Port is Out

Hello,
Nick's port has been removed. It has been 2 years and 3 months since Nick's port was surgically placed in his chest. The port has been used many times for Chemo, blood transfusions, antibiotics, sleepy medicine, blood draws/counts and IVIG. The port is an amazing medical device that has helped ease the pain of being 'poked' with an IV. Nick was not comfortable with it in the beginning and cried when he was accessed. Nick is so strong he learned to deal with it and soon enough, it did not bother him anymore. We also had the help of the emla cream, which numbed his skin before accessing. The procedure was simple yesterday and Greg & I felt calm. We brought Colby and Joey with us to the appt. They were able to hang out with Nick prior to going into surgery and then saw him briefly in recovery. I was able to stay with Nick until the 'bubble gum' gas made him fall asleep. I was with him in recovery when he woke up. The first thing he said was: "do I have a needle in my arm? It was not there when I fell asleep'. Nick was able to fall asleep in my arms and then the nurse inserted an IV into him. This is a precaution in case he needed any medicine during or after surgery. Nick felt a little groggy waking up and Greg carried him out. He felt great last night and was eating up a storm. We decided to keep him home today because he was feeling sore where the incision was and the doctor said no physical activity for a few days.
The middle of the port feels like gel and is where the needle would enter. There was also a tub attached to the port (where it looks like a needle sticking out) which was connected to a major vein for drawing blood and giving medicine. We were able to take the port home, after being sterilized. (Actual picture above) Nick has not yet decided what he wants to do with it, but he is thinking of something. Nick said to us before going to bed: "I am actually glad I have my port out. It feels good." Colby has asked to bring it to school and show his friends. He thinks it is cool. I am not sure how kids would react to such a device and really understand it. For now, we are just enjoying the kids being kids.

Nick's Port Removal Scheduled

Hello,
We have scheduled for Nick's port removal on Monday, January 17th, 2011. Nick was excited to be picked up from school early today and we first went to clinic for blood counts. I forgot to make the appointment so the clinic was not expecting us but of course they took us right away. The Tomorrow Fund clinic is amazing. Nick lost 6 pounds in a month. We have definitely seen the difference in his face. We did not wait and the nurse accessed his port and took blood from it right away and we were on away for some lunch. We were scheduled to meet with the surgeon, Dr. Luks for a consult before the port removal but the our wait time ended up being over an hour long and we had to get home for Colby. The nurse was very helpful and able to go over the paper work with us and schedule our appt. We are still waiting on the final surgery time for Monday, but looking forward to it. Colby has asked us many times that he would like to be there for Nick when his port gets removed. We promised he could be part of the day. Greg and I believe the best news is that the kids are already out of school on Monday (President's Day), so zero make up work will have to done.
The other day Nick said to us: "I would rather go to clinic than school. Is that funny or what? Is it okay to feel this way." I believe Nick is actually missing his comfort zone of clinic and treatment. He talks about times when he was not feeling well or an 'I remember when' time on treatment. Greg & I just move past those moments and tell him how strong he is now.
We are so proud of Nick and everything he has gone through. Our family has grown so much stronger because of him and who we ALL are. Greg & I constantly talk about the past couple of years and how much we have a learned, the people we have have met, and best of all, to enjoy our time, whether is be days, weeks or year.

We are still looking forward to our many fans out there for comments for Nick. It might take a couple of months to put together what I have planned, so come and be a part of it. Thanks, Karen

Great Holiday & Zero Leukemia Cells

Hello,
We had an awesome Holiday Break and lots of parties to attend/host. It has been nice to take a break from the blog for 2 weeks. I think this is the longest time I have gone without blogging. The Shannon family is feeling great and just getting back into the routine of school. We have truly been making the most of time together as a family. I am not even sure where to start. I will start with an update on Nick: The pathology results from his spinal and bone aspiration came back with zero leukemia cells. Yes, this is exactly what we hoped for. The MRD (minimal residual of disease) testing that was sent to Dana Farber is not back yet. This test can take a 'deeper dive' into the cell make up and see if there is a potential for relapse. Since Nick was diagnosed with T-Cell Leukemia the doctors at Dana Farber (clinical trial) are not sure if the results will be accurate or not. The MRD testing is typically done with Pre-B low-risk leukemia patients. Nick is very high risk with T-cell. The results should come back in the next few weeks, but we are moving forward with the port removal. We go on the 11th for a consult with the surgeon and then will make our appointment. It will almost be a month since our last clinic visit, so we will stop in at clinic for his port access and blood counts to be done.
Overall we are great. Nick is physically changing some. He is losing the bloated steroids face and really looking like the Nick we had 2+ years ago. He is getting stronger and has more energy than before. We are still working on some of the bad habits he picked up during treatment (just being spoiled) and his temper will flare but not as often. We even see a change in Colby. He tells people my brother 'used' to have cancer but now he does not. The boys rough house a lot now and no one holds back. Tom always tries to jump in on the fun.......
Christmas break we nice and relaxing, besides the few parties we had. It felt great to entertain again and enjoy fun times with the family and friends. Nick made it to New Year's this year. He took a 3 hour nap during the day and rang in the New Year's with Colby, Greg & I and lots of friends. He was very proud of himself for staying awake.

I will continue to update the blog site, but not as often. I am working on a project in conjunction with this site and I am asking everyone a favor: Please post any comment you would like for Nick. I am hoping to hear from everyone who reads this site. I will give details later.... but please post to us. Thanks, Karen

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.