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My name is Julie McLaughlin and I’ve worked intermittently for Core Medical Group since my dad, John, started the company and I was old enough to work. What follows is the story of my Cancer and Bone Marrow Transplant journey and a bit about Core Medical Group’s involvement with the Leukemia & Lymphoma Society’s Light the Night Walk.
In March of 2001, I was diagnosed with Acute Myelogenous Leukemia. I was only 26 years old. The week before, I had been misdiagnosed as having tension headaches, migraines, as well as having the symptoms of a strep throat, jaundice, and seeing white spots.
I had been staying at my parents house when, on that fateful day, I woke up very early in the morning being more sick than I had ever been in my life. I could not stand or walk but had to crawl to their room to get help. I could not even open the door but had to bang on it till our dog, Suki, started barking and woke them up. My dad had to carry me downstairs and put me in the car. I could not even sit up in the car, but had to lay down with my mom holding me on the seat. There was, of course being in New England, a blizzard going on outside which made the trip to the hospital extra long.
When we got to the emergency room, it was for once completely empty due to the storm and the early hour. I was admitted right away and had a young doctor who kept telling me not to worry and that it was probably just mononucleosis. Which frustrated me because I had had mono when I was a kid and KNEW that this was not mono, but she kept trying to reassure me that it was not anything major. They took some blood and ran a few tests. Soon after, while lying in the emergency room bed, I watched as the young doctor and an older doctor came walking down the hall with my results. All I remember when I was told that I had Leukemia, was how awful I felt for my mom who had lost her father to the same type of leukemia and who would have to tell my dad that I had a life threatening illness. As for myself, I was shocked and felt so sick and miserable that I didn’t care what I had; I just wanted the doctors to make me feel better.
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The doctors admitted me right away to begin chemotherapy treatment. They told us that if I had waited any longer to come in, I would have died. My white blood count was extremely high at 280,000, the normal count being around 10,000. I had a few bad side effects that first week, one being a cyst in my throat that was removed through surgery.
My parents or my sister would stay with me every night. The rest of my family and friends would come by during the day, every day. I am extremely grateful to them and don’t think I would’ve made it without all their support. I had started to lose my long hair so my Aunt Judy came and cut it short. I looked just like my mom with the same bob style haircut! Then, when I couldn’t stand the hair falling out anymore, my Dad brought his barber in and we had our heads shaved together. He would make me laugh by telling me that I looked like the Dali Lama with my glasses on or that I was the boy that he never had. I received hundreds of cards, Vermont Teddy Bears, and care packages (as a cancer patient, I could not receive live plants, balloons, or food) while I was in the hospital and during the next year. This was one of the great things that people did that helped me to keep fighting as I realized how important I was to so many people. My sister decorated the hospital room with everything to make it more comfortable for me. I have kept many of the cards, bears, and other items and have put the cards in an album to look at when I get frustrated with some of the late term side effects that I now experience.
After a few weeks of being in the hospital, my doctor did a third bone marrow biopsy. This is how they can tell how much leukemia is in your body. They stick a needle about a foot long into your hip and grind it into the bone to get to the marrow. At most hospitals now, they numb the area down to the bone which is still extremely painful, but where I was they did not know of this and only numbed the top layer of the skin the three times I had it done. The first layer after the bone is one of the areas in the body that is the most sensitive with many nerves making it VERY painful. This was the most painful thing I have had to go through besides wound dressing changes.
Due to my lowered immune system, I developed a rare infection called necrotising fascititis at the site of the biopsy. This is a very deadly disease for people whose bodies are working normal and is also known as the “flesh eating disease”. At the time, 80% of people who had a normal immune system and that developed necrotising fascititis died from it. I had no immune system due to the chemotherapy. Not a good prognosis!
The doctors at first thought I was going to lose my leg as the infection was spreading down my leg. Then, they decided that I had to go for emergency surgery to do debridement which meant having all the muscle and tissue that was infected removed. I knew it was bad when the nurses who were wheeling me into surgery were crying. They told my parents to expect the worse. They did not think I would live. At best, they thought that I would come out of the surgery brain dead and in a coma. When I woke up from the surgery, the doctors wrote in my medical records that it was a miracle I survived! They had not quite gotten all of it out, so I had more surgery to remove the rest of the infection the next day.
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Since I now had an open wound, I could not do the normal follow up chemotherapy. The doctors recommended me for a bone marrow transplant at Dana Farber Cancer Institute and Brigham and Women’s Hospital after my wound healed. At this point I was sent home to my parents after having been in the hospital for a month and a half. I had to go through extremely painful dressing changes three times a week for about 2 months for the wound to heal properly. They used a special wound VAC to help speed the healing up. The new skin on the wound would attach itself to the sponge, and would then have to be ripped off when they changed the dressing. No matter how many painkillers, morphine, and drugs I was on, I would still be screaming when they changed the dressing.
Then I had to go for fertility treatments to try to save my eggs. There was not enough time to do anything and no one told me about the damaging affects of chemotherapy when I was first diagnosed and had the first chemotherapy at the other hospital. Unfortunately, they were unable to save any eggs or embryos. After going through more fertility tests six years later to see if anything came back, I have found out that I am now infertile and cannot carry a baby to term either.
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During this time before my transplant, my family was tested to see if any of them were a bone marrow match. As there were no matches found, I was entered into the National Marrow Donor Program registry. I was very lucky as they were able to find me a perfect match within a month! I was admitted to Brigham and Women’s Hospital (connected with Dana Farber) in late August to prepare for my transplant. I received two high doses of chemotherapy and then full body radiation for seven days. This combination of treatment makes you VERY sick and weak and has many short term and long term side effects. It was a very hard thing to go through. On September 7, 2001, I received my bone marrow transplant. It took only ten minutes of an orange looking liquid being dripped into my IV!
I was in an isolated unit for a month before I returned home to my parents. I was in a small room with a huge hepa filter behind my bed to filter out the bad air. I had lost my hair a second time, not a good thing for a 26 year old girl! Only my parents were allowed to see me, my sister was allowed to come once. They had to be germ free, wear gloves, masks, and gowns.
By the time I got home, I had atrophy which is when you lose all your muscles from being stuck in a hospital bed. When I first got home, I could not even walk ten feet. It took physical therapy, my dad, Suki my dog and many walks later before I could get back to semi normal. Seven years later, I still have not regained the physical strength and stamina I had before I got sick. I had to be isolated at home and had to wear gloves and a mask for a year after the transplant whenever I went to the doctors, outdoors, or had the very few visitors I was allowed over to visit. I was not even allowed to give or receive hugs. Isolation was tough, as I could not go in a public place unless it was outdoors with only a few people around. I did try to ski about three months after my transplant, and after promising my doctor that I would not go in the lodge or break any bones. Thanks to my dad, I did do a couple of runs but was frustrated that my body would not work the same as it did. Also, for the isolation year, I could not have any take out food, fruits, and vegetables, or anything that was handled by others.
After a year went by, I was able to meet my bone marrow donor who lives in California. He is my life saving Angel. Without him, I would not be here today. His name is Darin Jackman and he has a wife Heidi and 4 kids. We talk every month and see each other at least once a year. He donated his bone marrow after the nurse who was collecting his blood for donation asked him if he would consider being a bone marrow donor. He went home talked it over with his wife and decided to go through with it. Being a bone marrow donor usually carries the normal risk of surgery with anesthesia. They generally first do a swab of your mouth and then if you match, they call you in for more tests. Bone marrow, platelets, and blood donation are very important to many people’s survival. If it wasn’t for people’s generosity of donating, I would not be here today. Please donate if you can.
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Humor, love, and the support of my family and friends helped me survive this ordeal. We learned to laugh at everything, cry when needed, and to always tell each other that we love one another. I have become very close with my family and am extremely grateful and lucky to have a family that would put everything on hold and do anything and everything to help me fight for my life. Laughter and love are the best medicine!
I now am an Ambassador and Volunteer for the Leukemia and Lymphoma Society and do as much volunteer work for them as well as other cancer groups, especially ones involved with young adults, that I can. Every year I do the Leukemia and Lymphoma Society’s Light the Night Walk with my team: Julie’s Core. Julie’s Core is made up of family, friends, and employees of my father’s company Core Medical Group. The Human Resources Supervisor, Lynn Cuomo, is my co-captain and with the tremendous support from her and from Karen Nicolls, Armand Circharo, and Monique Ricker, and John McLaughlin, the team and the walk has become a yearly event. Other employees have gotten together to do lot’s of fun and exciting fundraisers such as a poker tournament that Jim Osborne and Roger Michaud host, a Jay and Carole’s Café at lunchtime, a Danille Malayandy’s Breakfast Bar, and a Janice Huntley’s Beverage Service. After the walk, we normally have an “after party” that Armand Circharo has so graciously held at his home in Nashua. It is amazing to see so many people put their time and effort into raising money for such a great cause. In 2007, I had about 90 people walk with me and we were able to donate $42,000! Over the last four years, we have donated over $100,000! It is such a wonderful feeling to know that so many people come out to support and fundraise for people like me who have had a blood cancer. We started off just four of us: my parents, John & Candy McLaughlin, Armand Circharo, and myself as the first grouping of Team Julie/Julie’s Core in 2003. It is so wonderful to see how far we have come and to know what a difference we have all made in the lives of cancer patients!
I do suffer now from late-term side effects from the radiation, chemotherapy, and debridement surgery, such as fatigue, constant infections, pain, peripheral neuropathy, emotional and cognitive problems. People who have undergone a bone marrow transplant have to watch out for numerous other side effects including secondary cancers such as breast cancer, skin cancer, mouth cancer, and many others. Cancer affects young adults, 20 to 40 years old in a lot of ways that it does not affect children or older adults. There are many social, emotional, and physical issues to deal with. This population is the least studied, has the least resources available, and has had the least survival improvement rates in 30 years. With organizations such as the I’m Too Young For This, Fertile Hope, The Ulman Group, Livestrong Young Adult Alliance, Imerman’s Angels, and the SAMFund we are starting to change that.
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I have had to become my own advocate as most primary doctors and other specialists are not knowledgeable and not taught about the area of young adult cancer survivors and often do not have young cancer survivors in their practices. This has resulted in many bad scares for me as they tend to jump to conclusions that when something is wrong, that it is because the cancer is coming back or it is another cancer before they even do any tests.
I no longer can work full time in fact I have not been able to work more than 2 or 3 days a week since I was diagnosed. I am always dealing with medical issues, or am at the doctor’s office, or am having tests done. I still have to take a lot of medicine. This is comes with a big financial tag as well as social and emotional issues. I’m always scared that the leukemia will come back or that I will develop another cancer. I have panic attacks every time I have to have an injection into my spine or hip for pain because it brings me right back to the bone marrow biopsies that I had. Sometimes I feel like a 33 year old trapped inside a 90 years old body. I look fine on the outside, and many people can’t believe or understand what I’ve been through. I do try to look at the positive side of things and feel as though the whole experience has taught me a lot. I have become stronger inside and have realized and appreciated the love around me more than I did before. I also have exciting news to announce: I got engaged!
Other cancer patients and survivors, my family, my nephews, my fiancé Eric, and my friends are what inspire me now to live life to the fullest, take nothing for granted, raise money, and bring awareness about cancer to the public. I am forever grateful to my family and friends. I know I would not have been able to go through this ordeal without support from them as well as the folks at Core Medical Group, and the Leukemia and Lymphoma Society.
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