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!

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.....

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.
Sincerely,
Greg