It's Saturday, January 28, 2012 and Lorelei has had to leave Tiffany Castell's funeral early because her persistent cough has become uncontrollable--she was feeling like her presence was an interruption to the funeral.
Since it is Saturday, and her family doctor is all booked up, we have no choice but to go to the ER or go to an after hours clinic (as I lovingly refer to as "Doc in a Box.) We select the Doc in a Box. After all, it's just a cough. She probably just needs steroids and maybe an antibiotic. We've already been doing nebulizer treatments with albuterol. These haven't helped much. So, we suspect it's become more than just asthma (as we've been told it has been asthma for many months.) Steroids have helped in the past but as soon as they wear off the cough is worse.
The doctor at the clinic seems to think it's still just asthma. But Lorelei has been saying "This cough feels different." So, I ask the doctor to do a chest x-ray. Lorelei had pneumonia 6 months earlier (in July 2011) and my "mom hunch" was that she might have it again. The doctor argued that it would not be pneumonia since she didn't have a fever and a chest x-ray is really not necessary. But I insisted. And I'm so glad I did. The doctor came back into the room with a pale face and asked if the previous x-ray had been done at his facility. He needed to see something to make a comparison. But it had not. So he broke the news that there was a suspicious large mass showing up on her x-ray and that we should probably "get it checked out." He said the mass was in the mediastinum and that it might just be an enlarged thymus. The Doctor left and the nurse came back in the room to give us our "papers" and she casually says "The doctor told you about the tumor, right?"
Lorelei freaks out. Tears. I'm holding my tears back and being strong because I know Lorelei is terrified. We check out, pay our $30 copay and go sit in the car to collect ourselves.
Who do you call first?
I called her family doctor. Crap, it's noon. Answering machine. I leave a panicked and pleading message. "Please, if there is anyone still there at the office or able to come back to the office to meet us, we just need to see the x-ray of Lorelei's chest from July. We've just received disturbing news about an x-ray taken today and we don't think we can wait until Monday for some sort of answer. PLEASE call us back."
We got a phone call back! The PA had worked late and had just left the office and was on her way home when she got our plea. So she says she will turn around and meet us at the office. We can't express our gratitude. I call Kevin and tell him we need us to meet us at the doctor's office; something is wrong with Lorelei.
Three different vehicles converge on the doctor's office. We place today's x-ray in the computer so we can compare it with the one from July. There is definitely something to be concerned about. The PA offers to send us to the ER for a cat scan. But we really don't want to go to the ER and repeat the whole story over and over again. We just want the CT scan. (And our doctor can only order a CT at Baptist but we have really come to hate the Baptist ER from previous experience.) We'd prefer to go to Mercy.
Brilliant idea. It's not what you know; it's who you know. We are planning to have dinner that evening at Mark Gilchrist's house. He practices at Mercy. Why not call Mark and see if he can help us circumvent the ER process (and charges) and just have him order the CT.
We called Mark's cell phone and he agreed to call ahead to Mercy to order the scan. We walk right in and they take her back right away. (No triage, no nothing!) So wonderfully easy. Then we leave and go home and wait for Mark to call us with the results after the radiologist calls him.
It seems like it may have only been one hour between the time we got home and the time Mark called. The phone call felt like it happened in slow motion. He didn't give us the news we were hoping for, that this was just a glitch on the x-ray and that there is really nothing there. Of course we knew that was wishful thinking. Instead, he says indeed, there is an 11cm mass in her chest that is actually comprised of many individual lymph nodes. It is not in her lungs; it is in the mediastinum area on top of her heart and pressing on her lungs. It is likely Lymphoma. We need a biopsy. "Bring Lorelei to my office first thing Monday morning and we'll arrange for the biopsy." How convenient that Mark is an ear nose and throat doctor because a biopsy can likely be taken on a node in her neck. It's a procedure he does often.
That's it. It's Saturday. Your kid has a mass in her chest and there's nothing you can do about it till Monday.
I hate weekends. But God knew what He was doing. We needed this waiting time to allow God to prepare our hearts for the battle. So, knowing something is wrong but not knowing exactly what it is or how to fix it, we attempt to proceed with life. Kevin and I went to Mark's house that night for a lovely dinner with old friends. We stayed busy Sunday with church activities and prayer and successfully avoided Googling too much. We googled enough to know that if Lorelei had lymphoma we were voting for it to be Hodgkin's and not non-Hodgkin's.
Posted on Sat, January 28, 2012
by Andrea Decker