Another Mother Story

It was almost exactly 9 years ago when Pip and I were in a grocery store in Jamaica Plain- I sometimes went to this particular grocery store because they sold Misty Knoll chicken, and it isn't too far from the Cambridge library where I would take Pip on special occasions (he still LOVES going to the library). Pip was in a Montessori nursery school at the time where it was ingrained in us to let our toddlers "do it themselves". (Oh my goodness, thinking about the hours spent waiting for our 2-year-old to put on his shoes still causes me to take a deep breath!). But on this day, Pip seemed too tired to do it on his own, so I put him in the grocery cart instead of letting him walk alongside me. And when he asked for the rubber bath toy shaped like a frog, I took it off the shelf, and handed it to him (this was unlike me--it was also in-grained in us not to buy plastic toys). I hurried to put the items on the checkout counter wanting to get home for Pip's nap. They helped me pack up the pounds of chicken and local asparagus and spinach. I was planning to make a spring-inspired meal that night.

After paying for the groceries and Pip's new toy, I picked Pip out of the cart, and placed him down next to me. The person at the checkout counter looked at me (I was 7 months pregnant), at Pip, and handed me the heavy grocery bags. Luckily, our car was parked across the street. I gathered the grocery bags, took Pip's hand, and we began the short journey out the store, across the street to our car.

In the middle of the street, only steps away from our car, I paused, sensing what I thought was Pip's fatigue, I scooped him up onto my hip. We got to the sidewalk and I glanced at Pip's face. His eyes rolled back into his head, and his back went completely erect, up, and away from me. Somehow, I managed to hold onto him. I began screaming his name: "Pip! Pip! Pip...PIP!" I suddenly had a memory from a few months back when another mother shared a story about her son having a seizure after hitting his head. 'Is he having a seizure?' I wondered. He began to convulse. I got down on the sidewalk and held Pip's head in my lap. I began to scream for help. Suddenly, he was limp and unconscious.

A man (an angel?) came to my side. I continued to call Pip's name as I held his sweet head. His eyes were closed. He seemed asleep. I was close to hysterical. The man called 911 and relayed the situation. To this day, I do not remember this man's name or face- just his presence. The operator asked him if the child was breathing. The man asked me if Pip was breathing? I hadn't even considered this. "Oh my God, of course he's breathing. He has to be breathing!" I yelled. I was beyond knowing how to confirm if he was breathing. I just couldn't comprehend the alternative. I think the man checked his pulse.

The ambulance arrived. In the ambulance, Pip came to. He threw up. I remember the stench of strawberry yogurt all over me. I was so grateful he was awake and throwing up. One step at a time. "What's happening?" I asked as they took his vitals and hooked him up to oxygen. They brought us to the nearest hospital-- Children's Hospital. Thank. you God.

Roo arrived. Thank you God. At the hospital, Pip was stable. He was a tired version of his jolly self. We waited for the ER doctor. The nurse told us she was pretty sure it was a febrile seizure--something common in babies and toddlers when they have a fever. 'But how did I miss the fever, especially a high fever?' I wondered. The doctor came in, asked us some questions, and assured us, like the nurse, that it was most likely a febrile seizure even though he didn't have a fever at the moment. I thought of the mother telling me about her son having a seizure after hitting his head. "Wait," I said, "Pip fell out of his chair last night and hit the back of his head. Could that have anything to do with this?"

"Due to how long ago that was, it's unlikely," said the doctor, "but let's run some tests just to be sure."

"OK," I said, adding before she left the room, "how concerned are you, on a scale from 1 to 10?"

"About a 2 or 3," she said.

They drew Pip's blood and did a ct scan. We waited for the results. Everyone told us we would likely be heading home in a few hours. Pip napped in my arms. Finally, the doctor came back.

"Pip's ct scan came back normal," she said "but his blood work is showing some abnormalities. We would like to admit him to hematology to run some more tests."

"Are we still going home this afternoon?" I ask.

"No, we'd like him to be be here overnight."

The feelings of horror began to creep back up behind my heart, into my throat: "How concerned are you, on a scale from 1 to 10?" I asked again.

"About an 8 or 9."

My heart dropped.

Pip was admitted. They told us his red blood cell count was very low. They ran more tests. Soon, it was dinner time. One of us needed to find something to eat. I decided I would go and pick up our car. I kept thinking about the chicken meat. It was a mild night when I stepped out of the hospital, the fresh air enveloped me. I got in an uber and headed to JP. It felt like days rather than hours since I had been there. Getting out of the uber, I felt like I was at a crime scene. There was a note on my windshield- it wasn't signed, but I assume it was from the angel man. One of Pip's red Crocs was next to the note. 'I found these on the street. I hope everything is OK.' I wish he had left me his name or phone number so I could thank him.

I began to cry. I got in the car and drove back to the hospital. On the way, I spotted a dumpster. I pulled over, got out, and opened the trunk. I have no recollection of how the groceries got in my car. I spotted the bath toy and removed it from one of the bags. Anxious to bring the frog to my boy, I tossed the grocery bags, whole, into the dumpster.

At Children's, Pip's hematologist, Dr. Cantor, asked me to step outside the room while Roo stayed with Pip. "There's a chance your son has Diamond-Blackfan anemia, which is contagious to fetuses," he said, "You may want to stay away from your son until we know more."

"That's not possible," I said. One step at a time. I walked back into Pip's room.

That night I "slept" in bed with Pip. Roo slept in the chair beside us. All night long, I prayed, over and over and over again: "Please God, let Pip get through this, happy, healthy and safe. Please God."

The next morning, Dr. Cantor, and a team of medical students came into the room with Pip's CBC--I quickly learned this was short for a Complete Blood Count. "We believe Pip has a very rare condition called Transient Erythroblastopenia of Childhood (TEC)." Dr. Canton relayed, "The good news is that if you are going to have a blood disease this is the one you want, because it is transient." I thought about the other children patients here on the hematology-oncology floor. I held on, for dear life, to the words: "good news."

"Pip's body has stopped producing red blood cells" Dr. Cantor explained. "At this point, his red blood cell count is so low he needs a blood transfusion. His body will naturally start producing red blood cells again in the next few weeks or months. We will monitor his blood until that happens to ensure he doesn't need another transfusion. Here's the good news: once his body starts producing the red blood cells again, the TEC will not come back. After the transfusion this morning, he will be discharged, and we will test his blood in 4 weeks, and again in 8 weeks."

"I don't understand," I said. "How did this happen?"

"The short answer," he replied, "is we don't know. There is some speculation that TEC is caused by a virus but we have no definitive answer. As I said, it's a rare condition-- hence I have my team of medical students here --about 4 in 100,000 children develop TEC. All patients with TEC recover completely without sequelae."

To be clear, I asked: "So he has the transfusion, we go home, and then we wait until his bone marrow starts producing red blood cells again?"

"Yes," he said. "And in the meantime, Pip should feel better once he's had the transfusion. He's likely had TEC since February, but it only recently became so severe. You're lucky you came to the hospital yesterday."

"Well," I said, still trying to wrap my brain around everything we were hearing, "don't you think the TEC caused the seizure?"

"It's hard to say," he said, "It could have, but it is also very possible that it had nothing to do with it."

'Ahhhh, are there any definitive answers in here!?' I wondered.

"Do we need to worry about the seizure if it wasn't caused by the TEC?" I asked.

"We believe it was a febrile seizure which is common in toddlers," Dr. Cantor further explained. "We advise you take him to his pediatrician to test for strep which may have caused the elevated fever that caused the seizure."

My head was spinning with questions, questions, questions: So Pip is going to be OK? Are you sure it's TEC? Are you sure the TEC won't come back? Are you sure his body will start producing red blood cells again? You're telling me the seizure was unrelated to the TEC- that it just so happened we discovered the TEC because of the seizure which may have occurred because of Strep?

Again and again, he answered, "Yes," and "As far as we know, yes," and "Yes."

"What would have happened if we hadn't discovered the irregular blood work yesterday?" I dared ask, strangely grateful he had hit his head the night before and I heard that mother's story about her son having a seizure all those months ago.

"Pip's red blood cell count is severely low. Without a blood transfusion, he could have a stroke."

"Can I donate the blood to Pip?" Roo asked. All three of us are type A Negative, which they explained is not very common among donors.

"Unfortunately, you can't," Dr. Canton replied, "It takes 24 hours for blood to be scrubbed and screened before it's ready for donation."

"OK, well then I will go and donate my blood right now to be ready for the next donor," Roo said.

"That would be fantastic," replied Dr. Cantor.

After the blood donation and transfusion, which Pip received painlessly while watching Elmo, we packed up our things, and drove home. Leaving the Hematology-Oncology floor, my heart broke for the families spending another night. I vowed to keep them in my thoughts and prayers, where they and all those that came before and after us, remain today.

Here is a video of Pip the day after we came home from the hospital.

Last week I wrote: "I'm not quite sure where to step as the world opens back up." It occured to me that this is the same feeling I felt all those years ago. I have a journal entry dated July 9, 2012 (three days before Phoebe was born) when were told by Dr. Cantor that Pip was, once again, producing red blood cells, and we could now close the book on TEC, when I describe the feeling:

The past few months have been hard. I've had a difficult time getting my feet back on the ground, or better said, trusting the ground underneath them since Pip's hospitalization.

We do not have control over whether we receive good or bad news, but we can appreciate the angels sent along the way to guide us, and the invisible forces at play. Having Strep (Pip tested positive the next day), having a febrile seizure, hitting his head the night before, hearing the other mother's story five months before...all these occurrences contributed to us discovering the TEC, and possibly saving Pip's life. Was it just the Misty Knoll chicken and library books that brought me and Pip far from Charlestown that day to a grocery store near Children's, one of the best children's hospitals in the world? Did someone whisper in my ear in the middle of the street that day to pick up Pip, seconds before he had a seizure? Did my late grandmother, who used to collect frog figurines because she said they reminded her to forever rely on God, hand Pip the bath toy? The mother of the son who had a seizure after hitting his head, the man on the street, the doctors, the nurses, and then of course, Phoebe--they all arrived as guiding lights along the way. I am still fearful of bad news, but it helps me to think of angels and invisible forces supporting us. Believing in them helps me live more beautifully, one step at a time, in the midst of the inevitable uncertainty and change.

Yesterday, I brought Phoebe to get her haircut by MaryEllen at M Beauty Lounge (for those of you who are local). Like Phoebe, MaryEllen is a horse person; she has a horse named Chunk. Phoebe told her she is saving up to buy a pony, but she is worried about her pony getting sick. "Oh sweetie," said MaryEllen, "that's just life."

Thank you, MaryEllen, for telling her the simple truth.

As always, thank you for reading. It feels good to bring these stories into the light. Perhaps you or someone you know has a child who has been recently diagnosed with TEC. I would be happy to assure them, 9 years later, that Pip is thriving with a normal CBC.

Georgia

P.S. A few things:

1) If thinking about the invisible forces at play in our lives interests you, please consider registering for our next Blue Light Discussion on Wed May 19 @ 630PM EST.

2) If you haven't already, buy your ticket to our virtual Blue Light Show at Williams Fine Art Dealers on April 29 at 730pm. With your ticket, you will receive an e-catalogue to the thoughtfully curated show that looks at Blue Light in fine art, entrance to the live event where you will see the pieces hanging in the gallery, and hear about each artist (there will be time for q&a); you will also receive free shipping on any purchased work and a 15 percent discount on any work purchased before May 2.

3) Please register for our book club on See no Stranger if you haven't already so we can send you the discussion questions.

4) You totally deserve a good show recommendation if you got all the way here! This is a really intriguing watch on Netflix, and it's good for the whole family: This is a Robbery: The World's Biggest Art Heist