Thursday, September 25, 2008

Doing Normal Things takes on new meaning...

We get to do normal things. You have no idea how great this feels. We don't have to worry about an immune system, we don't have to keep Ashley inside at our own home. This means Whitney can do things too. We were so excited, we took them to the Children's Museum in Factoria and afterwards we went to Old Country Buffet. The girls LOVED it. It felt so great to not have to break out the Purell every 10 minutes. Although I still catch myself turning my head to find out where the slightest sniffle, sneeze or cough came from. That is one thing I'll never forget. Each time we went to Children's Hospital Oncology Clinic, if anyone sneezed, blew their nose or coughed everyone in the waiting room turned their head to see who was sneezing. A "cover that cough, sneeze" look sufficed. This habit that will take some time to break.

Did I mention Tony and Whitney got a cold this week. I don't know how Ashley and I stayed healthy. I swear breastfeeding has kept her immune system alive and thriving through out all of this. I think breastfeeding must hyper activate my immune system too. All the more reason to continue. We believe it could have helped save her life.

Now that we're feeling fairly confident Ashley has beat this thing, life is normal. I have to break out my "how to begin disciplining a 21 month old". She's just about ready to learn about the naughty corner. She definitely needs to learn about touching gently. Please send your advice.

Photo's of the girls at the Museum and Ashley and school on her first day. Its hard to tell but her eyelashes and eyebrows are growing back.

Monday, September 15, 2008

6.9 oops 6.7 AFP thats all I have to say!!! Happy tears!

Teacher Betsy... we're comming to school. Feel free to share our blog. We're so happy. We don't go back to Children's for 1 month. We're so happy. Ashley's going to be okay!!!!!

The nurse just called back. Its actually 6.7 not 6.9 even better. We now get to schedule taking her port out. Yeah!!!!! - Apri

Thursday, September 11, 2008

A Big Day Friday Sept 12th

Tomorrow is a big day. Ashley has her big AFP blood test. They'll also check her white counts to see if she's safe to start school next week. Lastly they'll administer pentamadine. Its a med that will prevent a fatal lung infection if Ashley gets exposed to a specific cold virus. They'll need to access her port and flush it with heparin to prevent clotting. I guess that's what they have to do 1 time a month when your port is inside your chest still. So we've decided to not get her AFP results until Monday. It takes 24 hours to process them anyway. Besides, if its bad news... let us have one more good weekend first. So here is our current stage of treatment...

Monitoring phase. 1x a month we get blood work for AFP, 1x every 3 months we have a CT scan. Lastly, we must do Pentamadine for 3 months after chemo is over. If all are clear and normal this continues for 1 year. That is as far ahead as we can think of for now. Let us just make it to Christmas and not have a bad CT or AFP.

We hope her AFP is below 60 this Friday. That would feed the speculation that her AFP rise is due to Liver Regeneration and not a new tumor. If its above 60... I don't even want to think about it.
Here are some recent photo's. We'll post an update when we have news. Maybe tomorrow afternoon but we won't post AFP until Mon. - April
Photo's are of Whitney's 1st day of school last Mon. New island Tony built and Ashley putting the steth where it belongs.

Friday, September 5, 2008

Another Rollercoaster Ride...

Whew! Wednesday night while Ashley was sleeping I felt her tummy and noticed her left rib cage was asymmetrical to her right. I had noticed this weeks prior but thought it was nothing and decided to keep an eye on it. Well this time it felt "significantly" more elevated than her right so I had Tony feel it. He agreed and we called the Oncology Fellow at 11:30 pm. The doc said we could come to see a doc but didn't think an ER visit was necessary. So I didn't sleep all night. The thought of cancer coming back got the best of both Tony and I. To make matters worse, Tony had to be in Olympia to testify in a court case and couldn't come with me to the doc. Poor Tony wouldn't be able to hear the news on Ashley until after 5 pm on Thursday. I can't imagine how difficult it must have been to sit on the witness stand and have to testify all the while your wondering if your daughter's cancer is back. I bet that took 10 years off his life. I feel so bad for him. So... I saw the Doc at 1:30 and they didn't feel anything in her lungs or tummy. The doc said lets do an X-ray to ease your concerns. WHEW!!! A CLEAN X-RAY. The doc said sometimes after a liver surgery the muscles develop differently and that causes asymmetry. I am so happy. I can't begin to tell you the horrible thoughts that were running through my mind. Thoughts no one should ever have to have. So when Tony finally got the news he was driving in Rush Hour traffic home and he was so happy about rush hour traffic. He had just gotten some of the best news of his life so WHO CARES about a little rush hour traffic.

All was AWESOME in the Nakata household last night. Tony is finishing up with a remodeling project at the house and I'm just recovering from a back injury but I'm not afraid for Ashley's life today. Nope, not anymore. Tony took out a railing that separates our kitchen from reck room and added some kitchen cabinets and a new counter top. I'll post before and after photo's when its 100% done. But ITS AWESOME! Life is getting back to normal. Halloween is coming up and last years costumes still fit the girls. So we'll have a cat and mouse again this year. - April
Here is Ashley trying to figure out what that thing is inbetween her legs, and the girls flying high in the sky. Enjoy!