When we get to clinic, Elsa first gets her port accessed. Before we leave in the morning, I put numbing cream over her port (kept in place by Glad Press & Seal – the best!) so that she doesn’t even feel the needle insertion. This is one of the nice things about her being a toddler for all of this: Toddler brain + no pain = No fear. Phew.
That mask stays on for approximately 0.03 seconds. And the glove? The glove is just for fashion.
Here she is having the needle placed. Her port lies just under the skin on her left chest wall. Notice her total apathy and boredom. Seeing this picture, I realize that I should be wearing a mask too! I’m breathing down her neck, all over her sterile field – oy. Bad nurse mom. Bad, bad nurse mom. Sheesh.
Needle in my chest? Ho hum.
Once the needle is in, they tape it down and leave it there for the rest of our visit. This way, they can draw blood, give her fluid/transfusions/medications if needed, and give her chemo. When this whole thing started, I was terrified she would pull at the needle, but once it is in there, she forgets it exists. Another great thing about toddler brain: Out of sight, out of mind. Her port is a little positional – they say that the tube inside might get a little kinked on her collar bone – so we have to move her arm around a bit when she gets her blood drawn. She finds all this arm flapping pretty amusing. Plus, you can’t hear it, but Mary, her nurse, is singing, “Where is Tubey? Where is Tubey? Here I am! Here I am!” (to the tune of “Where is Thumbkin?”) “Tubey,” is what the nurses call the kids’ port access devices. P.S. If I could take Mary home with me, I would. Immediately. Elsa loves her, to the max.
Getting blood drawn? Nothing to it!
Now, we spend two hours waiting around for her blood test results. We are mainly interested in her ANC (Absolute Neutrophil Count), which is a measure of her immune system’s strength. They are also looking to make sure her hemoglobin, hematocrit, and platelets are up to snuff. Plus, they are always watching her liver and kidneys to make sure the chemo isn’t getting too toxic. We spend this waiting time: running around the 2nd floor of the hospital, visiting the GI clinic (which is right across the hall), riding the elevators up to the 8th floor and back down to the basement, checking in on the Surgery clinic waiting room (where they have some neat toys), stealing the nurses’ keys so we can go try to open various locked cabinets, and playing with the Child Life staff in the oncology waiting area. I was too busy chasing her, so no pictures of all that fun stuff. Grammy came with us on this last visit, so here, Elsa gets her blood pressure checked while washing Grammy’s arm.
Multitasking.
Once her blood results are back and we have waited the requisite 6 hours without eating/drinking, Elsa is ready for the procedure room. There, she gets a lumbar puncture (spinal tap) and the intrathecal methotrexate (chemo in her spine). Thank goodness it is 2011 and kids get sedated for these procedures. Mary was telling us that, when she first started doing pediatric oncology, they didn’t sedate the kids for anything – not even the bone marrow biopsies. She said that, you would have to pry children off the door frame, kicking and screaming, to get them manhandled down on the table.
Elsa, on the other hand, waltzes into the room, climbs up on the table and sits happily while they give her Versed (medicine for sedation) to make her silly and floppy. Sometimes, she even does a little hip wiggling dance that makes everyone in the room smile. Once she is lying on the table, they give her Ketamine (both for pain control and sedation), and, though her eyes are open throughout the whole procedure, she lies still and quiet. The first couple of times she needed procedures, I sobbed quietly through the whole thing, holding on to her face and whispering in my head, “I’m so sorry. I’m so sorry.” I’m happy to say that, for the last two spinal taps, I have made it through without a tear – funny the things you can get used to.
Getting some versed - about to get real silly!
Versed + light-up toys = genius
Feeling good. . . .
Needles in my back? No sweat.
The actual spinal tap/spinal chemo, thankfully, only takes about 5 minutes. They watch her pulse and oxygen saturation through the whole thing and, so far, she has done exceptionally well for all her procedures.
Just a little post-sedation hallucination.
That hardest part is keeping her lying flat for 30 minutes after the procedure, but I have mastered how to climb up on the table and nurse her lying down. Reason #57 I am happy she is still nursing.
And now for my official, favorite picture of all time:
Hey mom! Hey Dad! That was so fun!
With a look of deep concern, people often ask me, “Is it just terrible having all these clinic visits?” As you can see, we generally have a great time at clinic. There will be some phases of treatment in our future where we might have less fun, but for now, we are trying to enjoy ourselves as much as possible.
