Little Teachings

The weekend of 10/21 we were at Hole in the Wall for a family General Weekend. In the past we have been there for Oncology family weekend. The weekend was absolutely amazing and one of the best times we have had together as a family. As always before Greg & I leave we talk about ‘all’ the work that has to be done around the house and cleaning up. We know we are going for the kids but by the end of the weekend we always realized this is what WE needed. Driving into camp you feel the positive energy and just serene surroundings around the lake. The kids were already unbuckled and ready to jump out of the car. We stayed in Lulu’s Lodge, which is where the counselors stay over the summer. It is a ski lodge feeling with a fire place. Our 2 family pals came to greet us immediately. Nick took one look at Brandi and said: ‘I know you, you were in my cabin over the summer.’ Turns out, Brandi was one of Nick’s counselors during his summer week. The two of them started talking about the summer camp and how much fun they had together. It was the first-timer for our other family pal, Deb, to come to Hole in the Wall. The kids laughed, danced and even sang on stage. Sat. night was talent show night our boys were a star. Nick played piano, Colby played ‘mary had a little lamb’, then did armpit farts and then sang Dynamite…. All by himself. Tom got up with all the kids and danced at the end. Tom even got to drive the pontoon boat in the lake. (not docked). On Sunday, the host (Hillary) offered anyone to come up to the mike and say a few words before we departed. Colby ran up and said he would miss everyone and you could see the first tear in his eyes. Nick yelled ‘camp rocks’. Nick made over 7 woodshop projects and Colby made 7 arts and crafts project. The good news is that the kids (Nick & Colby only) go back for a kids reunion in November together. We are so fortunate to have a place for us to go to, where we all understand each other and have a chance to just be yourself. Greg has said many times: ‘I wish Eileen and my family had this place for us to go to.’

This coming weekend there will be a mass for Eileen to worship her 30th anniversary since she passed away. Eileen, (Greg's sister) passed away from Renal Cell Carcinoma.

Colby and Nick have a re-union weekend planned at HOP for the 18th. They are looking forward to going to camp together for the weekend. I explained to them that they should take their projects with woodshop and arts&crafts and give them as Christmas gifts. We will see their imaginations......

I came across an email I sent to the Doctor at Dana Farber who was conducting Nick's study/protocol. I know I was frustrated at the time I was sending but also appreciative he responded to me. Nick's treatment was through the Tomorrow Fund Clinic at Hasbro Children's Hospital but the doctors work with Dana Farber on the best possible treatment......

-----Original Message-----
From: kgshannon@comcast.net [mailto:kgshannon@comcast.net]
Sent: Monday, March 23, 2009 8:47 PM
To: Silverman, Lewis Barry,M.D.
Subject: ALL T-cell

Hi Dr. Silverman,
My son, Dx 10/15/08 with ALL T-cell is 4 years old. He is on the DFCI #05-011
clinical study. We are half way through the Consolidation phase II. (15 shots
of asparaginase and 5 rounds of chemo doses, every 3 weeks). With the last dose
of chemo, my son experienced extreme pain in the legs and could not walk. The
pain has subsided, but he still can not walk well. He drags his right leg and
is very unsteady. We are concerned about the Vincristine causing this and
possible permanent damage. Have you seen other patients, on his study, going
through this as well? We are concerned about nerve damage as well. Do you have
any advice for us? We appreciate your help. Thanks.
Nicholas Shannon, out of Hasbro,
RI Hospital.

From: "Lewis Barry Silverman,M.D."
To: kgshannon@comcast.net
Sent: Tuesday, March 24, 2009 7:11:10 PM GMT -05:00 US/Canada Eastern
Subject: RE: ALL T-cell

Hi
I am sorry to hear your son has had issues with leg pain and problems walking--I
hope he is otherwise doing well.

Pain and abnormalities walking are not that uncommon and can be due to many
causes.

Leg pain can develop for many reasons during this phase of treatment.
Sometimes, children experience a lot of muscle pain with the dexamethasone they
take; often, this pain is at its worst when they stop the 5-day steroid pulse.
Usually that sort of pain might be prevented if the dexamethasone is given with
a taper for the last few days rather than just stopped at Day 5. Dexamethasone
can also make the muscles weak.

Dexamethasone can also lead to bone problems which cause pain. This type of
pain would be localized to a bone or joint, and usually persists throughout the
cycle. An x-ray or other scans would be needed to diagnose that problem.

Vincristine can cause problems with walking--usually the issues related to that
involve difficulty climbing stairs, awkward walking, tripping and in worst case
scenarios, inability to walk alone. Often these gait problems are not
associated with significant pain. Vincristine can cause pain--but usually this
is described more as burning or pins/needles in the feet--and that is much more
often seen in teenagers than in a 4-year old.

Most of these issues are not permanent, though some of the bone problems caused
by dexamethasone can be. Even the worst vincristine issues tend to be
reversible, though they can take a long time to improve.

It is difficult for me to know what the cause of your son's pain and problems
walking are without seeing him. Your son's oncologist may have a better idea of
what is going on after he examines him and decides whether or not any testing
might be useful. Ultimately we want to try to give as much chemotherapy as we
can to cure the disease, but modify doses, when necessary, to avoid doing too
much harm.

Sincerely,
Lewis Silverman

3 Years Ago

It has been a while since I last updated and everything is going well at the Shannon household. Three years ago from Saturday is when Nick was diagnosed. We will remember this day forever. We are blessed to have treatment finished and no major side effects has come through treatment. It can always change on us, but we are enjoying our one day at a time. I am not sure how much longer I will continue to blog. The purpose of it over the years was to keep family and friends up to date with Nick's progress. I feel we have been very open with our family stories and it's time to focus on the kids and their personal lives. The people who know us, will understand our lives and know how happy we are now. Thank you for reading, Karen

Childhood Cancer Awareness Month

Although we see great strides in Nicholas and how he is thriving right now, there are many kids not as lucky as him. I still read many blogs about families going through cancer and my heart sinks everytime you learn one child did not make it. I feel like the one sitting back and not helping right now. Hopefully by spreading the word about childhood cancer I can help in some way.

Did you know?
•More than 12,500 young people are diagnosed with cancer every year.
•Each year 2,300 children and teenagers die from cancer.
•36 children a day are diagnosed with cancer.
•1 in 4 elementary schools has a child with cancer.
•1 in every 330 Americans will develop cancer before the age of 20.
•Cancer is the leading cause of death by disease in children under the age of 15.
•The causes of most childhood cancers are unknown.
•Childhood cancer occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
•In the United States, the incidence of cancer amoung adolescents and young adults is increasing at a greater rate than any other age group, except those over 65.
•Although cure rates have increased to 80% from 35% over the last twenty years, childhood cancer is vastly under funded


The Littlest Soldiers

The medals on our chests
Are port-a-caths for meds
Helmets won’t stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our reward

~author unknown

Hole in the Wall Gang Camp for Colby

Colby had a blast at camp. He made new friends and really enjoyed 'his' time there. When we dropped him off he told us that we could leave as soon as he was in his cabin. He made the most of his time and they even had a 'surprise' fire works night. Colby was excited to see us when we picked him up but I also think part of him wanted to stay. On our way back to the car, Nick & Colby started singing camp songs together and talking about each other's experiences, the counselors and friends they made. The moment for me was surreal in a way. We are so proud of them and having the opportunity for this experience. It is one they both will remember.
When we got home, Colby went and took a shower. When I checked on him he looked really upset. I asked him what was wrong and he said: "I miss my friends already. I wish I could see them again, I had so much fun." Another successful week.

For our final summer vacation we are heading out to Camp Sunshine tomorrow. The boys have been asking when we can go again and the only weekend available for us was Labor Day. I am looking forward to the trip and the kids enjoying their camp time. This weekend's theme at Camp Sunshine is 'Oncology Off-treatment program. I am looking forward to the group discussions and learning how other children are doing off treatment. My particular interest is in the side effects from chemo and radiation and wondering if kids are experiencing this.
I know I have said this before but we are truly blessed to have Nick off treatment and having the ability to be a normal kid. The 'C' word will always be part of our lives but Nick has conquered it so far and he keeps enjoying his life.
Nick's clinic on 8/18/11:
WBC: 10.4 -normal
RBC: 11.8 -normal
Plts: 340 - normal
ANC: 4,500 -great
The doctors say all the chemo is out of his body now. I have asked about re-immunizing him because we do not know for sure if the chemo has killed his immunizations. The doctor said they typically do not re-immunize because they do not know the facts about it.
-Karen

Nick's Home from Hole in the Wall Gang Camp

Nick attended his first week ever of sleep over camp. He did great. Greg & I picked him up this morning. We were sent to the dining hall to get him and when we walked in Nick was dancing (w/one of his councilors) to the music. We both just watched him and he was still so happy. Once the song was over, I ran over and hugged him. Tears were, again, in my eyes and he was just smiling so brightly and hugging me tight. The councilors had so many positives things to say about Nick and I told them I was looking forward to hearing all about his week on the way home. In true Nick fashion, he did not dissappoint us. He talked the whole way home about camp. There were so many activities that he had opportunity to do this past week and most importantly, he made lots of friends at camp. He rode horses, swam, caught a bunch of fish, theatre, carnival night, woodshop and so much more. He told us funny incidents that happened during the week with the councilors and his friends.
Here is one of his stories: "I caught Lucy, no lips fish. See, the first person who caught Lucy,had the hook on her upper lip and her lip came out. the second person who caught it had the hook on the lower lip and it came out. I caught her on the cheek but you know, the lips will grow back on Lucy."
Another one: "The sad part of camp is once you stay in cabin 15 (the last one), you can no longer be a camper." Nick was in cabin 1 and he has 8 more years before that will happen. We explained to him that he could be an LIT (Leader in training) after that.
He also learned how to TP (yes, toilet paper) the cabins. He said he could throw the roll really good over the cabin. What 7 yr old knows how to do that these days? He kept saying "I can TP really good."
A week from Sunday we will be driving Colby to camp (siblings week) and Nick is already excited to go back and see his councilors. We know Colby will have a wonderful and exiting experience, just like Nick.

We are Back

We are back from vacation and had a great time. The kids were great. We drove to North Carolina to see my sister, Christa and family. The kids really enjoyed spending time with their cousins, Justin, Luke and Kaitlyn. We went to the pool everyday and a couple of highs: Nick jumped off the high dive, Colby doing flips off the low dive and Tommy enjoying the trampoline everyday. The older boys enjoyed taking a ride on Uncle Mark's motorcycle. The kids woke up late everyday.
On Thursday we left and headed to Hershey park in PA for 2 nights. The first night was very adventorous for us. As we were leaving our room to go to dinner the boys were running down the hallway and took a quick right hand turn. My older son turned back and by accident pushed Tom into the corner of the wall. He ended up with a huge a gash on his forehead and to the ER we go. After 5 hours he ended up with 3 stitches inside and 5 on the outside. I think I have really lost my patience at the ER. Tom was bleeding and no one even came to look at him for over an hour. I believe it is just the thought of being there again. Greg took the boys to dinner and then took over 2nd shift so I could take Colby & Nick to Hershey Park for the nighttime premiere. Eventhough it was a set back for us, we still made the best of the trip on the next day. Nick's diagnosis has taught us so much and under the circumstances with Tom, Greg & I were very calm. The boys had so much fun at Hershey Park, even in the 103 degrees temperature. We ALL, as a family, rode a roller coaster together and many other rides.

8/3/2011:
We just dropped Nick off at Hole in the Wall Gang Camp for his first time at a sleepover camp. He was very excited today and definitely not patient waiting to go through the line and checking in with the doctor. Once he got to his cabin and met his roomies he was so happy. He gave us great big hugs and his smile told us everything would be just fine. I, of course, cried and luckily I had my sun glasses on so he would not see my tears. I think they were tears of happiness for him, knowing he is going to have fun but also missing him this week. Hole in the Wall is magical and Greg & I feel safe about nick spending the week there.

Quick Story:
I was out of town the past two days at a charity golf tournament for my work. The company we supported has the charity event every year and part of their donation goes to Hole in the Wall. So last night, at the dinner, after golfing, I was able to meet some of the top people at Hole in the Wall that make it all happen for these kids. Of course they remembered Nick from family weekends and were so excited to hear he was attending this week. You really feel part of their family. I will blog next week about his experience. I already packed a goody bag for him that I am mailing tomorrow and plan to mail a couple of letters to. I already miss the little guy so much......Karen

Off for Vacation

Nick had his 6wk clinic visit. I booked the appt. with our actual Oncologist doctor. In the past we have been the nurse practitioners because we go on Monday and our doctor is in clinic on Thursdays. I am glad I made the appointment with her and she answered all our questions and made us feel at ease. Nick has lost a pound and he does not eat a lot. The doctor mentioned that she sees kids actually keep eating once off treatment, as a habit. He did grow .25 of an inch so there is not a huge concern about his height & weight. Everyone has mentioned to us how different he looks now.... he looks like a 7 yr old boy, so we just need to work on him eating some more. We also brought up fatigue and his muscle strength but again, as we move forward he should improve on this. His were ALL normal:
WBC: 11.5
RBC: 4.17
Plts: 359
ANC: 3,000
We go back in 6wks again.

We are so lucky to see how well Nick is progressing but cancer never leaves my mind. A quick story. I was at Whole Foods the other day (a place I do not go to often) and as the woman was ringing me out at the register I noticed they were taking donations for Make A Wish Foundation. I decided to donate and the woman was so excited and stated that between Whole Foods and their customers they are trying to send a child from Bellingham on a wish trip. I explained to her that I am a Make A Wish Family to and how much our trip meant to all of us. She said to me: "My son passed away from AML and all he wanted to do was see Mickey." They took their trip and had a wonderful time. The woman then said to me: "When we got home, my son said to me, now I will prepare you, for when I die." The boy was 5 when he passed away and the mother said she started the Make A Wish donation at Whole Foods so she can give to other children. She showed me pictures of her son and she was smiling through our whole conversation. (as I was trying to hold my tears back). I of course lost it by the time I got to my car but knowing another child will receive their wish is comforting.

We are leaving this Saturday for our vacation to North Carolina to see the Wykoffs (Karen's sister and family). We are driving down and really looking forward to the cousins spending some time together. We have not been in over 3 years due to Nick, so this will be fun. We will stop at Hershey Park on the way and spend 2 nights there. The kids are very excited and Greg & I are looking forward to family time.

The Results are In

Hello,
I know I have not posted in a while. I think about it everytime but then something else comes up like hanging with the kids or playing outside, so I think my excuses are pretty good. Greg & I had our appt. today with Dr. Selke -- Pediactirc Neuropsychologist to receive Nick's results on his testing.
Many people have asked why is this test being done and what will we get out of it. When Nick was treated for Leukemia he received radiation (8 days of it) and high dose chemo. There are many side effects from both which can lead to brain deficiencies, such as cognitive skills, comprehension, fatigue, etc.... Nick was in testing for a full day and they were able to complete the whole series of tests. I will first start by saying Nicholas is VERY smart and we are so proud of him. His total IQ number did drop from 124 to 113. Anybody who knows about IQ testing is aware that there are varying degrees in the actual measure (ie:number) that each test uses. His testing is in the range from 1-145. We are satisfied with the results and the areas that Greg & I thought he would need help, did show up on his tests. Our concerns were correct and we still have to accept the fact that there is side effects from everything his body/brain went through. As the doctor states... we saved our child by treating him with chemo and radiation, so we take the side effects and work through them. Nick is showing the 'common' signs from radiation. Here is the breakdown to make it more clear:
- 8 hours of testing -- the dr. uses activities to work on different areas of the brain
- During testing Nick was fatigue by 11am and in the early afternoon by 3pm. The tests going on during this time was not 100% dx due to fatigue
- Nick did drop or show slow response to comprehension & motor skills


The Dr. said he is working on a study where fatigue actually continues through during his delvelopment phase of life. Greg & I always thought Nick would be back to his original energy level and now studies are proving that is not the case. While we see improvement in his energy, he is still not there yet and we do not know if ever will be. He may stay awake all day and play but activities such as baseball can wear him out quickly. We have seen this on the baseball field. He takes a few swings and then he complains he is tired....Of course we try to encourage him and keep telling him to try but in reality his brain/motor skils are slow and tired. Just something we, as parents, need to watch as time goes by.

The big question I asked the Dr. was if Nick would ever re-gain or improve on these skills in which he has shown a decrease in. The Dr. explained it to me like this: Your brain cells (white mass growing around your nerves) grow until about the mid20's and if a normal child is at 100% motor skills and then becomes sick (like Nick), those cells could drop down to about 75%, with radiation killing the 25%. He will never get back to 100% but he can maintain or drop where he is today. So our goal is to continue to challenge Nick and focus on these areas to keep his level of 'smartness' up.

I will post more on this next week when I receive the actual paperwork. The Dr. had some updating to do on his medication sheet of the report and will be sending it out to us. The meeting was very overwhelming for Greg & I to learn just the terminology and then apply it to the exact behavior going on in his brain/everday functions. The testing Nick endured was very draining for him but it is so important to work each part of the brain. The Dr. is not instructed to tell us how to handle the coming years but we have a better idea what we need to do as parents. More details on next blog. Sorry if this is confusing reading about it... I am trying to process everything that was said and also dissect what is the priorities for keeping Nick on track.

On a very happy note: Thomas turns 3 on July 3rd. He has grown up so much and barely looks like our 'baby' anymore. The years pasted by so quickly for us with Tom and missing him during Nick's treatment. I think he has become more independent than the other 2 because of this. He is our little 'madman' in the house. Mom & Dad love you very much Thomas!!!!! We are celebrating this year with a big Mickey Mouse Cake.

Neuropsychology Test

Nick had his IQ test on Wednesday. It was a long full day of testing and he was very exhuasted by the end of the day. The IQ test is done because Nick received total brain radiation back in December of 2008. It was part of his protocol to treat his leukemia because it had spread to his brain/spinal (CNS) when dx. Radiation can cause long term side effects such as learning disabilities, tiredness and can even lead to new cancers. Our goal was to treat the leukemia and you deal with the side effects later. Nick is healthy but he will continue to have follow up neuro testing done to see how he is progressing. The good news is that he was off the charts smart back in 2008 and the doctor said you will probably see some decline but hopefully not a lot. Nick missed a lot of school in Kindergarten and some in 1st grade so that can contribute to it as well. The testing will give us guidance if we should pursue a tutor for the summer and where we need to focus on for 2nd grade. Nick was a trooper during testing, he wanted to go home many times but he continued with it. I had to bribe him with Go-Gos, but he made it through.
This weekend is his last baseball game. I think he likes socializing on the bench more than playing, but that's okay because at least he is out there and being a kid again. I can't believe it has been 7 months since Nick finished treatment. It still amazes me and I have not forgotten everything he went through. I stopped in at clinic while Nick was in testing to make an appt. for his next blood work and I saw so many kids in the waiting room.... battling some disease. It breaks my heart to see these kids knowing the battle they are facing. Please continue to pray for all the kids who are battling this disease. Take Care Karen

All Medication is completed

Nick is completely done with all medication. He finished his Bactrum last week. I think he was happy about it. When I told him last week that he had finished all his 'clinic' meds he said 'great'. I do not think it really phases him, everything he has been through and how proud he should be to finally finish. He has moved on to being a 7yr old. He likes baseball and just picked up the basketball yesterday to try and play. He typically sits out of playing sports with his friends and I believe it is because he feels like he can not play or is not the fastest person. He knows the kids are better than him. We keep encouraging him that he will learn the game and to keep trying. I really believe he does not feel as strong as he looks. I know he tires easily but he will push himself when he wants to. We are fortunate that this is our 'biggest' concern. There are so many kids who are battling cancer and do not have the physical abilities like Nick does. Greg & I undertsand it will take some time for Nick to find his niche and what he really wants to do.
The kids are almost done with school and then will attend daycamp for the summer. Nick will be taking a summer enrichment program to help out with his reading. We have seen improvement with him and continue to try and find the books he likes. That is all news for now. I will have more to post next month with many activities coming up. Take Care, Karen

Monthly Clinic Visit

Our house continues to be busy with baseball and enjoying the warm weather when we have those days. Those of us who live in New England now that summer has not hit and we are still having cold days. Nick has his monthly clinic visit yesterday. We were worried about his eyes and how red they were over the weekend. He complained all day Sunday about how much they bothered him. We decided to give him some Benadryl on Sunday night and they seemed to work for a while. Nurse Pat at clinic thinks it is just allergies and he is showing no other signs but a stuffy nose. He has never had allergies in the past but then again, he has been on so much steroids and antibiotics that we probably would not know. His counts were great, the highest we have seen:
WBC: 10.0
RBC: 12
Plts: 338
ANC: 3,200


My only concern at clinic was his constant bruising all over his body. He definitely bruises easily but the nurse did not show concern for that. I guess the bruises on his legs are normal and he has a few on his arms. I think we just forget how active and playful he is now that this is a boy enjoying himself. I also learned that Nick will now go to clinic every 6wks instead of every month. I was a bit surprised and still not sure if I like this 'plan', which is part of his protocol. He finishes his Bactrum in 2wks, which would be 6 months off treatment.... Still can not believe it at times.
Auntie Lisa and I took the boys to the Red Sox game on Friday night. We had a lot of fun. Colby was really into the game and Nick made sure I bought every food that came by us. He would tell me to get my hand up in the air. I mentioned to Nick that his first 2 times he was here, was steroid week and he was miserable. We stayed until the top of the 9th inning and they left, unfortunately the Red Sox were losing. The boys brought their gloves hoping to catch a foul ball. Thank you to my very dear friend for the tix and thinking of us..... the memories will last.
Greg and I would like to say thank you for everyone who participated/donated to The Tomorrow Fund Stroll. The stroll raised over $100,000 this year. That is the most they have ever raised and brought in over 3,000 'strollers' for the day. As the Shannon Family we can not say enough great things about what the Tomorrow Fund does to help out the families going through treatment. To say they care about people is an understatement and anyway we can help out, we try. Take care. Karen

I know I do not spend a lot of time blogging anymore. I am not sure if anyone is still reading this or not. I think about blogging and then I get busy and tell myself I will do it later. Everyone is great. It is school break this week and we have the boys busy everyday on top of baseball every night. There is a lot of laughter, screaming boys and tired parents at night. I have been doing double duty with work and Greg is in school and working so schedules seem to be filled these days. There is little time to think about the 'what if's' for Nick, so we move forward. Nick had his first pediatrician visit since his diagnosis this week. (I called the clinic for the everything...just did not trust anyone else during his treatment) He is great overall, below the bar on height and weight, it could be just genes or from the chemo/radiation. We really will not know until later on and when he is older. Colby on the other hand is growing leaps and bounds. He grew 4 inches in 1.5 years and gained weight. It is hard to tell I have two 7 year olds until 4/25 (then colby turns 8) with such a height difference. One month and Nick will be off the Bactrum, which means, he is done with all meds. I still have his old medicine in the cabinet and have not cleaned it out yet. I look at the bottles and of course memories flash into my head, I just need to get rid of the stuff.

Tomorrow Fund Stroll 4/10

Hello All,
I know I left some information hanging from the last post. We have been very busy and trying to absorb/adjust to the schedule. We had a surprise Birthday party for Nana (Greg's mom) on Sunday. She was completely surprised and we had family come into town to celebrate with us. The day was great with all the cousins playing together. I feel like the house is alive when we are able to have friends and family over. It can be crazy but lots of fun. We have spent the past couple of years not allowing people in our house so it is nice to open our doors again. We hope it will stay that way.
The last blog I posted about a family member who was diagnosed with cancer. Papa Charlie (Greg's dad) was diaganosed with prostate cancer and he recieved the results on Friday. He is in the early stages of cancer and he does have options. We are all here to support him and he loves we love him very much. I think the overwhelming factor of it all is hearing the 'C' word again. As always, we will unite and fight!

On Sunday we be participating in the Tomorrow Fund Stroll for the 3rd year in a row. The kids look forward to the stroll, not knowing 100% the meaning of it. That is okay because we, as parents, are coming together to support a wonderful clinic. We are able to see the doctors and nurses outside of clinic with their families to. You really know they care about the children. We are hoping for great weather so the kids will get a few laps in and enjoy the time with old/new friends from clinic. If anyone is interested in donating to the Tomorrow fund, please go to www.tomorrowfund.org. Thank you.

Happy 7th Birthday Nicholas

Nicholas will be 7 tomorrow. We get to enjoy having two 7 yr olds in the house for the next 3 weeks and then Colby is 8. We have decided to not plan a party this year for either of the boys. We have a celebration after the Tomorrow Fund Walk for them and enjoy our family time together tomorrow. The kids have been asking us for a big present this year so we decided to go ahead and get them that instead of a birthday party. Nick will have his 'traditional' breakfast in bed tomorrow morning and enjoy the day, probably bossing us around.
Last weekend we took the boys to the Hole in Wall open house for summer campers. This year Nick is old enough to go for a week. He is really excited and both boys did not want to leave the place. Everytime we have pulled up to Hole in the Wall you have a feeling of peace. Just for Greg & I to be there w/the family for a few hours, completely releived our stress and just relaxed us. We both have been busy with work, me traveling and school for Greg so to find a way (and it's free)to just be us is always great. I signed Nick up to go to camp at the beginning of August and then siblings (Colby) will go the last week in August.
Nick has been feeling great and contiues to work hard in school. We have just learned today of another family member who has been diagnosed with Cancer. For the privacy of our family and the new diagnosis, I am leaving the name out. I am asking for extra prayers in our family while they find the best treatment plan and course of action to take. We love you........

Getting Ready for April Birthday Month

Hello,
Everyone is real busy at the Shannon Household. We are getting ready for baseball and flag football for the boys. Nick continues to feel great. I am still amazed we made it through winter with no sickness for Nick. Last year we were in/out of the hospital so many times, I thought it would not end. This year we are having fun at home and working really hard with Nick at school. He had his eye exam and apparently he was not too happy to receive the drops in eyes that his eye dilate. The good news is that everything turned out to be okay. The doctor said he was a little far sighted but felt he would out grow it and hope to be have complete normal vision. In 2 months we go for Nick's neuropsych. exam to see how he is developing mentally. We know he still is struggling in some aspects of school and not 100% up to his grade level. We continue to work with at home and practice reading a lot as well.
April is always a busy and exciting month for us. Nick's birthday is on the 2nd and Colby's is on the 25th. My sister's kids are all in April as well, so we have lots to celebrate. And our Nana (Greg's mom) will turn 70 on the 10th. That makes 6 birthdays this month. Since Greg and I enjoy having family/friends at our house, we will kick off the month with a party after the Tomorrow Fund Walk on the 10th. I am sure there will be more and for us, it's all about the kids.
We have signed Nick up for a week of camp at Hole in the Wall. He is very excited to go this summer and we hope to get away for a weekend at Camp Sunshine. We are also planning a trip to NC to visit my sister and family. I am not used to planning so far in advance, we always planned last minute because we never knew how Nick would feel. It's definitely hard to keep up with the schedule. I am traveling a lot for work right now and hopefully it will slow over the next month or so. Greg is working and going to school, so we are on the go most of the time. Tommy is growing by leaps and bounds. He is so smart and a really great boy. It is hard to believe he will be 3 this year. I try not to feel guilty about how much we missed of first year of his life, between Nick in the hospital, work schedules and maintaining on a daily basis. Tom was always in good hands with our family who helped us out, but I wish I could have been there more for him. As I always say, we are enjoying our time together tremendously as a family.
Please continue to pray for the children and families who are not as lucky as us. We just found out a girl in our clinic has relapsed with Wilm's tumor and they are trying to find the right treatment plan for her. She is 9 and to young to have to go through the treatment again.
I will keep everyone updated throughout the month as we celebrate birthdays. Karen

All is Quiet Here

It has been a while since I last posted but that is good news. I used to post in the past when Nick was sick or being admitted to the hospital, a number of things. Now I find it hard to write. We are all happy and just enjoying getting back to normalcy. Greg & I had a great time in Vegas but really missed the kids. We enjoyed being able to sleep in and take long walks down the strip but to here their voices everytime we called to say goodnight reminded us of everything we have been through. We both realized how our time together as a family is so precious and you want to enjoy every minute. We were excited to make it home safe and hug the kids first thing in the morning. The boys really missed us and I know Tommy did not understand why I called him on the phone every night. We are looking forward to some family vacations this summer. We do not have plans yet but they are in the works. All I know is that it will travel as a family together with lots of laughs.
Nick will have clinic next Monday, so I will post his counts then.
Karen

Where is Nick?

The boys have had a great school vacation week. I think this has been one of their favorite weeks in a while. Monday started off with me taking Colby & Nick tubing with the Cub Scouts, in the morning. Then I met Papa Boston and he took them to his place where they went sledding, ice skating, sledding again and jacuzzi tub in the evening. This happened all in one day. Tuesday they went to the JFK Library for a kids show and then came home. Wed. they had a sleepover at Aunti Michele's house and to the movies for a show. Thursday Nick went with Grammy for a sleepover at Aunt Amy's house. Colby has a playdate over today and they are having a blast playing Wii. Nick has a lot of energy now and does not tire easily. We expect Nick to nap everyday but he has not and just keeps going. I am still amazed when I look at him now and how much he has changed.... back to the nick we know. His face shows it all. We have definitely let our guard down quite a bit and just trying to let the boys be boys. The spring is coming and they will start up sports again and continue to keep them active.
Next week Greg & I are traveling to Vegas. I am going for work and decided to make it into an extended stay through Sunday. I am used to being away from the kids for a night at a time but not this long. It has been over 3 years since I left the kids for this period of time. I am excited to go and have some quality time with Greg but will also miss the kids. I am sure next week I will be a stress ball before leaving but hope to take advantage of some R&R while I am out there. We are so fortunate to have family here to help make this possible for Greg & I.

The Tomorrow Fund Walk is being held on April 10th at 10am. If you would like to come out and support us, you are welcome to join us. Click on the link to the right of the blog - 'tomorrow fund' logo for more information. The boys are I are putting together some donation stuff. One of my goals this year was to give back, not from me but teaching the boys different ways to give back to the people who need it. Hopefully this is just the start of it.

Karen

Hello,
We are all together tonight and hanging out as a family. Nicholas and Colby would like to say a few words... so here we go:

Nick: I am feeling all better now. Me and my family are doing ok. I hope there will be peace. I pray for my friends. I have made a lot of friends. I am much more stronger and try to raise money to cure kids.

Colby: I am glad that my brother is okay. I was really worried when my brother was sick. I really wish to sign up for football and baseball this year. I wish I could do something for everyone out there and at school we are trying to raise money to help cure the kids today.

SAVE THE DATE: APRIL 10TH... TOMORROW FUND WALK
We will give more details on the next update. School vacation and lots of activity for the kids this week. Karen

First Clinic Visit without the Port

I know it has been since I have last updated. I think about blogging a lot but then I just do not feel like it. Nick is feeling great and working on getting back into a routine. He does have a few set backs at school and I think it is partly due to the amount of school he missed last year. He is behind in reading, so he receive tutoring for this. He really tries so hard to read books but it takes a lot of energy out of him, so we are patient and work with him when we can. He has excellent hand writing and continues to improve on his spelling words. I know the next few months will be a work in progress and trying to catch him up so he is ready for 2nd grade. Nick had a neuro-phsyc.test done before his radiation treatments back in 12/08. His results were outstanding and he way above on the 'smart' chart. I know we need to take him back for re-evaluation to see how he has changed. It could be from radiation or just the time away from school. I think I have been personally dragging my feet on making the call.
The emotional roller coaster you feel from ending treatment is very hard to describe. I see my Nick and how wonderful he is and then you feel for the ones who are not there yet. The routine of clinic is not there and you are looking to find something else. By no means am I complaining about off treatment but the emotions of the past couple years catch up to you. At least once a week (maybe a day), I think about an instance in Nick's treatment, when he was sick, healthy, inpatient, that will never go away. Last night Nick asked to sleep with me. I know it was because he had clinic yesterday and he was not happy about the blood draw from the arm. We had 4 people holding him down while he sat on my lap. I tried to explain to him to hold still and it would not hurt but he said he did not like the elastic around his arm. If this happened before he was dx, I probably would have been a wreck watching him cry and scream and so upset, but yesterday we HAD to draw blood.... We all needed to know what his counts were and how much chemo is still in his body. I am not sure if it will get better each month but the nurses are really great and strong. His counts are back to normal:
WBC: 7.8
RBC: 12.1
Plts: 314
Nurse Pat mentioned he still has chemo in his body and they could through the 'differentials' part of the test. She showed me a number and said as that drops it means the chemo is leaving his body. The next step for us is to schedule an eye appointment. The nurse mentioned that Leukemia can actually sit in the back of the eye (very rare) and be systematic to Nick so they would like him to go see an optometrist. She also mentioned that the long term steroid use can have side effects. I was surprised to hear all of this but then again, we know the word 'side effects' and we will do whatever is needed for Nick. I have attached a couple of pictures from Dec 2010... Flashes of Hope. We happened to be at clinic that day and they were there so we had our pictures taken with Nick.

PS: In 3 days South Elementary School raised $780.00 for the Pennies for Patients Program and they stil have 10 more days to go.

Pennies for Patients

Hello All, It is definitely different not posting all the time. I would always think to myself, time to post, get it done. Now, I really do not have a lot to post about. Our family is great. We are wondering if the kids will ever have a 5 day school week since a snow storm has come in every week, canceling school. The kids are loving it and Nick is the first one to put on his snow gear and go outside. I can remember back to the first winter (08) when Nick was dx and he had no hair. He would complain all the time that he was cold and that Mommy and Daddy were to cheap to turn the heat on. Now, he runs around the house without a shirt on. We are grateful for his strength and how quickly he has bounced back to the child we knew before Leukemia.
Nick & Colby's elementary school will be running a fundraiser event called Pennies for Patients and Nick is the honorary kid. All the proceeds will go to the Leukemia and Lymphoma Society. I put together an autobiography of Nick and sent in some pictures. The kick off meeting is on the 7th and Greg & I were invited to attend. South Elementary has been so supportive of Nick and have gone out of there way to make sure he is always safe.
Colby was able to bring Nick's port into school last week and he was a proud big brother explaining to his classmates what the port actually was. The nurse came in and gave him gloves to wear, during his presentation. I wish I could have been there to here him speak. Karen

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