Tough Time with Steroids this week

Hello,
We had a great weekend. We were able to buy our Christmas tree on Thursday and then decorated the tree on Saturday. Nick earned his first Karate belt (yellow striped) on Friday night, along with Colby (purple striped). They were both very excited and we are so proud of them. I took Nick to clinic on Monday. It was uneventful and long this time. Nick received his Methotraxate and Vincristine. His counts were all normal except for his WBC: 3.6, it is still low. He started his steroids this week and so far it has been challenging. On Tuesday, Greg & I decided to take the day off and go Christmas shopping. I think Nick really wanted to come with us and he had a hard time at school and daycare. The school and daycare both worked really hard in keeping Nick and making him feel comfortable, but by mid-afternoon he had enough. We cut our shopping trip early and picked him & Colby up. Today was no different. Since I am working from home today, I ended up picking Nick up at school.
As a parent it is hard to watch your child be 'knocked down' again and then a week later, he is back to himself. This gets repeated every 3 weeks. It is a tireless process for us but one we know we must do. Nick cried for about an hour last night because we were watching the local channel telethon. Each class from the elementary schools sang songs. Colby's class was on TV and we were waiting for his class to come up. Nick was getting so upset and I think it was because he was sick on the day of taping and he was not on TV. These are just things we deal with and it has become a part of our life, Nick misses the things he likes to do, Colby gets to do them and Nick gets upset. It really hurts to see Nick miss special events, as he told us, he has missed 2 special events at school so far.
We are really trying to work with Nick and trying to find ways that will make him feel comfortable at school and daycare, so he can stay. Tomorrow we are going to bring in a small blanket for the classroom and when he feels like he needs a break, he can lay down. He is sleeping now. This Friday the boys have their Prospect Hill Concert and we are looking forward to the performance. It will be our third year going. Last year, Nick was going through radiation, hair loss and not a lot of energy, but he insisted on being in the performance. We have come along way in only a year and hopefully we adjust on steroids week and keep Nick going strong. Take care, Karen

Another little bug going around

Nick left for school yesterday feeling great. I ended up receiving a phone call from daycare that he had thrown up and had an upset stomach. I picked him and he felt warm, but not really hot. We waited until about 9pm last night and then decided to take him to the ER. We are not on schedule these days. All of our thermometers were broken and the one I ran out to buy last night did not work great. We really could not tell if he was spiking or just hot from the blankets. After 5 hours in the ER, 3 attempts to access his port, we were sent home. They gave him an antibiotic during our stay, but his counts were good enough to let us go. We kept him home from school today once we found out this morning that Nick threw up again in the middle of the night. He said, he was glad he made it to the bathroom on his own, so he did not have to wake us. He had been napping on/off all day today. I am thinking he just caught the stomach bug, which is probably going around between school and daycare.
Colby is really excited for Christmas and was hoping to get a tree last night. We told him maybe tonight, if everyone feels up to it. It is so hard to get into the spirit when we keep having set backs and definitely some lack of sleep. Tom is teething and waking up a lot at night now. We will just make some adjustments and hope for a better weekend. Karen

PS. I might have lost some of my perspective and the point of our blog. It has been a long week with some unexpected turns. While the intentions is to share with everyone Nick's progress and how we are all doing, this blog is also meant for Nick and hopefully he will be able to read it and truly understand how much he went through during his treatment. I am also hoping for him to see how people are encouraging him along the journey. (not me). He is one who deserves all the credit.

Nick at clinic

Hello Everyone,
The Thanksgiving Holiday is over and how quickly it went by. It is never a dull moment in the Shannon household. I ended up getting sick most of the weekend. I am pretty sure it was the swine flu, due to the symptoms I had, but I can not confirm this. We are fortunate Nick and the boys were able to receive their first shot of H1N1 and I am even thinking Nick could of had a mild form of this virus last week and past it onto me. We will never know but it's definitely frustrating trying to spend a weekend with your family and enjoying time off and then get sick on top of it. I think I am through the worst and now Greg is sick today. I really hoping Tom & Colby do not catch it, but not sure how we stop that.
Nick is great and asked to have Papa (Boston) take him to clinic today. We were able to make that happen and Grammy came over to help out. His counts were good. His White blood cells still low, at 2.4, but all other counts are normal. The boys had no school today, so hopefully we will be back on track tomorrow with school and daycare. Not to much else going on. We are planning on getting the Christmas stuff out this week, but we will have to see how everyone is feeling. Take care, Karen
PS. We would love to hear from anyone who is reading this blog. There are just some days when I do not feel like writing, but keep thinking people would like to know what is going on. I try my best to keep everyone updated with family events but not really sure if it helps.

Happy Thanksgiving & 2 visits

Hi All,
We hope everyone has enjoyed the Thanksgiving day. Nick woke up with a slight fever yesterday and we kept him home from school. He was very disappointed about not being able to ride the bus home from school with Colby. He is half day and always rides the bus home by himself. I took him to clinic to make sure his counts were okay. He had dropped about 20% in his white blood cells, but his APC was 7,300. They gave him an antibiotic drip that lasts for about 24 hours. The doctor mentioned if he spikes a fever again today after 1pm to bring him into the ER. Auntie Lisa hosted the Thanksgiving feast and Nick was so excited to go there today, that we actually showed up early. He was good all day. A little on and off with his energy. By 5pm, (after checking his temp a couple of times) we thought he had a fever, 101.1. Greg took him to the ER and the temp was at 97.9, normal. I think all that resting and under 2 blankets made him really hot. His cough was rough and the ER did a chest ex ray. Everything came out okay. His white blood cells did drop to 4.3, over 50% from yesterday. His body is definitely fighting something and we are lucky that his counts were high on Monday, because they are dropping. We plan on relaxing this weekend with the kids and taking it easy. Nick really wants to do so much, but when he gets sick, he feels so tired, so we maintain. I mentioned before, that at this time last year, we just came home from the hospital after a 9 day stay. We begged the doctor to let Nick come home, at that time, for Thanksgiving and were given strick orders to keep him in and under lock down. (Nick's ANC was 250 at the time, very low) Charlie (papa, Greg's dad), gave a speech today at dinner and mentioned about Nick being able to be here today. The dinner tonight really makes the family come together. We miss Tim & Anne from Maine and think about you and family all the time.
Greg & I both thought he would end up at the hospital tonight, but it is okay. We were able to be with family tonight and Nick had a great time. Lisa & Jack did a great job with dinner. Colby decided at the last minute to spend the night with Mitchel..... I guess he thinks they still have battles to settle. I can not say enough about how much family means to us today.
Greg and Nick are pulling into the garage and I am signing off to give more big hugs to our brave boy. 3 port accesses in 4 days. We are looking forward to a quiet weekend. I really do not think that will happen because the boys love being social and think the parents are so boring.... Take care. Love, Karen

Clinic Today & Tom

Hello All,
As we head into a long weekend and giving thanks, we would like to say thank you to all of you and everyone who has been there for our family. About 2 months ago Thomas had his 15 month check up. The doctor detected a heart murmur in him. His blood work also came back a little anemic. I think this is what happens when a child decides to not eat green vegetables. We have tried everything and he just does not like it. How can you not like green beans with butter & salt. Dr. M. decided to schedule Tom for a visit with the cardiologist. The appointment was today.
Tom was due for another round of blood work and Nick for chemo. We (Greg & I) took both the boys to clinic. Debbie does a great job of drawing blood for the kids and Tom did not even cry until the needle was pulled out. He is such a trooper. Tom & I then headed over to the Pediatric Heart building.
I can tell you that Greg & I did not really prepare ourselves for this day and we did not talk about it a lot. As I was leaving Nick & Greg the tears started to come to my eyes, but I really believed everything would be okay. We have been through this and we can handle the visit. Tom had an EKG done and then I met with the doctor. Tom was great through everything and babbled away while eating goldfish. The doctor said everything checked out fine and he is okay. It was a relief, but for some reason, I knew he was going to be okay. You can definitely say, we were much more relaxed about the visit than before everything has happened with Nick. I can not explain it and even seeing Tom with the stickers and cords hooked up to him through the whole process, I was calm. You know, it has to be done and it did not hurt him, that is what matters (no pain, we have seen a lot of that through Nick). We will take him back when he is 3, just to make sure everything is good.
Tom & I went back to clinic to pick Greg & Nick up. Nick's counts were great. A little surprising:
WBC: 10.5
RBC: 11.2
Plts: 309
APC: 8,700
Neutrophil: 72% (the neutrophils are the percentage of the mature white blood cells to the immature white blood cells, the higher the percentage means he is producing more mature white blood cells..... not cancer cells)
We are looking forward to a few days off and Nick being off steroids for the Holiday weekend. We have to get creative because are greatful for 3 VERY active boys.
HAPPY THANKSGIVING and give extra hugs to the people around you and the ones who you are fortunate to see this week. Enjoy the day and take care. Karen

Great Weekend for All

Hi,
Greg and I had our weekend away. We had a wonderful time to relax and de-stress some. We met some wonderful families and know we are working together in every effort to help Nick. The 80's Prom dance on Sat. night was a lot fun. Many of the councilors & parents dressed up in old prom dresses and bow ties made of colorful tape. Without trying to get too deep into the weekend, Greg & I realized how fortunate we are to have each other and how strong our relationship has grown from this experience. As Father Dom stated during his presentation: 'Happy Parents, make Happy Kids', plain and simple.
Greg took Nick to clinic on Monday. His counts were great:
WBC: 5.4
RBC: 10.4
Plts: 260
APC: 3,500
They decided to lower his Methotrexate does this round and then try to bump it back up the next round. The reason for this is because he was sick two weeks ago and they want to make sure the chemo will not drop his counts drastically again. He is back on steroids this week and sometimes I think he is actually playing us. He moaned about going to school yesterday and then the teacher emailed to let us know that he felt tired and had to lay down by himself. He was scheduled to go to daycare, via the van pickup, but I ended up going to get him and bring him home. He came home very happy, played with Grimace and then took a nap. Today, he took the van to Prospect and then ran into Debbie, who was picking up Maggie. He asked Debbie if he could go home with her and wait for Michael to get out of school. Of course, with his sad face, she could not resist. He is at Michael's today playing. He will should sleep good tonight. I think it is better he is on steroids this week before we get into the Thanksgiving Holiday weekend. Take Care, Karen

Hello,
My friend Debbie sent this picture of Nick & Michael over to me. We took the boys to St. Rocco's in Franklin for the Italian Fair back in the summer. The boys had a great time. I can remember Nick getting really upset because he was not tall enough to the ride the big rides. I went on one of the big rides with Michael and Nick cried the whole time. It just reminds me how tough he is. He does not want anything to get in his way.
The Hole In the Wall Group sent us an invitation for a 'Great Escape Weekend' at the Heritage Hotel in CT, couples only. We signed up for this weekend awhile back but were never really convinced we would actually be going. We can not commit to anything in the long term, we plan our schedule week to week now. Well, here it is and it is time for us to get ready to go. This will be the first time we have left all 3 of our children in over 2 years. We are so excited to go, yet apprehensive too. The coordinator asked us to bring a picture of our children and a picture of our family. I immediately pulled out the picture of the 3 boys that was taken professionally after Christmas of last year. At the time, my plan was to have Tom's picture taken only, since I missed so much of him in 6 months. Nick was not suppose to leave the house because his counts were real low but he was so excited and wanted his picture taken. We were scared the whole time and tried to keep Nick away from anyone walking by the photo area. I can look back now and say I am so happy we captured this moment for Nick. He had lost just about all of his hair, he looks pale, but he is smiling. Greg & I laugh at each other because we are the worst people when it comes to taking pictures. We are lucky to remember to bring our camera and then pull it out of the bag. We will be bringing this picture with us and a picture of Greg & I at my High School prom, yes that is right, they are having a 'Prom Dinner Dance' on Sat. night.
We informed Nick and Colby of our big weekend and Colby said it was okay. Nick said we could go for 2 nights only and we had to promise we would be home by Sunday. I am sure I will be crying leaving the house and part of the time away from the kids. We know this good for Greg & I, but also hard to be away. There are many parents who are not able to go these events because their children are in the hospital battling cancer or really sick. We are so fortunate to have Nick back in good health mode and this opportunity for us. I believe the coordinator will probably have seminars and presentations and we are hoping to meet some parents who are going our same journey. I think most of all we would like to relax. Between us both working, Nick going to clinic, the boys in sports and Tom a very active child, there is not a lot of time to rest.
Nick will start another round of chemo & steroids on Monday. He was taken off of the 6mp pill last week when we went into the Hospital, so we have had a little break from everything. Unfortunately Nick is so conditioned about his medicine that he asked us for his pill last night before he went to bed. We explained that he gets a break for a week and he said to us: "did you ask the doctor? Is that okay?". He is a fighter and he believes his medicine will help cure him. We continue to pray it will.
Thank you to everyone who is helping out this weekend, a big family crew is coming together, we appreciate it. Take Care, Karen