My First Fathers Day

A lesson on gratitude

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My daughter Chloe was born in September 2021, making her 9 months old...how time flies! So, today marks my first official fathers day :).

She's already taught me so much, including one massive lesson on gratitude. 

When Chloe was about 5 months old, we noticed intermittent blood-tinged stool and nose bleeds. We went to our pediatrician, who attributed these findings to dry air (nosebleed) and anal fissures (blood-tinged stool).

Fast forward a couple weeks, I notice a petechial rash and a few oral lesions. So, we messaged the pediatrician to get a CBC. We were able to get an appointment in the early afternoon. 

At about 7 pm, he called me, telling me to head to the emergency department because her platelet count was 17,000. 

So, off we went to the nearest pediatric hospital as we would also need to get admitted. Another CBC was drawn in the emergency department, and her platelets dropped further to 7,000. So, up to heme/onc, we went to get IVIG.

For those unfamiliar with IVIG, it's a 14-hour infusion, which is a lot for a 6-month-old. But she was a trooper and smiled the entire time! 

A complete workup was done and subsequently diagnosed with Immune Thrombocytopenia (ITP). It turns out she's their youngest patient diagnosed with ITP. This also means there isn't a lot of information out there for someone her age.

The day after the IVIG was given, her platelets shot up to 41,000, which was a win for us! IVIG and steroids are considered first-line treatments for ITP. But, it's important to note that this only increases the platelets but doesn't stop the autoimmune destruction from occurring.

Then, about 3 weeks later, her platelets tanked again. IVIG is a bandaid, as there is no cure for ITP (no one truly knows why it happens either). 

For the last couple of months, she's had a baseline platelet count of 2,000.

We opted for observation due to her age (low risk of trauma) and the nature of the 14-hour infusion (this was very taxing on her). The other factor that played into this decision was the fact she has a high immature platelet fraction. This tells us her bone marrow is churning out a lot of platelets to compensate for the destruction that occurs once the platelets mature. These immature platelets also provide some protection against bleeding. We can also infer she has functioning bone marrow (which helps rule out leukemia). 

This is a prime example of how real life differs from the exam. On the exam, everyone under 20,000 would require treatment. But that wasn't the case for us. 

Side note: another difficult decision for us (that differs from exams) was when we noticed wet purpura for the first time. Because we caught this after-hours, I reached out to Dr. Sonpal, and he reached out to his pediatric colleagues. We all agreed we should head to the emergency department as this could mean impending spontaneous bleeding. Again, there isn't a lot of literature for this age group. Long story short (after speaking to the on-call hematologist), we left the emergency department and went back home to observe. She's had wet purpura come and go for the last couple of months. Much love to Dr. Sonpal for helping!

We are now 3 months into the disease at the time of this writing. 

She had a bone marrow biopsy four days back, so we can start her on a short course of steroids. This required general anesthesia which was a first for us. I actually held her as they pushed the propofol. This was very trippy as I saw her eyes roll back and her body limp.

She's becoming a lot more active, so our tolerance level for observation is decreasing, so we opted to start her on a short course of steroids. Because of her age, we don't want to begin steroids without the bone marrow biopsy. This could mask possible leukemia (although it's doubtful due to the high immature platelet fraction). So, we're currently waiting for those results as we speak. We should hopefully get the results and prescription tomorrow.

But I want to backtrack to when Chloe was admitted 3 months ago for her IVIG infusion. As I said, we were placed in the heme/onc ward and spent a couple of days at the hospital. But, during the first morning, I was going to leave the hospital to get breakfast for me and my Liz (wife). 

As I walked towards the elevator, I noticed a room with glass walls that was a dedicated playroom. This room had video games, board games, everything. 

It turns out this playroom was for the children undergoing chemotherapy. 

As I saw the children playing, I felt an immense feeling of gratitude fall over me. It was a reminder that things could always be worse. In fact, things are worse for many others. It's been 3 months, and I still think about that room and how we were only a few doors away. 

Chloe has taught me so much these last few months. I plan to spend the rest of my life repaying her for all these life lessons. 

I hope this reminds you of everything you have to be grateful for, and I hope you all learned a little about ITP today.

Happy fathers day to all my fellow fathers :)