AFP.... 2.6

We just got her AFP results back from her Friday Surgery. 2.6. AWESOME! We are a little concerned as we found some blood in her stool Friday night and her incision area is red. We called both the on-call oncologist and the surgeon and they want us to keep an eye on the incision. They think its probably nothing. The oncologist wants us to mention the blood to our normal oncologist in our monthly appointment Friday 11/14. For now... We're happy. Another super low AFP. - April

Closure!

Ashley's surgery was uneventful today. Just the way we like it. Taking out the port took 15 minutes and other than a little accidental scrape on her neck from a clip they use on the surgical paper, she came out great! They went into the same incision they made when they first inserted the port.


Then the hearing test came. I'm happy to announce that she does some have some high frequency loss, its most likely not at the conversational level. They want to continue to monitor her hearing every 3 months but not under sedation, rather just the normal hearing "behavioral" type tests. WHEW! I like that there's no more surgery. And Tony and I can't tell you how good it felt to hear the Audiologist say that "she doesn't need amplification" i.e. hearing aids.

Here is a photo of Ashley being handed off to her two anastesiologists. Look at how small the one Doc is? I bet he weighed 100 pounds max. This is only the 2nd time I've ever handed her off to a doc and they took her away. Normally I go into the OR with her and help them with sedation. As you can see in this photo, Ashley had just fallen asleep on her own. If you catch her in her first 10 minutes of sleep... even a freight train can't wake her. A MAJOR victory for us today.



We're home and very happy. We started this journey on a Friday night at 5 pm in May 2008. And at 5 pm on a Friday in November 2008 we have closure. Yahoo. Next steps... Next Friday we find out what her AFP level is and her final Pendamadine med will be given. AFP is the tumor marker in the blood for Hepatoblastoma. We want it under 12. Last time in Sept. it was 2.1. - April

11/7 Port Removal Surgery and Hearing test

Friday 11/7 is Ashley's final surgery. Port removal. They'll take the port out of her chest. YAHOO! They'll also administer a hearing test to see if she's lost hearing, just how much she's lost. We're excited to finally get her port out. Its a HUGE milestone and will provide much needed closure to this ordeal. Here are some recent photo's. - April

URG! Her temp is 102.3

Ashley spiked a fever this morning. Because she still has her port in, we have to get to the hospital this morning. I'm sure she'll be just fine, just normal fall cold season. But they have to be extra cautious because the port in her chest goes right into a main vein to her heart. I just temped her again and she's down to 100.3. But she's asleep. Usually your temp drops when you sleep. We'll keep you posted. - April

CT, all clear! AFP 2.1

We get to schedule taking out her port. THIS is a HUGE milestone. The doctors get really excited when they talk about taking out a port, its REALLY GREAT NEWS! She's officially done with all treatments and we won't need to sedate her until they take her port out. They'll also administer a BAER hearing test to see how much hearing she's lost. The doctor said it would be unusual for her to have lost conversational hearing with 4 rounds of chemo but Audiology wants to make sure if she does have loss, they catch it quickly. If she does have some, it should only be high frequency loss i.e. pf, s, th, k, type sounds. We've got our fingers crossed. - April

Fundraiser Oct.11 2008 in Poulsbo for Hepatoblastoma

There is a fundraiser in Poulsbo WA on Oct 11th for Hepatoblastoma. It turns out, not only does Ashley oops... did Ashley have this cancer, but also a close family friend too. Montana Swift is a little girl in Poulsbo WA who survived stage 4 hepatoblastoma. She's 2 years cancer free. Her family and many other parents of Hepatoblastoma survivors have started a Hepatoblastoma foundation.

There is a live Auction and Dinner this Saturday Oct. 11. Here is a poster if anyone is interested in going. If you double click on the poster image, a larger version will come onto your screen. I don't think I can convince Tony to haul both girls on a Sat Night on a ferry but I'll try. Tickets are $75 each and all money raised goes to CureSearch - National Childhood Cancer Foundation. Tickets are available by phone at 360-434-1051. It is at the Kiana Lodge.

Its odd to find someone so close to our family also touched by this disease. I'm happy they have a success story as well.

CT scan... Done. WHEW!

The easiest CT we've ever had. Ashley woke at 7 am and by 10:45 am fell asleep in my arms in just 3 seconds. Whew! They actually sedated her while she was asleep. They used a gas mask and she woke for about 10 seconds but in 5 more seconds was completely out.

So we started at 7:45 am and by 8:45 she actually drank about 2 ounces of this oral contrast solution (mixed with apple juice). She discovered apple juice just 2 days ago so we're so happy that she was able to drink the contrast. NG tube avoided again. Then we have to wait 2 hours for the solution to get to her intestines so we played outside and inside the hopsital.

At 10:45 they called us for our sedation and as I wrote above, she was already asleep. Whew! THe CT took a little longer than we expected because they had to access her port, draw labs, flush her port with heparin then scan her. During the scan they flipped her to her tummy to get a really good look at the lungs. This had us a little nervous as they've never done it before. But the Doc said they do it sometimes because during sedation babies don't take deep breaths. When they don't take deep breaths, its hard to get a good scan unless you flip them onto the tummy. Whew!!! We get the results next Fri. CT and blood work results.

Thursday was Ashley's hearing test and they are concerned that she's lost some high frequency hearing at the normal conversational level, however because of her age she falls into this "black hole" of hearing testing and they want to do a BAER test under full sedation. We personally don't think she's lost any conversational level of hearing, rather she just choose not to respond to the test. So we're going to figure out when we can do the 1.5 hour fully sedated hearing test, hopefully they can do it when they sedate her for port removal surgery.

Photo's are from the CT scan today. Tony helping Ashley drink the contrast solution, Ashley and I playing outside at Children's, and Ashley still asleep after her CT scan. -- April