Last we shared, the goals were to begin introducing baby formula through Jazmyne’s NG tube to see if her stomach could tolerate “food,” along with weaning her off oxygen support.

Jazmyne has been tolerating baby formula through her NG tube. Each day the amount has been gradually increased..however, those increases have been accompanied by episodes of vomiting, requiring us to slow the pace to what her body can handle.

Oxygen support has been fully removed, which is a meaningful step forward.

Her liver function continues to slowly trend back toward normal. To support this, two diuretic medications are being administered. We later learned these medications were scheduled around midnight, which resulted in Jazmyne being awakened nearly every hour through the night. After discussing this with her medical team, we requested that the dosing be moved to daytime hours so she can get restorative sleep. Sleep is not a luxury—it is part of healing. Medication side effects and their impact on rest should always be considered as part of patient care, especially for a child whose body is already working so hard.

As mentioned, baby formula was being gradually increased, which unfortunately led to repeated episodes of vomiting. During one of these episodes, Jazmyne vomited forcefully and the NG tube was pushed up and out with it. About 18-20 inches of the tube was still threaded through her nose while the rest had been ejected through her mouth. 

The NG tube was then fully removed. We had a family discussion to weigh the pros and cons of reinserting it, and Jazmyne made the decision not to have it put back in. We honored her choice.

This now shifts the focus to ensuring Jazmyne receives enough nutrition by eating on her own. The new goal is ensuring Jazmyne receives adequate nutrition through self-feeding. This has been challenging, as she currently has little appetite and very limited taste, making food unappealing to her.She feels every meal is being forced onto her which she loudly announces.

She’s still “lovingly” battling the side effects of steroids😩because apparently, her body didn’t get the memo that she’s already done with the drama. We’re slowly getting through it, one mood swing at a time.

Tomorrow, we plan to advocate to add a daily appetite-stimulating medication to help support her ability to eat on her own.

Jazmyne is now showing signs of GVHD. What began as a rash in her groin and under her arms has spread into a full-body, raised rash. It is uncomfortable for her, and while topical ointments should help manage the irritation, the presence of this rash is concerning.

GVHD is not something we want to see progress. If this full-body rash continues to worsen, it could indicate that Jazmyne’s body is beginning to reject Joshua’s bone marrow. This is the razor-thin line—suppress the immune system too much and risk infection, or allow it too much freedom and risk rejection. There is no wide margin for error here.

Right now, we are watching closely, treating aggressively, and praying it stops exactly where it is.

As the GVHD rash flared, Jazmyne’s mediport began actively bleeding. The dressing had to be completely removed again to clean and assess the site, which required peeling adhesive off already inflamed, hypersensitive skin. The procedure was extremely painful under normal circumstances; with her skin already compromised, the pain was intensified. Partway through, we had to stop to allow Jazmyne time to catch her breath. Her reaction raised concern that there might be a deeper issue not immediately visible at the surface. Given the timing of the bleeding in relation to the rash flare, we requested imaging to rule out mechanical complications.

An X-ray confirmed that the mediport remains properly positioned. Despite correct placement, the port cannot be used for medication administration at this time due to continued bleeding. It will remain off-limits until there is clear evidence that bleeding has fully resolved.

This significantly limits access. If Jazmyne requires blood products—platelets or red blood cells—they can only be administered through the red lumen of her central line. The white lumen remains occluded and has been unusable for two weeks.

With only one functional access point available, medications now have to be tightly scheduled and shuffled to avoid overlap. Which adds to the constant room interruption from the nurses.As a result, Jazmyne is being forced to transition some medications to oral administration, despite ongoing nausea, limited appetite, and reduced tolerance.

The loss of reliable access is not just an inconvenience—it directly complicates care, increases discomfort, and narrows options in a body that is already under extreme stress.

It continues to feel like every single day brings a new problem to solve. We rarely get the chance to sit in gratitude for what is going right, because we are constantly forced to think three to five steps ahead of whatever obstacle Jazmyne’s body throws at us next.

The level of critical thinking, decision making, and medical advocacy Greg and I are doing daily is relentless. There is no pause, no margin for error, no luxury of reacting later—we have to anticipate, question, and course correct in real time. At this point, the cumulative mental load feels so intense that we joke we should be handed honorary doctorates when this is over.

This is what survival looks like in the in between not dramatic moments, but nonstop vigilance, exhaustion, and doing the next hard thing before the current one is even finished.

God is our refuge and strength, sustaining Jazmyne and guiding every decision. Even in our weakness, His power carries us, and His strength is made perfect in the struggle.We trust Him, hour by hour, for wisdom, endurance, and peace.

“God is our refuge and strength, always ready to help in times of trouble. So we will not fear when earthquakes come and the mountains crumble into the sea.”

‭‭Psalms‬ ‭46‬:‭1‬-‭2‬ ‭NLT‬

“I will praise the Lord at all times; my mouth will continually praise him.”

‭‭Psalms‬ ‭34‬:‭1‬ ‭NET‬‬

Prayer Request:

-Jazmyne appetite be stimulated 

-Jazmyne rash start to cease

-Jazmyne medi-port stop bleeding 

-Jazmyne tolerate food and oral medications

-No fevers

~In the Mighty Name of Jesus