Saturday, July 21, 2012

One Step Backwards and a Half Step Forwards

So, good news... Bea got sent home last night with no surgery. Her oncologist and neurosurgeon agreed that she does have hydrosephalus but it is very, very mild and it appears that her body is taking care of it. It's at a level where steroids can be used to reduce swelling but where surgery is not necessary.

Bea is going to have a follow up consultation with both doctors on Monday. It's possible that things could worsen and she'll still need the procedure. But, of course, our hope is that this won't be needed.

So, that's half a step forward.

The area of concern is still about whether a new growth is cancer or super spectacular T-cells doing their business. Based on the Pittsburgh trial doctor's synopsis of the visit on Thursday the cancer area has grown but it's impossible to tell if the growth is good or bad.

Bea's oncologist in Atlanta indicated that the trial doctor suspects it is the good stuff but I'm not gonna get all excited about that. The emotional roller coaster (excuse the cliche) that this causes for a parent can tend to flatten inconclusive news. I need real proof these days before I get excited and write that classic "Wahoo". I hope to "Wahoo" soon.

Friday, July 20, 2012

One Step Backwards

I wish I had good news to post again but, unfortunately, that's not the case. It's been a breezy 5 months all considering and a few backslides were bound to happen.

Bea has hydrosephalus, also known as "water on the brain". She started exhibiting worrisome symptoms early this week. We were at the shore with my family and Bea couldn't walk for any real length, was falling a lot, could not change direction easily and said that her right hand was feeling a bit numb. She was also getting more headaches than usual. This all happened very quickly.

Bea and her dad went to Pittsburgh for her 6th treatment on Thursday. An extensive MRI was done and it revealed two things. First, she has hydrosephalus and it has to be treated today. Second, there is an area in her brain that is showing either a new growth of cancer OR an area where her T-cells are attacking the cancer. If it's the latter that's really good news because the vaccine is working. But, it's impossible to tell right now.

So, the bad news is that her participation in the trial has been suspended. She got no vaccine yesterday. The good news is that she's still in it and will be returning on August 13 for another analysis.

But... the big bad news is that Bea will be admitted to Scottish Rite Hospital today and will have to endure a minor surgery to treat the hydrosephalus. She doesn't know this yet and hates being in the hospital. I know she's gonna flip out when we get there and she realizes that she's not leaving right away.

I'll post details on what's going on as soon as I can.

Saturday, July 7, 2012

Two Teeth

We drove from Atlanta to Philadelphia on June 22/23. Beatrice had 2 loose teeth and thought they might fall out soon. She brought her tooth pillow just in case the big event happened while we were away. The tooth fairy had to find her, of course!

A few hours into our trip the first tooth fell out. Within an hour the second was gone. That's 2 teeth in an hour!

Beatrice had also made some drawings for the tooth fairy that we put in her pillow. Her hope was that the fairy would give her more cash if there was a drawing AND a tooth. Very entrepreneurial of her. And, she was rewarded.

She's looking for exactly the right toy for her $20. Any suggestions?

Thursday, July 5, 2012

What a Week / Overzealous Doctors

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!