200th Post and 1 thing left to do

Hello, We had a very eventful (in a good way) day at clinic. Nick was scheduled for his Lumbar Puncture (spinal) and bone aspiration at 11:30 in the PICU recovery. Greg & I decided not to leave until 10am, and relax a little at home. As soon as we walked into clinic, Santa Claus came in to see everybody. Nick told him he really wants a new blue bike this year. He learned how to ride w/o training wheels at the end of the summer and is ready to step up to the big kids bike. He had his picture taken and he built a wooden frame, at clinic, to put it in. Clinic also had a table full of toys for each child to pick one. Nick picked the Spiderman Monopoly. He had his port accessed and his counts done. Then we headed up to the 5th floor where Flashes of Hope was taking photos. We have been very lucky to have flashes of hope capture Nick's progression through his treatment. I will have to make a collage for him some day. Then we finally headed down for the procedure. Greg & I were able to stay in the room and hold Nick while he fell asleep. He was really good and only complained about being hungry a few times.... I think he was just bored. We have seen the spinal procedure before. The doctor inserts a very small needle in the spine and fluid drips out into the sample tube. The fluid was very clear and exactly how the doctor likes to see it. The bone aspiration was very interesting. They insert a needle, the size of a food thermometer into the back of his hip bone and then use a syringe to draw the marrow out (which is red). He received more sleeping medicine this time and he slept for an extra hour before waking up. He felt sore last night where the spot was but it did not stop him from running around and going to Cub Scouts with his brother.
The next step is to schedule the port removal and EKG on his heart. We are working on scheduling something in January.
We look forward to enjoying time with friends and family this weekend and let the boys be boys. I will try to update after Christmas with the exciting gifts the boys will receive. Until then, be safe, Merry Christmas and don't forget to give your kids the extra hugs they deserve.

Hello. We have been very busy lately with seeing friends and families. There are always parties and playdates to keep up with. We love the chaos around this time of year and the boys are really getting into Christmas. It is easy to remember that 2 years ago we celebrated Christmas at home, just the family and the next day Nick spiked a fever and we were in the hospital until New Year's. At this time, he was also going through radiation. We passed up on many invitatios to keep Nick safe and away from too many germs. It feels good this year to let our guard down (some) and not hesitate to go places and to see Santa.
As we are in the middle of the hustle and bustle of Christmas, The Shannon Family would like to thank all of our family, friends, nieghbors, co-workers and clinic moms who have stood by us for the past couple of years. You know who you are and we are greatful to have you in our lives. You were there for us when we needed Colby picked up from the bus stop because Nick was in the ER. You were there to just check-in on us or bring us a meal. Even the days when I did not feel like talking to anybody or leaving Nick while he was home sick.... you stilled called and never gave up on us. Nick is our hero and we know how many fans he has.
Next Thursday will be the Spinal (Lumbar Pucture) and bone aspiriation (they go into the hip bone for this). He will probably be sore from the aspiriation but he will not be getting any chemo, which is great. We do not have a port removal date with the surgeon yet, but will book that next week as well. Take Care, Karen

Disney

I know it took a long time to post and it is only a few of the pictures I have. Still working on downloading my camera to capture other parks.

It's been 10 days since I updated the blog and feels good to take a little break. Our Thanksgiving was nice, especially watching the Patriots win. The boys were very well behaved at Auntie Lisa's house and tired by the end of the day. The boys had the day off of school yesterday, so Colby came to clinic with us. Nick recieved his pentamine and his second flu/H1N1 shot, in his leg, of course. He refuses to have a shot in his arm. He remembers the shots he received in his leg and continues to think it 'hurts' less there. We tried to tell him, it probably hurts more, they use a longer needle to get deep in his muscle.
Reflections:
We are not completely there yet beleiving Nick's treatment has ended. Greg & I continually talk about his spinal coming up, his EKG on his heart and the port removal. As much as you feel comfortable going to clinic, they are like family to us, the past will always be with us. I saw a little boy yesterday, who recently had surgery on his brain and you could see the scared look in his eyes. We remember how scared Nick was on the first fews days in the hospital and then his visits to clinic. You feel so much for these families and wish you could do more. Greg & I have been talking about ways to give back and we can help,so we have made this our first New Year's resolution for 2011. (I know it should be losing weight for me, but that will come next). We continue to keep ourselves busy with activities filled on weekends and looking forward to house full of family/friends on Christmas.

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

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........

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.

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.

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......

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....

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

Another milestone for Nick!

Nick is doing well. He handled his steroids last week real well. How well you ask? He handled it so well that he climbed a 40 foot rock wall and did a 900 foot zip line... twice!!! It is amazing to see how strong he is. I climbed the rock wall after he did and when I got to the top he was there to help me up. This all occcured at Hole in the Wall. Yet another amazing weekend with the most amazing of people. I actually did not want to go but felt that I should go for Karen and the kids. I am so glad I did. It is the type of place that rights you. It makes you realize how special life is, how you can not take a momet for granted and the people at hole in the wall don't take it for granted. They help the kids to learn how to enjoy the moment no matter how bad they feel. The kids all just enjoy the place and it goes by so fast. The other real interesting thing that happened at hole in the wall is that we stayed in a cabin for the first time which was awesome. The kids loved it and that is good since that is where they will stay when they go to camp there by themselves.

Nick's counts for the week
WBC 6.6
HGB 11.7
PLTS 407 (H)
APC 4000

Karen is traveling the next few days so it is all boys all the time at our house. I know that I already miss her and I am pretty sure the boys miss her too. Nick was feeling it last night before she left and demanded to sleep in our bed. It is funny how they show their worries in different ways.
Back to work now. Have a great week.
Greg

3 to go

This week is our 3rd to last (cycle) treatment. I can not believe it and October is already here. Nick is great and really looking forward to going away. He started his steroids this week and is 1/7 so far sleeping in our bed... Hoping it will not last all week. Colby misses him when he is not sleeping in his bed, since they share a room now.
I have attached 2 pictures of Nick. The second one was taken in 5/09 at Hole in the Wall and first one was taken this past month at clinic. I think one of the hardest parts about treatment is the changes we see in Nick. I have a daycare picture of him on the day he was diagnosised and to see the different changes his body has gone through over the past 2 years is amazing. He gained a lot of weight due to the steroids, which contributed to some of his pain, he lost hair, grew it back and lost it again last Christmas. Now it is back again and he is starting to feel stronger in his legs. He is not running as fast as his friends but he tries. I truly believe no matter how many changes Nick goes through, it will never change his personality and who he is. He always gives us his great smile and keeps fighting.
Clinic was busy on Monday and just about all of my 'Monday group moms' where there. The kids had fun running around and playing together. His counts were good:
WBC: 7.4
RBC: 11.3
APC: 6,300 - high but the doctor thought he could be fighting a virus, which we believe he is. He has a little cough going right now, so we will keep a close eye on him for fevers.

Between the last 1.5 weeks all of us in the family, with the exception of Nick was sick and with a fever. We could not believe this virus swept through our family but missed Nick. It is just the little things that excite us.
Nothing really new to report this week. I took Nick to clinic on Monday. He is feeling great and the doctor reminded us of the 'countdown' and asked how I was feeling about it. I think it was her way of preparing us for what is a head. Many parents have told us of the emotions/emptiness/excitement that goes along with end of treatment for your child. I am so lucky to have my clinic friends that I can reach out too. I told her my countdown is for Disney (from Make a Wish) and I have not thought about anything past this event. The boys are excited and they received a countdown calendar that they cross the days off. Nick is having fun at baseball and learning all the basics. Colby has decided to not play football this year but hopes to get back into it next year. We are going to a Cub Scouts meeting this week.... something Colby has been asking to do since last year. Nick will start another cycle next week, so we are looking forward to the annual Fall party at our friends house. Take care. Karen

counts:
WBC: 4.4
RBC: 10.1
APC: 2,800

Wow, No Pain! Ambassador Day for Nick

This week has been much better than last, which is why we try to look forward and take things week by week. Colby will try again this weekend at football and we hope to see him continue to shack his fear. He does not want to quit and we support his decision. He did end up with a fever on Tues. night and into Wed. I am thinking he caught a strand of it from Tom’s virus last week.
Nick ended steroids on Tuesday morning and we thought for sure he would be in pain by the afternoon. To our delight he has not complained about pain at all this week. His appetite was there but I think he was to busy to think about any pain. In the past he would lie on the couch and watch TV and not feeling up to do anything. He has been busy with school and baseball practice this week and just being active. He is back to his smiling self again and we love to see it.
Today was a special day for Nicholas. He was awarded a medal from the Governor of RI and represented the town of Bellingham as an Ambassador. The Governor is very supportive of the Tomorrow Fund and has been giving away awards to the kids for the past 8 years.
The head of the Tomorrow Fund, Dr. Swhaltz gave us a great analogy today. She talked about how Hurricanes are always forming out to sea and we are made aware of them through the news. We go out and buy groceries, milk, etc.. and get ready for the storm. Sometimes the storm hits big, sometimes it blows over and other times you are in the eye of the storm. All the families and patients who have cancer do not have the chance to be ready for the storm. You are told your child has cancer and the next day your world is turned upside down. There is no notice but we as parents have to ride the storm and do the best we can for our children. Kids are resilient and the parents are there to fight for their child.
As I mentioned before, this month is National Childhood Cancer Awareness Month. It is through donations that the Tomorrow Fund exists to help families in financial need and support. They receive 50-70 newly diagnosed cases of childhood cancer a year. They unfortunately expect this but continue to look to the best possible treatment available in the USA. Here are some facts:

• Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
• Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
• The cause of most childhood cancers are unknown and at present, cannot be prevented.
•
• One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
• On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
• While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
• Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
• Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
• Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

Greg took Nick on Monday to clinic and his were good. They have decided to increase his Methotrexate dose. He is still not at 100% dosage for his protocol but they keep increasing until we reach it. In the past when they increased the dose he would have a fever or be neutropenic so then it would be lowered again. It is a balancing act on Nick's body to see how much he can tolerate. Some kids can tolerate the full dose and other's can not. Nick seems to tolerate the full dose for a couple of weeks and then his body gets tired, fever starts and back to the ER. We hoping this will not happen this time around. Karen
Counts:
WBC: 7.2
RBC: 11.3
APC: 6,300

Challenging week/weekend

Hello,
We have had an interesting few days. There have been challenges, melt downs and smiles for the past few days. I am not sure where to start this blog but I will back it up to Friday morning. Nick is on steroids and had a tough week last week for school. He was really moody at nighttime and ended up sleeping in our bed during the nights until sat. Friday morning was really hard for him. He did not feel like going to school and was asking to be picked up after lunch to come home. He is full day now and the teacher is wonderful with him and lets him rest on the mat when needed. I explained this to him on Friday morning but he still cried at the bus stop and went to school. I called the school around noon to check on him and they he had just come in from recess and was ready (his quotes) "To walk home and see his mom." I picked him up and he was fine and happy once he got home. Saturday was no different with his mood swings. He was very excited for the sleepover at Papa Boston's house that night but kept asking all morning when he could go. Nick was upset with every little going on in the house and Colby was making him upset. (eventhough Nick was bugging him to) He decided to not attend the birthday party the boys were invited to and stayed home. He play his first baseball game in the afternoon but was not really into it. Again he asked to go home but we convinced him to stay and be with the team. Once Papa showed up Nick was all smiles and had a great time being away for the night. Papa said he was good but still has those moments when he really wants something and can get upset quickly. We believe these steroids just make him so moody that once he something stuck in his mind he wants and does not get it... he changes and the meltdown comes. His last dose of steroids (for this cycle) is tomorrow morning. Hopefully he will be okay at school and no pain. Greg will take him to clinic in the afternoon.
Colby has been playing football for almost 6 weeks now. He has had his ups and downs with the sport but continues to tell us how much he likes it. The challenge we have is during game time. As soon as he sees the other team he gets scared of them. The coaches really try hard to make him feel comfortable and tell him everything is going to be okay. Today was very hard because he turns his emotion into crying and not wanting to play. Greg and I are not sure where to go with his behavior because you practice to play the game. Greg and I want the best for Colby and to overcome this fear because we believe the fear is generated from football alone but other things. Emotions are running a little high tonight but felt like I had to write it all down. I am traveling on business the next 2 days and we have laid out a couple of things for Colby and Nick to do while we are gone.
I have to include Tom in the blog to, he was a little cranky this weekend to. He was sick with a rash and a little fussy. As soon as we gave him tylenol he was back to himself and feeling much better today. He continues to amaze us with all his sentences (not just words), his smile, laughter and giving us hugs.
Although I feel like I am complaining in this blog, we move forward and make adjustments.... a learning experience that will challenge us to the end. That is why we have kids right??

Yesterday was Nick's last spinal for his protocal of ALL T-Cell. I have mentioned before how much he has gone through and what a great child he is. He was great yesterday during clinic and only asked a few times for food. It was a long day for us, Nick was up at 6am and he did not have his procedure until noon. He could not eat before his procedure so basically the last time he ate was 6pm the night before. The procedure went smoothly and the fluid looked clear dripping out of his spine. We do not have pathology reports yet, but we remain optismistic everything is ok. When everything was done, Nick was snoozing and Greg & I just looked at each other.... We both know,it feels great on one hand to think no more chemo will be injected into his spine but then you think.... is that okay? Could he relaspe? Nick knows he is almost at the end of his treatment but I try to be careful in telling him he will 'never' have this done again. Greg & I are just not there yet.
He woke up quickly after the procedure and felt a little dizzy, but still tried to play his DS right away. We promised him lunch on the way home and we stopped at a small Italian restaurant with patio seating. Luckily Nick chose to sit outside and enjoy the warm weather. He did mention he felt like throwing up and then he was okay. His food came and after a few bites he did throw up... good thing we were outside. After that he said he felt better and continued to eat half his meal. This has happened to us before and I just think it is a combination of the chemo, his sleepy medicine and the fact he likes to get up right away after the procedure and leave.
He is back in school today and looking forward to seeing his friends. It will be interesting if he tells them about his day yesterday. His story usually goes like this: "I was not in school today because I had to get sleepy medicine so the doctor can stick a needle in my back. I know this because I always find a band aid on my back when I wake up." Another round of steroids start this week along with 6MP. We hope to enjoy this weekend with the great weather and Nick sleeping over at Papa Boston's house. Karen

Great Weekend and It is that time again

Hello All,
We have a wonderful long weekend with the family and friends. Colby had his first football game and Nick will start baseball this week. We enjoyed having some friends over on Saturday night, 4-wheeling, and smores by the bonfire. Monday we took advantage of the sunny weather and headed to the beach for the day. The waves were great and Nick and Colby ditched their boogy boards for body surfing. My sister and he kids joined us and we had a fun time.
Tomorrow Nick is scheduled for his spinal (lumbar puncture). He receives this procedure every 18 weeks and I can not believe how fast the last 18 wks have gone by. This is positive for us because we are moving further out to acheiving our goal of being off treatment. It will be a long day for us. We go to clinic to access his port, get his counts down. He will receive Vincristine through his port and steroids and Methotrexate through his spine. We go down to the PICU recovery floor and can watch the procedure. The doctor will also take a sample from his spine and send it off to pathology to check for any leukemia cells. We usually have the answers back that day but could be on Thursday. Nick is not a big fan of getting his 'sleepy' medicine and always wakes up right away. They like to have him lie down for 30minutes after the procedure is down but he is usually up and telling us it is time to leave 15 minutes after he is done. We'll take him to lunch and then home to rest for the day. Since this is a start of a cycle he will also start 5 days of steroids and 6MP at home. Hoping tomorrow goes okay.
I forget how easy it is talk about the day tomorrow. Nick has endured over 12 of these procedures in the past 2 years, while on chemo, taking steroids, through radiation treatments and he can still have a smile on his face after we leave the hospital. Greg and I will be anxious tonight and go through the motions with Nick tomorrow but the constant worry will be there until we actually have the tests back.

First Day of School

Hello,
I have to start the post with catching up on the weekend. The boys went to Auntie Lisa's for a sleepover (even Tom) and had a great time. Thank you Auntie Lisa. I heard all 3 boys were well behaved and had fun swimming in the lake. Greg & I had some time to and took advantage of the 4-wheeling trails behind our house. We headed out for a 3 hour journey.
Colby & Nick started school today. We were very excited to get them on the bus but also concerned how Nick would handle a full day of school. Last year, he was in the half day kindergarten program and was usually wiped out by the time he got home. Today, everything was fine. The boys are now playing legos and enjoying being inside, away from our heat wave. Greg took Nick to clinic yesterday and his counts were good:
WBC: 3.9
RBC: 10
Plts: 473 - high, not sure why
APC: 2,500
He is scheduled for his 18wk spinal (lumbar puncture) on 9/8. He is not happy that he has to miss school so early in the year but this could be the last one. We have a 3 day school week and then a nice long weekend. Take care.

September is National Childhood Awareness Month. Click on Cancer Facts for information on childhood cancer. There are ways to help out: donate blood and donate platelets. I will try to post more facts throughout the month....

Week is Over -- Great Weekend

Hello All,
The week of steroids were okay. Nick was definitely very emotional and meltdowns came everyday. He was getting upset over the little things and then it just escalated to food and not looking at him the right way. One day I sent him to his room to chill out and he ended up throwing everyhing around. He then came down stairs and pulled one of our kitchen drawers out and dumping all the stuff. I was a little surprised to see this much aggresstion in him but then again, it has been almost 2 years worth of steroids in his body. After his sadness came the love and happiness, the Nick we know. He would calm down and give me a hug and tell me how much he loves me, and the family. He gets over it pretty quickly. That is the thing about kids, they forget and move on and be happy. A little challenging for the adults to see it, deal with it and know it will be okay. Greg and I try to talk to him about the episodes a day or so later and let him know it is okay to feel that way and we are here for him. It is not okay to take it out on his brothers and us and yelling. We try to do our best.... As we are starting to say, another round of steroids down, hopefully only a few more to go.
On a great note, we (Colby, Nick and I) spent Saturday night at Aunt Amy's house for a girls night and kid night out. We had a great time. Nick was in pain most of the time and luckily I brought all the pain pills I could. He went through most of them but really handlded everything well. We have figured out, as long as he feels comfortable where he is, then he can get through the pain. He is astute to his vocabulary that he did say he felt 'left out' and 'alone' at times and people do not understand his chemo. Every child was great to him, I know he was feeling different and wanted to express it. Of course, by Sunday morning he was ready to go and back to himself. Which bring us to clinic:
I decided to take my chances (keep up with me on this) and bring Colby, Joey and Nick to clinic. 3 active boys and the lecture about behaving came way before we walked into clinic. They were great. It was a long day today. I know the clinic was short on staff and we ended up there for about 3 hours. The boys were good because we had the Wii to play and plenty of snacks. Nick's counts were high... to be expected aftet steroid week, but also counts we have not seen in a while.
WBC: 10.3 - normal range
RBC: 10.3
PLTS: 416 -- that is high
APC: 7,400
We will see next week what the 'real' counts are because they will probably drop and level off. He is on 6MP still and the upped dose. Nick is looking forward to his playdate tomorrow and the last week before school starts. Wow, time for 1st grade and full day of school.
This Saturday the kids (yes, all 3) are going to Auntie Lisa's for a sleepover, with their friend Brian. They are very excited and looking forward to swimming in the lake. Tom does not know yet, (of course, he is a 2 yr old) and will hopefully be good for Auntie Lisa. We will post later on their adventure. Take care. Another week down.... yes, scary we are starting to talk about the end. We pray it will come. Take care. Karen
Oh yeah, above is a picture of the boys at clinic. We can not leave out Tom. Tom was running around in the rain outside and decided sunglasses were necessary. Enjoy.

Back on the Steroids

We had a great weekend and definitely one to remember. We spent Saturday at Auntie Lisa's lake, going paddle boating and fishing. Sunday we decided a family day to the beach was needed. The weather was a little overcast and windy but that did not stop us from having a blast. The waves were huge and the boys brought their boogie boards. Nick was riding the waves and crashing in the water. It was nerving wrecking for me to watch him because he would go under and it took a few seconds before I could see him come back up. He would come up smiling and running back into the ocean. We have not seen Nick be so strong in the water and enjoy himself so much. The bigger the waves the more fun he was having. Colby had a rash on his stomach from the day before at the lake so the salt water stung a little. He eventually got through it all and joined Nick in the water. We've been telling Nick this week that when he feels sad or something does not go his way to remember the ocean and waves he road into shore.
I took Nick to clinic this week. It was uneventful.... which we always like. His counts were good and the doctor has decided to increase his 6MP dose, Vincristine, Methotrexate and 5 days of steroids. As I mentioned in the past, we would like him to be at 100% dose for all his chemo. The doctors have decreased it in the past because of his virus's and being neutropenic. Hopefully he will stay fever free during this cycle. He seems to break a fever everytime we increase the dose. Steroid week is only half way through and he seems okay. He does have little meltdowns over little things. We have 2 weeks left before school starts and I am looking forward to it. The summer has been great and I am sure the boys enjoyed not having a schedule and staying up late most nights. I will be meeting with Nick's teacher next week to update his 504 plan and already write down the dates he will be out of class for Sept.
Counts:
WBC: 4.2
RBC: 10.0
APC: 2,500

On a very positive side note: I spoke with Nurse Pat on monday about our Make A Wish Trip and planning it during the start of Nick's cycle. She said since we are in the maintenance phase of his treatment we can push the start of the cycle out 1 week. Yes, we can go on the trip and Nick will actually be PILL FREE the entire time.

Just a quick update today. Yesterday, the boys, Joey and Megan went to Newport to set sail on a sailboat. The program 'sail away' was sponsored by Hasbro Children's Hospital. They all had a great time but were also scared as the sail boat sailed further out to sea. Aunt Amy and Tara (our wonderful sitter for the summer) accompanined the kids.

Click on this article. I can definitely relate to the entire piece. As we start to approach our date, there are still numerous questions that go through my mind. To think back over the past 2 years and see everything Nick has gone through and then wonder.... what will come next. There is always the looming words 'side effects' that come to my mind. We can not react to anything until we see it. Greg & I both believe we see some changes in Nick. The innocence was taken from him the day he was diagnosed and now he knows more at the age of 6 than most of us. He helps the nurses attach and unattach his tubes from his port and helps insert his blood into the tubes for the lab. The steroids really do a number on his attitude and feelings. We will continue our journey with the positive attitude and adjust how we see fit. Karen

Clinic

Hello,
We are all well here. Nick is feeling much better and back to himself this week. On the way into clinic today Nick asked me when he was going to finished getting his medicine. I told we are scheduled to be finished in November and then he said: "So I do not have to go to clinic after that". I told, no, we will still go for updates and see our favorite nurses, right? He said: "Yeah, I will miss them if I do not see them." It is amazing how the people at clinic have become like family to us or maybe our security blanket is a better way to put it. So, yes, I have stated Nick's scheduled end date above but Greg & I do not really look that far out. The thought of it is exciting but scary at the same time. We are not ready to take the step into 'Life after Cancer yet', which is okay as long as Nick is doing well.

Everything went well with clinic. Counts are good:
WBC: 3.3
RBC: 10.0
APC: 2,600

He received his methotrexate and will start another cycle next week. I think I am organized with Nick's schedule but I just learned today that I am not. I write down the start of his cycyle's and when we expect his LP (spinal) to be performed. Well, I just found out I missed a week in his cycle and had to re-do my calendar. (No big deal, right). Well, it turns out that we will now be going on Nick's Make A Wish Trip at the start of his cycle and not at the end of it. We know how the start of it goes and how Nick feels by the end of the week. I can not believe I did this. We will still make the best of it and have a blast. It is just a bump we'll get over. Karen

Back to the Usual

Steroid week is over and Nick is back to himself again. We had a wonderful time at the Red Sox game and the Picnic in the Park after. We decided to take the T into Boston and Colby was very scared to ride the train but once we got moving, he was okay. We did not get to the game until the 5th inning because we knew we were staying late. Nick was great up until the picnic. He was having a lot of pain from the steroids. We brought his codeine and morphine with us but ended up going through all of it by 7pm. We received blankets for the picnic and you can see Nick took advantage of them. Colby was running all over the field and really enjoyed seeing Blue Man Group play. We really wish Nick could of enjoyed the experience as much as Colby but we are thankful for the opportunity to go. (You just have to make the best of the situation).

I took Nick and Colby to clinic on Monday. The place was very busy and we there for about 3 hours. Nick's counts are good and he recieved his Methotrexate.

Good Week for Nick

Nick completed his round of steroids for this cycle. He was pretty good this week, only a few meltdowns and lots of french fries to curve his appetite. One morning he cried for an hour b/c he wanted ice cream for breakfast and I told him to eat something healthy first and then he can have ice cream. It is amazing to see him turn into a different child when the meltdowns occur. You know he will snap out of it and forget all about it but watching him can be sad. He ended up having a sleepover at Papa's (Boston) house with his cousin Megan. They both had a great time and I believe getting him away from our house is good for him.
I received a call yesterday from the Make A Wish Foundation and they were given 4 tickets to the Red Sox on Sunday and the Picnic in the Park charity event after the game and she offered it all to us. We are very excited and the weather should good. We have never been on the field before and we are even thinking of bringing Tom. You might be wondering why they called us and I have not actually blogged about Nick's Make A Wish Trip. For us, it is to far out to think about. We are making plans, have our plane flight and know were we are going but I try not to get to excited until the date gets closer. Of course it is Disney World and we are staying at Give Kids the World. Check it out. I have heard some many wonderful stories about this place. We are still humbled by the generosity people give to help kids. There are our family, friends and the many foundations that have given so much to our family. We thank all of you who continue to support us through our journey.

Great Vacation

We are back from vacation and had a great time. The weather was perfect and only rained one night. The week was very eventful and Camp Sunshine was filled with volunteers and loads of activities. At the beginning of the week we had NESN come and sponsor Camp Sunshine. Click on NESN for the quick show. Yes, you can see Greg & I walking around in the background. I was going to give an interview but decided the kayaks were calling instead. The boys had a great time. Nick was very tired in the beginning and ended up with a fever by Tuesday. I took him to the Portland ER where he received an antibiotic and we were able to go back to camp. Tom had blast when he was with us as a family. He had a tough time transitioning in the 'tot lot' but opened up by the end of the week. We believe the person who made the most of camp was Colby. He made friends and tackled some of his fears. He went on paddle boats, kayaks and bass pro fishing boat. In the evenings there were talent shows, masquerade parties and a dinner for the parents. Greg & I were able to relax and peek in our kids having fun.
I took Nick to clinic yesterday and everything was fine. I explained to the doctor how concerned we about these fevers that keep popping up. She said his counts were good and it was likely a virus so we are continuing the same dose as previous cycle. He received Vincristine, Methotrexate, 6MP and steroids.
I hope to post some pictures this week. Take Care. Karen

Camp Sunshine Here We Come

We will be leaving in Sunday for our family vacation to Camp Sunshine. Greg took Nick to clinic yesterday for his 'Monday' chemo. It was only Methotrexate and his counts were good. He will now have a 10 day break (instead of 7) from his chemo. He was hesitant to go yesterday because where his port is located, the area is really sore for him. I guess between going to the ER and clinic over the past 1.5 wks does leave a good black/blue mark on the spot. He is back to himself today and the boys are playing with Michael. I am excited to take a break from blogging, work, and everyday chores for a little bit and just focus on the family time. Take Care. Karen

Back to clinic today

Just when Karen writes that all is cool. Not so much! Nick woke up in the middle of the night and threw up. He had a low grade fever 99.4. He stayed in bed with me and Karen went to the couch. Nick then threw up again at 4am and his fever spiked to 100.3. Nick went back to sleep only to awaken at 5:30 and do it all over again. By 7am he threw up a fourth time and then his temp went to 101. Karen got dressed and brought him to clinic. Thankfully his counts were good. I don't know all of them as Karen just stated that his APC was 6900. He got some antibiotics and two bags of bolus to help make sure he does not become dehydrated and back home they came. Hopefully he gets through this quick and can keep on track so that he can enjoy his vacation next week.
Greg

Everything is Cool

Tuesday, July 13, 2010Everything is Cool
It is actually very hot here in MA and we are in need of some rain. I do say cool because Nick is great. He finished his steroids on Sunday morning. He started complaining of a headache, his throat hurting on Saturday afternoon but we believe this is from his 6 yr old molars growing in. His dentist appt. was on Monday and they confirmed that a couple of them are starting to pop through his gums. I am sure it is sensitive and we were able to give him some Tylenol for it. He had a very busy weekend with the Wykoff family in town and the family sleeping at our house for the weekend. We enjoyed the friends coming over to join us on sat. night. All the kids had 4 wheeler rides on Sat. and Sunday.

I took Nick to clinic on Monday. It was very uneventful and the place was quiet. He recieved his Methotrexate and I booked him an appt. for this Friday. We are leaving for Camp Sunshine on Sunday and Nick needed to recieve his next weeks's chemo (Methotrexate only) before we go. On Friday they will access his port, check his counts and if everything is okay give him his dose. He does not mind because he knows we will be able to go on vacation as scheduled and not a day late.

I am not sure where to start the post today: the fun stuff or the frustrating stuff. I will start with the frustrating and end on a happy note. The weekend turned out awesome and I will get to that in a moment. I am now at the ER with Nick because he spiked a fever this afternoon. He was warm most of the night but no fever. Greg brought him to clinic this morning and he was fine. His counts are pretty good to. He mentioned to them about just giving him an antibiotic because of last night and they said no, no fever. I brought him to the ER tonight. As usual his port is not accessed yet. The nurses spent about 35 minutes talking about the process (which should have alerted me to start with) and then proceded to try and access. The needle was not pushed in enough at all, not sure what she was thinking and Nick started crying. The whole process sucks. I am now waiting for a 5th floor nurse to come down and access him. I guess it will be a long night because we usually average at least 5 hrs after the port is accessed. I am sorry to complain and I think I should be greatful this is only the frustrating part of the whole process. I know we will not be spending the night. I am pretty sure he will get an antibiotic and be released.

Updated: Port accessed by 5th floor nurse, first try and she did great.

Onto the fun stuff: The weekend was a blast. As I mentioned before the boys had so much fun on the beach and jumping off the boardwalk. They told everyone at the party on Sat. We spend the weekend (yes, the older boys & Greg camped out) at The Holmes House. Thank you so much for having us. The kids swam in the pool and another milestone for Nick: he actually swam on his own in the deep end. There are definitely times lately I have said to myself: 'This kid has cancer?' It was great to see our friends and I know there were amazed to see how well Nick is doing. They had lots of questions for us in general and even some of the kids asked questions. The people who know me understand that I am not afraid to talk about Nick, the whole process and the fears we will always have. He is a strong little boy. Colby was fantastic this weekend and is enjoying his summer. He is excited to tent it again. My older sister Christa and her kids are up for the next 2 weeks so we are looking forward to the time we get to spend with them.

Happy 2nd Birthday Tommy

Tom will be 2 tomorrow and our day is filled with fun, fireworks, pool and spending time with close friends. I have ordered an American Flag cake to celebrate with Tom tomorrow. I can not believe he will be 2. He was only 3 months old when Nicholas was dx and there were many nights I was not home with him.

The boys slept over Auntie Michele's house at the Cape last night and Greg, I and Tom drove down today. We had an awesome day and the boys ended up jumping off the bridge and into the water. Colby was very scared but once Greg picked him up there was no going back. Nick had Brittany hold him and two of them just counted to 3 and away they went. As everybody was packing up the beach stuff, I sat with Tom in arms for awhile. It felt so good to hold him and listen to the ocean. Of course as I thought back over the past 2 years and how much Tom has grown tears were coming to my eyes. He has adjusted to his surroundings and continues to challenge us each day. We love you so much Tom.

I forgot to mention that yesterday a playdate for nick turned into a Mohawk. He lookos so cute and it really suits him. I will post pictures of him soon.

Have a safe and happy 4th of July. Karen

Our Three Sons

Wow! Our 3 wonderful boys. We recieved the pictures from Flashes of Hope this week and I could not resist uploading this one. Flashes of Hope came to Hole in the Wall over Mother's Day Weekend and took a bunch of pictures for us. They are a non-profit organization and their goal is to put smiles on kids faces and hold the memories of them. Colby, Tom & Nick - this picture truly relects their personalities.

You can see how far we come in year. The picture up above is 2010 and the other one is 2009 both taken over Mother's Day Weekend. Enjoy every moment with your children, they grow up to fast.

A normal day at clinic and some new athletic milestones

Nick, Colby and I went to clinic today as Karen is travelling again. Everything was quite routine except that Nick forgot his shoes this morning (now before anyone blames me, I told him, "I saw your crocks outside go out and get them and get in my car". He didn't get them). So he was trying to hide his feet but to no avail as Lori the nurse came in a pronounced to all he had forgetten them. It was pretty funny. Counts are good. We are going to increase the methotrexate next cycle and probably the 6mp the cycle after that.
APC:2100
WBC:3.3
HGB:10.9
PLTS: 392
On to my second subject in the title. Nick rode his bike with Karen and Colby to Walgreens on Saturday. This is by far the longest bike ride Nick has ever gone on and I was expecting that he would be useless the rest of the afternoon but we had forgotten about a party at my sisters house so we packed the kids up and headed over. Nick, Colby, Joey and Brian all swam across the lake with Mitchel and Alex. Yes, across the lake. They all wore life jackets but swam the whole thing. It is not a short swim so Karen and Amy went and picked Nick and Joey up in the paddle boat while Mitch, Alex, Colby and Brian all started walking back with the snapping turtle that Mitchel caught. Luckily for them they were picked up by Mitchels friend and drove home. Not sure Colby or Brian understood that the walk was a mile with no shoes on. So Saturday was quite an adventurous day for the boys and of course Tom was hangning back at Auntie Lisa's beach trying to surf on some body boards. For a kid who turns two Saturday he sure has no fear! Happy 4th to all. Have a safe and great holiday.
Greg

I can definitely state steroids were okay physically this week but not as much mentally. It is just one of the side effects we are worried about, his emotional state. He was feeling great by Mondy. We had a busy weekend with the boys…. I know you have heard this before, we like to stay busy and enjoy our time with family and friends. The boys ended their last day of school on Friday and it was off to see Toy Story 3 in 3D with Michael and Maggie. They loved the movie and I think Debbie and I enjoyed being inside in the AC, it was hot that day. Saturday was Colby’s baseball pool party at his coaches house. I brought Nick with me so he could play with his buddy Brady. Nick was so excited to go, but then decided he did not want to swim when we arrived and he would feel more comfortable going to Owen’s Bday party at the Kenshu Karate. I guess it was a good decision for all of us because he had a blast and was exhausted by the time he got home. He started to feel pain by late Saturday and of course slept with Mommy that night. We decided to go to the beach on Sunday for Father’s Day. Nick was excited to go (sound familiar) but once we got there he kept asking us ‘why are we at the beach so early in the morning, we should come later in the afternoon’. I had given him a Tylenol w/cod before we left and I think the medicine was catching up to him. Luckily he slept for an hour under the towel and woke up as our NICHOLAS. He was so happy, but decided it would be best to eat 2 hotdogs instead of swimming in the water. Colby and Tom loved the water and really had a good time together. Colby is our fish in water and Tom just follows the FUN.
I took Nick and Colby to clinic today. Colby was actually shy at first with everyone and was hesitant to see Nick’s port get accessed. (sometimes I need to take a step back and understand his feelings and what he must be thinking. I have grown so accustomed to it, like second nature). Colby is growing up and we are proud of the strides he has made with our journey and the adjustments we have made at home.
Nick’s counts were high, which we have not seen in a while. They are high because of the steroids (it can give a false read, but still okay):
WBC: 12.3
Red Blood Cells & Platelets: Normal
APC: 9,000

I believe the doctor will decide to increase his 6MP and Methotrexate starting the next cycle.

Happy Father’s Day to the most wonderful Father’s, husbands I know. My husband, my dad (Papa Boston), and Papa Charlie. We love the strength of our family has shown and continues to stay strong. Karen

Sorry for the quick update, I am in Penn. on business this week and just got online. I am traveling again next week, so Greg is holding the fort down.

Ugh Steroids

We are half way through steroid week and Nick is good. He seems more down lately than usual and very sensitive. He is eating a lot and a mixture of all the stuff he usually eats. It is the last week of school and I am not sure if he is just so excited about everyday during spirit week or really not feeling well. He has complained the past 2 mornings that he did not want to go to school. He gets all dressed up in his clothes and then decides he wants to stay home. We are making him go to school since it is the last week and there is so much fun stuff going on. He did not make it to daycare all week either. Today was his last day there for the summer and with him being so upset this morning, I decided to have come right home after school. Of course, the wonderful daycare center completely understood.
It just times like these that I hate watching him change so much over a week period. I know he will be back to himself hopefully by Sat. or Sunday. We have a busy weekend planned with grad. & Bday & baseballs parties, I really hope he gets to go to it all. He is sleeping now and his brother will be home soon to play.

I found this on another Caringbridge site and it sums up what I am sure most parents feel:
When you hear of a child with cancer your heart immediately goes out to them and you can't help but feel sorry for them. Facing the mortality of your child has to be the worst experience any parent faces. As a parent of a child with cancer, the emotions you feel are like a ride on an emotional roller coaster. The bad times are likened to an extended bereavement and the good times are compounded, with joy and sadness at the same time. Your emotional state is somewhat heightened to the point of being hyper sensitive and extremely protective. The only way to get through the emotional roller coaster is to think positive and be positive about the whole situation. (This is easier said than done.) We are told by the experts, childhood cancers are easier to cure than adult cancers, although this is some consolation in the early days, it is short lived, when you learn more about the cancer you have and the cocktail of drugs needed to cure the disease. With each drug administered you have to deal with all the potential side affects, the range of which is frightening at best but terrifying in general. The effects of cancer on the family will test it's relationship to the limit, some families won't make it but the ones that do, I believe come out stronger for the experience. The most important piece of advice I can offer any family in this situation is to be honest with each other. And not to underestimate the child's understanding of the situation.

Last Week of School

This week is the last week of school for Colby & Nicholas. We are so excited for the boys to finish this week and start summer vacation. I can reflect back in Nov. 08 when I was signing Nick up for kindergarten. He was dx in Oct. 08 and I was not sure if he would make it to kindergarten come Sept. I had the option of signing him up for half or full day. I originally planned on sending him full day but of course ended up signing him up for half day. Definitely a good choice, given the circumstances. He missed quite a few days this year but we know he is a very smart kid. We believe he has excelled in kindergarten and is now ready for 1st grade. We always have in the back of our minds side effects, especially ones from radiation. We will be taking him back to neuro psychologist sometime this summer for an evaluation. I really do not have much concerns for today, I believe he is right on course for his age.
His counts are good this week and the doctor has decided not to change his 6mp or Methotrexate dose for this cycle. He received Vincristine, Meth., 6mp and steroids. Yep, another steroid week.
WBC: 4.6
Red blood cells and Plts: normal
APC: 2,500

Take Care, Karen

Still Feeling Great

Nothing new to report. Nick is still feeling great and with his doses lowered we can see the difference in him. His counts did not drop much this week as they usually do.
WBC: 6.7
RBC: 10.3

We do not want his counts to high as I have mentioned before and of course to low puts him neutropenic. It is finding the medium point where his body will tolerate the chemo and be able to keep his counts down that always seems hard for us. I am not sure next Monday if the doctor decides to increase the Methotrexate and 6MP, we will have to see.
We have two weeks left of school and then it is time for summer. I am traveling a bit for work this month but looking forward to our vacation in July. We will head to Camp Sunshine for the week. the boys had a wonderful time last year, eventhough Nick was on steroids. Keep praying for all our cancer kids. Karen

I know it has been a week and a half since my last post. I guess no news, is good news. Nick was really good on his steroids last week. He spent most of Saturday in pain all day but was back to himself by Sunday morning. We were on top of his pain this time because Nick kept asking for the medicine. We decided to stick with the Tylenol w/codeine and avoid the morphine. We all had a great/busy long weekend. Nick started his weekend with a playdate at Brady's house. He had a lot of fun swimming and I always feel that is the best exercise for him. We ended our weekend by going to the beach on Monday with the Love family. The day was fun for the kids. We always try to load up the sunscreen on Nick, give him a hat and have him wear his T-shirt when not swimming. The beach experience is so different this year than last year. Nick did not have hair last year and always wanted to go to the beach. I know we were very nervous about going and being in the sun to long. We would leave for the beach early in the morning and be home before lunchtime. This past weekend we stayed until after 1pm. The reason Nick will always need protection on his head is because of radiation back in Dec. 08. The doctor had told us that Nick should never have his head in the sun.

I have to tell a story about Nick: On Sunday we were on our way to Auntie Lisa's house for a cookout and swim in the lake. While we were in the car Nick noticed he was bleeding on his leg. I could not look back but all I heard from him: "Mom, I am bleeding, my platelet count must be really low, I do not think I have any platelets left. I hope it stops bleeding soon." Of course I looked back immediately and it was a tiny scab he had scratched, with a little blood showing. We had a good laugh (knowing he would be fine), but it reminds us of how much Nick knows at the age of 6..... things he should not worry about.

I took Nick to clinic yesterday. His counts are really good and the first time in over a couple of months I have seen them this high:
WBC: 8.0
RBC: 10.4
APC: 5,500

The DS Update: We ended up buying Nick another DS (refurbished model) and then we found his. I found it on our kitchen counter behind the knife set, an unlikely place for it. When I asked Nick about it he said he had forgotten he put it there. He was hiding it from Tom. These are times when you just have to laugh about it and move on. Of course all the nurses at clinic were wondering if we had found it and were happy to hear he did find it. Nick's friend Alayna at clinic even made Nick a star with beads because she was sad for him. The family was at clinic yesterday and they played the whole time. I have to say Thank you to the Cote family for offering there DS to us.... very thoughtful of you all.

Nick is very comfortable with his Monday friends at clinic. We have met some really great people and while the whole journey is not fair, you know that you are not alone. Karen

Clinic Visit and Doses Lowered

Hello,
We all had a great weekend. Greg & I went to a wedding and night away. The kids had sleepover's while Grammy watched Tom for the night. Thank you to Debbie and Aunt Amy for taking the boys, they had a great time and were very tired on Sunday. Grammy said Tom was wonderful and we thank you for taking his as well. He is at a great age and really talking up a storm. I can not believe he will be 2 in July. Colby marched in his first baseball parade and was excited to throw out candy to all the kids cheering them on. We actually felt 'normal' for the week and enjoyed the family time on Sunday.
I took Nick to clinic today. He was good but very upset to hear that his DS player was not there and we had lost it. We have looked everywhere for it and really thought clinic might have it. He was distracted playing the clinic's DS players with Alayna and together they teamed up to play games. His counts are good, still not as high as I thought they would be:
WBC: 3.9
RBC: 10.4
APC: 1,900
They have decided to lower the Methotrexate dose from 32mg to 25mg and the 6mp by 20%. The Vincristine will stay the same because that does not have an effect on dropping his counts. They believe Nick's bone marrow is just getting tired this late in treatment. They have seen this happen before and are not to concerned of dropping the dose. They are also checking his levels from the IVIG transfusions and we will see if he needs another one.

I am attaching an article Greg found from the Joe Gibbs (racing and former NFL coach). His grandson battled ALL and the article did a great job sharing the journey and how the parents felt. We can relate to a lot their quotes and how we felt at different time during the journey. They summed it up a lot better than I could.
http://sports.espn.go.com/rpm/nascar/cup/columns/story?columnist=smith_marty&id=5206059
Hope you enjoy it. Karen

Just Thinking Out Loud

There are just some days that my mind drifts to my family and everything we have been through. The emotional roller coaster, along with the stress and watching your child day to day can catch up to you at some point. I think Greg and I feel that way at times. We understand there are many families out there not as fortunate as us to have close family, friends, donations and jobs to take care of Nick however we can. I am thinking today that Nick has not had chemo in his body for over a week now, nothing. It feels okay to take a break but also scary that his body does not have that poison in him to keep any leukemic cells from popping out. (for lack of better terms).
Nick is having a great week. He is on his 2nd day at Prospect Hill (daycare) and as much as I miss him being home, I am able to focus on work a little more. The daycare did call yesterday because Nick wanted to say hello. I really appreciate everyone there and working with Nick however they can to make him happy. He was excited to go back today after school. Socially I believe Nick is fine but how can you blame a kid that goes from clinic, to hospital stay, to home, to school and then daycare all the time to not be a little cranky about it. I guess that I just needed to get some feelings out today. Greg & I will be going to dinner next week with Parents from the clinic. It is a 'time out' event from the Tomorrow Fund for the parents. Nana offered to help us out and babysit, which will be nice to talk with some people who 'get it'.

Clinic Day

Hello,
The weekend turned out to be great. Nick came home around 5pm Friday night. I gave tubs to Colby & Tom before Nick arrived and warned the boys it was going to be family night and we were staying inside. Greg & I felt Nick really needed one more night trying to stay germ 'free'. Nick agreed only if I let him play outside on Sat. and so that day Nick enjoyed hanging out with our neighbors. The Love family came over Sat. night for dinner and more playtime. Sunday, Nick headed over to Michael's and swimming. It was great to hear he finally put his DS down and got some exercise in.
Today we are at clinic. Nick just fell asleep and he is receiving the Pentimidine and IVIG. They pre-treat his IVIG with Tylenol and Benadryl and he is also on Zofran (anti-nauseau). It is amazing how much medicine, chemo and pre-treats he receives in one day. He is scheduled for Methotrexate (chemo) if his ANC is high enough.

Counts just came back:
WBC: 2.5
RBC: 8.8
APC: 1,200
ANC: around 400

He is still considered 'neutropenic' so they are holding his chemo today. We will just start another cycle next week. In this phase of Nick's treatment we do not make up any week he misses chemo, we just move on. Karen

Coming Home

The plan is to have Nick discharged around 4:30pm this afternoon. He will still be on antibiotics for a week. The doctor did see a 'tiny' spot on his chest xray from Wed., so as a precaution we will start zithromax. His counts are a little better today:

WBC: 1.6

RBC: 7.9 (dropped but they do not believe he needs a transfusion)

ANC: around 200 - still waiting on the hand count

He is still neutropenic (under 500 for ANC) but the doctor believes it is just a virus and needs to run its course. Nick looks great and was running around the play room last night. Greg said he feels great today and of course wants to come home. If he does come home tonight we will be staying close to the house for the weekend and letting Nick rest. I will update later once I hear back from Greg on the final decision. Karen

Quick picture of Megan and Nick yesterday playing on the bed. Nick was proud to show Megan his port and how it works. Megan was a little scared of everything going on but then she warmed right up.

Update: Still here

Hello,
We are definitely spending one more night. Nick's counts did not change to much but he has been fever free since this morning. He looks really good and thanks to a visit from cousin Megan and the Hole in the Group, his spirits are up to. Megan and Nick were able to go to the play room (they each wore masks of course) and play together. I think Megan really enjoyed Nick moving the bed up and down. Jeff, from Hole in the Wall came in and drew pictures on the windows and door of Nick's room. He is great with kids and had Nick laughing the whole time.
Counts today:
WBC: .8
RBC: 8.2 (down .4 from yesterday)
ANC: 144 (up from yesterday, 104)
The doctor said if he can stay fever free and still looks good then we might be able to go home tomorrow afternoon.

ER visit turned into a stay

Hello,
I guess the excitement of the weekend was a lot for Nick. He started coughing yesterday and through the night last night. I kept taking his temp. and he was fine. He went to school today and was feeling tired after he got off the bus. Again, I took his temp. and he was fine. We decided to go to lunch at Teppanyki's and he did not eat much. He then fell asleep for a couple of hours and woke up around 3:30. He felt really warm and sure enough he spiked a fever. I called clinic to let them know we were going to the ER because it was to late to go through clinic. Of course Paula our nurse at clinic said she would come to the ER and access Nick's port for us if we could make it there before 4:30pm. Nick was not happy about leaving home and going to the hospital. At the ER his temp. was 104 and his heart rate was up 160. His labs came back and his ANC is 104... definitely neutropenic. I am staying with him tonight. We did not pack clothes, I guess thinking optimistically, Greg drove down and dropped some off for us. (Thank Nana for helping out at the last minute) We will see how his counts are tomorrow. His red blood cells dropped from 10.6 to 8.6 in two days, so not sure if he will need a transfusion tomorrow. I am thinking we will be here until Friday which really stinks because Nick has a performance at school in the morning. He has been practicing for his line and I know he will be very upset if he misses school. It has not been a big deal to Nick when he misses school but I know this time will be hard on the 6 year old. Take care, Karen