy needs you!!! Oh, quick corrrection from my 1st post. The asperiginase shot that Nick is receiving is once a week so he got his second shot monday and all is well. So, all in all he will have 30 shots for this protocol.
Bye!