They found lesions in the cells that are consistent with TB infection. What keeps her tummy bloated is chronic inflammation caused by infection.

They will have the specimens taken for further tests like GeneXpert MTB/RIF assay to know the drug resistance and susceptibility. So in the course of treatment some things may change.

MTB infections in the Philippines are really the nasty ones, especially the extra-pulmonary, since it’s a great mimic that makes it hard to diagnose. In our case, it tried its very best to mimic lymphoma, down to the rapid accumulation of uric acid.

No wonder in the provinces, which have limited or no access to modern instruments and newer reagents, ex-PTB detection is extremely hard. The disease keeps swirling around within communities and keeps on developing drug resistance. This is a public health concern that needs government support such that people from all walks of life can afford to buy anti-TB meds good for 12 months. Otherwise, MTB will keep on developing strong resistance to drugs just because a family couldn’t afford to buy anti-TB meds anymore. One month of skipped medication could mean the disease can come back with a vengeance. Sadly, this is a common theme all over the Philippines.

What makes it more difficult for my daughter is that MTB didn’t present itself in the fecalysis because it turns out the infection is outside the intestines and colon. I remember our hema-onco saying that she wanted some tissues taken from the colon because she saw a slight thickening of the walls. Again, thickening of the colon walls could indicate infection or malignancy. Up to the last moment, it’s still a toss-up between GI TB and intestinal lymphoma.

Even though my daughter is already being treated for TB, we’re still not cleared for malignancy since it’s the histopathology that would determine that. And it would take three weeks.

I personally feel that up to the last moment, we were battling cancer. We were like a hairline between TB and lymphoma.

Prayers made a lot of difference. Thank you, Lord.

Ice cream for some serotonin boost.

We are going home tomorrow!!!

I finally spoke to our IDS, not just the fellows, and she said that once she saw the granulomas, she immediately issued the order to reinstate the anti-TB meds and order a discharge within 24 hrs. Granulomas are unmistakable characteristic of TB. She just had sent the ascite fluid to RITM to ID the MTB and test for resistance. But even without the GeneXpert test and PCR, she is already confident that all the symptoms presented are that of TB.

During the biopsy when they drained my daughter’s ascites (about 90ml of it), she asked for a photo of the collected specimen. The color already told her it was TB.

She said they decided to do this intervention biopsy vs more tests to check for lymphoma and other cancers to save me the agony of being perpetually on the edge.

Thank you, doc, for saving my sanity.

They started sedating her a few minutes before 2 pm. I was holding her hand and she fought the drug as she tried to still look at me straight into my eye, as if looking for assurance.

I had to leave because my anxiety was already climbing into my throat and I was becoming nauseous since I was seeing everything on screen (initial ultrasound). They will try to get ascite fluid, then move on to a CT-guided biopsy for AFB, for histopathology, and something else I forgot.

There is an onsite pathologist who will do a quick (I don’t know how quick is quick) preliminary analysis so the doctors will know if further intervention procedures will be needed. If none is needed and my daughter is stable, we will be sent home. She can go back to school after a week or two of rest.

It’s basically a waiting game because the histopathology report takes weeks. I will be a huge mass of nerves until then.

What our hema-onco told me a few days ago is that there are discrepancies between the findings of the PGH radiologist and that of our previous hospital. First is that the current radiologist didn’t find nodules around the liver, which was stated in the report of the first radiologist. I forgot what are the other discrepancies.

Could it be that the radiologist in the previous hospital is not that good and there could be wrong findings?

I don’t know what that implies. I don’t want to Google, I don’t want to think anymore.

Nurse told us that my daughter will resume her TB med and Vit B complex tomorrow. I guess they stopped everything so these won’t be in the way of our doctors’ lab tests and biopsy. Now that the biopsy is done, maybe it’s better to be on the safe side until we have clear evidence it is indeed TB?

But I haven’t spoken to any of our doctors yet so…🤷🏻‍♀️ What do I know?

Tomorrow I must bring one specimen to TB DOTS at the 7F and one to the National Tuberculosis Reference Lab at the Research Institute for Tropical Medicine in Alabang. I don’t have my car with me and I can’t leave my patient alone so I have no choice but to ask the girls’ dad to bring the specimen there.

It’s a roller coaster ride today.

When I took a shower tonight, my hairfall was akin to what I experienced during and post-Covid back in 2021. My stress level must have been so high that I’m already losing a lot of hair.

I don’t know if my nightmare is just starting.

To give me a mental and physical break, my sister came to be a substitute watcher while I had a “self-care” hiatus yesterday.

But in real life, it’s not true. I still had to deal with getting the partial billing, bringing docs to FMAB for the MRI schedule, and giving consent to do the biopsy. No complete departure from hospital life.

I had decided to ask for sedation for my daughter’s MRI because she’s having panic attacks with just the thought of going through another scan—this time an hours-long scan. The CT scan was a traumatic experience for her since the machine that injected the contrasting fluid was without any regard for her pain tolerance.

I can’t fault her as she was always in pain all over because the nurses in our last hospital weren’t skilled. 1) her IV insertion always had bloated and burst her veins that may have contributed to her fevers and they don’t check for that unless I called their attention; 2) she was poked all over because they ran out of healthy veins and extremities that were not black and blue from burst veins, her feet did not escape the IV insertion roulette; 3) it didn’t occur to them to use infant-sized needles to end her misery. It was only when we were boarding the ambulance when they thought of doing that.

That’s why our attending pediatrician in the last hospital is so frustrated. She’s my older sister’s best friend so she has our best interest at heart. She knew that we would only have the best care in PGH that’s why she was so insistent in transfering us here on Day 1. She herself is frustrated with nurses there because some just came fresh from school. They didn’t bother to know why simple things like this or that had to be done to the patient—ergo they don’t care how it is done.

I encountered a really dumb nurse there, I’m sorry to say, and she sent me off the rails. She always forgets to tell us important orders from the doctors like 1) take the TB meds on an empty stomach because my daughter’s nutrient absorption is next to nil; 2) the supplements needed to be stopped since that may send my daughter to hurl every little thing she ate because iron tastes nasty; this neglect did send her breakfast down the vomit pan; 3) the Pediasure is not needed soon, only when she’s on a liquid diet, which she didn’t have to go through, and yet this nurse kept harping that I buy it from outside ASAP. Like, hello! It’s fortified milk, it’s not medicine so buying it is not on the priority list and besides I couldn’t leave the hospital premises because we were supposed to be under Covid isolation. I told my sister I doubt this nurse will last long in a hospital abroad because she was just so stupid.

Beggars can’t be choosers, our family friend-pediatrician said. Private hospitals in the provinces had to accept all kinds of nurses because the turnover is high. I remember the NICU nurses (when twins stayed there for a month after birth) only had to do a year-long tour of duty before being accepted for jobs in the Middle East.

Our family friend-pediatrician was livid when Marcos declared that nurses who have yet to take or pass the boards should be accepted by hospitals nationwide to solve the staffing crisis. Here we are, already dealing with incompetent board-passers…how worse can it get?

When I was relating to our IDS our woes with multiple phlebitis, she assured me that our nurses now are already battle-hardened and some of them had been with PGH since she was a student. I told her, I know, since my parents had been patients here several times.

I think nurses here, despite being a government hospital with worn down walls and elevators constantly under repair, are compensated better than in private hospitals that are owned by large corporations and private equity firms. These owners squeeze every single drop of peso to give back to shareholders without any regard how this would translate to services. We’re dealing with life and death here. That’s why I commend Helen Dee for telling it to my face that she is not keen to profit from other people’s misery. “I cannot bear the thought of making business out of illness,” she told me. So I guess as long as she’s alive, Yuchengco Group will not go into the hospital business.

Anyway, I learned from classmates of the ex-husband a long time ago that they as nurses here had higher salary grades vs nurses in other govt hospitals and private institutions and they enjoy benefits like they can send their kids to UP-administered schools just like us since they’re considered UP employees. But of course the lure of higher pay abroad (London) sent them packing after xx number of years here.

In exchange, PGH nurses (and doctors) are worked to the ground since the cases here are some of the most confounding ones you would ever find.

I went to Robinsons to buy myself house clothes because most of the time I’m just in the room so might as well make myself comfortable and catch some zzz whenever I can because I haven’t had straight sleep for weeks now. Then my sister told me to have a massage, which I did. Had a two-hour massage, which I would like to have again when I get a substitute watcher.

There’s a small branch of Decathlon here so I bought Twin I a pair of shorts she could use while my sister teaches her the basics of volleyball. Twin I wanted to join the school team even without having any idea how painful it is 🤣. She is also running for class rep in their high school student government and one of their projects is fundraising for additional school lockers.

Then I took my sweet time dining at Yabu. The thought of having hospital cafeteria food for days again depresses me.

I was informed by our hema-onco fellow that the biopsy will be done on 12 Sept. We already have a schedule for the biopsy and yet the MRI is still up in the air. So what’s the point of having the MRI 🤣?

What confounds the doctors here is that the target organ is embedded deep within and they have no idea which organ was it. They are just guided by where my daughter’s pain was. The early CT scan reading was badly done since information was scant so they had to do 3D rendering and a possible rescan.

Now that fevers are gone, they are pulling out the last antibiotic. The IDS said the fevers that wouldn’t abate and vomiting could have been caused by Covid. That combined with 1) infection; 2) TB 3) inflamation from somewhere; 3) or malignancy.

Now the fevers have gone for two days now…my hopes are up.

After a few harrowing days of having my faith tested, I have finally found peace. I had been undergoing prayer and fasting every other day. And this is what my prayers have given me: a message that whatever is the result of the biopsy, it’s in God’s hands and He will take care of my girl. If it’s cancer, so be it. It’ll just be a longer battle for us. But I believe in the divine providence and grace and miracles do happen. Because this is no longer my battle nor my daughter’s battle.

So when I fight, I’ll fight on my knees
With my hands lifted high
Oh God, the battle belongs to You
And every fear I lay at Your feet
I’ll sing through the night
Oh God, the battle belongs to You

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.