The Shannon Family-- Snow Day and To Clinic

We had another snow storm today. Just when we thought the weather would stay warm, the March snow storm came and gave Colby a day off from school. He was so excited to be home. It is Greg's B-day today and the boys made him breakfast in bed (and ate it to) and gave him presents. Colby said his present was having the day off and getting to go to clinic with Nick. Clinic was very quiet today, I guess many kids stayed home due to the weather. Colby is always looking forward to meeting new kids, so maybe next time. Nick was great. Today, was the first time that Nick did not cry (or say anything) while his port was accessed. The nurses even had trouble getting blood from the port and had him moving all around, jumping up and down to get his blood flowing. He tackled the shot very well. I have learned the best way to handle the shot is to have Nick straddle his legs around me (less kicking to), which makes it easier for us to hold him down. His counts came back and they are fairly low. We were hoping to send him to Prospect Hill this week, but I think we have to wait one more week. To give you an idea of 'counts', here are Nick's:

White Blood Cell (WBC): 1.5 (Normal 5.0-15.0)
Red Blood Cell (RBC): 8.8 (Normal 10.5-13.5)
Platelets (PLTS): 89 (Normal 150-400)
APC Number: 336

He is close to what we call 'neutropenic', which means low blood levels. He has 3 more days of his chemo pill and then a week off before his next 3 wk dose. Hopefully we make it fever free. We hope everyone stays warm and we are counting down the days for Spring :)

We were so happy to have the Shannon family tonight. Nick enjoyed watching everyone play. He took a warm bath (because the Love house is so cold). joey made sure that Nick enjoyed his stay. They all really had fun playing videos games and computer games. Thomas and Kendra had their own competitions - Kendra likes to take thomas's pacifier and knock him over - but she doesn't realize Thomas will be bigger than her some day. Nick really liked having the 'comotion' around him although he didn't play much. It's just important to know that Nick's included even when he does not have the energy to play. Mimi and Thomas kept tickling Nick which made him laugh and Kendra of course stole his drink. I think Nick liked getting out of the house, which is getting harder each day, and enjoyed just having fun with the kids around. Mommy and Daddy got some social time as well. To all a good night. The Love's.:)

The Shannon Family

We weathered the steroids for the past 5 days and today was the last day. He is a ball of energy all morning long, eats lots of salty food and yells at everyone and then he crashes for a couple of hours. We love that he is smiling more now and trying to tell his silly jokes to anyone who will listen. We think the shots are wearing his legs down because he definitely gets winded just walking up our stairs, but his mind still has lots of energy to burn. He actually gained weight this week, which is great because he was not eating for a little while... too much sleeping going on. You can see his legs getting skinnier but his stomach and face looking bigger. We are waiting for the weather to turn warmer, so we can get outside and play. Nick is always cold (I guess having no hair will do it to you) so we keep him warm with blankets inside. Nick had another shot yesterday... one more to mark off the calendar. He is getting used to the routine at clinic now, which makes us feel better too.

The Shannon Family -- chemo today

We decided to go to clinic today (instead of tomorrow) and hoping Nick's counts were good enough to receive chemo. We made it and he received the chemo. He was not very happy about accessing his port again and waiting for the medicine but Colby was with us to keep us active. We have been asked again about what 'counts' mean and it is hard to describe for the beginners. The blood counts are read in different ways and depending on the treatment, the doctors look for the right counts. During Nick's consolidation phase II (now) we look at the APC level. This level has to be above 1000 to receive chemo on the 3 week cycle. If it is not, it means his body has not recovered from the last cycle (or a virus). So we continue to wait until his body is ready, which can put us behind the 30 week treatment. (again every 3 wk process for 30 wks). We can not pin point why he has been so tired lately (going on 2 wks) but we think it is due to radiation and the combination of this phase. His spirits are great and he tries so hard to enjoy himself while he has the energy. He has also learned the comfort of his bed when he gets tired. We feel we are on a roller coaster ride but for a 4 year old you wonder how they are. To see Nick, we know he is fighting the downs and living the ups of energy. Sounding like a broken record player..... we are back on steroids.

The Shannon Family - Clinic Today

Hello. I know it's been awhile since we last posted. Last week was a little crazy, trying to juggle the hospital visit and catch up on work. Nick spent most of the week sleeping and did not have a lot of energy. He went to school on Friday for a Valentine's Day party. I think he had fun. He was definitely tired out from all the fun because he took a 4 hour nap after. He seemed much more perky this weekend and we had the Love family over Saturday night for some fun. On Sunday we decided to take a drive and headed to Marina Bay for lunch on the water. We feel like we are holed up in our house for so long and just needed the fresh air. It is tough sometimes for Nick because he can not go places with the rest of the kids. McD's is out for now and the weather has been so cold, that Nick just hangs at home. I tell Nick that spring is just around the corner..... Greg took Nick to clinic today. We were hoping to start another round of chemo. (again, it is the 3 wk treatment, this would be #4, out of 10), but after his blood work came back, we were told his 'counts' were not high enough. We have to go back on Friday and hope the counts are back up. Hopefully we will not be set back too much. He did receive the shot in the leg today..... 11 down, 19 to go.

The Shannon Family - Home Again

We made it home yesterday. Nick was hoping for Sunday, but the doctors like to be cautious and wait for his counts to be a little higher. Sometimes I just feel like a broken record.... always talking about his counts, the lifeblood of Nicholas. It's scary to know that we are actually in a rountine when we go to the hospital. Nick requests the Wii system for his room, we order the same food on the menu, and he asks everyday if he can go home. We feel like a broken home when Nick is gone, and Colby especially misses him. After he received his blood transfusion he definitely perked up. He has been great today and even told Colby he loved him and to have a great day at school. It's amazing to see the different stages Nick goes through during these 3 week cycles. We take to good times and enjoy the moments and use the tough times to make us stronger. This week we hope to have playdates and send him to school for a Valentines party. It's time to have fun this week and not think about next. Yikes!!!!!!

The Shannon Family-- Surprised us with a Fever

As you know from previous blog, Nick had a good week. Eventhough he was tired he was still happy. We noticed him looking a little pale last night and kept taking his temperature. It seemed to be creeping up, but then he fell asleep and everything was okay. He woke up with a stomach ach last night, that carried into the morning. I took him temp. this morning and he had spiked to 100.4, which for Nick, is a high temp. and requires admittance to the hospital. He cried that he did not want to go, but I bought him the new Madagascar 2 movie today and convinced him he could watch it at clinic. See, the positive thing about spiking a fever during the day is that we can go to clinic and avoid the ER. Since clinic is open, we walk in and they accessed his port and drew blood right away for his counts. The counts were low (they call it neutropenic) and he was admitted this afternoon. He is having a blood transfusion and will hopefully get a good night sleep. We are hoping to be here for only a couple of days, but his counts will tell us when he is ready to go home. He has become more accepting to the 5th floor of the hospital, which makes it easier on all of us. It was good to have nana babysitting today, so she could take care of Thomas, while I took Nick in. We try not to schedule events too far in advance because we never know when something like this will happen. Of course, today and this weekend we had planned many activities.... and Nick was sad he could not have his playdate with Michael. We know he will be out of here soon and back to himself again. We have a free week of no chemo.... just the shot.