This is my world now until I don’t know when.

Still waiting.

Still hoping.

Small wins.

Holding on.

It’s exhausting. I’m tired of fighting. This is no longer my fight—it’s too big for me. I already gave it up to heaven.

Markers are up. She’s not responding to level 3 antibiotics. We still couldn’t get into PGH because it is rare that patients from private will be admittd there. My daughter keeps on vomiting food since yesterday and it’s hard to keep it down.

No breakthroughs from my corp connections since the whole corp comm team is in HK for some event. Our pedia in our hometown personally talked to the hemato-oncologist we were aiming to get. I don’t know how else we can be admitted.

The alternative is the Philippine Children’s Medical Center, but they have already cut down the Covid wards and, therefore, not sure they can accommodate us. Plus we’re private patients and we’re not a priority.

God, please, I don’t know what else to do. Let her keep down her food. Please make her respond to antibiotics.

I’m sick (didn’t bother with the RT-PCR, I have Covid symptoms anyway) and tired. But I must push on because my daughter needs me. I can’t rest. I can’t be sicker than I am now.

Got to talk to our primary physician and she said the reason for the biopsy, aside from the lymphoma and whatever cancer suspect, it is also to see if MTB would manifest in other parts since it is absent in the respiratory system. She said since the GI TB hasn’t shown itself in any specific organ, they can’t just open up my daughter to get tissue from some random organ in the abdomen. If the bone marrow biopsy shows some kind of lesion, then TB is present.

The question remains now is if PGH has an available isolation ward/room so we can spend the required isolation period of 7 days while the hemato-onco/infectious diseases specialist assess her case. We cannot waste time. The thought of my relatives dying because their conditions were not diagnosed well in time still haunts me.

But then this would depend on their Covid protocols, which are constantly changing. The alternative is that we could also stay in Manila Doctors but the specialist to read our biopsy should be still from PGH. Our attending has that faith in the doctors there even though she didn’t graduate from there.

Urgh. Covid.

It’s easier said than done. The transfer from one hospital to PGH is like asking an audience with the king of England. The whole country is trying to have their patients transferred there everyday and so the waiting list is long and waiting is hard. In the past, we could transfer within a few days, but still with great difficulty, because my parents were UP faculty members and it’s a UP to UP transfer. Plus my mom had students who were doctors in PGH so it’s easy to get an attending physician to take a case.

*Maybe I should really consider that offer to be an adjunct in my undergrad college*

But since now we’re a private patient in a private hospital, we’re not the priority, which is fair since PGH is for the masses.

I’m trying to use my corporate connections since one of the big companies is a major donor of the pediatric hemato-oncology dept. Hoping the dept head would consider…

Our pediatrician in our hometown also came from UP-PGH so she’s using her network as well. Hopefully, we can have a breakthrough.

I am dying inside now. Good thing my daughter’s covid is mild and doesn’t need oxygen. But she’s in so much pain now and very, very thin. It’s twisting my insides just seeing her like this.

I think I’ve written here about things that have come to pass and the things that have yet to happen have no bearing now? The most important thing right now is living in the present. I think the reset that happened the past weeks prepared me for this. I have yet to completely let go, but at least I know now that nothing really matters except for what I have right now, where I am now.

More tests are needed, adding Covid into the mix made it more complicated because my mom is positive and Twin A was exposed to her during incubation period. So we’re more isolated now until the RT-PCR comes back negative. I can’t even go outside the corridor to walk, to release my tension.

I don’t know when can we transfer to PGH. Until the covid test comes back negative? No MTB found in the sputum so it’s not in the respiratory tract. How about the other tests for GI TB? How about the other markers? What other biopsies should we do??? I have no idea. I can’t retain accurate information because I haven’t slept in a week. It’s rare that I can sleep for an hour straight because my patient needs to go to the bathroom every hour and a catheter is not an option at this point.

I never thought I would be so happy about necrosis. Because you know, as the best friend of my sister (who is also a hematologist) said, the presence of central necrosis is the reason why they’re leaning towards TB. Lymphoma doesn’t usually exhibit that. As a childhood GI lymphoma survivor herself, she told my sister that lymphoma is still curable and if Twin A’s condition doesn’t go the TB way, at least I still have an assurance my child will live. It won’t be easy though.

The reason why everything is inconclusive at this point is because GI TB and GI lymphoma mimic each other. My grandpa died of it because it went undetected until the last moment. Same with my aunt.

I don’t know if the third possible condition, that advanced peritoneal cancer, is still being considered. Or maybe that’s the reason why they need the bone marrow biopsy—???

I don’t know what else…my brain is barely functioning. I can’t think straight.

My girl has been very brave. She hasn’t cried one bit—except for the RT-PCR nasal swab because that hurt a lot. She is putting up a front because she doesn’t want mommy to worry so much. She downplays her abdominal pain even though it’s causing her fevers. She is terrified of the thought of having tube shoved down her throat to get samples in her gut and search for the presence of MTB.

The therapy I went through in 2021-2022 trained me to get hold of myself together. To train myself not to sink into the dark abyss because I’m carrying this alone. Their dead-beat father is—I have low expectations from him so he doesn’t count. He knows about what’s happening to his daughter that’s why he sent money but just enough to cover 1-1.5 days of our running hospital bill.

Whelp. She’s Covid +. Got it from my mom, who is the suspected carrier and is + as well. She came from Masbate then cuddled with my daughter before I got her admitted to the hospital. None of us traveled during the 14-day incubation period except from my mom.

We got transferred now to the isolation ward.

So this complicates matters. Definitely no biopsy in the coming 7 days and it would depend if PGH would admit us after Covid.

Lord, let it be TB because at least we’re already medicating her for that for four days already.

I never thought I would be praying for TB. 💔

Where did she get it? Well, my cousin, who frequently comes to visit or we visited their house several times in the past 6 mos or so, was diagnosed with TB of the larynx-—the most transmissible form of TB—either in Dec or Jan. She didn’t exhibit any symptoms except for hoarseness of voice. Our infectious diseases specialist (specialization is GI TB) also said my daughter could have gotten it from school or her primary complex (which they had when they were in pre-school) resurfaced. Our TB doctor said it is not surprising for anyone to contract th disease from out of nowhere because TB is everywhere in the Philippines. It is endemic.

Yeah, even Filipinos who have already migrated to the US still had carried their dormant TB only to emerge in later years, just like the case of fairy gaymother K’s dad, who was later diagnosed with TB meningitis. At first the doctors were baffled because they couldn’t find the cause of the inflamation of the brain and the swelling caused him to be almost comatose. Only when they tried to test for TB (probably they had a Dr. House moment) did they catch it before it was too late. Because TB no longer exists in developed countries, except when it was caught from migrants from Philipines, India, and Vietnam.

So, our attending physicians are treating Twin A for TB but are not ruling out the other two possibilities given the complicated situation. Plus family history.

I’m getting antsy about the delay in biopsy and other tests. If it’s the other direction, I would rather we start the treatment/s right away.

Lord, please let it be TB.

Our hematologist asked me this morning, “How do you keep calm amid all this? You’re so strong.”

My reply: I had already given this to God. It’s out of my hands.

I haven’t had any real sleep. I can’t get sick; I have to be strong to take care of my baby. Prayers and adrenalin are what keep me going. Otherwise I would have collapsed now and sunk deep, down to the bottom of the barrel.

We will be transfering to the Philippine General Hospital in two days, after we’re done with some tests for the other probability. Our attending pediatrician is more confident about doing the bone marrow biopsy there and she found a hemato-oncologist who could take us in.

Genetics is shit.

But you know, that’s what we were given and there’s nothing I can do about it.

All the trials I’ve gone through led me to this. They were nothing compared to this. Heaven hardened me so I can be strong for my girl.

And I believe in miracles.

They still couldn’t find it, why her abdomen is bloating. Why she’s skin and bones. Ultrasound didn’t yield anything.

It’s faith that is holding me together. Faith is the only thing I have now.

I don’t know how I will keep calm and collected because I don’t want my daughter to be scared. But I’m dying bit by bit right now.

Oh God, please have mercy on my daughter. Let it be me instead.