Author Archives: Georgia

Our clinic visit on Thursday went well. I hesitate to say it, but I think Elsa has turned some sort of developmental corner where she actually understands now that she can’t eat or drink and this understanding has brought us both peace. When we started this whole crazy ride, spinal tap days were absolute hell. Telling an 18 month old on steroids that she can’t consume large quantities of food for 6 hours is a totally heartless, miserable task. The day was spent weathering storm after tantrum after miserable breakdown. At the end of the day, I would feel like I had been in a rock tumbler for hours. Now, Elsa asks to “eeeeeat” or do “nana” and I simply say, “We can’t eat or drink until after Dr. Parikh puts the medicine in your back,” and she just shrugs and moves on to something else. Sometimes she asks to eat and I say, “Not until Dr. Parikh does what?” and she smiles and points to her back. Amazing! Granted, she asks to eat 15-30 times during the waiting period, but each time, when I explain to her that we have to wait, she quietly accepts her situation. I know this sounds painfully simplistic, but life with a two-year-old is all about these seemingly tiny, incremental shifts in their being that usher them forward out of their baby-ness and into being a kid. In the daily grind of our mom/daughter life, these shifts bring about little earthquakes that shake up our whole routine. This time, the change is for the better.

So Thursday was relatively easy, but, unfortunately, Saturday morning, at about 3AM, gifted us a fever of 102.2 and a trip to the ER. As an ER nurse myself, I find it especially difficult to bring my kid in for just a fever. I have seen hundreds of patients who bring their kids to the ER for a simple fever and the question [that I only ask in my own head] is, “WHY!?” “Why on earth would you bring your kid in for just a fever!? Keep them home. Tylenol. Hydrate. Snuggles. Done!” But to the ER we go, anytime her temperature is above 100.4. Doctor’s orders.

I was thankful that I didn’t see this fever coming though. Some nights, she feels warm to me before bed, so I spend the entire night tossing and turning, repeatedly checking her temperature and trying to refocus on some meditative tricks I have that distract me from my anxiety. I go through the alphabet from A-Z, thinking of words in Spanish. I go through the alphabet A-Z, naming animals. The anxiety I have about the possibility of an ER trip is killer. The actual ER trip, itself, is usually not as bad as the anticipatory anxiety.

Now for some other things for which we are thankful. Throughout this whole BS cancer thing, John and I have found it immensely helpful to constantly – and outloud – acknowledge the things that make us lucky. See, I even made a chart about it: Elsa’s Leukemia FAQ. So first off, whenever we have to go to the ER, we call the on-call oncologist and they make sure that the ER knows we are coming. The minute we walk in the door, they see Elsa’s little bald head and we get VIP treatment: ushered straight to a room, avoiding all the other kids and their germs. A nurse is in our room within minutes and Elsa’s blood is sent to the lab within 10 minutes of our arrival. So far, Elsa has never made a peep about being accessed in the ER – even though it is not her beloved Jeannie down in the ER.

Since CT Children’s Medical is a pediatric hospital, we don’t have to worry about all that scary stuff that goes along with a regular ER: drunks, trauma, cardiac arrests, etc. As an ER nurse myself, when I see a pediatric patient coming in, I run for the hills, hoping another nurse will get the patient. I am terrified of pediatrics. My tagline at work is always, “I’ll deal with all your drunks and change all your adult diapers if you will take my one pediatric patient.” Their tiny bodies, tiny medication doses, and terrified parents have always intimidated the hell out of me. Granted, since Elsa got sick, my feelings about pediatrics have been changing, but historically, I avoid sick kids. At CCMC, we never have to worry about getting a nurse or doctor who secretly hates pediatrics (like me!). Everyone there specializes in the wee ones and that makes a WORLD of difference. They actually like being around sick kids – go figure.

So this particular trip, we were there for about 4 hours total for a blood draw, a dose of IV antibiotics, and instructions to come back in 24 hours if she is still febrile. Her ANC was 1900 (it is elevated because she is clearly fighting off something) and we don’t have to stay unless she is febrile with an ANC less than 500. So far, we have managed to stay home and she does seem to be feeling better.

And now for the requisite pictures from our Thursday clinic visit:

Hiding in the curtains:

Getting blood drawn is so much fun!

Playing in the sink is serious business:

And finally, my picture of the day over at the 366 project was a photo of her spinal tap. It’s not so gruesome, but there is a needle in the picture, which might make some a bit woozy. I like the picture, anyway. Day 68/366: Where Cancer Cells Hide