September 12, 2024, Stella 은하 Kim is born. We are overjoyed with the gift from God and miracle from universe. 

September 20, 2024, Red flag on Newborn Screening

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, Stella's first admission

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 wasn't anything serious so she receives 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, Waiting for Stem Cell Donor Match

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, Day to day life while waiting

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, SCID of RAG2 variant

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. We are concerned but glad we have official diagnosis and treatment plan.

November 11, 2024, Additional test for Stella

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, Stella is a star

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. 

December 3, 2024, Pre-transplant workup

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.

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. 

After 4 hours in the OR, we meet her in the recovery room and get transferred into the BMT ward. 

December 11-14, 2024, Chemotherapy begins

Stella begins her chemotherapy session. 

December 15-16, 2024, More chemotherapy. Victoria gets ready for transplant  

December 17-18, 2024, Last chemotherapy. Victoria's collection day

December 20, 2024, Life Day!

It's also Stella's Baekil (100th day of since birth). In the BMT ward, transplant day is a HUGE deal and the entire ward celebrates you. Stella gets double the festivity because it's her Baekil.

At 4:08 PM, we say a prayer and start the Stem Cell Transplant - Victoria's cells in the bag are slowly going into Stella's body over a few hours, and hopefully permanently make home to provide her with lifetime of healthy cells. In an effort to lighten up the mood, we called it a "factory warranty".

December 24, 2024, Christmas in room 602

We  celebrate Christmas from Boston Children Hospital. We may miss our friends and families but we aren't sad. Our little family is together in this small space and our friends stopped by to gift us with food. We are thankful. 

Former patient's foundation gifts the BMT ward with a gift card and a holiday card. The former patient became an angel a few years ago but his family still supports other BMT patients in his honor. We are saddened for their loss and grateful for their thoughtfulness. We vow to pay it forward for future patients, because we wouldn't be here without the former patients and their families.

January 1, 2025, New Year and Neutrophil is not 0! 

Stella's cell counts started to come up - it's an indication  It is a miracle of the Near Years day. 

January 5, 2025, Loses hair and eyebrows

Stella's hairs and eyebrows start to fall out and makes us sad seeing the effect of the chemotherapy drugs. We pray she had minimal long term damage in her organs.

January 7, 2025, Neutrophil is over 500! 

Although still way below the normal range (1500~5000), if Stella can keep this number for 3 consecutive days, we are safe to go home!

January 9, 2025, Tongue Ulcer

Stella develops an ulcer/lesion on her tongue and go through a throrough round of infection screening tests. Since then, for a few months, she also takes about an hour to finish her 6-8oz formula bottles.

January 13, 2025, Going home!! 

Stella's number has been good for days and now we were good to go home :) 

April 3rd, 2025, Bone Marrow Biopsy & Aspiration

Because Stella has a slow growth of T cells and a sharp decline in neutrophils, we're in talks about top off (giving Stella more of Victoria's cells) or a second transplant (going through myeloablatvive chemo again and using a brand new donor). To further access, we proceed with bone marrow biopsy and aspiration. Results show that she's making some cells so we decide to hold off on a second transplant.

May 2025, Outdoor walks!

We start taking more outdoor walks with Stella. Something so small and mundane like this feel very precious to us.

May 16, 2025, Central Line (Hickman Catheter) Removal

The central line, which is a tube inserted into a large vein near heart, was used to draw blood and inject chemo & medicine. Stella had the line for 5 months before the line gave out.

Had it not been for her delayed cell growth,  it would have came out at around month 3 so it feels long overdue. Stella enjoys a full bath for the first time in 5 months!

June 11, 2025, New born vaccine

While Stella won't be able to receive any live vaccines, she receives her first new born vaccine now that she likely has some functioning adaptive immunity. In about 6 months, we will test to see if the vaccines are effective.

July 2025, Great summer continues

Stella loves exploring the outdoors and we enjoy every moment! This is something that wouldn't have been possible without Newborn Screening and advance in science.

September 12, 2025, Stella turns one!

Stella gets to meet some family members for the first time. We couldn't do much of a Baekil celebration for her last year so we have fun celebrating her Dol!

December 18, 2025, Bone Marrow Biopsy & Aspiration

As we were getting ready to celebrate her Life Day and get her baptized at our church, we find out some of Stella's certain counts drop severely and end up doing another bone marrow biopsy to find out the cause.

We are disappointed and nervous about what's to come but know we're in good hands. We're just thankful we're in a much better place than we were last year around this time.

The results of this biopsy will come out in about a week.

December 20, 2025, First Life Day! 

You are invited to celebrate with us! This is a big milestone for Stella and we couldn't be more proud of our SCID warrior!