They did again all the tests. They stopped the TB meds and antibiotics except for one since she really does have an infection but we don’t know if it’s from abscess or what.

They found my daughter has a high level of uric acid so they’re flushing it out with fluids and allopurinol.

The attending resident told me it could indicate tumor or malignancy so they need to clear it first before digging further.

Spoke with our pediatric hemato-oncologist and she said she is doing other tests that are not as invasive as a bone marrow biopsy.

Just as when I was hoping this could be TB…

God, I’m crashing. Hopeful one day, crashing today.

I want to trade places. My child has a whole future ahead of her. I would gladly give up mine so she could have that chance at life. I don’t have anything else to pursue in life, I just want to successfully launch my children into the world and give them the best life I could.

Why?

Quick reversal of situation. Our hema-onco decided with the team (infectious diseases and a surgeon) to do intervention biopsy but not in the bone marrow. Once the CT scan reading is done, they would know where to do the biopsy.

They redid all the tests and doing more tests because their instruments are more sensitive and the readers are more thorough compared to our previous hospital. Which is true, because they didn’t catch the high uric acid in our former hospital. Our hema-onco told us that the previous scan readings and the bloodwork were not detailed as our current doctors would want them to be.

My anxiety is so high right now that I think I will go insane. It’s a wonder how I was able to write a story today and submit for editing.

I am assured by my siblings that we are in good hands as we have the best specialists and subspecialists in the country so they know what they’re doing. Our IDS doctor assured me that they have seen it all.

I no longer know what to think and feel. I’m storming heaven with my prayers. I don’t have a past and a future. What I have now is only the present.

After going through hoops and hurdles (and heaven knows the kind of roller-coaster ride I had), we finally transferred to PGH this afternoon. There were days when we thought we were dealing with malignancy fevers because they were not abating. Finally, we had a breakthrough yesterday and my daughter responded to the antibiotics. The gap between fevers has become wider.

Covid really dragged us down and no hospital with pediatric hemato-oncology dept wanted to take us in. There was a mad dash to search for other hospitals where we can transfer. The problem is many hospitals have collapsed their Covid wards/isolation rooms and it’s too much for some of them to pull out several staff from regular operations for just one or two Covid patients.

Philippine hospitals are understaffed because everyone is going abroad. Another challenge is that we only have a handful of pediatric hemato-oncologists or pediatric oncologists for that matter since many quit the field due to the emotional toll of seeing and attending to kids with cancer, I was told.

As for the other hospitals under the Metro Pacific network, only one responded as they still keep isolation wards but they demanded the price of my soul. It’s not sustainable. If we finally confirm that it’s cancer we’re really fighting, we need to be practical and be judicious with our resources because this is a long battle.

With a little help from my mom’s network, we secured a room in PGH even if my patient is Covid+. (I’m seriously reconsidering teaching again in UP because of this).

A new battle begins.

I’m exhausted but I can’t be. But God knows how tired I am already. Physically and emotionally. I haven’t slept soundly in over two weeks.

I’m tired. But I need to soldier on.

A Manila traffic enforcer flagged me down as I ran the yellow light, thinking I could make it.

I begged him not to take my license because my daughter is waiting for me at the hospital in the province. I told him I just came from PGH and I would be transfering her there…they are admitting her for cancer…

And I broke down.

I was there on Taft Ave with the hazard lights on for 30 mins or so. I wailed inside my car. I cried all my anguish and grief. All the pain. All the fears. I screamed and begged God to heal her. I cried out loud, let out the pent-up emotions I guarded tightly. For 11 days I kept it all inside; I couldn’t cry. I hid all my fears and grief because I needed to be strong for my daughter who is in so much pain.

I don’t want her to be scared and worried.

I wailed to God, to spare my daughter, to not take her away from me now. Not yet. Not yet.

My Catholic upbringing took over as I bawled so loud, asked God for forgiveness for all the wrong I’ve done. The Catholic guilt—the general idea that no sin goes unpunished and that what’s happening to my daughter is a punishment for all my transgressions.

I know it is not really like that but I couldn’t help feeling that way, in that moment of immense weakness. It finally surfaced, that guilt that was inculcated in me by my very Catholic parents and by the nuns in Sunday school—through years and years of drilling that maxim into me. That God is a fire and brimstone God, someone to be feared and so, so far away from me. Because I am a sinner. He is so far that I needed the intercession of a million saints and that I needed to pray to them so that they in turn will pray for me so that God may hear a sinner like me. Like I needed to say 50 Hail Marys so that God will get irritated with my repetitive prayers and finally hear me.

A lifetime of guilt trip and fear-mongering (“if you don’t do this you’re going to hell”) does that to you. I’m still unlearning, retooling, rebirthing.

The traffic enforcer knocked on my window again when he saw I was still there, half an hour after he pulled me over. He heard me, saw me, and took pity on me that he bought me water and made me drink it.

With very red-rimmed eyes, I managed to drive back to the hospital tonight. They told me her antibiotics are on Level 5 already and yet she still has fevers. Something else is there.

We’re still waiting for a small private room to be freed up at PGH. I don’t know how long we’ll wait. In the meantime, they asked for a 3D rendering of the ct scan so that the PGH doctors can read it again.

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.