Steroids Reduced

Nick is on steroids this week. As previously mentioned, we started another round of chemo and steroids. His dose is only a third of what he usually received. We have seen little improvement this time around. He is very emotional and little things he can set him off. He had about 3 different melt downs yesterday and it is hard to comfort him and try to change his 'mood'. The good news so far is that he has NOT complained about pain yet and he said his legs were feeling better yesterday. We will know more as the weekend approaches. A lot of people have asked me about Nick's treatment and the chemo he is on. I found a website (imagine that, I have been reading about MANY other kids w/ALL), that had an attachment describing the different chemo drugs and the effects of each. If you scroll down this blog and on the right hand side you will see the link... chemo information. Nick has received the following chemo throughout his treatment:
Doxorubicin, Vincristine, 6-MP, Methotrexate, L-Asparaginase, Steroids & Cytarabine-in spine. I am not sure if I am missing any drugs, since the first month of Nick's treatment was a blur and I do not have the protocol during that time. These drugs are powerful and to think of all the stuff that has entered Nick's little body.... he is amazing.

I really needed to post today because we wanted to share with everyone that Colby lost his first tooth. This is a big deal for a 6 year old. The tooth fairy came last night and he received $5 for the first tooth. (very generous tooth fairy) Colby continues to go with the flow and will do whatever Nick wants him to do. The boys now have sleepovers almost every night. Nick is having bad dreams lately (or maybe it is just an excuse) and can not sleep by himself. It's okay by Mom and Dad. We enjoy seeing ALL the boys happy.

We are Officially in Continuation Phase

Greg, Colby & Nick all went to clinic today. Nicholas is now in continuation phase. This is the last and longest phase of his treatment, at least 70 weeks. This phase is similar to the previous phase, in which we work off of 3 wk intervals. Day 1 (of 3 wks) Nick receives Vincristine and Methotrexate via port, he is on 5 days of steroids and 14 days of 6MP-chemo pill. He is not on any medicine days 15-21. Then we repeat the cycle above. The only big change (and we hope to see a change) is the steroids. The steroids are reduced down by 2/3. We are hoping this change will alleviate some of the pain, moodiness and cravings he has been experiencing throughout the last phase. He has been in physical therapy for the past few weeks and the times in the pool have helped him to. We are SLOWLY seeing improvement in his leg movement, but that is only when his counts are up. Nick definitely has a different outlook at clinic. He does not cry to have his port accessed and he holds still. (very important when you get a needle stuck in you). Nick knowing that he does not have to get a shot in his leg, has made things easier for all of us. Who could blame him for acting so unhappy all those weeks. He is fighter and that's why he pushes our buttons. Nick started camp last week. He goes 3 days a week, 1/2 day only. Colby goes to the same place, but 3 full days. They both loved it and had so much fun. It was actually weird for me to have Nick gone 3 days in a row. We have adjusted to him being home everyday (except the occasional visit to daycare every once in a while) since October. It is also a good feeling to know he is trying to get back into his 5 year old body and enjoy time with his friends. I know he needs, that because Mommy can be pretty boring while she works during the day. Take care everyone, Karen

Happy Birthday to Tom who is 1

Hello All,
We had a great 3 day weekend for the 4th. Nick slowly bounced back to himself last week after the blood transfusion. Nick is back to his good spirits and his usual demands. I think we have spoiled him too much with McD's food and that is all he asks for now a days. We are working on changing his diet slightly and hoping he will have more energy in the coming weeks. Clinic was uneventful today, which is always great. Nick wanted Grammy to sit with him while they accessed his port. This is a great step towards more freedom for mom and dad. We are hoping Nick will let Grammy take him to clinic w/o us some days. His counts are very good:
WBC: 2.4
RBC: 10.8
PLTS: 140 - little low, but should go back up
APC: 1,300

We really enjoyed spending time with Thomas this weekend. He turned 1 on the 3rd. I was thinking about last year at this time and remember seeing fireworks from the hospital bed. Tom was in the room with me and I could see various towns light up the sky. Greg took the boys to the Franklin fireworks at the High School and they had a blast. At the time, Nick was feeling great and we did not have a clue how quickly our lives would slowly change by October. We tend to feel quilty from time to time by not being able to spend as much time with Tom. He is such a wonderful baby and so happy all the time. We wish him a Happy 1st Birthday and looking forward to an eventful year.... and more quality time with our little one.

Pain, Pain, Go Away..... Shots are Done

We had such a great week with family and a painful week for Nick. Where to start...... The Wykoff family drove up from NC to visit (Karen's sister and family). We were all so excited to see them, it has been a year since we have seen them. The Love family hosted them but we had sleepovers with Justin and Luke each night. Nick was on steroids last week and the pain started to kick in by Thursday and we could tell his red blood cells were dropping. He was tired most of the weekend, but tried to make the best of it. He would lay on the couch and watch all the kids play, at least he was part of the group. The best part of the whole trip is just having the entire family together. Karen's mom and dad were there to along with Aunt Jean and Julie. The time goes by so fast. I know Greg and I have tried to thank all the people out there and we really do not do a good job of recognizing our family.... they keep us together, they support us not matter how hard our day has been and we know they will always be there. So, thanks from the Shannon Family.
Greg and Colby took Nick to clinic on Monday. We knew he would need a blood transfusion and receive his last shot. He received his last shot and did not even cry..... he asked the nurse to stop right before the shot because he wanted to say one last thing: "I never want another shot in my leg again." and then it was over. While I feel like 30 weeks has been going on forever, it has also flown by. Greg and I always re-play in our head from day 1 (when he was diagnosed) and forward. We are still moving forward with his protocol and this is our goal. As we had suspected, Nick did need a transfusion, but we decided to wait until today, since he was coming back for chemo anyways. The clinic had the lab 'order' the blood and they had it ready today for him. The visit was actually pretty quick.
The PAIN. Nick was again, after the steroids, in so much pain. He has been screaming out in pain for the past two days and can barely walk because of it. We have been alternating the Tyl w/cod. and morphine to help it, but sometimes there is nothing to help it. It is so upsetting to see him like this and at the same time, we try to get him to move around a little to, hoping stretching his muscles will help. It's frustrating to not understand exactly what is causing the pain to be so severe. We think steroids, but it could be the new chemo he is on. Since every child is different the doctors can never pinpoint exactly why each child experiences pain and where they experience it. Sounds like a lame answer to Greg & I, but I know we are not alone. We look forward to the next day and hope he is stronger. I am off to help Greg with Nick's daily bath routine. For some reason, he likes to takes his baths everyday around 4-5pm, he is like clockwork. I guess that is a good thing.... we always have a clean boy. Take Care, Karen

1 to Go & Nick Graduated from Pre-K

Hi All,

I can not believe Nick has endured 29 shots in his leg/muscle. He is truly a strong child. I know everyone hears us talk about the shots in every blog, but there is a lot of anixety for Nick when he knows the reason we are going to clinic that day is the shot. It hurts a lot for him and the hardest part is that he does not have a choice. He does not have the option to make decisions for himself or really know how to deal with the side effects. We are so proud of him for everything he has been through and will continue to go through. So we are down to one shot left, next Monday and two weeks left of this phase of his treatment.

He started his steroids again this week and it is already an emotional rollercoaster for him. Little things bother him so easily and it is hard to calm him down. We will all be happy when his dose decreases in the next phase.

On a very positive note, Nick graduated from Pre-K at Prospect Hill on Friday night. The entire staff puts on a great show and the kids sing songs and receive diplomas. Imagine that, you get to graduate before entering Kindergarten. :) Prospect Hill has been wonderful to Nick and really helped him keep in contact with his friends. We wanted to make sure we thanked everyone and the kids for thinking of Nick all school year, so I have attached the Thank You note I read Friday night:

As many of you know Nicholas was diagnosed with Leukemia on 10/15/08. That day he was here at Prospect Hill when we got the call to go straight to Hasbro Children's hospital. After receiving the news and digesting how our lives were going to change overnight, we knew we had to keep all our kids going and try to keep them involved in everyday activities as much as we could. In the beginning we thought Nick would not be healthy enough to attend school due to his chemo treatments and side effects of the medicine. We realized quickly that Nick is a fighter and a very active child, especially when you give him what he wants. He missed his friends immensely and we thought it best to bring him to Prospect as often as we could throughout the school year.

We would like to say many thanks Miss Michelle, Miss Andrea and the entire staff, Donna,Beth, Renee . They have always included Nick in everything the class does, even when he was unable to attend. We would like to say thank you and good luck to all the kids here and especially Miss Michelle’s class. I was amazed everyday that I walked into his classroom and how excited the kids were to see Nick. They accepted him with or without hair and the cranky days when he was taking his medicine. They told him stories and kept him up to date on things he missed. He would come home from school every time so excited that he was able to go. These moments and the moments your children have shared with Nick will always be remembered.

We, the Shannon Family would like to give Special thanks Miss Kristen for being flexible with Nick’s schedule and my last minute calls to say Nick is coming today. Her selflessness has helped us to keep Nick going.

Good luck to all the kids who are here as they embark on the next journey of their life. Each journey is unique and special, don’t let it pass without notice.

There are so many people we need to thank for supporting us and keeping us going. We will try to give you all big hugs.... to the Gillespie family for giving Nick a place to escape and play with Michael. The dinners from Deer Run & Taylor Rd gang, we appreciate it and the Cowles family for your kind thoughts. Everyone else out there praying for Nick, we thank you and we are looking ahead to our next phase. Still a long road, but we are lucky for the support. Take Care, Karen

2 to Go

Hello. We had clinic Monday and Tuesday of this week. Everything went very well and Nick was even somewhat happy. On Tuesday the Child Life Specialist asked him to participate in the arts and crafts activity and he did. He had a lot of fun and we even stayed a little longer than planned. We have 2 shots to go and one more round of high dose chemo and steroids. The next phase of the treatment is maintenance and this will last for at least 70 weeks. We are looking forward to the reduced dosage of the steroids, which should help Nick with all the pain he has had. Colby ends school next Monday and he is really excited to go see the new clinic. He has not been to clinic in a long time and I believe he is feeling 'left out' of the trips we take 2 days a week. For Colby, clinic is a place to meet new kids and do fun activities for a little while. The IV's on poles, kids in wheelchairs and kids with no hair does not even phase Colby. It is amazing how adaptable Colby has been to all the changes around him. We are very proud of him and can not believe his Kindergarten year is over. We are planning on sending Nick to Kindergarten next year, he will go half day. We are hoping to keep the boys close together during their school years and we felt Nick was ready to go. He is really excited about riding the bus.... the scariest part for Greg and I. We prefer to drive him and keep as many germs away from him as we can. We'll deal with it in September. Next week we have my sister (Christa) and family driving up from NC. We are looking forward to some time off and enjoying the cousins being abel to see each other. Take care everyone, Karen

Oh, I wanted to mention that Nick's hair is starting to grow back. We are pretty excited about it and coming just in time for the summer and sun. I think he is already sick of everyone telling him they see hair on his head. We love it.

Nick spiked a Fever

I was surprised yesterday morning when Nick woke up and was very hot. He insisted on wearing feety pj's to bed the night before, which did not help his temp. We tried to cool him down some by changing his clothes and putting him in a warm bath, which helped some. By lunchtime, I realized that we really needed to take him to clinic to find out how his counts are. His temp. was wavering around 99-100.8. Anything over 100.4 requires us to go in. Nick was great and agreed to go. (I had to bride him with a McD's meal). He did not even fight when the nurse accessed his port and we played games while waiting for his blood work to come back. The good news is that his ANC level was NOT below 500 (if it was, we were going to be admitted), so we were sent home and put on 'fever' watch. Nick woke up this morning full of energy and a smile on his face. He feels much better today and we hoping it was just 'chemo' fever. This week was his second dose of the Meth. chemo and I think his body was having a reaction to it. We are happy that we can relax (a little) and enjoy the weekend. The rest of his counts were low, but will hopefully go back up soon.
WBC: 1.5
RBC: 8.6
Plt: 102
Have a great weekend. Karen