Where to begin?...let’s start with Emma Ann Laverty! Carly and Kelcie’s new baby sister was born on March 1, 2005. In true Laverty fashion she is just beautiful. Carly wrote a paper for her 1st grade class and stated…”My mother doesn’t make ugly babies!” Just minutes old Emma became an organ donor when her umbilical cord blood was saved and preserved by Viacord, in the event that Carly might need a stem cell transplant in the future.

Carly continues to have neuropathic pain. The oncologists think this is from the radiation she received during treatment and it inflamed the sciatic nerve. Carly takes so much pain medicine that it is beginning to affect her stomach. Henni and Roy decided to try a new approach for pain control and Carly now visits an acupuncturist…..it’s too soon to report whether this will help her or not.

Pain, however, has never been a deterrent for Carly…she took three dance classes last year and she and her sister, Kelcie, were outstanding in the year-end recital! Around the neighborhood Cartwheeling-Carly and her sister ride their bikes, swim, have sleep-overs all the normal “girlie” things….and pain takes a back seat. It is amazing how Carly toughs-it-out! She is and will always be our “Warrior Princess.”

Carly’s dad, Roy, is training for the Pan-Mass Challenge again this year. This grueling 194 mile, two day, bike ride is the largest single fundraiser for Dana-Farber Cancer Institute. Our goal is twofold…to show our appreciation to D-F for the wonderful care that Carly received and to bring public awareness to childhood sarcoma cancer. We don’t tell folks that Carly had cancer…we tell them she had a sarcoma, namely Mesenchymal Chondrosarcoma, which makes up to less than 1% of all cancers. Roy will be wearing biking shirts signed by the cancer-survivors in our family and those we have met along the way. Roy’s goal is double what he raised last year, $6000 and he has almost reached it.

Fourteen y/o Michael Hartley is doing just great. Michael suffered a malignant brain tumor on the night of our Relay For Life last year. He is home, going to school and beginning to use a walker. Michael has probably got the best attitude I have ever seen…Positive, Positive, POSITIVE!!!!

Henni is busy with her girls and volunteering. She and Roy’s mother take Carly to her Boston clinic appts. And she spends the reat of her time ferrying the girls to all their activities.

Unfortunately our online Yahoo support group for Mesenchymal Chondrosarcoma keeps growing. It is so important to bring awareness to Carly’s cancer. The only way any research will be done is by getting the word out to the researchers and those who donate toward cancer research. The magnetic ribbons that you see on the back of cars can be purchased for Sarcoma and Childhood cancer. Anyone who wishes to donate to the sarcoma or childhood cause can e-mail me at mimi-olsson@comcast.net and I will send you the links to these web sites.

The best thing about up-dating this journal is being able to pass on GOOD news…and the very best good news is that Carly’s 19 month scans are clear. She continued to have residual leg pain and made repeated trips to the Children’s Hospital pain clinic. Her pain meds were increased and then Roy had an idea! Why not add an anti-inflammatory (Aleve) to the mix. Well, the docs agreed and Carly’s pain has greatly diminished. So much, in fact, that she now takes three dance classes a week.
Way back in the Spring Henni organized a team for the American Cancer Society’s Relay for Life, Carly’s Crusaders. Carly’s team raised over $5000 and earning a silver star and special recognition. When Carly was diagnosed with her cancer we learned that 1 in 300 children would be diagnosed each year. We felt confident that his dreaded disease would never afflict any other children in our family. On the very night of our Relay walk, a member of our extended family (Carly’s Uncle Noel’s cousin’s child) and fellow walker was diagnosed with a malignant astrocytoma. He had brain surgery and is currently doing rehabilitation. Michael, 13 yrs old, has shown a remarkable spirit and attitude and his entire brain tumor was excised during his surgery. He is an inspiration to all of us.
In August Roy participated in his own fund raiser for the Jimmy Fund at Dana-Farber Cancer Institute. He raised over $3000 for the Pan-Mass Challenge. Roy biked 192 miles in this 2 day event from Sturbridge, Ma to the tip of Cape Cod, Provincetown, MA. He rode like a champion and wasn’t even sore the next day! All along the route people stood by their homes and cheered the riders. The challenge went through our home town and we had a large group to cheer and support him. Roy liked it so much he’s going to do it again next year.
Carly joined her sister Kelcie at elementary school this year as a first grader! Kelcie is a wonderful “big” sister and the two girls are best buds. And speaking of big sisters, our really extra-special good news is that Carly will join the big sister ranks. We are expecting a new baby (think boy)! This was quite a surprise but we couldn’t be happier (think boy). The new baby (think boy) is due in March.
This has been a long post…my first time…but it gives me the chance to tell you all how thankful I am for your love and support throughout this ordeal. It also gives me the opportunity to tell you how proud I am of Roy and Henni. They have been through so much but never complain or cry why me. They’ve made decisions that no parent should have to make. They have faced this family crisis with dignity and strength and unabashed love for each other and their children.
With Love and Hope, MiMi

May 12th we brought Carly into Children’s Hospital for her CT & MRI. She had the CT first because she doesn’t need to be sedated. We were in and out in no time at all.
Our next stop was her MRI, this isn’t as easy for her because she has to have an IV inserted into her hand and things get a little hairy for her. The “needle” is the only thing that upsets her about this whole thing. The wait is what gets to me.
After she woke up we were off to the Jimmy Fund to see her oncologist. We also had an appointment with Dr. Berde the pain doctor. After a thorough checkup and a lot of talking about how’s she is doing with her leg pain we’re trying a new drug. This will be given to her at night before bed it’s called “Nortriptyline” it should help her sleep and help with the break through pain. For those of you who don’t know, Carly takes 600mg. of Neurontin, a nerve pain medication, a day. And on top of that she still has leg pain 2-3 times a week where she needs Tylenol to help. For the most part, it hasn’t been real bad where she needs something stronger like morphine. Hopefully this will help with the pain. Her legs have been hurting her now for two years! June will mark two years since this horrible disease found her and forever changed our lives.

Carly’s Crusaders, Relay For Life, team had a great big yard sale on the 15th of the month. I am happy to say we made about $600+. It was hot and a lot of hard work and I couldn’t have done it without everyone’s help! Now we just have to wait for the walk in June, it should be a great time for all. Roy will be biking in the Pan-Mass Challenge in August; it’s a 192 mile ride. The proceeds from this ride go directly to Dana-Farber Cancer Institute, which 46% goes directly to the Jimmy Fund. This is a cause near and dear to all of us, so we now will help Roy raise the $2300 needed to ride.

Carly will be in a dance recital on June 19th, she performs a tap dance and an acro-ballet dance. The costumes are adorable and she loves them. We all can’t wait to see her on stage… she can’t wait either. Otherwise, all is fairly well in the Laverty household. Kelcie loves school and is reading up a storm.

Carly’s next scans have been pushed out 4 months to September. This will be our longest stretch yet. But for now we can breathe a little easier until next time………..

Love from all the Laverty’s

ONE YEAR ANNIVERSARY!

Hello to all. I know it’s been sometime since our last update and A LOT sure has transpired since November. First and foremost the biggest and best thing is that Carly has been cancer free for 1 year on February 10th !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Words can’t express how happy this makes us feel. Just knowing she’s gone this long with no signs of the disease coming back gives us hope it will never return. We can only pray because there are too many others that have suffered relapses (mesenchymal chondrosarcoma) to rest completely.

To celebrate we took Carly out to eat to Applebee’s with the family and friends. Her Jammie, Poppa and Auntie Che Che gave her a beautiful basket of pink flowers along with purple basket for her big sister Kelcie. They also gave Roy & me big beautiful vase of yellow roses. It was a great night for all. Earlier that day her Kindergarten teacher Mrs. Stromberg had a remission party for her at school. They decorated a special chair for her, gave her a princess tiara and made her a star that said “princess for the day”. The kids got to make ice cream sundaes and watch their teacher juggle for entertainment. It was just great and Carly was in 7th heaven! To top it off the local paper (Sun Chronicle) came by and took pictures and did a story about Carly reaching her 1 year anniversary. It was just a great day all around we couldn’t be happier!

On February 11th Carly had her scans MRI/CT and all is CLEAR. We also met with her oncologist at the Jimmy Fund Clinic. We discussed how she’s been doing over the last few months and when her next scans would be. In January Roy and I took Carly to the pain clinic for a re-check. After much discussion they decided to up her neurontin again to 3 times a day now. Carly still has leg pain and on occasion it’s bad enough that she needs morphine. So we’ll try this for a while and see how it helps. Her next set of scans will be in May.

In early December the girls switched schools due to Kelcie requiring extra help in reading and math. The school she was at was a private catholic school that unfortunately didn’t offer the services she so desperately needed. After much testing and research we discovered Kelcie has ADD. Both girls started attending the local public elementary school in December. I am happy to say they both love it and are doing great. Kelcie is on medication to help with ADD. Between the medication and extra help she should be ok. Carly’s teacher told me that Carly has adjusted beautifully and it’s like she’s always been there. That’s typical Carly! Nothing seems to trouble her. She amazes me sometimes.

Roy will be biking in the Pan Mass Challenge August 7-8th for the Dana-Farber Cancer Institute and has already started training. He will be cycling from Sturbridge to Provincetown for a total of 192 miles. He started a web page but has told me that it will continue to evolve. Please visit the site and show your support for such a great cause. Lastly, I want to let everyone know that I am forming a team for the American Cancer Society Relay for Life Walk in June. I’ll be sending out an email with all the details soon.

Thank you for the support you have provided and let’s all pray for another cancer free year!

Hello All, I know it’s been quite sometime since our last update and a lot sure has happened since the summer. The girls are both in school now; Kelcie in first grade and Carly in Kindergarten and she absolutely loves it. She thinks she owns the place because her big sister is upstairs. Carly goes ½ day everyday and Kelcie is all day. Carly couldn’t wait to go to school and she never shed a tear on the first day. I barely got a wave for a goodbye and she had to be first in line, of course! She has lots of new friends; boys and girls. She takes two dance classes, ballet and tap, and she loves them. She’s a natural! Our little Kelcie isn’t enjoying school quite as much, but we’re working with her in a lot of areas and she’s feeling more comfortable everyday.

Carly had scans in September which all came back fine. We were a bit worried because over the summer she experienced a lot of leg pain to the point where Tylenol was not enough and she needed morphine. She would actually ask for the blue stuff. It’s pretty sad when your five year old can distinguish pain medications. She was also taking a lot of pepcid for her tummy on a regular basis. Because her pediatrician was away I called the clinic and they said to bring her right in. They checked her blood and ordered her scans and decided to have a Gastro/Intern doctor check her out which meant another visit to the pain clinic. The pain clinic upped her neurontin to 200mg AM & 300mg at night. It did seem to help a bit but she still has leg pain occasionally. They want to see her in January for a recheck. Then we went to Children’s Hospital to see the tummy doctor. They checked her all out and asked us to keep a journal of pain and told us to give her prilosec each day for her tummy. We’re back in January for a recheck. Her next set of scans are December 3rd and for the most part she’s doing ok; I still wait for the day she’s pain free.

On a sadder note, all of us in the Laverty family wish to extend condolences to the family of fellow Touch of Hope member David Kokjohn. David, a brave and valiant warrior, lost his battle with mesenchymal chondrosarcoma in October. David was a true example of facing everyday with hope.

July 17th marked the anniversary of the day Carly’s port-a-cath, or as she called it “tubie”, was put in and her first round of Chemo. Thank goodness that yucky stuff is all over! It’s also been almost six months since her Chemo ended! Yeah!

We recently got home from a two week vacation at Horseneck Beach in Westport, MA. We all had a great time, suning, funing and relaxing! The girls loved playing in the ocean, making sand castles and going for long walks looking for shells. The weather was great and we really enjoyed doing nothing for two weeks. We had lots of visitors like Auntie Judy, Uncle Noel, Caitlin, Michael and Christina...... Jammie and Poppa came too, and Poppa went in the ocean with Daddy. Jammie said it was to cold. The Hartley’s also came down for a day at the beach and the girls loved playing with Lauren. Kathleen, Kieth & Jenna visited and so did Auntie Lisa, Uncle Eric, Megan and Katie. The girls had a ball at the beach that day. And Mimi’s friend Suzie came down, Carly and Kelcie loved Suzie and we had a great time with her.

Carly unfortunately has several dentist appointments ahead of her for fillings. Due to all the medications she took over the last year she has 6 cavities! Can you believe it?! Poor thing after all she’s been through and now the dentist.

Last week we went to visit Carly’s friend Amber & her mommy at their home in Somerville. The girls had a blast... they played dress-up, danced, and played Barbies... it was fun for all of us. This weekend the girls, Mimi, and I are going away for the weekend without daddy. We are going to Storyland with Auntie Lisa, Megan, Katie and Claudette In New Hampshire.

For the most part Carly is doing pretty good and she’s getting stronger every day. She still has days where she isn’t feeling great, and her tummy still bothers her a lot. I guess only time will tell if this is chemo related or what. Her hair is coming in fast, still blonde but a little darker, and it seems to be thicker too. I guess we’ll see. Carly’s next scans are scheduled for September 3rd. We’ll let everyone know how she makes out.

The 20th of June 2002 was the day Roy and I brought Carly into Children’s Hospital for the first time. I remember it like yesterday; it was Roy’s birthday and Carly was in excruciating pain. I couldn’t put her down and she was exhausted from crying and hurting for so long. I called Roy at work crying and saying she can’t live like this anymore. Roy came home and we drove to Boston never thinking for a minute what was in store for Carly and our family.

Two days later on the 22nd of June they found her tumor. The memory of the three doctors walking through the doors of the MRI department has been permanently seared into my memory. We both knew something was wrong but we still never, ever for one second, thought it was a tumor. This was hard enough to comprehend and deal with never mind the prospect of cancer. So we just focused on Carly healing from her surgery. We knew the pathologists had to run test after test and we just had to wait and see.

And then that fateful day came, it was July 2nd 2002, I was home with the girls, my mom and 6 daycare children, doing what I do every other day…. keeping everyone busy and happy. The phone rang and it was the neurosurgeon with the results of the pathology report. She said hello Mrs. Laverty this is Dr. Goumnerova and I have some bad news. So I ran out onto the deck because I was already crying, and she said in a stern voice you have to calm down and listen to me. Carly has cancer! I instantly lost my breath; I got weak in the knees and starting sobbing. In a split second my whole world fell down around me. I couldn’t believe what I was hearing. She kept saying it’s a very rare cancer. You will get a call from Dr. Grier at Dana Farber and she expressed how sorry she was and that Carly would be in good hands. And then I had to call Roy at work to tell him. The whole time I was sobbing and sobbing and the girls kept saying, What’s the matter Mommy? Why are you crying? It was as if someone had died in our family that day.

I can’t believe it’s been a year since that dreadful day. As a family it’s been the longest year of our lives together and I hope we never have to experience this again. We look back over everything Carly has gone through and say’ Wow, I can’t believe this little pint of nothing has gone through all this and look at her now. We owe a debt of gratitude to so many people for all the help, support and prayers that helped us through this difficult time. You are all angels and we will never forget.

When Carly turned four it was not the birthday that most kids dream about. All her nights and most of her days were fraught with excruciating pain. It was two months before we would learn she had cancer and she was in a terrible state. After her diagnosis came the surgeries, chemo and radiation, long separations from her sister, daily shots, and bouts of awful sickness. During this dreadful time Carly’s spirit never weakened. After her last treatment in February her body began to strengthen and she was told she was in remission.

When Carly turned five it was definitely the birthday kids dream about. Make-A-Wish sent Carly and her family to Disney World!!!! She stayed in an incredible village called Give Kids the World. Ice cream all day long, meals in a gingerbread house, two swimming pools and a water works, a movie theater, kids train and train station, a carousel, Christmas, Disney characters, and gifts galore.

She spent three incredible days at Disney World including her fifth birthday. On that special day she had breakfast with the “princesses” and all was right in her world. She and Kelcie rode the rides, watched the parades, oohed and ahhed, and had a wonderful time. A magical time. A dream come true. And Mommy and Daddy smiled and smiled.

She spent a day at Universal Studios and met more characters and went on more rides. They even got MiMi to go on a ride, scared her silly, and had fun, fun, and more fun.

Carly wore a special button that let people know she was from the GKW village and Make-A-Wish. As soon as Disney and Universal employees saw her button, lines disappeared, doors were flung open and red carpets unrolled at her feet.

Make-A-Wish and Give Kids the World are organizations that are made possible through charitable donations. We wish that every person or organization that has donated to these groups could see the smiles on the faces of the kids and their families. It was such a happy place to be, especially after months of fear and worry and sickness….we are very grateful!

There is a saying that a life is not measured by the number of breaths you take but by the moments that take your breath away…..Thank you Make-A-Wish and GKW village for a week of breathless moments…..

After all the fun it was back to business. Shortly after returning from Disney Carly had an MRI and CT scan and I am happy to report both were clear. She also had an all day appointment at Children's Hospital pain management clinic. We met with a team of doctors to discuss the pain she has been in and the course of action. In the end one of her medications was increased. The good news is the change appears to have made a difference.

This past Monday Carly had her “tubie” (port-a-cath) removed. This is a significant milestone in Carly’s treatment and is a symbol of the end of her chemotherapy. But, it’s also the beginning of life after treatment. Hopefully a long life without ever experiencing a treatment that makes you worse before you can get better. I’ve been thinking about this event for quite some time now and have come to the conclusion that this is not the end. Cancer and cancer treatment are unlike more common health maladies like high cholesterol or breaking a bone. She will never be “Out of the woods”; she will always be on the edge of the woods looking out to a normal life, with the darkness of cancer at her back.

The surgical procedure of removing Carly’s port-a-cath took less than an hour but between the pre-op checks and recovery it took most of the day. She coped well with the surgery except for the ride home when she experienced car sickness, but quickly recovered once home. This recovery was short lived when Kelcie arrived home from school with a fever and flu-like symptoms. Carly started experiencing the same symptoms later that night. Kelcie recovered less than 24 hours later, but Carly has just started to feel better today. Henni and I were extremely worried that she may have an infection but after talking with the OR nurse we ruled that out. Nonetheless, it was extremely disconcerting. On one hand we knew that the logical explanation was that she was exposed to the same bug as Kelcie but in her weakened state and right after surgery we couldn’t help but be worried.

Today Kelcie and Carly’s cousins from Virginia visited. The girls had a ball playing with Kelson and Morgan, and also seeing newborn twins Evan and Brindle. Now we have our eyes set on our trip to Disney. This will be our first family trip in almost two years. It’s been a long two years and the girls deserve it. Hopefully we can just forget about what has happened, even for only a week, because as soon as we get back Carly has an all day appointment at Children’s Hospital pain management clinic. Then shortly after that she has some follow up scans.

We want to remind everyone that on Monday, April 21st, Tim and Kate Maul will be running for Carly on the Children’s Hospital Marathon team. Roy and I and the girls have tickets to watch the race from a special viewing area. We were given bright orange t-shirts so our runners can easily spot us in the crowd. Tim and Kate expect to be in Wellesley, our viewpoint, between 1:15 and 2:00 PM. Maybe you’ll see us on TV!!

We really don’t have a whole lot to report since our last update. Carly had a routine clinic appointment last week with her oncologist. We discussed her leg pain and when her port-a-cath might be removed. I don’t think they know quite yet when it needs to come out. Overall her leg pain has improved slightly thanks to the Neurontin she takes two times a day, however, she still needs morphine on occasion. We have an appointment with the Pain Clinic at the end of May. So for know we keep doing what we’ve been doing for the last three months.

Carly’s hair, eyebrows and eyelashes are growing back and she looks like she has a five o’clock shadow on her head. She keeps telling us it better be blonde or else. For the most part Carly seems to be getting a little stronger each day. She’s been going to preschool and playing with her friends and loving it. We are all looking forward to our trip to Disney on May 18th…. we are counting the days. Also, we are happily anticipating a visit from Kelson, Morgan, and the twins! Cousins from VA that Kelcie and Carly have never met. Carly’s next set of scans will be in June. We love hearing from everyone. Happy Easter to all!