It is with a heavy heart I am updating this journal. Sabrina completed her last chemo treatment in late January. She has been feeling amazing and enjoying school, friends and family. She’s had three ct scans and one pet scan since then... all clean. She was scheduled to have her port removed May 26th.. a huge milestone (having it accessed every month for health maintenance has always frightened her. She’s tearful and stressed until it’s over).  Reaching the point to have it removed was going to be a big milestone. We were planning to have a huge bbq to thank all our wonderful friends, neighbors and family for all their support (then Covid hit and we were planning to postpone it for later this summer).

Then, late on Mother’s Day, Sabrina mentioned her underarm was hurting a bit (same spot as last year’s biopsy). That was night 1 of fitful sleep for me worrying what it might mean. A few days later- fever developed. Took her to her Dr, he ordered a ct scan bc he felt a swollen lymph node. Friday’s ct scan showed abnormal lymph nodes and we were told her lymphoma has likely relapsed.

Fast forward to today. The biopsy results from Monday is still officially pending - but pathologist is fairly certain lymphoma is back. At the hospital, her condition worsened a bit with continuous fevers and trouble breathing (just like last September). Thankfully the dr jumped right on it and steroids fixed both problems. She’s been fever free since late Tuesday and we were able to come home today. 

 

We are still waiting on official biopsy results, but a plan is in place to address lymphoma relapse. Sabrina will take an oral outpatient chemo pill for several weeks to help manage the disease. She should feel great and can do all the things normal kids do. In 2 months or so - she will undergo a bone marrow transplant in Columbus. The transplant is going to be very intense. A week of extreme chemo then another 7-10 days to get the bone marrow to take. (Sam is being tested as a possible match.) Then a few weeks of infusions and monitoring before getting released. Then she will have to limit where she goes for a few months until her immune system is strong again. It's sounding like she might miss the first few months of 6th grade. 😢.

It's going to be a difficult road but it's our best chance of getting her cured. It's heartbreaking knowing she has more challenges ahead, but we are going to try and be strong and positive until this is all behind her. We are hoping to give her the best summer we can before she has to face this ordeal. Luckily, dr said she can swim and play outside, just be real careful.

The last week has been surreal. We were one week away from what we thought was the ‘end’ of this nightmare. We’re now reeling from the fact it’s resurfacing again. A new treatment...different risks...different hardships...new worries. I’m terribly sad my little girl has to endure more hardships. I’ve been grief stricken, angry, in despair, then strengthened with resolve since last week (and sometimes at the same time). But she’s a fighter... so we have to be Fighters too. 
God willing - she will be cured after this and for good. 

Thank you all for your continued love and support. I wish we no longer needed it, but we are eternally grateful.

Terry