Flu Shots

Whitney was complaining she hurt her left arm at school's 1st recess today. I was surprised she didn't tell the teacher or anyone about it. She was holding her arm straight out and wouldn't use it for over an hour after she got home from school. So... off to the doctor. At first they thought she broke a bone but... after a few fun filled tests, everything was okay. She hurt her arm but it would just be fine in a few hours. So... we went home after each child got their flu shot.

In a couple weeks... H1N1 flu shots. They did just GREAT with the flu shot. They didn't like it, but neither would I. After about 10 seconds of crying, they were examining the cool metallic reflective band aids.

Lots of medical things

Ashley and Whitney had medical appointments today. But this last week Ashley had her oral follow up, her Oncologist visit, labs, and... her immunizations. Whitney had her 5 year well child exam.

Ashley has been given a clean bill of health and her oncologist expects her to be fully recovered from her cancer and she'll live a normal life. She has graduated to 6 month CT's and Provider visits and just to make me feel comfortable, her oncologist said I can come in every 3 months for blood work i.e. AFP marker. Otherwise she really doen't need an AFP for every 6 months also. She's officially graduated from her cancer. Just 4 more years and she'll be considered "cured".

Her oral surgery a couple weeks ago went GREAT. Her two front teeth got caps and they put a sealant on her teeth to prevent cavities. She also had two small cavities filled on her second top teeth. They were small. At our dental follow up visit on Monday this week, the dentist wants her to change her diet and limit the starches. Startches turn into sugar and promote cavities. So dorito's, chips etc... out. Until she can brush (or we can brush) her teeth and really get in there, we have to control her diet, doctors orders. She should eat fruits, vegetables, protein. Limit juice to 6 oz a day and snacks should be of protein type like cheeses, beef jerky etc... All until we can really get in there and brush her teeth.

Both Whitney and Ashley got shots today. I'm amazed at these kids and their bravery. They did so well. 3 shots for each of them. It is a milestone as Ashley has not had any immunizations since January 2008 and was not allowed them due to her cancer. Now she is caught back up... Oncologists orders. So Ashley got Diphtheria, tetanus and pertussis, Haemophilus b, and pneumococcal conjugate. Whitney got chicken pox, MMR, and polio. Whitney officially doesn't need any immunizations till she's 11. YAHOO! Unless we decide she needs a flu shot.

Almost forgot. Ashley's AFP is 2.8. she's doing really well. The oncologist wants me to make sure I get a hearing test again, we're due and I'm hearing Ashley drop the "f" in the word Fish. It could be just normal, we'll have to find out.


April

Whew... AFP 1.8 today.

Yeah! 1.8 is the lowest AFP ever. I never posted last month's AFP... on April 23, 09 it was 3.2.
Today her AFP is just 1.8. NICE!

WHEW... that's all I have to say.

Whew! Yesterday was Ashley's quarterly CT and man... it was a breeze until we got our results. That new nodule that showed up in Jan had now grown from 2mm to 4mm. The doc's said they weren't worried, but we needed to wait the 24 hours for her AFP blood work to come back. Well... I just got the numbers and he AFP is 2.4. I cried tears of joy. CANCER SUCKS! I can't begin to tell you how hard living in the moment is when you have a loved one going through a medical crisis. The emotions that run through your body are indescribable. Sometimes all you can do is focus on the negative but then you get distracted and sucked into a TV show or some other responsibility. I'm learning to accept getting sucked into things... this is probably what my mind needs. For now... all danger is averted. We're in the clear for another month until our next blood work appointment. WHEW!!! Happy Easter to all of you. And give your loved ones a BIG HUG today and then throw in an extra squeeze just because you want to. - April

AFP 2.3

When they did Ashleys CT last week, they also did an AFP. (it was a mistake as they're only suppose to do them 1x a month). But I don't mind, especially when the number is 2.3 YAHOO!

CT Clear.

As expected Ashley's CT was clear. There was a new nodule on her lung however they said it was just "compression". I guess when your sedated your lungs can make little marks on the CT image and they aren't anything. She now has 2 of these. One was new but the other has been there since her diagnosis back in May. It has not changed in size so no worries said the doc's. Still... I get so nervous for CT's. It takes an army to prepare for them. Fasting, no breastfeeding, forcing her to drink this contrast solution, keeping her occupied while we wait for the contrast solution to reach her intestines... its really hard. Ashley managed to fall asleep in my arms 5 minutes before the Anasthesiolgist came to get her. This made it really easy to put her on the CT machine and she didn't wake up when I laid her down. The doc held the gas to her face for about 5 minutes and then... she was "out". The scan took 5 minutes and then she woke up 30 minutes later. She's my hero. She's such a champ. She barely even gets scared of the doc's anymore. And if she does... she's okay in just a few seconds. I like to think she gets that personality trait from me... I too can easily just brush things off and move on to the next thing. Its a great trait.
Next visit will be in 1 month. I'll post more then if not before.
April

CT scheduled for Friday 1/30/09

Ashley has her quarterly CT this Friday. Hopefully it will be just fine. Her AFP 2 weeks ago was normal so this should be a clean scan. But we always get nervous before any medical visit. Also, we'll find out what the Oncologist thinks about her iron levels. We've been giving her oral iron supplements for about 2 months now. I guess the chemo she had can cause your iron levels to be pretty low.

Keep you fingers crossed that her chest cold and coughing are gone by this Thursday so she can have her CT on Fri. I don't want to schedule it again. Its hard to keep rescheduling. CT's are hard for us because she has to fast... and because she's still breastfeeding... fasting is REALLY difficult when the food supply is right in front of her everytime I pick her up. We're taking she and Whitney to the dentist tomorrow (tues) for their first visit. Hopefully Ashley's teeth are okay. We're concerned about their coloring and think it might be time to ween her. But the coloring may be due to the chemo. We'll find out tomorrow.

April

AFP 3.0 YEAH!

We had a CT scan scheduled for Fri., but Ashley developed a chest cold earlier in the week. We decided to cancel the CT because with Anastheisa a chest cold can develop into pneumonia. We went ahead and had her finger poked for her AFP blood test. This was the worst visit Ashley ever had. She is talking now so she kept saying "Ow" the entire finger poke time. Even when it wasn't being poked she kept saying "Ow". She was crying like crazy which was great because it helped her clear her chest congestion.

So her AFP is 3.0. We're all happy at the Nakata's houshold this weekend. We've rescheduled the CT for 1/30/09.

April

Happy Birthday to you!

We are so happy that we got to see Ashley turn 2 years old. Back on May 9, 2008... we didn't know what the future would bring. One of the first questions we had for our oncologist was "Are we going to get to go to Hawaii for christmas?" Her reply "Christmas is a long ways away." Not only did we get to go to Hawaii but be got to see Ashley turn 2 years old. We're very lucky. Not many people travel down the road of starring the end of life in the face but we did and we're very fortunate to come out on the happy side of that vision. We appreciate everything so much more. Happy New Year to everyone. We believe 2009 will be an amazing year and we're very happy to say goodbye to a historic year for our country but a very emotional year for our family.

April

AFP is 3.2 anything below 12 is normal

I'll take 3.2, anything below 12 is normal. I'll post more later after our Doc visit at 4 pm.
April

Blood work appointment and clinic visit...

Sorry its been so long since my last update. No news is good news right!!!! Today I bring Ashley in for her monthly blood work appointment. They'll check her AFP level. That is the cancer marker. Last time it was 2.6 (I think). Lets hope its low again. Anything under 12 is normal but I want it below 3. That would make my anxiety go away for another month. I'll post the results sometime in the next 2 days as it takes 24 hours for the results.

Also, Jan 16 is Ashleys quarterly CT scan. I'll update the site again after that.

Have an AMAZING holiday. I know there are many people who follow this blog but don't necessarily post. We thank each and everyone of you for thinking of our family this past year. This blog been an emotional support network for Tony and myself. Please live these holiday's to the fullest and remember those who are less fortunate. Remember to give those kiddo's an extra tight hug before bed. I know we'll be celebrating this Christmas with an especially warm heart. We have a lot to be thankful for. Happy Holiday's to each and everyone of you.

April

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

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.

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