I'm not even sure how to start this one there's so much to write. I think I'll start simply... if you take your child with cancer to a doctor that isn't hers for an ear infection you may find yourself in the hospital with a bunch of overzealous oncologists.
We visited Philly to see my family and were supposed to arrive on June 23 and leave on June 30. Chris would stay for the weekend and then go back home to work for the week. While we were visiting I would drive Bea to Pittsburgh and Lewis would stay behind with his grandmother. It's not a long drive and it was good for Lewis to hang with family. Easy.
When Bea woke up the morning she got her shot she appeared to be coming down with a bug. We'd been staying at my brothers and both of my nephews were sick with high fevers earlier in the week. Bea's ear hurt, too. So, I guessed it was an ear infection. A little Tylenol did the trick for awhile, she got her shot and we were on our way back to Philly. By the time we got back she was lethargic and running a high fever. So, I thought I'd take her to the doctor the next morning.
She woke up totally fine. No fever. Running around like crazy. Good appetite. No problemo. After lunch she wanted to take a nap and things went downhill from there. Fever came back. Lethargy returned. Her ear hurt again. She was not feeling well. But, it was late and I thought it'd pass.
Next morning she was no better so we pack up to leave for GA with the plan to go to an urgent care clinic. My guess was that she needed an antibiotic and some Tylenol. The urgent care clinic refused to see her because one of her symptoms was mild nausea. So, we were sent to a local ER.
I told them, of course, everything about Bea. Next thing I know she's getting a CAT scan and they're insisting that her symptoms are the cancer, not an ear infection. They did verify that she had an ear infection. They also said she had "hand, foot, mouth" disease, which it turns out was not correct. They gave her an IV antibiotic while we were there and took a blood sample. The blood sample turned out to cause the second nightmare. More on that later.
So, Bea and I got picked up by ambulance to go to CHOP, the Children's Hospital of Philadelphia. We were put in the ER and the next thing I know a neurosurgeon is in the room telling me that she has hydrosephalus (water on the brain) and that she has to have a tube put in her brain. I knew that wasn't the case. We went through this in December and it turns out the tube that was put in her brain back then to reduce swelling was NOT needed. She did not have hydrosephalus then and I knew it was not the case now.
AND, if I permitted the surgery Bea would be kicked out of the clinical trial at Pittsburgh. That, and no steroids either. I explained this to the doctor but he was pushy with regards to the diagnosis and seemed to think I was making a big mistake. I overheard him discussing the case in the hallway with his superior. He was not happy that I was keeping him from the surgery that he thought was so important.
Guess what? We stayed overnight and it turns out that she did NOT have hydrosephalus. She had an ear infection. I could tell she was tired, not floppy. Meaning, she had control over her body. If she had hydrosephalus her motor skills would be diminished. Not the case. She was just exhausted from the infection.
If any of you are DIPG parents... read this. The symptoms for an ear infection - loss of balance, nauseau, irritability, fatigue, disorientation - are also the symptoms of hydrosephalus. But, this arrogant surgeon couldn't see it. They did a second CAT scan her second day at the hospital and it was the same as the day before, the signal that she did NOT have hydrosephalus.
So, Bea got released from the hospital after one night. 45 minutes later, on our way back to my mom's house, they called and wanted Bea to come back because the first ER found a contaminant in her bloodstream. I refused to go back and said we'd have to arrange something else. They thought it could be a staph or strep infection (blood strep, not the throat one we all fear). Or, it could be that a contaminant accidentally got in when they took blood. My fear was that they would admit her to the hospital again and I knew she didn't need that.
We agreed that Bea would go to a local ER to get an antibiotic shot in the tuckus just in case. We did that for 2 days. The first day went smoothly. The second day brought a host of confused doctors who, again, focused on the cancer and didn't seem to understand that we were there for the antibiotic and that was all.
It turns out that she either has no infection because it was an outside contaminant from the ER nurse OR that she has a rare blood infection that only a small percentage of chemo patients get. Bea did not have chemo.
Even so they want her on antibiotics for the next week. Just in case.
All said, Bea was admitted to the hospital 4 times in 3 days at $125 a pop. That's $600 to treat an ear infection. And, that doesn't include the $125 for 2 medications I had to purchase, one of which it turns out she doesn't need. And, there could be bills for what was done in the hospital that AETNA does not cover entirely. We'll have to wait and see over the next few months. With regards to this, thanks to all of you have donated $$ for Bea. Those donations will help us out with these costs.
Anyway, what a nightmare. UPDATE: And now because of the antibiotics she had Bea has thrush, a painful fungus that grows on the tongue when you receive heavy antibiotics. So, thanks to those 2 shots Bea can't eat much. Great.
Parents... when it comes to your kids and doctors do NOT be bullied into taking action you know in your gut is not needed. Get a second opinion. Do NOT be intimidated by the uniform. If I didn't stand up for Bea we would be at CHOP right now and she'd have a tube in her brain. We would have weeks of physical therapy ahead of us. We would not be home in Atlanta. I would have had to quit my job or get fired because I already used up my FMLA leave for the year. Her dad would be separated from us in Atlanta. And, we would have lost the one hope we have for her... the vaccine trial in Pittsburgh.
How could I have lived with that decision? Especially, seeing that she's 100% back to normal today. No fever. Lots of energy. No earache. Good appetite. She's busy being Bea!