Wednesday, May 19, 2010

May update

Today was Emily's monthly trip to the hospital.

Today included a EKG and ECHOgram tests. One of the medications she was on causes heart damage in some people, in fact in some people the damage is so profound and immediate that they have to discontinue therapy with that drug. In Emily's case they did scans of her heart when she was diagnosed, and then again after she had the course of medication and in her case they didn't detect any damage. They are also using a new genetic test, where they swab the mouth of the patient, and can predict if doxyrubicin will cause damage. Emily "passed" that genetic test, so we aren't all too worried that we will hear there is damage. We don't have results from cardiology just yet.

After the stop at Cardiology it was time to go to our home base, Oncology. I hadn't been to the clinic in over two months but it was pretty much the same, full of happy kids and worried parents. seriously that's pretty much what you see in there, kids coping with their disease but more excited to play or watch a movie, and parents who look scared and worried. Emily had her vitals taken and blood drawn. After that it was time for lunch and then her physical exam.

In the exam we found a surprise, Emily had an ear infection. She had a slight fever over the weekend and the ear infection is most likely the reason why. It was actually nice to have something to link to the fever. She is now on a very high dose of amoxicillian, in fact so high the pharmacist called to check.

The rest of the exam went perfectly. The clinic already had the lab results, and her blood looks great. The levels that should be rebounding are doing so, and they see nothing that concerns them.

Next month will be another exam, labs, and they will do a chest Xray.

All in all great news today, except the little ear infection of course.

Monday, May 3, 2010

Learning to live without Doctors.

I haven't updated the blog in a very very long time. To the point where I actually missed the blog and wanted to update it. Having the blog was helpful on so many levels during Emily's treatment. It was a way to communicate status in an easy way, it was a great record of what actually happened over the two years, and most importantly it was an incredible outlet of my emotions and feelings along the way. It was also a good ice breaker with friends and people at work, they didn't have to ask me what was going on with Emily, rather they could comfort me (if they wanted to) or at least be supportive knowing what I was dealing with at home. But now that I am trying to transition into a more "normal" life I don't feel the need to update the blog as often.

So, what's been going on since I last updated the blog? We went on our trip and cruise. It was a really really great time. We stayed at Disney World at the Animal Kingdom Lodge. We got a savanna view room which was a real treat. At about 10pm at night we were sitting on our verandah and a giraffe wandered by, then a few minutes later a zebra. The kids were loving it. We also spent a day at Disney World. It was a really good time, the kids had a blast. I decided to use Emily's illness one last time and got a card that allowed us to skip all lines for rides. We rode everything we wanted. I think the hi-light was Haley going on the Log Ride and loving it. She was just barely 40 inches tall which is the cutoff so they let her on. We had a really fun time that day.

The next morning it was time for the cruise. Disney has everything planned out really well. You check into the cruise from your hotel room at Disney World. They take your bags in the morning, and you just have to pack a backpack for the ride over to the ship. when you get to the ship, your bags are outside your room. The whole cruise was just incredible. It greatly exceeded my expectations for fun, and ease of family travel. Maybe the best day was the day we spent at Castaway Cay, an island Disney owns in the Bahamas. The weather was perfect, the beach was perfect, and was really just a great day. To be sitting there on a beach chair in about 4 inches of water, with a drink in my hands, watching the girls go crazy in the blue water was pretty heavenly. To think what we had been through.....well to be honest I didn't think what we had been through I just enjoyed the perfect moment.

The whole trip was great and there's just too much detail to put here but we had a blast.

When we got home Emily got sick. It was stressful, she developed a cough a pretty bad one. Given that her original diagnosis was a collapsed lung with a mass in her chest, it's hard not to "go there" when she has symptoms like that. We called the Oncologists to report the symptoms. the first two calls they confirmed that what they were hearing on the phone didn't sound like anything they would be concerned about. Finally on the third call and my insistence they had Emily come in for an exam. and sure enough it was probably a virus. They did test her blood since they had her in the office and her WBC was low, and her ANC was low, both signs of a virus. They told us that if her ANC had been REALLY high they may have been concerned but since it was low it was a sign for sure that nothing unusual is up. Sure enough she is slowly getting over her cold. the rest of the family has it now too. This story illustrates how the next several months will be. Any possible sign of symptom Tracy and I, mostly I, will stress and obsess about. The Oncologists were very nice about giving her an exam, and keep telling us they know this is a very stressful moment in therapy. they didn't tease us or give us a bad time about having to bring her in to be sure. But we need to learn to live without a doctor on call 24/7. It's harder to do than you might think.

Lastly we have been very involved with the Leukemia and Lymphoma society, both the Man and WOman of the Year campaign and now the Light the Night Campaign. There have been several articles in the San Jose Mercury about Emily and our involvement.