COTA for Bridget D

Our Story

Bridget is a beautiful 11 year old. She just graduated from the 5^th grade at Oliver Beach Elementary and is excited to start middle school at Loch Raven Technical Academy, where she’ll be participating in the performing arts magnet program. She is a big fan of musical theater. She also loves to dance (tap, ballet, and jazz). She spends most of her free time doing arts and crafts. She loves Spongebob and the Muppets, Japanese kawaii culture (think Hello Kitty, etc) and all things Disney (like her mom). She loves visiting Disney World as well as the beach. She loves animals, especially pigs. She is sweet and soft spoken, but can be pretty chatty and funny once you get to know her. She is also very caring.  She is probably more empathetic than most pre-teens, possibly because of all she has been through medically.

Bridget had a heart transplant when she was two years old. Most of our friends and family know her story, but we’ve been lucky enough to gain some new friends and family over the years, so I’ll give you a little summary. Bridget was born perfectly healthy. When she was 21 months old, a random virus attacked her heart, causing it to become enlarged and unable to pump efficiently. After months of ups and downs living at the Johns Hopkins Children’s Center, Bridget ultimately needed a heart transplant to save her life.   She left the hospital on her own two feet a mere 8 days after her transplant and has led a relatively healthy and full life (with very few restrictions) since then.

Until June 15, 2019.

Bridget woke up that morning with stomach pain. She spent the day in bed and developed a 102 fever later that afternoon. It was the Saturday of dance week. For those of you who don’t know, dance week is a very busy week in June for the Jean Kettell Studio of Dance, where both Bridget and her older sister, Allison, have been students since they were toddlers. It starts with an all day rehearsal, followed a couple days later by a dress rehearsal, followed by 4 days of recitals that are over 3 hours long. It’s their week to shine and show off all they’ve worked on that year. Saturday was Day 3 of the recital and Bridget declared the show must go on. Her father and brother were going to be in the audience that night and she was determined for them to see her dances. She pushed through, sometimes coming off the stage in tears, but she did it!

The next morning, however, Bridget crawled into our bedroom burning up and complaining of worsening abdominal pain. We took her to Patient First where they suspected appendicitis and sent us to the ER. Given her history and our relationship with Johns Hopkins Children’s Center, we took her to the emergency room there. Unfortunately, appendicitis it was not. They discovered a 10 cm mass in her lower abdomen. We were admitted to the oncology floor and underwent a series of blood tests, cultures, and scans. The doctors suspected PTLD- Post Transplant Lymphoproliferative Disease. Essentially, a lymphoma due to the anti-rejection medications Bridget has to take to prevent her body from rejecting her transplanted heart. It is a rare side effect- affecting about 10% of transplant patients. However, they needed a biopsy for an official diagnosis. A PET Scan showed that the disease was confined to the mass in her pelvis. They had expected the PET scan to show multiple areas of activity, such as lymph nodes in her neck/armpits/groin as that is the nature of the disease. They had hoped to be able to easily biopsy one of these easily accessible nodes, but instead they’d have to do surgery to biopsy her pelvic mass. The fact that there weren’t multiple areas of involvement on the PET Scan was one thing that puzzled the doctors. This was not a usual presentation of PTLD. Also, there were other questionable results. Her Epstein Barr Viral Load was negative, and her LDH was normal. Both of these are usually very elevated. Additionally, most patients who develop PTLD are only 1-2 years out from their transplant, whereas Bridget was over 9 years post-transplant. While these things didn’t rule out PTLD, it did make the doctors question the diagnosis…and I’ll admit we got our hopes up a bit. We just wouldn’t know for sure without a biopsy.

They did laparoscopic surgery on June 19^th, to remove some tissue from the mass. When the surgeon approached us in the waiting room after surgery, our hopes dropped. You could almost see the defeat in his eyes. The mass was nothing like he had seen before, and certainly not in someone as young as Bridget. The mass is wrapped around her entire cecum (part of her large intestine). We now needed to wait for pathology for answers.

Unfortunately, it would take 5-7 business days for the pathology to come back. They wanted to do a bunch of special stains, some of which were multiday processes, so they knew exactly what we were dealing with. So, Bridget was discharged home to wait. She was feeling perfectly fine by then, just a little sore from the surgery and tired from the days spent in the hospital.

On June 26^th, we returned to the oncology clinic to learn the diagnosis. Bridget has Diffuse Large B Cell Lymphoma, most likely due to the years of being on the immunosuppression meds from her heart transplant. Thus, this is a rare presentation of PTLD. Our world was turned upside down once again. But, the doctors are optimistic and are talking CURE. They said of all the possible cancer diagnoses, this was the best case scenario, the one they were hoping for. B Cell Lymphoma is the most common lymphoma- and the one they have the most experience treating and CURING. Had this turned out to be a primary pediatric colon cancer, the prognosis would not be so good. So, we are going for the CURE- there is just no other option! They are treating her VERY aggressively. As someone who has worked in the oncology field for over 20 years, I couldn’t believe all the different chemotherapy agents they plan to give her. Of course each agent has its own set of side effects, so we have a rough 4-6 months ahead of us. The doctors have to be extra careful though, because she is already immunocompromised from her heart medications (which by the way have also been changed due to this diagnosis). She will be strictly monitored. If she develops a fever, she will be admitted automatically and started on antibiotics. It’s gonna be tough, but it will be well worth it….for after 4-6 months, she’ll have her whole lifetime ahead of her.

Everyone is asking how we are doing. We are doing okay. We have our moments, but we are facing this with a positive outlook. We are ready to tackle this. Bridget is a trooper. She is so strong and is in good spirits. Her positive attitude is going to help her beat this. Sure, she is a little bummed- it is summer after all and she had to miss her long-anticipated week at heart camp and will miss our 4^th of July week in Ocean City we planned with some friends. But she understands and of course we will try to squeeze in as much summer fun as we safely can between cycles. She is nervous about the start of middle school- we don’t know if she’ll be able to physically attend in the fall. The two questions she asked immediately after learning her diagnosis were 1) will she lose her hair? (yes) and 2) can she still go to Disney in mid-October with the dance studio? (we don’t know, but the doctors are hopeful they can work it out that she can go- but maybe not perform). She knows, and we know, that we have a huge network of friends and family here to support us and lift us up and keep us strong. We are feeling the love and can’t thank you enough.

We are thankful that COTA (Children’s Organ Transplant Association) is partnered with Bridget for her LIFETIME so that we can provide updates here to keep you all informed. The ability to make one post for all to see is easier and less time consuming so we can focus on overcoming this second serious medical challenge. We shall overcome!

For those of you who aren’t familiar with COTA, here is some info:

The Children’s Organ Transplant Association (COTA) is the premier organization providing fundraising assistance to transplant families … for a lifetime. COTA is a 501(c)3 nonprofit organization, so funds raised to help meet transplant expenses are not considered income for families. Since 1986 more than $110 million has been raised across the country for thousands of children and young adults needing a life-saving organ, bone marrow or stem cell transplant. COTA also works with individuals of any age with a single-gene disorders such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease.

COTA’s services and guidance are provided at no charge to transplant families. 100% of each contribution made to COTA in honor of patients helps meet transplant-related expenses, and gifts to COTA are tax deductible to the fullest extent of the law. COTA funds can be used for transplant-related expenses that include lodging, transportation, household expenses, prescription medications, insurance premiums, living donor costs and much more.