It’s so wonderful to be back home. It’s nice to take a long hot shower in my own bathroom.

I am so exhausted. The emotional and mental toll on me is immense. I couldn’t curl up on my bed and pass out since I needed to unpack our lives for three weeks and fix broken things, such as the bidet spray that kept on leaking while I was away.

Going home was an ordeal since Twin A vomited inside the car. Good thing my sister has vomit bags in the pockets of the passenger side door.

And I need to wake up at 5 am to cook breakfast, help prepare Twin I for school, and make Twin A take her medicines. A lot of them.

🫠

It’s UTI. 😓

“What if this is UTI?” I asked our resident doctor when she told me the bad news that we had to be held back by 24 hrs + because of the fever.

She asked me, why do you think that? Her look was like, you are so random, Mommy.

I said, well, you know, in all the years I’ve been a mom, when fevers suddenly come out of nowhere and they’re high, 60-70% of the time it’s UTI.

Then I doubted myself because of that uric acid.

So overnight I held a vigil but failed (was too damn tired) to watch out for fever. Well, the highest temp my girl had was 37.6, which is not really a fever, at around 4 am.

Urinalysis showed that yes, it’s UTI and Twin A is on oral antibiotics now. So far so good.

As for the uric acid, the resident explained to me (well, she was also the one who also told me about the possibility of malignancy) that since cells are being destroyed (by the anti-TB meds), uric acid is released as a by-product.

That’s why our IDS is unperturbed. Our hema-onco, of course is hyper-vigilant, since my daughter’s genes are whacked (from my side and her dad’s side). She wants us back after I have gotten all the biopsy results and do another scan. There’s still this possibility of malignancy hanging over our heads.

We got discharged today but it’s very short notice so no one is available to fetch us. I decided to book a room with two queen beds at I’m Hotel in Makati because I want to treat my exhausted self. I needed to free up the room at PGH because a patient has been waiting for it since Thursday, poor kid.

I will still have battles ahead since I need to drive my daughter back and forth PGH for check ups. Plus the dreaded histopathology report.

For now, I’m luxuriating for a bit and will have a two hour massage later and take advantage of the unlimited access to onsen and sauna.

One victory at a time.

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In a sick twist of whatever, her uric acid climbed again. She had a fever at 3:30 am, 12 hrs after her first fever in a week.

Our hema-onco is worried but the lead now is our IDS so the decision lies now with the latter. Hema-onco mentioned something about doing MRI since our histopathology will take 8 weeks to finish. I can see in her eyes what she is thinking.

But I spoke with our IDS later today and she was not that worried about the uric acid until she sees how much it has gone up today. She hasn’t seen the bloodwork yet. She said the fevers may be part of the TB infection but they’re making sure so they’re checking everything. An ultrasound may be in the mix because a dull abdominal pain has been bothering Twin A.

If my daughter won’t have a fever today or tonight, then we might go home tomorrow.

I trust their judgment but I’m apprehensive about that uric acid that fluctuates.

I have aged 20 years or more in the course of three weeks. At least this week I exerted effort to make myself presentable to feel human again.

But you know, in the grand scheme of things, looks and material things don’t matter. If I aged 20 years, so be it, as long as I have my daughters with me. I promise myself that I will make a lot more memories with them, take a lot of photos of those moments, and cherish the mundane. To tell them I love them everyday.

I told Twin A that I don’t care if I remain single forever as long as we three are all together until they fly out of the coop. That’s all I ask in this life.

I told her, I have not aspired to climb the ladder in our company even though I could because that means I will be flying all over the region every month. That’s not what I want for us, especially with what we’re experiencing right now.

So please, get well, little one. We will have more adventures and memories to create. Make the best of what we have in the present.

What the fuck is going on?!

I already paid our bills, already submitted our clearance to the nurses’ station and I will just get our bags when my daughter suddenly had a fever. Her last fever was last week.

Observation for the next 24 hours.

She took it badly. She cried so hard, wanted to go home now.

I’m scared of what this might mean. Again.

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.

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Ice cream for some serotonin boost.

We are going home tomorrow!!!

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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.

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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.