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.