Isabella Went to School Today

I am happy to report that Isabella went to school today for the first time in a week!  Because of the steroids, she does have problems falling asleep at night, and because of that she was an hour late to school.  We fully expected her to be super tired and only spend an hour or two at school, but we were surprised to see her make it through the whole day.  The only oddity is that with her increased appetite (again, because of the steroids), she was hungry at the end of the school day despite eating a full lunch.

We have begun lowering her doses of the steroids, but I have heard that they need to be tapered anywhere from a couple more weeks to a couple more months.  If you’ve ever seen chubby cancer patients, you’ll know it’s because of the steroids.

So we continue to watch Isabella closely, probably to the point that it’ll drive us (and her) mad.  She hasn’t complained of any more headaches, but there are some signs of weaknesses.  I should tell myself to not go too crazy looking at every little thing otherwise I will go crazy.

Two (Actually Three) Big Favors

I’ve got three big favors to ask of you.  I normally don’t like to mix politics with this blog, but in this case I need to.

I previously wrote about a bill in Congress called the “Creating Hope Act”.  This bill is designed to provide incentives for researchers and pharmaceuticals to develop more effective treatments for pediatric cancers.  I also previously wrote about how woefully underfunded children’s cancers are compared to other cancers.  The National Cancer Institute provides less than 3% of their budget to children while the American Cancer Society provides less than 1 %.  Treatment for children need to trickle down after years of testing on adults, and aren’t even that effective since children’s cancers are very different from adult cancers.  It’s a shame that our children suffer because they don’t have a large voice in Washington DC.

So the first favor I ask is to follow this link below and fill out your information.  The website will prepopulate some forms and address them directly to your congressmen and senators.  It shouldn’t take more than two minutes and you don’t have to lick any yucky stamps:

Creating Hope Act Letter

The White House has setup an online petition web site where people can submit topics that they feel are important.  If the petition gets 5,000 signatures, White House staff review the petition and send it to policy experts.  Someone has created an online petition for the government to allocate more funds to better treat childhood cancers.

So my second favor is for you to sign the petition below.  (You can look for me, I am signature #2385!)

Keep Kids Alive Petition

And my third and final favor I ask is for you to share these links with all your friends whether it be via Facebook or Twitter or E-mail or another blog.  I don’t have a great deal of confidence that either will do any good, but it does sort of help ease this smothering feeling of helplessness that overcomes us.

Thank you.

Home Sweet Home

After four harrowing days in the hospital, we finally have Isabella back home.  Early last week, Isabella started complaining of some headaches and we noticed other signs of neurological issues.  An MRI showed that her brain tumor is growing and is causing bleeding in her head.  This bleeding plus tumor growth was causing severe pressure in her head which was causing her symptoms.  We were immediately admitted to the hospital where Isabella was given steroids.  Isabella looked so bad on Thursday that we were making plans to have family come in to say their last goodbyes and we had a priest come in to give last rites.

Fortunately, the steroids successfully relieved the pressure in Isabella’s head, and some of her symptoms subsided and she started to feel better.  The steroids don’t “fix” the tumor growth or the bleeding, but at least it helps Isabella feel better (as well as increasing her appetite!).

On behalf of our family, I’d like to thank everyone who showed their support and spread the word about Isabella.  It has been a terribly stressful few days (and we have many more to come), but it was kinda nice to see family, friends, and even strangers rally around our little girl.  I know I’ve been saying this for almost three years, but it is incredibly humbling.

Thanks again for joining us on our journey.  Here are a few pictures from our trip home today.

While we were waiting to be discharged, Isabella wears a crown and waves a wand that she made during an arts and crafts activity.

Amazingly, Isabella was so excited to go home that she walked part of the way to the train station.  Incredible considering that on Wednesday and Thursday, she couldn’t even stand up on her own.

When we finally got home, Isabella chilled in her chair and enjoyed the 80 degree weather of our Indian Summer.

What better way to celebrate being home than with some S’mores!

Quiet Sunday - Heading Home?

Today was a quiet, restful Sunday, especially compared with the commotion from yesterday's visitors. Isabella's appetite is certainly picking up because of the steroids. Last night at midnight, she finished off the other half of a slice of pizza. At 7am this morning, she woke up and asked for more pizza. I ran out to four different pizza spots and none of them were serving before 11am. Instead, I brought back a hash brown which seemed to satisfy Isabella. Until 11am, when she asked for the pizza that she was craving.

She also has not been having the headaches as frequently as the previous days. We had been giving her Tylenol every four hours around the clock to prevent any headaches. In the afternoon, since she hadn't complained of a headache in a while, we decided to stop the Tylenol until she has another headache, and so far so good. We did notice that her speaking was a tick down today, but we are hoping it is only because she is so tired from yesterday. But she is still a hundred percent better than she was when we brought her in. At that time, we were planning to have people visit to say goodbyes. On Friday, we actually had a priest come by to administer last rites.

Our doctor also stopped by and noticed how well Isabella was doing and mentioned that we will probably be able to go home tomorrow (on Monday), as long as there is no drastic change for the worse. As I mentioned before, we'll be tapering off the steroids over the course of the next couple weeks or so, and thankfully we'll be able to do that from home.

We are still unsure about the possibility of upcoming treatments. Because of the bleeding in Isabella's brain, we can't do any chemotherapy since the chemo affects the blood counts. In particular, chemo suppresses the platelets, which is the blood component that stops bleeding. We would have been in serious trouble if Isabella had low platelets while having a bleed in her brain. So for now, we hope that the bleeding in her brain subsides and that the tumor growth does not put additional pressure or cause additional bleeding. Although this immediate crisis seems to be stable for now, we're not completely out of the woods yet, because if we can't control the bleeding or the tumor growth, the pressure will eventually kill her. We also hope that we don't get the "we've done all we could" speech from our doctor.

We'll worry about that then, I guess. For now, we all can't wait to get home.