Atticus is the sweetest guy. He is always kind, always gracious, always polite. He’s funny and level headed and logical. He was a first year college student studying History getting ready to go on his graduation trip to Europe with his dad and siblings last summer when he started to get SO itchy. Then just before he left, he showed me that his glands felt swollen in his neck. We were afraid he was going to be sick with a cold on his trip. Instead, the oppressive European summer heat, no AC, and a crowded bus turned into a perfect storm for his itching to become absolutely intolerable. He wasn’t sleeping, he was scratching open bloody wounds all over his body. And meanwhile, the glands under his chin just kept getting larger. When he would Facetime me with updates on his trip, I realized… this wasn’t a cold, it wasn’t COVID, it wasn’t mono. This was something much more serious. I wondered, but could hardly say it even to myself.. Could he have lymphoma?
I met Atticus at the airport and straight to the ER we went. What followed what a long month of advocating for appointments with specialists, CT scans, biopsies, and PET scans. Meanwhile, not only did his itching manage to get EVER worse, he developed a non stop cough-until-you-throw-up kind of cough. Nothing he took helped either symptom. And we tried everything. Finally, the diagnosis was in: Hodgkin’s Lymphoma.
Atticus took on chemotherapy with unwavering determination and grit. He just wanted to do whatever it took to get better. Six rounds of AV-BVD (12 treatments) later, he was declared cancer free….. For about 3 months. Then the symptoms were back, with a vengeance.
The following two months were even more frustrating. Biopsies and PET scans were inconclusive. He had to stop taking the steroids which were helping his symptoms. The symptoms skyrocketed, but it was taking weeks to get in for follow up lymph node excisions and CT scans. There were days he didn’t think he could last another day. He was bleeding all over his body from scratch wounds. He coughed all day and all night. We made a trip to the ER just to expedite a CT scan that was going to take a week to get into as an outpatient.
When the next round of results came in, the news was a shock. He didn’t have (and never had) Hodgkin’s lymphoma. He has peripheral T-cell lymphoma with cells that mimic the classic Hodgkin’s “Reed Sternberg” cells. This type of cancer is far less common, especially in teenagers. The prognosis is far more daunting. His best hope for a cure is an allogeneic (donor) Hematopoietic Cell Transplantation (HCT) transplant to essentially give him a new immune system. His siblings were tested and his sister is a match!
This week, my daughter is giving herself shots to stimulate her bone marrow to release HCT. Later this week, she’ll get a central line placed for a day and she’ll go through the apheresis process to extract them. Then after processing, they’ll be given to Atticus. He is already an in-patient at OHSU. He’ll stay here 3-4 weeks after transplant to make sure he is recovering well. Then he will need a caregiver with him for 100 days to monitor for Graft vs. Host response. I’ve taken a leave of absence from my job to be his caregiver.
He is still so determined. He rarely ever complains. He always rates his symptoms so low. He’s gentle and kind to everyone he meets - patients and caregivers alike. The time we have spent together this year has been a treasure to me. I know how strong he is -- if anyone can beat this T-cell lymphoma - it’s Atticus!
Many people have asked how they can help our family and Atticus during his battle with cancer. We have been so appreciative of every kind thought, word, text, call, and prayer. We have received kind gifts in the way of gift cards and comfort creature gifts for Atticus which have been so helpful. I created this space as a place to post updates about Atticus’s progress and a link to send those of you who continue to ask how you can support us. We are so thankful for you all.
This is such a difficult time - emotionally, financially, and most of all, for Atticus who has now endured 5 different types and rounds of chemotherapy and is about to undergo total body radiation. That is so much for his young body. He has already been told about the long term effects this will have on his body in middle and older age. But he is determined to beat cancer and survive this. He is a fighter. We love you Atti!