First, I just have to say how grateful I am and how blessed we feel tonight knowing that Caitlin remains stable. Apparently we’ve been worried about a shadow for the last 6+ months. A shadow!!!
Caitlin finished up her chemo right around her fifth birthday. For most cancer kids, this is a huge day complete with the ringing of the off treatment bell, a special song from the oncology staff, and gifts and balloons. Pretty neat, huh? Well, we got none of that. I’m not bitter, it’s just the way things are for most brain tumor kids. It’s a wait and see, never feel done kind of existence. We left clinic that day feeling worse than when we went in… like we were fighting a life and death war without weapons.
From that time on, we started visiting clinic as a “off-treatment” patient. Back then, Oncology was on the first floor on the south side of PCMC. We would always park in the little parking lot, go through a lobby, round the corner, and be in clinic. There was a waiting room with a TV, toys, and a table with crafts. You would speak to the receptionist through a hole in the glass window to get checked in.
Unfortunately due to the number of kids with cancer, it was necessary to move Oncology to the fourth floor and with that move came a more formal, private experience due to HIPAA rules being enforced.
An average clinic visit pretty much always starts with us running late. I swear, I have no idea why, but we are always late, even when we leave early. We now park on the north side and go in through the main lobby, past the cafeteria, to the elevators and we ride to the top. The clinic is to the right of the elevators and the door isn’t very well marked. It’s kind of like a secret door that you only notice if you are looking for it. The receptionist is no longer behind glass and check-in is fast and easy. It’s a matter of looking over your paperwork to make sure nothing has changed and signing in.
Next is vitals with Pam, who has been with us from the beginning. She’s such a nice lady and used to always tell Caitlin how she looked like a blond version of her grand daughter. First comes weight, height, then blood pressure. The hospital bracelet is put on and a room is assigned, either in the clinic or across the hall.
The room is simple and we always need more chairs. There’s a bed covered in stiff white paper, a rocker, a regular chair, a stool on wheels, a sink and counter, and plenty of lovely fluorescent lighting.
Once we’re settled the visitors start to arrive… Bridget, the brain tumor advocate; Leah, our social worker; Dr. Colte, the psychologist; Dr. Bruggers, the oncologist…. and many times there are others who pop in for this or that. We answer a lot of questions, Caitlin is fully examined, the results of the MRI and blood work are discussed, and there’s a lot of chit chat and catching up. Usually we are there for about two hours. As we mostly schedule our appointments in the late afternoon, the hospital is quiet and calm as we’re leaving. It always feels good to see our team, then have the freedom to leave knowing all is stable and well.
Dr. B. is meeting with the tumor board later this week for another look at the MRI and will also be meeting with the endocrinologist regarding Caitlin’s weight. At 14 years, 4 months, she is weighing in at 80.91 pounds (2%) and is 61.81 inches (27%).
The MRI report reads: Stable post treatment appearance of the brain. No CSF dissemination of tumor is demonstrated compared to prior imaging. The appearance of the surgical resection cavity in the left frontal lobe is unchanged, with mild thickened tissue surrounding the resection site and no abnormal enhancement.
While it’s pretty easy to put into words how we have a MRI and go to clinic, it’s almost impossible to describe the emotional, mental, and physical toll it takes. I didn’t mention how I broke out in hives on the day of the MRI, or how Caitlin threw up and was miserable as she came off her medication, or how grumpy I was with Clint all morning the day of clinic, or the anxious voices I heard when I called Caleb and my parents after we got the results, or how I always feels bad after answering the doctors pointed questions about Caitlin in front of her. The actual process of having a MRI and going to clinic is a routine and is almost always the same. The memories, emotions, and anxiety that comes with it is also part of the routine. It’s messy and something I will never get used to.
3 comments:
You did a great job of painting the picture. Too good, in fact. Now I'm walking down memory lane. I am thrilled for the positive results.
Yeah for stable! That has got to be so difficult, you are amazing, all of you!
The Strength of an Egg
by J. Freitag
Parents of children with a terminal illness are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes! If you’ll think about it, you’ll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid. Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength. A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. “Balancing an egg” while running a household, going for doctors’ visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of medically fragile kids will pick themselves up and put themselves back together again.
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