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.

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.

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!

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.

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!

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.

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.