Tag Archives: Delayed Intensification

Numero Dos.

All kids birthdays are an opportunity for parents to sit back and exclaim, “Where has the time gone? How did this happen? Where did our baby go?”

This birthday, though? It felt a little tenuous. A little too delicate to plan anything in advance. There has been this tiny, but exclamatory “wow,” in my head for the past couple of weeks. Wow, she is two. Wow, she might not have made it to this birthday. Wow, our life is so radically different from what we imagined it would be, one year ago. Wow. We are here. At two.

BUT! A real birthday, it was! As a present, we were handed an absolutely brilliant two-year old for the day. Brilliant to look at. Brilliant to be around. Brilliant and shining and fun. We’ve had a few days since treatment started (like this one: Day 169) where John and I can imagine what Elsa would have been like had she not gotten cancer. Today was one of those days. We lived each hour today so effortlessly. She roamed the house during her birthday party like the toddler I remember from 6 months prior. The toddler who left me breathless as I chased her through the library and who scared me with her independence and fearlessness. She played with her grandparents and two of her bestest (grown-up) friends. We couldn’t have any other kids over because her counts are so low, but she seemed none the wiser. Once everyone had left, I realized that she hadn’t cried out for me once! She was too busy for mama/nana and I couldn’t have been more pleased. Busy is good.

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Good morning Two!

Birthday Morning

 

Party Time!

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Hospital Room 810, in pictures.


First day. Fevers.

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Technically, not Room 810. John and I snuck downstairs for an ice cream date while John’s parents stayed in quarantine with Elsa.

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Day Three.  Elsa finds my artistic attempts dubious.

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John and I were allowed to leave the 8th floor, as long as we wore a mask. It was just the 8th floor itself (the kitchen, the playroom, etc.) that was off limits. Elsa, of course, was not allowed to go anywhere.

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Day Three: Hanging with Grampy

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Day Four: Somebody please get this kid a blood transfusion.

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Day Four

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Day Five: Looking eerily like Day Four, eh? Yeah, that’s because it was.

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Standing at the door. Wishing she could get out. Wishing her tether was longer.

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Have I mentioned before that she is a pretty intense kid? I mean, they’re just gnomes! Relax a little.

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A snack before they set us free on Day Six. For a combination of reasons, she refused to eat one bite of food for the entire six days. Had she not been nursing, we would have had to have some awful conversations about feeding tubes and supplementary nutrition. It felt funny to be supporting her on my milk alone, like when she was an infant. Plus, it was exhausting for my body and soul. That said, I’ll take nursing exhaustion over a feeding tube any day of the week.

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Day 190: Let loose

Six days later, they let us loose! Turns out we all had RSV (Respiratory Syncytial Virus). Blech. Her ANC was 0 for two days, which means she had no immunity to anything (anything!) and her fever ran in the 103′s-104′s for a few days before she started to turn the corner. She needed one blood transfusion and one platelet transfusion, but otherwise, it was a pretty uneventful stay.

None of us are at 100% right now, but we are exceedingly happy to be home. We are free to move about the house as we wish. We can go to the kitchen and make food whenever we want. No one pesters us at midnight and then again at 4am to draw our blood and check our blood pressure. No IV pole. No needle in her chest. No diarrhea-inducing, belly aching IV antibiotics. No mechanical bed. No fluorescent lighting. No hazmat suits. No masks.

Home is the best. THE BEST!

That being said, I am waiting for the stress and panic to dissipate. Something in my brain keeps shouting: “Her counts are so low! She is going to get a fever again. You are going back to the hospital. Don’t get too comfortable.” And it is possible. We could go back again before we are really out of the woods. I know it is no use brooding over it, and we should just enjoy the time we have at home. Everyone will tell me that. I know. I just need to figure out a way to intercept that shouting voice . . .

Next stop on the cancer train? Clinic on Monday to check if she needs any more transfusions. Next round of chemo (Interim Maintenance #2) starts the week after.

Oh yeah. One more thing: Delayed Intensification is over. OVER!

Day 185: Inpatient and I’m getting a pedicure

There is almost nothing that makes you feel more absurd than getting a pedicure while your child is sick in the hospital. I am like one of those Mob Wives. I am a Real Housewife of Suburban Connecticut. I am getting a pedicure and blogging on my iPhone: Absurd!

My massage chair squeaks and a lovely, but somewhat aggressive Korean woman at my feet tells me I need “therapy” for my calloused feet. Therapy, indeed. I tell her “Yes please. Therapy, please. Callous eliminator please.”

I don’t feel guilt, don’t worry. Not for this, at least. I feel only mild discomfort as my toe skin is clipped and relief that I am not glued between a mechanical hospital bed and my hot, sweating, immunocompromised child.

We are in for the long haul, for sure. Her ANC has reached zero and there is no fighting off whatever bug she has now. Her fevers are up in the 104 range overnight and she wavers in the 101′s during the day. She’s stopped eating, but thankfully is happy to nurse all day long. We’re just watching and waiting and hoping this is not something scary. Thankfully, they are thinking it is a virus that will run it’s course, however slowly. John and I are also coughing, sore-throated, snot factories. We are not helping Elsa’s cause, but we have no choice but to be there with her. The hospital has confined us to our room because we are a danger to the other immunocompromised children on the floor. Staff wear plastic, blue, haz-mat uniforms and masks when they come in our room; Elsa is too zonked to raise an eyebrow at these giant plastic smurfs with stethoscopes.

There are some moments of sweetness though. She is a child who snuggles only on her own terms and defends her personal space aggressively when she feels invaded. I quietly sit by and encourage this as I think it will serve her well as a grown woman. John has to ask her for kisses these days as she is quite the roiling mass of grumpiness and lashes out if surprised with an unwanted snuggle. He asks her, “Can I kiss your hand?” and she responds with a nod and her outstretched, mottled little fist. He kisses her and she quietly accepts. John and I find this adorable every time.

[*This callous therapy is very intense.]

Yesterday, I felt like, surely, this would be impossible. We could not possibly survive the intense discomfort of being sick ourselves, sleepless, and taking care of our sick two-year old in a 12ftx12ft confined space for the indefinite future. Today, I’m feeling a little more able. I turn on my constant treadmill of thoughts: She is alive. She is with us. She is alive. She is with us. Time will move forward. Time is moving forward right now.

[* Certainly it moves forward more pleasantly as this man massages my calves. This man has replaced the woman at my feet; he is the massage expert. He tells me I look tired. I tell him I live in the hospital now. He asks me why and I tell him my daughter is sick. She has cancer. He is sorry. He tells me his father had brain damage and was in the hospital back in Korea. He tells me his father would wake at night, when the rest of the family was sleeping. It was awful, he says. I nod and tell him, Yes, elderly people often wake at night in the hospital. They get confused. He nods and we are silent for a while. I tell him I used to work with some Koreans back in Queens. I tell him that I love Korean food and we laugh about Korean appetizers. I tell him Koreans never tell American diners what the food actually is - you just have to eat it blindly. He finds this hilarious and then becomes serious. "Do you think Americans here would like Korean food? I want to open a Korean restaurant." Yes, I tell him. "I love Korean food." I am unsure if I can speak for all Americans, but I do so cavalierly. He continues to massage my calves and we sit in friendly silence.]

It’s 3:30. I will go back to he hospital in an hour and a half. Renewed, hopefully, by these Koreans, and by time moving forward. By cold air and walking with my new, smooth, callousless feet, in flip flops, in the snow. By interactions with humans who are not wrapped in blue plastic suits, talking through yellow masks. By a few moments spent not thinking about whether or not the pale, hot, 30 pound body in my arms is a ticking time bomb or just working through a simple virus that will take an easy course.

Ok. Back to business.