Walk with Stella

Walking through Stella's Journey

Let walk together to learn about Stella's SCID journey, celebrate Life Day (the day she received stem cell transplant) and the fight she's fought.

September 12, 2024 Stella 은하 Kim born. She was born as a healthy girl and we are overjoyed with the gift from God and miracle from universe.

September 20, 2024, we get a devastating call from our pediatrician that Stella's Newborn Screening results shows abnormal number for T-cells, and ask us to head to Boston Children's for further testing for SCID (Severe Combined Immunodeficiency). We are told to go in isolation, stop breastfeeding immediately and switch to liquid formula since smallest infection could be fatal for Stella. As this happened on a Friday afternoon, we spend the weekend in extreme fear. We meet with BCH's immunology and BMT team on following Tuesday and learn Stella will need to receive myeloablative chemo and BMT around 8-12 weeks of age.

September 30, 2024, we get admitted at BCH because of a pimple near her eyes. For normal babies, this would have been nothing, but her team wants to make sure it was nothing and she received extensive testing, including lumbar puncture. We find out it was from a common virus called Staphylococcus aureus (staph). She receives IVIG (Intravenous Immunoglobulins), as SCID patients can't produce immunoglobulins.

October, 2024, we wait for possible stem cell donation match. In order to receive stem cell transplant, donor & recipient's HLA (Human Leukocyte Antigen) type should match. There are about 43,000 types (compared to 4 (x2) blood types in simple blood donation) for HLA. Therefore finding a match is very rare. We hope there is a match from NMDP (national marrow donor program). Our dear friends created a campaign and our church help spread the words. We end up doing interviews with various media outlet in hopes to raise awareness about NMDP. Also during this time, our friends continue to drop off foods and gifts and share songs and prayers to show support. We are going through what feels like an endless, dark tunnel but we feel loved.

October, 2024, While in isolation, we take extra caution against viral, fungal and bacterial infection and disinfect everything that comes in contact with Stella. We wash our hands vigorously and even wear masks occasionally as we may be a carrier of inactive virus and pass onto Stella unknowingly. Stella is also taking multiple medicines to prevent various infections like pneumonia.

October 29, 2024, Genetic testing confirms that Stella's SCID is a RAG2 variant and her team start designing her treatment plan. Unlike some other forms of SCID, there are no current gene therapy option for RAG2. Also, RAG2 patients tend to require a stronger form of chemo.

November 11, 2024, Stella gets tested for other rare disease called Fanconi Anemia. It is unlikely, but genetic testing showed inconclusive for this disease. We really wish SCID is the only disease she has, as Fanconi Anemia can make the chemo and transplant more complex. Thankfully, it turned out to be false positive.

November 12, 2024, otherwise Stella is a happy cute baby. She is growing very well and is a bright star in our home. We are so glad she came into our lives.

November, 2024, No luck finding a matched donor for Stella but we can't wait any longer because of the risk of infection. We decide to participate in CSIDE clinical study, which makes haplo transplant (50% match donor, usually a parent) possible. Haplo transplant isn't ideal for oncology patients, however, as SCID patients primary goal in transplant is to be able to produce T and B cells while minimizing GVHD (Graft Versus Host Disease), we decide to proceed.

December 3, 2024, Stella goes through pre-transplant workup to make sure there are no other underlying conditions that may cause complications. This provides a baseline to assess any side effects the chemo might cause.

December 10, 2024, Admission day! Ironically, this is the day we've been so patiently waiting for - and yet the day we've been dreading. We are relieved to finally begin treatment, but terrified of what lay ahead, knowing we would have to send our three-month-old baby to the OR for a central line placement and ovarian preservation (to protect Stella’s future family-planning options), followed by the strongest form of chemotherapy.

After 4 hours in the OR, we meet her in the recovery room and get transferred into the BMT ward. This will be our home for the next 6 weeks. Stella shocks everyone by not needing much pain meds after all she's been through.

I remember giving her one last bath that morning, knowing she wouldn’t be the same baby when we brought her home again. What I didn’t know was that we’d be bringing home a true warrior.