Ellie was diagnosed with Hodgkin’s Lymphoma on July 9th, 2018 after her pediatrician was concerned about recent weight loss and low iron at Ellie’s 17-year old annual physical. Within a week she was in the hospital undergoing many tests to determine a diagnosis, and within two weeks her chemo treatments started. News quickly spread amongst friends and family who were devastated to hear the news, and heartbroken to imagine what Ellie would need to endure as she began a six month treatment plan that was anticipated to result in a full recovery. The treatment plan required numerous hospital visits, potential stays, expected risks and side effects. On her first day of chemo she had an allergic reaction and went in to anaphylactic shock. An incredibly scary way to start.
Ellie got through her treatment with a lot of grace and stamina through first semester of her senior year all while taking a rigorous course load and participating in school activities. She has impressed us all. There were so many disappointments along the way, chief among them missing her final Field Hockey season as Captain at Conard. She rallied as much as she could and went to practice to help coach and support the team but she could not play. In November, on senior night, she received special permission from her Oncologist to go in for the beginning of the game. The morning of that game she couldn’t even walk from tremendous bone pain form Neulasta and steroids. But she made it there and played for 7 minutes (even though we expected her to only play for 30- seconds!) Tom had to go tell the coach to take her out! Everyone was just happy to see her out there. We have been so touched by the support of SO many people including the Field Hockey Community. Conard Field Hockey, Hall Field Hockey, Glastonbury Field Hockey, Newington Field Hockey and West Hartford Youth Field Hockey all paid tribute to Ellie in various ways.
We got through all of this with a positive attitude and gratitude that Ellie had a very treatable form of cancer. And the support of our amazing friends and family. And that we had a fantastic team caring for us at Connecticut Children’s Medical Center which is very close to our home.
In January Ellie’s scans showed that the cancer was gone! We were so happy and ready to help get Ellie strong again and back to a new normal. She had her port removed, started physical therapy and worked hard to get back in shape. She Captained the tennis team and, just as she’d done last year, within a couple of weeks of her diagnosis played a State tennis match. In the spring she’d been complaining that she was short of breath again and was concerned the cancer was back. We made several trips back to the hospital and her concerns were dismissed as anxiety. In fairness to her medical team, I don’t think her blood work indicated a problem. But then she fainted at a cap decorating party right before her graduation. And we just knew. And the scans that followed confirmed what we dreaded. Ellie had relapsed. It only happens in less than 10% of cases but it happened to her. Perhaps there were cancer cells hiding out in her scans in January. We don’t know. But we were completely devastated.
Ellie had worked so hard to get through her senior year and graduate and had SO much to look forward to. She was planning on attending Connecticut College and playing for their amazing coach and with their incredible team of girls. She was SO SO excited about all of that and having a normal summer leading up to it. But that was taken away from her.
She had several surgeries before she started chemo again in July. This new chemo regimen brought many new side effects. In late August all of her friends started leaving for school. That was very hard. And then all of her friends were gone. So - she’s had a lot of quality time with Mom and Dad.
The chemo regimen has been leading up to whenever she would be ready for her stem cell transplant. The first time we thought she might be ready her scans did not allow for that. We were crushed. She went back for two more cycles of chemo (3 week cycles) and had her latest scans on Tuesday 10/1 with a follow up to find out the results on 10/3. The anxiety level leading up to that follow up appointment was off the charts. As soon as Dr. Frederick hit the doorway she said “Mission Accomplished” and we all burst out crying. The release of anxiety and emotion was uncontrollable. We are grateful to be headed towards the next step in this process.
In July we went to Boston Children’s for the harvesting of her stem cells. Ellie will have an autologous stem cell transplant there (in conjunction with Dana Farber). They will be ready for her on October 15th. In the mean time she has several tests and appointments in preparation for the transplant. We expect to be in Boston for a month (give or take). We are so happy that she should be home before Thanksgiving and Christmas. She will be home bound for 60 days once she leaves Boston. We don’t know yet all of the stipulations. We are spending this coming Wednesday in Boston to learn more.
We are so grateful to all of the support we have received. The meals, flowers, gifts, cards, gift cards, little surprised at our door or in the mail, texts and all the ways people have shown their love has been so heartwarming. We can never possibly express how much it means and how much we APPRECIATE all of it!