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.

Wednesday, December 31, 2008

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

Tuesday, December 30, 2008

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

Sunday, December 28, 2008

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.

Wednesday, December 24, 2008

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 Check Spellinggo 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!!!!!

Tuesday, December 23, 2008

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

Thursday, December 18, 2008

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.

Wednesday, December 17, 2008

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.

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.

Saturday, December 6, 2008

The Shannon

Hello from the Shannon Family,
We have had a great week with Nicholas being home. Yesterday he had play date with his friend Michael. He could not wait to leave our house and enjoy the company away from the parents. Today the Lions Club of Providence, RI hosted a Christmas party for children with cancer. At first, Nick was hesitant to go, but ended up having a lot of fun. They had clowns, Spiderman, Superman and Scoobydoo to had out candy, toys and balloons. Santa Claus showed up to take pictures and give out gifts. It was very reassuring for Nick to go to the hospital and have a positive experience.
On Tuesday he will start his next cycle. It lasts for 30 weeks. The cycle repeats itself every 3 weeks for next 10 weeks. The first cycle includes 8 days of radiation and 4 spinals. Including in all of the cycles is chemo through his port, pills at home and a shot in the thigh muscle. Once we get through the first 3 weeks, he should only receive the shot in the muscle and chemo through the port, along with pills taken at home. The shot, we understand will be very painful, but also very effective to his treatment. We are learning as we go with each stage and trying to help with pain and understanding along the way. Nick is very smart and continues to amaze us.

We put our Christmas tree up this week and lights on around the house. Grammy and Nick put the village together.... Nick's claim to fame.... it looks great.

Tuesday, December 2, 2008

Day 15 - The Shannon Family

Yesterday Papa took Nick to the mall to see Santa. He ended up being to shy to talk to Santa but we said maybe next time, Colby will come with us and hold Nick's hand. Today, Nick and Greg were up early this morning for the radiology appt. Nick was really upset that he would be put to asleep again. In trying to give Nick a choice, we decided to try and make the mask while he was awake. As brave as Nick is, the process did not work for him. He ended up being put to sleep while the doctor made the mask. We are so proud of Nick and how he tries to be strong and understands that this procedure has to be done. We will start next Monday with a new round of chemo treatments, spinal and then radiation on Tuesday. For now, we are off to pick out a Christmas tree and relax for the week.

Saturday, November 29, 2008

Day 12 - The Shannon Family (consolidation 1)

Hi to everyone. We hope everyone had a wonderful Thanksgiving and lots of good food. As you have heard Nick made it home Thanksgiving morning. We had a very quiet day and just enjoyed being together. It is easy to forget how much family time means to us. When Nick is home we love every minute of it. Colby was really excited to see him home... he was feeling very sad that Nick was in the hospital so long. We go to Radiology on Tuesday for them to make Nick a mask and then start radiation the following week. He will endure 8 days of radiation, with spinals and chemo. We hope to have all this done before Christmas and crossing our fingers he will not break a fever during this next phase. Santa Claus came to our neighborhood yesterday and we got to take pictures. Nick was a little shy and did not want to tell Santa what he would like for Christmas... we'll try again at the mall sometime soon.

Thursday, November 27, 2008

Thanksgiving at HOME

Happy Thanksgiving everyone. Nick made it home this morning and was happy to be there. The Shannon's spent their Thanksgiving as a family at home enjoying all the wonderful food from friends and family. Hopefully Nick will make it through the weekend at home fever free and having fun. He starts a very tough portion of this treatment process on monday that will last a few weeks. He will be in the outpatient clinic almost everyday and will receive some radiation as well. We all need to keep him in our thoughts and prayers as this stage will be the most challenging he has encountered yet. We hope you are enjoying your holiday as a family as well.

Tuesday, November 25, 2008

Day 8 (Consolidation 1)

Just checking in with everyone. Nick got his temparature down today, but then it did up again. They finally think they know what is causing the fever (not an infiection) and are trying to get things right. He is such a tough a kid and does not complain about pain. As with any 4 year old he is trying to figure out what is going on. The Shannon family is hanging in there , visiting Nick everyday to keep him busy. Joey got to see his port put in today and thought it was 'cool'. Nick still just wants to be home, we all are hoping he will be home soon. He has definitely mastered Lego Star Wars and will be the Champion by the time he leaves the hospital - watch out gamers. We all wish you a Happy Thanksgiving - keep Nick in your thoughts.

Sunday, November 23, 2008

Day 6 - The Shannon Family (Consolidation 1)

We have had a tough couple of days. Nick spiked a fever Thursday night and has not kicked it yet. We believe he will be in the hospital for the rest of the week. His blood counts are starting to drop from the chemo treatments and thus weakening his immune system. He is receiving antibiotics to prevent bacterial infection. We are not sure the cause of the fever... could be from the chemo, a virus or infection. The doctors try to treat all possible causes. His spirits are getting low and he wants to go home. Luckily we are still trying to master Lego Star Wars on xbox and that keeps him going. I tell him we have to complete this before we go home. Just today he has complained of pain in throat... again another side effect. We try to comfort him and ease the pain through medication. He is done with chemo for the next 2 weeks, so our focus is to get through the fevers and have him home for a little while.
On a side note:
We would like to thank:
Dan Campbell (Interior/exterior custom builder)
Upton, MA 508-529-3144
Dan and his crew generously gave us their time to install hardwood floors in Nick's room and put in the storm door. The importance of keeping him germ free is intensifying daily. They look beautiful and I know Nick will be excited to see them when he gets home.

Friday, November 21, 2008

Joey and I (Aunt Amy) went to visit Nick today in hospital. Joey and Nick spent the day playing lego stars (onXbox). Colby and daddy showed up and the game continued. Nick was really upset to be there and wanted to go home. Karen explained he needed to stay to get better. Nick continues to run a mild fever but feels and looks good. And that is the hardest thing as a parent to watch Nick be upset. The love and support the Shannon has received is just unbelievable and keeps them going. We all can’t thank everyone enough for their thoughts. Karen and Greg are the best parents around to be staying positive and holding strong for their son. As emotional and upsetting the situation is, they remain calm. From the dinners, to donations, raffles, gift cards, home improvements and support the entire family is staying strong. We hope to see Nick go home this weekend, as all tests are negative and the fever looks to be ‘viral’. We love you Nick and Shannon family!

Thursday, November 20, 2008

Day 3 - The Shannon Family (Consolidation 1)

Hello to everyone. We have made it through the induction phase and now Nicholas is in 'remission'. It is weird how they say remission because he will be going through the toughest part of his whole treatment over the next 6-8 months. T-cell leukemia requires the strongest chemo treatment, radiation and spinals during our next phase. We have been told to get ready for the rollacoaster of side effects to the drugs he will be getting. At least he gets to take a break from the steroids for a while. The last week of his induction phase was definitely challenging with the mood swings and feeding schedule. We know the changes in him that we did see was from the meds and not who he really is. We are ready to have our Nick back.
We have been in the hospital since Tuesday for 3 chemo treatments, the start of consolidation phase 1. This phase lasts for 14 days and then he has a week off before the next phase. So far his body has done well with the chemo. He spiked a fever today and as long as it is down for 24 hours, we could go home tomorrow late afternoon. I know Nick is ready to go home. He is playing Lego Star Wars on the Xbox right now. I had to give up playing with him.... I think I am too old to learn this stuff. We did enjoy some family time at the hospital today. Colby skipped school and Tom made the nurses day with his smiling face.
Our time at the hospital has been very supportive since Nick's friend Sean was admitted on Tuesday as well. The two boys have become good friends and really enjoy their playtime together. It was great for Nick to see another 4 yr. old with a port and having to take medicine, even though he did not want to. I am sure we will meet many more strong kids during our journey.

Monday, November 17, 2008

Nick's busy weekend

Nick and the family had a very busy weekend. Friday morning started with a playdate with his friend Michael and then a sleepover at Joey’s Friday night. Saturday brought another playdate, his friend Sean who is also fighting Leukemia. Sunday brought a visit from Uncle Dick and Aunt Mary and dinner from friends. Nicholas had a busy, fun and active weekend. He even got a ride on daddy's ATV. Greg and Colby look great with their new haircuts and Joey is getting jealous that Nick now has less hair than him. Nick will be admitted to the hospital on Tuesday to start Phase II, consolidation phase, if all goes well with his blood counts. This Phase will be very difficult for Nick and the family, as they start a new round of treatments and shots. Nick has been so strong and brave through the past month, we know he will get through this. Thanks everyone for their love and support – the Shannon family needs it!

Thursday, November 13, 2008

Day 28 - The Shannon Family

We have to thank Christa and Amy for putting together this website. We have received many complients on how useful and how often our friends and family read the updates. I decided to make a couple of changes because we always have lots to write about and Nick's favorite color is green. We would also like to thank everyone who have provided us delicious home cooked meals.... from our family, neighbors, long time friends and the SC Johnson crew. These meals have made the days much easier, espeically when we have clinic or when Nick is in the hospital. The gift cards have been great too... The gifts for Nick has helped cheer him up and keep his mind focused on 'play time'. He brings the toys and stuffed animals to the hospital for comfort. To the grandparents, siblings and playdate pals for the kids who have extented their time to help us out, we call out a big THANK YOU to everyone who supports us. It is people like all of you that remind us how lucky we are!
PS- Nick is still home, keeping mom busy with his demands. He now likes his 'button', (port) and thinks it is COOL.

Tuesday, November 11, 2008

Day 26 - The Shannon Family

Grammy and I took Nicholas to outpatient client yesterday for a chemo treatment. It was heartwrenching to see how upset he was to go. He said he was scared of the hospital now (I can't blame him). He understands he has to go, but just does not want to. He was okay once we were there. He was very curious about what his 'port' looked like, so nurse Angie took one out and showed him. He seemed to think it was cool that he has one. We met with the doctor and they feel confident that after day 32 he will start his 'remission' phase. This is the start of a 2 year process. He will be admitted next Tuesday to start consolidation phase 1. He will have a bone marrow and spinal done in the morning and he will start a very heavy chemo treatment the next day. One of the chemo treatments will drip through his port for 24 hours. We have to wait until it flushes out of his system before we can go home. We have not told him he will be staying in the hospital yet. We are learning to give him little bits and pieces of information to him and not to far in advance. The hospital has many support associates that help him and us deal with the stay there. We plan to enjoy this week, while Nick is home and then start packing up for next week. His blood counts are back up to normal (for now) and his energy is back. Although I will be happy to see him stop taking the steroid drug..... he eats all the time, very demanding and cranky to.

Saturday, November 8, 2008

Day 23 - The Shannon Family

We are always excited when we here the news that Nick can leave the hospital. He learned how to swallow pills while in the hospital this time. (The liquid medicines did NOT taste good) It makes the event go much smoother and tastes better when we coat the pills with melted starbursts. Nick is very strong and tries as hard as he can to be an active 4 year old. He plays and rides his bike, but does tire very easily these days due to the chemo. We have been told in the hospital that it gets worse before it will get better. Nick's hair has fallen out and it is our challenge as parents to encourage him and let him know it is okay. He is feeling 'different' right now with how he looks and how people perceive him. He continues to be a jokster, even about himself. Greg shaved his head down to a #3 and told Nick he go lower when Nick says the word. For now, we cross our fingers that Nick does not spike another fever through the induction phase. Today he feels very tired and has slept most of the afternoon away. Monday is his next chemo treatment and then one week left for induction.

Thursday, November 6, 2008

Aunt Amy update - Nick's Home

Nick was released from hospital yesterday. His spirits are good and he is ready to be home with the family. Cousin Joey will be visiting today to play some 'toontown' and keep nick busy. It's day 21 of 32 days to go. Nick will be admitted back to the hospital on day 32 for the final 3 days of the induction period. Nick continues to amaze all of us, with his smiling face and outgoing personality. The family looks forward to some quiet time at home. And as always, keep Nick in your thoughts and we prayers.

Tuesday, November 4, 2008

Day 19 - The Shannon Family

Nick was able to come home for 8 days. The doctors say that is a long time for patients in the 'Induction' phase of his treatment. He received another dose of chemo today and would like to go home. If his fever stays low we might be able to leave in the next day or two. Today was a big day for Nick. Our child life supporter in the hospital helped Nick learn how to swallow pills using candy. He did a great job.... eating all the candy, but it was still difficult at night time when it came time for the actual pills. Everyday is a new day for us and we try to make things as easy as possible for Nick. He really has few choices on his treatment and the course it will take him. He played today with his new friend Sean, who also has ALL. Sean lifted his spirits for the time they played.

Monday, November 3, 2008

An update from Aunt Christa

Nick was admitted to the hospital late last night because of a fever he was running. After a blood test, it was determined he needed a blood transfusion. So far, there is no sign of infection and his fever has been within normal range. He has to stay in the hospital for at least 48 fever free hours. He is READY to go when the doctors give him the okay. He is scheduled for some more treatment, a spinal and a bone marrow aspiration on tuesday. Please continue to keep him in your thoughts. Nick has proven he is a tough boy and will fight like crazy to get to hear those wonderful words "you can go home now". Thanks for your support.

Sunday, November 2, 2008

Day 17 - The Shannon Family

Hello and checkin in:
Nick had a great week and even went to the Halloween party at Prospect Hill (daycare). His friends were very excited to see him and he dressed as spiderman. The kids trick or treated through each room and enjoyed the junk food after. He was tired after all the activities and we left a little early to go home and rest. The weekend has been challenging because his medications makes him tired, moody and active. The leg cramps and tiredness are new and we are working on helping him with the pain. Nick has shown us he has a high tolerence for pain. He is not afraid to give his orders to us and let us carry him to the bathroom. He spiked a slight fever tonight and we are waiting it out to see if we need to go to the emergency room. More to come.
We enjoyed getting together with our family today after Thomas's baptism.

Monday, October 27, 2008

Day 11 - The Shannon Family

We were surprised, scared and excited of the news that Nick could come home on Saturday. Mommy tried to keep him in a 'bubble' for the day, but it is hard with an active 4 year old. He seems to understand that he will have to go back for many more treatments, but still enjoys one day at a time.
First day of outpatient care went well. Nick handled the treatment great and was only sick a couple of times. He was excited to be home over the weekend and we hope he can stay home as long as his counts are good. We would like to thank everyone for their generosity, gifts, kind words, prayers and support. Tomorrow he will have a spinal and as long as it is negative he will not have another one until day 18. We are progressing through Phase 1 and enjoying each moment we have as a family.
We hope to add more photos on the website, once we figure out how to create an album. Please feel free to email us anytime......

Nick comes Home

To everyone’s pleasant surprise Nick was released from the hospital on Saturday. The doctors are pleased with his blood counts and reactions to the medication. Nick will continue to receive chemotherapy and spinals through outpatient treatment. Nick spent the weekend playing with his cousins and chillin at his house. As Karen, Aunt Christa and Grammy packed up Nick’s hospital room, they realized there was not enough room in the car for all the balloons. So Nick decided he would give the balloons to each of kids at the hospital. He walked the halls and handed out all his balloons to the kids on his floor and only held onto one, Spongebob. Today is Day 11 of Phase I for Nick’s treatment and he is on schedule and responding well to the treatment. Big hugs and kisses to Colby, Nick and Thomas from Joey, Megan, and Kendra.

Friday, October 24, 2008

Support for the Shannon Family

Nick's cousin Joey spent yesterday playing with Nick in his hospital room. They watched Spongebob, played pirates and ran the hallways. As Nick said to Joey “I am stuck in the middle of nowhere is this big bed”. The Shannon family greatly appreciates the outpouring of thoughts and support they have received from family, friends and neighbors. Nicholas is a courageous 4 year old who will inspire all of us. Over the next two years as Nicholas receives treatment to beat this disease, the Shannon family will be incurring enormous medical bills through co-pays, ER visits and medication. If you are interested in making any monetary contribution or provide gift cards, please send to the following address:
Nicholas Shannon Leukemia Fund
P.O. Box 531
Bellingham, MA 02019
All checks should be made to ‘Nicholas Shannon Leukemia Fund’
Please continue to keep Nicholas in your thoughts and prayers. We love you Nick!

Thursday, October 23, 2008

Day 4 - The Shannon Family

Nick started his first chemo treatment in the evening of day 1. During the day he had a very fun playdate with Michael from school. Michael and him roamed the hallways and had lunch in the cafeteria. His treatment started that evening and went smoothly. The next two days he received more chemo treatments. On day 3 Nick got to meet another 4 yr old boy with ALL who was staying next to him. They played all morning before it was time for Sean to go home. Nick's spirits were down since he could not go home too. Colby cheered him right up when he arrived that evening and BOOed his room. The Deer Run neighbors put together a basket of goodies for Nick. He was so excited he wanted to BOO other patients on the floor. Today, Nick received his last treatment for this week and the 'first' round. The doctors will continue to monitor his red and white blood cell counts as they will drop over the next week. His cousin Joey stopped by during the treatment and played with him in his room. Nick continues laugh and smile..... just as we know a 4 yr old boy should. Take care everyone and we will check in next week. God bless!

Monday, October 20, 2008

Day 1 - The Shannon Family

Hello Family and Friends,
Today is day 1 of Nick's treatment. He will receive chemo through his IV (port) this evening. We will be monitoring Nick over the next couple of days and see how his boby reacts to the Chemo. The side effects will come on gradually, nausea, bone and muscle pain. There are meds to help him through some of the pain and will adjust each day as needed. We will keep everyone posted on Nick's progress.
We are very blessed with a STRONG support system from our family and friends. We have appreciated everybodies well wishes, gifts for Nick and just a shoulder to cry on. We know Nick is a fiesty and strong 4 year old. We will beat this together. As Nick tells us everynight: "We love you all To the Moon and Back"

Sunday, October 19, 2008

The Beginning of Nick's Journey

On Wednesday Oct. 15, 2008, 4 year old Nicholas Shannon was admitted to Hasbro Children's Hospital in Providence, RI and diagnosed with Acute Lymphoblastic Leukemia (ALL). This is a very fast spreading high risk form of Leukemia. He has since undergone two surgeries to assess the cancer and put a port in. During the first surgery, cancer cells were found in Nick's central nervous system and chemotherapy was administered to his spine immediately. He has begun a courageous fight to beat this disease. We have set up this site to keep everyone informed of Nick's progress and will do our best to keep it up to date. We do ask that you limit the calls to the Shannon household. We appreciate everyone's concern, however, Greg, Karen, Colby and Thomas are also adjusting to thier new way of life and need thier time together when they can get it along with any rest they may find along the way. Nick will be in the hospital for the first round of intense chemotherapy expected to last 4 weeks or so. If this round works as it is supposed to, Nick will be able to go home and continue his treatments over the course of the next 2 years. He is a very strong boy and we ask you keep him in your thoughts and prayers. Life has taken on a new perspective for our family. You may leave comments on this site for Greg, Karen and Nicholas to read. We are also going to set up a fund and will post details for people to donate to help offset the enormous expenses the family is going to inccur over the next few years. You can always send gas cards, resturant gift cards, etc. We will post all this information soon. Thank you for your support, love and prayers. Aunt Christa and Aunt Amy