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?

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!

Fun for the Summer

Bea is going to camp at the Primrose School, the same place where Lewis is going to Preschool and PreK. She has been attending for about a week and has already gone on 2 field trips - to the Art Barn and to the local Fireman's Museum. The school director has sent me a few photos that I thought I'd share.

Family Photos

Some weeks ago a professional photographer came to our home to take shots of the family. Here's some of my favorites. They're in no order and have no captions. I don't really see the need.

Milestone for Bea

I just put Bea on the bus for her last day of kindergarden. This is a huge day for every child - both the first and last day of their first year at official gradeschool. But, for Bea, this is especially significant that she has survived and is healthy through her last day of school.

To her it's a special day of popcorn and movies and a water balloon fight is waiting for her at the bus stop when she gets home. For me, it's one stop in a monumental journey that shows me just how strong a little person she is.

Keep going, Bea. You're living an amazing life.

Bea the Designer!

Beatrice has taken a liking to design lately. Funny how a parent's work can have such an influence. Even as a 6-year-old she understands the difference between design and art. She knows what an icon is and how it's different from a drawing. Every day she amazes me with just how darn smart she is.

So, just like I did back in January with selling Bea's art I thought about how to can Bea do design for sale? I'd heard about a site called Zazzle, checked it out and decided that it provided exactly what we needed. An easy way to design product with Bea's artwork (and mine, too!)

So, Beatrice and I have worked on some lovely product designs to sell on http://www.zazzle.com/craftygraphics. The sale of each will garner us a royalty. Clicking on any of the ad banners in this blog (to the right) can also garner a 15% royalty for us if a sale results. The goal of any profits we make is to help pay for amazing activities for Bea and the family this summer and fall. These activities include local trips to Savannah, St. Simon and Chattanooga.

We are also planning to use sales from this Zazzle shop to help pay for a new back garden. We have some money saved but it's not quite enough to make it happen. Our yard is a wreck and the hope is to give Bea as much outdoor time as possible to keep her strong and healthy. And, Bea would like her own garden to plan flowers and vegetables, too.


See other gifts available on Zazzle.

Third Time Around

Bea had her third treatment as Pittsburgh last Monday. Her tolerance for the vaccine was great on the day and she's had no noticable bruising at the injection site. Considering how deep this injection is the fact that she doesn't get a big bruise is pretty amazing. But, this time around Bea has complained about bad headaches. She was fine the day after but she has had a headache every day since. She hasn't had a headache in weeks and weeks. Tylenol gets rid of it quickly but I still don't like that she's getting them.

There are all kinds of reasons outside of the vaccine for her headaches right now. Bea has a cold and heavy cough and the cough bothers her head. It's getting hot in Georgia and she forgets to drink, especially at school. She had a class trip at a local nature center and then a field day last week. Not on the same day but back to back. I know she didn't drink as much as she should have because she never does. But, the headaches are a still cause for concern. I can't talk myself out of knowing that it could be the vaccine. That wouldn't be responsible.

The headaches can be a sign that the vaccine is causing swelling in her brain. There can are additional symptoms similar to what happened to her in December. I haven't seen them but am keeping watch for them. That has made life a bit more stressful over the past week but these are the ups and downs I'd been warned about. Day in and day out, week in and week out and month in and month out I'm riding them as best I can. My goal is to hit that ride into year in and year out.