Update:

Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Saturday, November 20, 2010

Done


We are officially done with chemo and steroids. The feeling: Good! Nick has definitely given us a challenge on his last week of treatment. He bargained to sleep in our bed at least 6 nights, which we agreed to. He missed school on Thursday because he was feeling 'rotten', but the funny thing was, he smiled all day while he was home. This was an emotional week for him and he took a lot of frustration out on Colby. Colby even asked us what he was doing wrong and we would remind him: "Nick is on the cranky medicine, you have done nothing wrong." Now the week has ended and treatment is done. Again, I do not believe we feel completely settled, but more relaxed and a little less anxiety. I am sure the anexity will come everytime Nick goes for blood work, but we will deal with that to.
We are going to have a little party in Nick's classroom on Tuesday. I will bring in some cupcakes for the kids. His teacher has been wonderful and she really wanted Nick to know how much she cares.
I could not resist posting the picture of the boys at the water park at Give Kids the World. Take care and I will post soon. Karen

Tuesday, November 16, 2010

Feeling a Little Lost

Hello,
Yesterday, Greg, Colby, Nick and I went to clinic for Nick's last chemo through his port. It was quiet for us. The boys played the Wii together and then worked on beads. Greg & I usually go separately, alternating every other week and we bring our laptops to do work. We both decided it was a day to take for our family and be together, so the wait at clinic was uneventful. Nick was coughing all weekend and feeling a little tired so I was surprised to see his counts so high:

WBC: 8.3
RBC: 10
APC: 6,000
He received his Vincristine and Methotrexate through his port and we were done for the day. I really thought Greg and I would be crying the whole time, but neither of us did. I think as our Nurse Paula said.... "You both look like a lot of the parents do on their last day... Lost." "That's okay because your life will start to change and try to get back to normalcy." Of course I had a good excuse to go back to clinic in 2 weeks and check his counts. He will also need his second flu shot and one more dose of the Pantemine (antibiotic) through his port. After his port is removed or as Nick says "de-accessed for good", he will remain on Bactrim for 6 months, while his counts fully recover. We have scheduled his spinal and bone aspiriation on 12/16. He will recieve his sleepy medicine, check counts and they will take a sample at this time. He will not receive any chemo into the spine, which is good news. Then we wait a couple of weeks and schedule for his port removal with the surgeon.
Nick will officially finish with his medicines (steroids and 6MP) this Saturday, so we are not quite done, but almost.
We took the boys to Dave&Busters for lunch and games. We all had a great time and just let the boys be boys. A few more days to go........

Monday, November 8, 2010

Next week is last Chemo Week

Hello,
We had a great week at the Shannon Household. Nick was back to himself after the last steroid dose. Not sure why he had a hard time with it and all the pain. The boys are getting back to a routine after the Disney trip. It definitely took them a little while to come off of cloud 9 and focus again. Colby asked to watch the Disney photo CD again this weekend. I am working on posting the pictures, should be soon.
I took Nick to clinic today. His counts were great:
WBC: 4.6
RBC: 10.6
APC: 3,000
He received his Methotrexate and will go back next Monday for the final week. He will start a cycle but only finish the first week of it. The reason for this is because his protocol (Dana Farber study/trial he is on) states the treatment will go for 2 straight years after he is in remission. He was in remission on 11/18/08. What this means is that the chemo killed all the leukemia cells in his blood during his 30 day Induction phase. He has remmained in remission this whole but because Leukemia is a blood cancer, there is always a chance of those cancer cells popping up again. Due to years of research doctors have found out that after 2 yrs (depending what protocol you are on, could be a little longer), that treatment can be stopped. So here we are..... 2 years later. The emotions were catching up to me today at clinic. One of my clinic moms (Jen) and I were talking about it and she was asking if we had plans for Nick when it is over.... I don't know yet. We still have the spinal and bone aspiration in Dec. and the port to be taken out. I definitely had to take some deep breaths when I was talking to Nurse Pat, Paula and even Donna, our parent consultant. I think the past 2 years Nick has endured so much and he is definitely one of the lucky ones to get through everything he has. When he was first diagnosed the Doctor told us to expect a lot of hospital stays, blood transfusions, platelet transfusion, bacteria infections and plenty of virus's. He never needed a platelet transfusion and he did develope C-diff and pneumonia, but was treatable through antibiotics. He was labeled the 'fever' child at clinic b/c of all the fevers he had last year, yet, he made it through all of it.
I guess the date caught up with me so fast today, that I realized next week is it. I doubt I will ever feel it is 100% over, we will have follow up visits for at least the next 5 years. Monday will be a tough day for me (and I am sure Greg to). When you rely on a medicine to cure your son and then it stops, the adjustment peroid has to come. I can't explain it, but I am sure my cancer moms out there know the feeling. The tears were flowing on the way home today, but that is okay because we have Nick. More to post later.

Sunday, October 31, 2010

Here it is..... The Long Post from Disney




Quick update. Nick finished his steroid week. He had a really hard time and I was traveling all week for work. I am lucky to have a wonderful husband who held down the fort while I was gone. Nick left early from school on Thursday and has been on/off pain through the weekend. He is feeling better and good news.... 1 to go. Okay, the following post is very long but I really wanted to make sure I kept the memories. I am still working on posting pictures....

Disney Trip with Make A Wish,

We are back from our Make A Wish trip to Disney. There is so much to talk about I am going to try and lay it out by day. (I hope to remember it all). We visited 6 parks in 5 days and met many characters along the way. We stayed at Give Kids the World and the place was very warm and inviting. It is made for kids and not your typical hotel stay. Each night there was an activity for the kids and each morning we had characters from the different parks come and visit. We began our trip on Sat. Oct. 16th. Our biggest fear before leaving was worrying about Colby actually getting on the plane. Of course he put our fears to rest and got right on…. So our story begins:

Day 1: 5am the limo shows up to pick us up. The boys were completely surprised and so excited to jump in and get to the airport. We arrived at GKTW (give kids the world) around lunch time and checked into our villa, had lunch and off to the pool the kids went. I attended my orientation program where they gave us our tickets to the parks and all other information we needed for the week. The kids rode the carousel and took a train ride and played in the candyland playground.
Day 2: We were up early, off to breakfast and then to the Magic Kingdom. We rented a double stroller and Colby walked the whole day. The third ride we took the boys to Thunder Mtn. ride. We told them it was just a train ride through the mountains… little did they know it was a roller coaster. After the ride ended we asked them how was it? Thumbs up, thumbs in the middle or thumbs down…. We got a thumbs in the middle and then we were told that we lied to our children… ooops that happens when we know how much fun they will have on the rides. We had pictures with Mickey & Minnie in toon town. We ended the day in Tomorrowland and riding the Buzz Lightyear ride. Colby really like the people movers ride. The first day went by so fast. Tom took a nap at lunch time and then he was back on the rides.
Day 3: Up early and headed to the main entrance of GKTW to see which characters would show up for autographs. It was Mickey, Minnie, Pluto and Goofy. The kids gave them hugs (even Tom) and had pictures taken. We had breakfast in the Gingerbread house and then headed to Animal Kingdom for the day. We rode the Safari ride first and it was amazing to see how close the animals were to us. The kids loved being so close to giraffes, elephants, rhino’s and many more. Then we went over to Rafiki’s planet watch and the kids brushed the goats and saw interesting insects and snacks. Nick was asking to go on a water ride and the weather was definitely hot so we headed to the Kali River rapids. Grammy stayed back with Tom while the for us took the adventure. We did not get that wet. (the 1st time) On our way over to Dinoland, Greg & I jumped on the Mt. Everest roller coaster. The boys did not want to venture on this ride but that was okay since it did go backwards and forwards in the dark. The coaster was a blast. In Dinoland you felt like you were at a Carnival with rides, games and prizes. We stopped for lunch at this point and Tom fell asleep. Nick was looking forward to going on the spinning coaster but unfortunately he did not make the height requirement. Colby was interested in seeing a 3D show called It’s Tough to be a Bug. There were a few warnings before you entered the theatre that it might be scary for the kids, it was. The seats felt like a bug had crawled through and we were sprayed with water, just a little but since the show was in 3D. The boys just closed their eyes when they felt scared. Tom did not really care, he watch the whole thing. The boys met Stitch, Rafiki, Flik (ant) and a couple more characters. That night at GKTW was ‘kids night out’ so we signed Colby & Nick up. The kids had a blast… not exactly sure what they did the whole time but Colby came home with a blue tongue and lips. The kids talked about a pie throwing contest. Grammy, Greg, Tom and I went out to dinner.
Day 4: We had a big day planned this day. 2 parks in one day. We started the morning by going to Hollywood Studios. We went straight to the Jedi training show. They picked kids out of the crowd for the training and Nick & Colby asked if they could be picked. They both were wearing their Make A Wish buttons, so they picked them right away. Funny story: The kids were doing a great job during the training program and then came Darth Vader through the doors. Colby all of a sudden got scared and ran off the stage. I explained to him that it was a privilege he was picked and he needed to get back on the stage and Greg had his ‘chat’ with him. Colby ended up going back on stage and battled against Darth Vader. The show was really cool and Nick ‘used the force’ on the storm troupers twice. Next was the Indiana Jones stunt show. We were given VIP seats with another Make A Wish family. Great show and if you have ever been to Hollywood studios you would know that it has not changed over the last decade. Greg brought us all over to the Muppets 3D show and then it was off to the Toy Story ride. On the way to the ride Tom was able to stop and see his Little Einstein buddies. He gave them big hugs and had his picture taken with them. The kids ended their day at Hollywood studios by watching the Playhouse Disney – live on stage. I am not sure who enjoyed it more, Tom or Colby. The smiles on their faces was awesome. On the way out of the park, Greg & I could not resist but to ride another coaster, so we stopped at the Rock n Roller Coaster starting Aerosmith. Our plan was to go back to GKTW and rest before heading over to the Magic Kingdom for the Halloween party. As soon as we arrived back, the kids were ready to jump back in the car and see Mickey again. Grammy and Tom went the beach party that was going on at GKTW that night. Magic Kingdom it was, at night and very crowded. The boys rode Buzz lightyear again and the cars and then it was off to trick or treating. Fantasyland was closed due to renovations but were able to go on some rides, Snow white, Peter pan and dumbo. The kids and I was pretty tired by 9pm, so we watched the parade, enjoyed the show on the stage at the castle and headed back to our place. We watched some of the fire works from our car. Colby actually cried on the way out when he realized this would be our last time seeing Mickey and the Magic Kingdom. We told him that we hope to go back a few years from now.
Day 5: We started the morning off with breakfast at the Coronado Resort. We were asked by the MAW (Make A Wish Foundation) to attend their conference. The employees were celebrating 30 yrs. There were a bunch of families who attended the breakfast. After breakfast we were brought into the conference room where all the employees were, it was a total surprise to them. They were cheering (for the kids), some were taking pictures and of course some with tears in their eyes. This moment was awesome, we had 3D glasses that showed stars all around the room. The Disney characters came out and gave all the kids high-5’s. It was a moment that we will never forget. We were not there for the rides, the food or anything else…. We were there to say Thank You. We decided to go to a water park today. We dropped Grammy off at her Uncle Renee’s house and we headed to Aquatica. The weather was perfect and we really enjoyed a family day. We enjoyed a lot of our time in the rapids and even Tom was having a blast. Nick ventured on 2 huge water slides while Nick & Colby played in the kids area. Colby actually took the challenge and went down ‘tunneled’ water slide.
Day 6: Busy day again. We went to Universal Studios and Islands of Adventure. The day was a blast. We started the day on the Jimmy Neutron ride. Another 3D ride, but still a lot of fun. Then it was onto the Shrek, were we had pictures with the cast. After that, we went to see Spongebob and had pictures with him. I have to say, I was very excited to meet Spongebob, he has been part of our family for a few years now.  We pretty much went on every ride we could, ET, The Simpsons, Men in Black, Jaws (which was very scary for the boys), Disaster and the day at Universal was finished after Grammy took Tom to see the Barney show. He had his pictures taken and hugged him. We were fortunate enough to have every character we ran into sign the kids autograph books, have their pictures taken and give them big hugs. The people at Universal went out of their way for the Make A Wish Kids. After lunch we walked over to Islands of Adventures. The day here started with Greg & I going on the Incredible Hulk roller coaster. The kids were excited to watch only….. The kids first ride here was Spider Man, they loved it and then had their picture taken with him. Next it was over to Jurassic Park. The boys were looking for a water ride to go, so we hoped on the Jurassic Park River Adventure. What they did not know is that ride took us up a huge mountain, in the dark and then down the flume, all through the water. The kids had fun but kept their eyes closed. Then it was over to Harry Potter. Unfortunately Nick did not make the height requirement and could not go on the ride, so Greg & I went on it. They had a small roller coaster that we rode with Nick after. Finally we finished the day at Dr. Seuss Landing. This section of the park was so much fun. We rode every ride, including one fish, two fish, red fish, blue fish. They had a little play area for the kids where they could take their shoes off and splash in the water. On the way out of the park, Greg & I were talking about how wonderful our week was. The kids were awesome, Grammy was a HUGE help and it was time to say good-bye.

We have many pictures and memories to last us. Thank you again to Make A Wish Foundation and Give Kids the World

Precious moments:
1. In the beginning of the week, each kid made a wish in the wishing well in the Castle of Miracles at GKTW. On our last night in the villa we were all talking about the week and how much fun we had. Colby asked us if we thought he conquered his fears. We said yes and explained how much he has overcome this week. Well he told us that was his wish for the week to overcome his fears.
2. At Hollywood studios right before lunch and Tom was so tired. We walked by the Little Einstein characters and Tom wanted us to stop, we kept going and he started to cry so we decided to go back and let Tom give them a hug. He hugged June (character) so tight and we all thought he was going to fall asleep in her arms, it made his day.
3. Nick using the force on the storm troopers during the Jedi training. He was pretty excited to be the only one in the group to use the force. Nick is still saying Thunder Mtn is his favorite ride.

Monday, October 25, 2010

Thank You Make A Wish and Give Kids the World

We are back from vacation and already missing the warm weather. We had an awesome, fun, and smiling time. The weather stayed aroud 85-90 everyday and no rain. We went to 6 parks in 5 days and all the boys kept up with us. Grammy was great and really helped out with Tom. I am writing my journal about it all and will post the details soon. You might fall asleep reading it, but I am trying to capture every moment during our week.
I took Nick to clinic today and his counts are great:
WBC: 5.3
RBC: 11.7
PLTS: 351 - finally a normal reading
APC: 3,400
He starts a new cycle today, which means steroids, Vincristine, Methotrexate and 6MP. This is his 2nd to last scheduled cycle. I spoke with Nurse Pat today and we are figuring out dates for the spinal, bone aspiration and port removal. Nick did see all his buddies again today and we are trying to get back onto our 'normal' schedule. More to come......

Friday, October 15, 2010

2 Years Ago Today




As a parent you always want the best for your kids. You might not be prepared for what is thrown at you but you have no choice but to go with it. 2 years ago today our lives changed forever. I can say forever because I do not believe there will be a day that goes by we will not remember this day. I can still remember Nick the day before I had to take him for blood work. The week before I had taken him to the pediatrics office because his neck (lymnodes) were so swollen and he was snoring at night. The doctor sent us immediately to the ER for blood work and warned us that they were checking for Leukemia. All his blood work came back normal and so we were sent home. The following week, we went back for more blood work because his neck was still swollen. This was on the 14th and the call came in on the 15th, while Nick was at daycare and enjoying picture day. (see picture) We drove to The Tomorrow Fund Clinic and was there all afternoon waiting for the final diagnosis. We told it was Leukemia and that there are 2 types (Pre-B and T-cell). The next morning it was confirmed that Nick had T-cell Leukemia, which is high risk and will endure more than 2 years of treatment. Here we are 2 years later and we are so proud of how Nick has done through treatment while still trying to be a fun 4,5 and 6 year old. I know I have shed more tears than he has through this battle.
We leave tomorrow for our Disney trip and of course we are all excited. I have attached a picture of the Pluto cake that the Make A Wish pals brought us. The limo will be picking us up bright and early tomorrow morning. The boys do not know about the limo yet, we are trying to keep some things a surprise. Tommy is battling a little cold so we are keeping him away from Nick. Greg and I are very appreciative of Make A Wish and what they have provided us for our trip. The generousity is amazing and we hope to pay it forward someday. We hope everyone has a great week and we post again soon. Take Care, Karen

Update: Tommy has an ear infection. I just gave him one dose of his antibiotic and hope to give another tonight. Nick and Colby seem to be fine for now....

Wednesday, October 13, 2010

We have had a great week and getting ready for our big trip. We leave Saturday for Disney World through the Make A Wish Foundation. They have granted Nicholas his wish and we will be staying at Give Kids the World. The kids are super excited and even Tom is walking around the house calling for Mickey Mouse. Greg & I are a little stressed and trying to get everything ready, but hey, no complaints we just want to get there. Nicholas learned how to ride his bike last week with no training wheels. We have been trying with him for a couple of months now and he was never interested in learning. I think he has seen some of his friends in the neighborhood ride and wants to join them. Nicholas has been feeling well but his counts do not show it. I took him to clinic yesterday and found out his counts had dropped. On the advice of our nurse we decided to keep Nick home today, as a precautionary. If he gets a fever, he would be admitted. He is acting great and you would not know it, but we also do not want to miss our trip.

WBC: 2.6
RBC: 10.1
Plts: 441 - this is high and has been, I guess it goes hand in hand with whatever virus he is fighting off
APC: 1,100 - high enough to receive his methotrexate
ANC: 300 - anything below 500 you get admitted if you have a fever, they consider you neutropenic

I will be updating one more time before we leave...... Friday Oct. 15th 2010.... 2 years ago on this same day..... Karen