Quick Update before We Take a Break

Hi All,
I just wanted to let you know that Nick's red blood cell transfusion went fine. He went with Grammy and according to her 'Nick called all the shots'. He told her what to do and what games he wanted to play at clinic. His only complaint was that the transfusion took too long. If that is the only complaint, we'll take it. Grammy bought him a lemonade on the way out. Nick will finish his class today and the 4 of us (Tom will be at daycare) will head into Boston tomorrow for a Red Sox's game. We are very excited about the game since this will be the boys first time to Fenway. As an added bonus we will be going on the field, prior to the game, to watch batting practice. Greg is soooo excited about the experience and the boys think they can play to. This is a new adventure for us and are looking forward to a great game.... Go SOX! Nick has reminded me that he needs a souvenir before we leave the game. It was so funny because Colby asked Nick 'what is a souvenir'. How many 5 yr olds would have to explain to a 6 yr old what a souvenir is? We are crossing our fingers for NO rain tomorrow.
As I mentioned before we will be going to Camp Sunshine next week. The camp starts on Sunday, but since Nick needs chemo on Monday, we will go to clinic first and then drive up after. The boys are looking forward to a 'vacation' in Maine. This weekend we will be busy for us to. The Tomorrow Fund is having a family picnic on Sunday in Warwick, RI. We will be going to the picnic and hopefully seeing some of our friends from clinic. It still amazes me how strong the parents we have met are. These children have cancer or are in remission and yet they let nothing stop them when it comes to playing. They definitely give us strength and help us through the day.

We hope everyone has a great week, I will not be posting another blog until I get back from vacation... I need a little break and we hope to have lots of pictures to share with everyone when we get back. Take Care... Signing off! The Shannon Family

Uneventful week turned into ER visits

Hello,
To our surprise Nick started spiking a fever Thursday night and then his temp. went back down Friday morning and spiked again Friday late afternoon. Greg took him to the ER and they accessed his port, drew blood and gave him some antibiotics immediately. We had a feeling he might be fighting a little virus because of his cough and a little runny nose. Also, Tom (our 1 yr old) had caught a virus as well and was fighting it off. Nick's ANC number: Remember this is the number that shows his 'immature' white blood cells (which can NOT fight off virus's) to his 'mature' white cells = 975. Anything below 500 is considered neutropenic and he would have been admitted. Waiting for that number is always scary because we really do not ever know how his body is fighting and if it has enough 'ammunition' to fight off a virus. His red blood cells were at 7.4, which is borderline a transfusion, but the doctors decided to send him home and bring him back on Saturday for more blood work and another round of antibiotics. Nick is such a trouper and was okay with everything. I think he really liked the idea that he did not have to spend the night and agreed to come back the next day.
Greg brought him again on Saturday afternoon. As I have stated before, you really have to be on your toes in the ER. The nurse tried to access Nick's port the first time and used the wrong needle.... Greg had to point that out to her. The second time she could not get it, so Greg requested a nurse from the 5th floor to come down and access it correctly. I heard Nick was a brave boy throughout, but he was left with some bruising on the skin of his port. His counts came back about the same and the doctors sent Nick home again. This week I have Nick signed up for a Ready-Set-Go Kindergarten class in the morning w/his friend Michael. I took him there Monday morning and picked him up at lunch time and headed down to clinic w/Colby. His red blood cells were still low and we are heading back today for a transfusion. The process can be a little frustrating. I think the clinic doctors had planned on a transfusion on Monday, but we did not have enough time (for clinic hours) to give him one. The ER doctors never mentioned it to Greg on Saturday, so Nick gets his port accessed again today. Grammy is going to take him today... it will the first time Greg or I have not taken him. He said he wanted to go w/Grammy today.... what a difference from just 9 months ago. We'll let you know it goes.
take care, Karen

Uneventful Week

Hi Everyone,
I know I owe everyone a post. Things have been uneventful for us, which is good. Nick and Colby went to clinic on Monday for Nick's IV Methotrexate. His counts were very good, despite this cough he has. The cough seems to come and go, but the doctor said his lungs sound good, so I guess there is no need to worry right now.
Our only big news is that we are going to Camp Sunshine (Maine) in two weeks. A while back I mentioned this camp in a blog and we originally had plans to go in February, but had to cancel because Nick was not feeling well then. Camp Sunshine is a camp for children with life-threatening illnesses and their families. The camp is non-profit and run through volunteers and sponsor donations http://www.campsunshine.org/. We will leave on Monday, Aug. 3, after Nick's clinic visit. We are really looking forward to a family getaway and some time to relax and regroup as a family.

On a side note, we ask that you continue to pray for all the kids that are battling cancer. I have met many friends and follow various websites like ours. The journey of these kids can lead to many different paths and some to earning their 'angel wings'. There are two very special boys out there who fouhgt like crazy and both past away this past Saturday..... we pray for Kyle (www.caringbridge.org/co/kylel) and Aidan and their families. Aidan is a 5 yr. old boy who battled T-cell Leukemia for 1 month and passed away (July 17th) due to complications in the treatment. He was a fighter and our hearts go to his family. Take care.

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