Friday, December 12, 2008

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

Thursday, December 11, 2008

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

Sunday, November 9, 2008

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

Friday, November 7, 2008

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

Tuesday, October 28, 2008

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

Friday, October 17, 2008

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

Saturday, October 11, 2008

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

Tuesday, October 7, 2008

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.

Friday, October 3, 2008

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




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!

Saturday, August 30, 2008

Just some new photo's



We didn't need a blood transfusion at all through out Ashley's chemo. That is a BIG DEAL. Here are some recent photo's. Susan from my playgroup donated this Elmo chair, the girls LOVE Elmo. - Thank you Susan. -April

Friday, August 22, 2008

Something to hope for!

We met with the doctors today (Friday). They told us not to worry about her AFP number. It was probably a mistake to do the test. (We insisted on it) The main reason being that there really isn't anything they can do if it is 25. It is considered microscopic and we wouldn't be able to find it on a CAT scan or a PET scan. That it probably won't present itself until the number hits around 100.

They seemed pretty confident that it was liver regeneration at a number of 25. If it is around 60 to 100 it would probably be the cancer coming back.

They said that it would be very unusual (not impossible) but "very unusual" for the cancer to come back right in the midst of chemotherapy. "and good chemotherapy too"!

They told us that we shouldn't worry. Let them worry. But they know that is impossible.

But we feel better about it now. I would of been ecstatic if that number had been normal the last 2 times and not rising, but they think but won't promise or guarantee it, but that it is probably liver regeneration. So we will hope and pray for it to be liver regeneration. As I think back on it, her AFP fell so rapidly after surgery, and they got the tumor with clean margins there didn't seem to be any resistant tumor cells on the way down to normal. So how could anything make it through 2 more rounds of chemo. We won't test again till Sept 12th. They said that we have completed therapy!!! We would now go into monitoring mode. They even talked about taking out her port. We said we wanted to wait for a few good AFP #'s before we took it out.

Also she didn't have a urinary infection after all. Probably just joint pain or stomach cramping from the Vincristine. So some pretty positive news really! They even said we could delay the end of therapy Cat scan unless the AFP got above 60. So no CAT scan next week. Those CAT scans are miserable. You have to fast ASHLEY, then you have to get her to drink this contrast in an hour, then wait 2 hours to do the test. Not fun with a hungry, fussy baby. The next CAT scan will be in October then 3 months after, unless her AFP is high.

So if the next few AFP's come back normal or not too high, we will be back at the finish line on therapy!!! Unbelievable the roller coaster this takes you on!

Something to hope for!

Tony

Wednesday, August 20, 2008

A little bit about this blog

I want to let people know that this blog is something that April and I have used as a way to get news out, a way to vent about the situation, a way to ask for support from family and friends and survivors of hepatoblastoma or any cancer, we love the comments and e-mails, they move us in many ways.

I also want everyone to know that often times we are posting at a time that is really bad, but that it knocks us down to our knees for awhile, but, WE REGROUP! We are not in that state of mind the entire time until the next post, and often we are working on the next plan. The post is simply a moment in time in this battle. Often times a weak moment, but we are not in that mind set the entire time. We move on to the next hurdle and figure out a new strategy. This one is hard because we are in limbo. We don't know for sure if it coming back, or what the plan of therapy would be. But if it is we will have a plan.

Now when I got the news from the nurse, it was still a blow. She told me the number and I said "Oh no", "Oh no". I was driving to the Woodinville branch and I turned around and went home. I wanted to lie down and cry with April and we did for a moment. But Ashley picked up on it, and Whitney did too, so I said "We got to be strong in front of them!"

So we regrouped, we talked with the Doctors. They said that it still could be liver regeneration. It was too early to tell. We are focusing on that outcome but were still scared.

I called the father of another hepatoblastoma patient, who faced even more adversity. We asked how they got through it. They were told to do pallative care for their son. They didn't give up. They came to Children's in Seattle to get a second opinion. Their son is cancer free now for 2 years. We asked him if we needed to get a second opinion where would we go. Probably Pittsburgh. He said however that a second opinion wasn't needed and might not be needed. Only if they find a tumor that Children's in Seattle can't get.

This is still hard. It was a big setback to go back to square one when we were so close to the finish line. But we will fight until we exhaust every chance for a cure. If it comes back in the liver we will get it there, if it comes back in the lungs we will get it there, if it comes back anywhere we will get this damn thing! We will go to Pittsburgh, or London, or Australia or wherever we have to to beat this thing!

The other bad news we got was that Ashley has another urinary tract infection. But our collection method wasn't sanitary. April let Ashley walk around naked before her bath and managed to collect a mid-stream urine sample. It was a big victory for us today because the other collection method is this plastic bag that we have to stick on Ashley. She hates it, and it never catches the pee. We were excited about the urine sample, so we drove it to Children's tonight. Whitney fell asleep on the way back. We needed to culture this thing right away because Ashley's ANC would be falling here pretty soon so we need to treat it right away. She hasn't been sleeping very well the last few nights. She wakes up crying when she pees in her sleep.

The kids are asleep now, if we need to cry we can do it now.

Tony

AFP is Rising... bad news!

We received a major blow today. Ashley's AFP test was #24. When we began chemo round III it was 7.3, when we began what we thought was our last chemo her AFP was 13.9 and today just one week after Chemo IV her reading is 24.

This means her cancer is back or it probably never left and she's also become chemo resistent. The doctors haven't told us its back, but I'm just fearing the worst. The doctors said they just don't know yet and we have to wait and see. We'll schedule another CT scan as soon as her ANC levels are back to normal.

I can't begin to tell you what we're thinking. Its not good. I don't know what to do. We don't know if we should tell Whitney. We don't know if Whitney should stay with grandma for a few days while we sort through this in our heads. We don't know what to do.

Tony took Whitney and Ashley for a drive to get Ashley to fall asleep. I feel like a deflated balloon. My chest feels empty like I'm trying to catch my breath but I'm not breathing heavy like one would after running a race. My body feels limp. - April

Thursday, August 14, 2008

Three long weeks

So this is what the doctors told us this morning:

Obviously they don't like to see the AFP number rise out of the normal range.
They won't retest for three weeks, they want to wait for this last round of chemo to do it's work.
If there are cells that are chemo resistant than they would have to wait and see what her AFP number is. It has to be about 100 for them to find it on the CAT scan.

There is a margin of error in blood test, it could be up to 20% or so. I hope this is what it is.

I asked them what do we do if it comes back.

They said it will depend on where it comes back. Maybe more surgery. Maybe a liver transplant. If it is in the liver it sounds like the same chemo drugs won't work. If it is in the lungs a different set of chemo drugs could be used. It all depends on where it is.

We have recieved e-mails from other survivors and some say that their kids AFP's jumped around a bit also.

This is the mental grind that we will have to get used to as this AFP number will be very important for us for several years to come.

I just wish it had been under 12, in the normal range. With the last round of chemo behind us it would of felt like a celebration. As it was we were totally silent coming home.

Tony

I have to add my version of things. I'm scared also and try to hold on to the thought that AFP is just a range. Its so hard to think positive. Here are some photo's of us celebrating our "Last Chemo". Literally the alarm went off seconds before I took this photo signaling chemo meds were done. Ten minutes later we got the bad news on AFP. Its a roller coaster. - April

Wednesday, August 13, 2008

I'm scared again

This has been one rough stinking day. First of all her port got dislodged during chemo and Cisplatin was running out from under her tegaderm all over her body and April's. You should of seen the nurses scrambling. Putting on their gowns and masks and getting out the Chemo spill kit. We rushed Ashley to the bath and washed her off. The IV team came and I pulled her tegaderm and her port out. The needle flipping around trying to make sure nobody got pricked. Then the attending said that we didn't have any heparin in her port and it would clog if we didn't access it right away. So no time for any numbing agent. Just have to put that big needle into Ashley's chest without anything. She screamed, we cried.

Then we were out side and one of her IV lines comes undone. Have to redo all of the tubing.

But this is the big one that really scares me. Her AFP is climbing. It was 7.3. Anything under 12 is normal. It is now 13.9. No doctors around to really tell us anything till we retest tomorrow. I can tell once we got the labs that the nurse didn't want to say anything so she called the fellow. The fellow had to call the attending but it was 8:00pm. This is what I have feared the most. Who would ever think that 1.9 over normal would bring us back to the feeling in the first week. I hope to god it is some kind of margin of error thing but we don't know. It basically doubled. I hope that she isn't chemo resistant.

IF THERE ARE ANY SURVIVORS OF HEPATOBLASTOMA THAT ARE READING THIS AND HAVE HAD SIMILAR EXPERIENCES PLEASE POST ON THIS SITE. WE ARE SCARED AGAIN AND IT SUCKS.

Ashley is still awake, the dexamethasone if keeping her awake and she seems like she is going to vomit.

Tony

Sunday, August 10, 2008

It was a pretty good week considering...

Considering we have a child with cancer... oops I forgot, its gone; but we still have to do chemo on Wed. We have a little cancer patient who is getting hives from something. I don't know what. We can't figure it out. Food; we can't figure it out. She's been getting hives for a week now. They come and go. The doctors are not concerned unless he has a fever or her breathing is impacted.

This week has been so normal, other than the two blood appointments and the hives, its been normal. We took the boat to Lake Washington and Ashley loved it. We got to go FAST and she would open up the fingers on both hands and shake her hands in front of her face in the wind. She finally loved boating fast. Maybe because she just woke from a long nap.
I was so excited on Friday as I got to watch Whitney at her swimming lesson. I haven't seen Whitney at swimming lessons since April.

We received another generous and completely overwhelming gift today from all the relatives in Tony's family. Those on Bainbridge Island and those on the mainland. (Funny, saying mainland makes me think of when we're in Hawaii.) Here is a photo of the poster and all the packages people sent. I can't begin to tell you the chaos that followed when Whitney and Ashley tore into the packages. I've decided that my new role for the next 10 years might be "Referee". The gifts were amazing. TONS of stuff the girls love. And coffee, chocolate, cookies, grocery gift cards, clothing, Diet Coke, Dora toys, cash, books... the list goes on. It is truly overwhelming all of the support we've received from friends and family.

I remember back in May when Ashley was first diagnosed, we weren't sure if we should tell anyone. Tony wanted to but I was afraid. I guess I just didn't want to burden anyone with such horrible news. Knowing a loved one has cancer is a HUGE load to carry and having that loved one be your daughter is most unbelievably indescribable web of emotions. Its a lot to carry. But having told everyone and having this blog has helped our family so much. We hope we've helped you too. Everyone who has checked in with this blog I'm certain has been touched with deep thoughts and emotions they never knew before. I believe our family has done well because of the support from all of you. These gifts for us bring Joy to our chaotic life. Its so fun to see packages on our door step and watching the girls enjoy them is truly priceless. For all those gifts and for all these memories your helping to create for our family, we truly thank you from the bottom of our hearts. Okay, I'm crying now. - Lets hope for a good week of Chemo. Our last one. - April

Wednesday, August 6, 2008

Photo's of Ashley's Journey




Hi, I haven't ever posted photo's of Ashley in the hospital for her liver surgery. Maybe because we didn't want to take any. We just wanted to forget this situation. We took a couple of her liver resection surgery in May. Here they are. This is the only time I'll post them and the only reason I'm doing it is because this blog is such a great place to document things. Again, these are from her May 16th liver resection hospital stay. - April

Friday, August 1, 2008

Good News!

No Blood Transfussion. Her platelets and hematocrit are climbing so no transfussion today. You have no idea how happy I am for this news. Her ANC number is just 32. Basically, if she spikes a fever we have 1 hour to get to the Hospital and we'd be admitted until her fever dropped to normal. I'm trying to keep her healthy.

Her UTI is GONE! Yah!

No appointments till Mon. - See ya. Have a good weekend. - April

Wednesday, July 30, 2008

Just when I get happy... reality bites!

At Ashley's lab appointment today it was not so good news. Her ANC number (the one that tells if she has an immune system) is 141. Anything below 200 and she spikes a fever, we have 1 hour to get to the hospital. Oh I sure hope we've gotten rid of her UTI.

More bad news... her plateletts, these are the parts of blood that help blood clot, hers are 80. That is the lowest they've ever been. The doc's said they could drop as low as 20 by Friday and then we'll need a transfusion. I'm so bummed. I cried at her appointment. There is something about someone elses blood going into my little girl that really scares me. Who's blood is it? What type of person are they? What was their motivation to donate plateletts? Donating plateletts is not easy, its complicated. Much more complicated that donating blood, so why did they do it. Was their life touched by a horrible medical event? Are they homeless? Were they considered a "donor" upon passing away. Someday I want to donate plateletts. Why? Because not many people do it, plateletts are in high demand and maybe I can help someone live a longer more healthy life. Maybe my blood plateletts can save a life.

So I'll take Ashley back to Children's Friday morning and they'll check her urine to make sure the UTI has been taken care of. Then her blood counts will be checked again. If her plateletts are low, we'll have a transfussion on Friday. If her red blood cell counts are low, we'll probably have a red blood cell transfussion also. Whew! Thats a lot for a little girl in one day.

For now, I'm just trying to keep Ashley from getting any bruises. When your plateletts are low and you get a bruise, the bruise could bleed and not stop. She got a slight bump on her nose today and blood started coming but it clotted. Whew! Thats was before I knew her plateletts were so low. Now I'm extra anxious. I'm doing everything I can to keep this little girl healthy. -- April

Things a 4 yr old says that brings tears to your eyes...





This morning Ashley was asleep in my arms and our 4 yr old Whitney was stroking her head and giving her kisses on the cheek. She said "I love my little sister even though she has cancer". "I know she's getting better, right?".

Whitney had her 4 yr well baby check up this past week. Tony and I agree - it was a breeze. After all that Ashley has gone through, we don't sweat Whitney's appointments. If she has to get a shot... who cares, its not cancer. Thats my new motto when Whitney spills her milk or has a mild meltdown or when something doesn't go as she planned... "Its not cancer Whitney". She seems to get it!

Here are the girls this last week. Ashley takes time to smell the "roses", she loves grandpa and loves giving hi-5's to daddy. Whitney got a new outfit from Great Grandma Shimizu and loves bike riding.
It looks like Ashley can attend preschool school in September. Yahoo!!! Look at how big those flowers are. Those are the ones Whitney planted at preschool - April

Wednesday, July 23, 2008

Hepatoblastoma and Remission...


Even though her cancer is in Remission... we still have chemo. Just one more round. We just got home from her 5fu and vincristine doses. Ashley fell asleep and here's Tony giving her anti nausa meds (zofran, benadryl, reglan).

Just one more chemo round to go and then we'll be monitored a lot for the next year. Monthly blood tests and quarterly CT scans.

Bad news... Ashley has another UTI and its E-coli again. No matter how many diaper changes we do or how we do them (wipe vs wash her body in the sink) she seems prone to UTI's. We've asked our Oncology docs to have the Urologist look at her recent CAT scan to figure out why she keeps getting them. For now we're struggling getting her to take the antibiotics and they don't come in IV form. Sigh.

Its a UTI.. its not cancer. I'm trying to keep things in perspective. At least we caught the UTI before her white blood counts got to low. Whew! -- April

Monday, July 21, 2008

REMISSION!!!

There is no visible sign of cancer in Ashley's body on a CAT scan. Her AFP number, which is a blood marker consistent with Hepatoblastoma is now 7.3. Anything under 12 is considered normal. It started at 83,800. We were admitted this morning for round 3 of chemotherapy. Only 1 more after this one! We will go home tomorrow if there is no vomiting. Then be back on Wednesday for the rest of chemo.

She will still have monthly blood tests and quarterly CAT scans for a year. Then it will space out after that.

The doctors said she has grown. She has gained about 1.5 lbs since diagnosis and looks taller lying in the bed. One of the tipoffs on the diagnosis was Ashley hadn't gained weight from January to May. Now she is thriving like a normal baby. Except for those 3 teeth and no sleep she is doing great. They gave us Oxycodone for her teeth pain. Seems like bringing a bazooka to a sword fight, but she can't have Tylenol or Ibuprofen. It masks a fever, and affects the blood for possible transfusions.

This is a "GREAT NEWS DAY"! and something we have been hoping for and needed for a little confidence boost.

Tony

Friday, July 18, 2008

Chemo on Monday...


Looks like Ashley's ANC climbed to 1491 so we're on for Chemo on Monday and Tuesday. We'll be admited on Monday for chemo round 3. Whew! It just rolls off my tongue like this is easy stuff but its really not. I guess we've just reached a point where this is our reality and we plow forward.
Ashley is cutting 3 teeth and has been for at least 2 weeks. They are taking so long to come in so we've gotten some Oxycodone from the doc's to help her with the pain.

I don't have much else to say. We'll post more when we can. Probably after Chemo on Mon/Tues. Oh, she gained weight! She's up to 10.9 kilo's. Another week of avoiding a feeding tube. Must be all that breastfeeding!

Saturday, July 12, 2008

Chemo Postponed


Ashley's ANC was only 77, so no Chemo. We wait a week. It's probably better anyways since Grandpa and Grandma aren't feeling so well.
Here are the kids playing in the sprinkler Saturday. First time in the sprinkler for Ashley. Ashley loves to watch Whitney run. Always laughs. Funny it was the same thing for Whitney only it was Musashi running then.
The hat Ashley is wearing was given to her at Children's. A small foundation that gives hats to kids with Cancer. It says "Life is Good!"
It is!
Tony

Friday, July 11, 2008

Another day behind us...

Whew! I'm exhausted. Today was another big procedure day. CT Scan, bloodwork, Doc visit, Pentamadine inhaliation (don't laugh at my spelling). But we're finally home. Ashley was at Children's for 9 hours today and Whitney came for a bit also. Here's the results...

CT scan... everything looks NORMAL! Thats all they said. Lungs, Kidney's, Liver all normal. I don't know if that means her liver is now grown back. All the doc said is everything looks normal and they don't see any turmors.

Bloodwork... not so good. Again her ANC is just 77. If below 200 and she gets a fever we have 1 hour to get her to the hospital. Because her ANC is so low, they're delaying chemo another week. Her platelets and red blood counts look good so no transfusion necessary. Because it takes her ANC so long to recover, after the next round of chemo they'll give her a shot to help her bone marrow produce more neutraphils faster and thereby making her ANC number recover quicker.

The Pentamadine inhaliation... went GREAT. It was so cute to see Whitney in the procedure room with us wearing a mask. You know... those face masks they hand out all over Children's to keep kids who have coughs from spreading germs every place. She was a CHAMP. They gave Whitney some playdough and she shared it with Ashley. Whitney sure was good. She will probably be a doctor some day.

I'm not doing so well emotionally lately. Sometimes it just creeps up on me and I cry. I know she's going to make it, but just this entire journey is really tough. I just hate these CT's. I hate having to make her fast. Its so hard to watch your baby cry hystirically and do the milk sign but you can't feed her. I just don't wish these experiences on anyone. Cancer, no matter what type, is a horrible thing. All the tests really take its toll on one's emotions.

On a Positive note. THANK YOU MAKO!!!!! You saved us today by watching Whitney. Its so nice to know I have such good friends that can help me with the kids. I'm the type of person who doesn't like to ask so when I do ask I'm pretty desperate. Thank you SOOOOO Much! I heard you baked a cake with Whitney. You had your little girl for part of the day. How FUN!!!

Thank you to all of our friends and family for sending gifts and cards. They really do mean a lot. We read all your emails and cards. We're sorry we are too busy to send out thank you's but please know we appreciate all that you have done for us. -- April

Saturday, July 5, 2008

Wednesday Night... another night in the ER

Everything was going so well. Ashley's ANC number was really high. Unbelieveably high at 1748. She was 9 days post cisplatin chemotherapy and last time at 9 days, her ANC was about 685. Her red blood and platelet counts were high enough to avoid transfusion again. Then it hit the fan. She woke from her nap at 3:30 and I noticed her foot looked red and it was pretty hot to the touch. I called the doc's and they said to just keep an eye on it and if I were afraid I could bring her into the ER. Tony got home around 5 and when I asked him to look at her foot he thought it looked normal. Then around 7 pm I marked her foot where the redness was and the swelling. And now she wasn't walking on it. Within a few minutes Tony thought the redness and swelling were expanding. So... Off to Children's. Sure enough the Doc's looked baffled. There was no entry wound like she jabbed it on something, but she wouldn't walk on it and it was clearly hot to the touch, red and swollen. So they decided we could give her antibiotics or wait until our normal Oncology appointment in the morning. We decided to go ahead with the antibiotics. We got to the ER around 8 pm and left at 12:30. Our future doctor daughter Whitney came to the ER too. She was just in "Awe" of watching all the doc's do things to Ashley. She truly wants to be a doctor some day. Tony took Whitney home from the ER around 11pm and I stayed with Ashley. By 9 am the next morning the swelling, hotness and redness were gone and I was able to see what may have happened. I think she might have gotten a spider bite. There was a pinhead sized read mark on the bottom of her foot. Right in the middle. We couldn't see it before because it was so swollen and red.

So during our regular Oncology appointment we were given a prescription for at home antibiotics to be given through her port IV. Tony is on duty again through Monday to administer meds through her port. Her ANC numbers reached 2795 and when I asked the Doc's why it was so high, they replied, "She's probably fighting something".

It is now Saturday morning and Ashley seems normal again. No more swelling and she's running around the back yard. Tony read someplace that a cancer patient got a spider bite and it kicked their immune system into overdrive and thus killed the cancer. I can only hope that is what happened to Ashley. It sure would explain why her ANC numbers reached 2795 on Wed evening in the ER. -- April

PS - Happy July 4th. We built a fire in the fire pit and made s'mores. Tony and Whitney watched the Kenmore fireworks from our bedroom deck.

Friday, June 27, 2008

Both Kiddo's are Sleeping...

I'm posting because both kiddo's are sleeping. Ashley is doing much better with this round of Chemo. Being able to administer medications at home through her port is HUGE! Tony is a champ for doing it. She has only had 2 vomiting episodes; 1 at the hospital (really just a spit up) and another at home but due to giving her Dexamethasone (I don't know the spelling) too fast.
It looks like next week we have blood work on Monday. They won't schedule our next blood work appt. until after Monday's visit. Our next chemo round will be around the 14th of July.

I had both girls outside today and we made chalk drawings on the driveway. If you look closely you can see Bert. And Whitney made the sun and started to put a rainbow inside it. And she drew a person she named "Angel". Got to go, Ashley just woke up. -- April

Wednesday, June 25, 2008

We're done with Wed's Chemo Dose...

We're home from Wed's Chemo dose. Each time we do chemo there are 3 drugs. The first drug Cisplatin is delivered and we must stay in the hospital a minimum of overnight. Then we come back into the hospital but not admitted, rather we just go to the HemOc clinic and they use a syringe and push two more chemo meds into her port. Typically we are on a Wed/Fri schedule for Chemo but its all dependent on Ashley's ANC numbers. They have to be at least 1000 for chemo. Hers didn't hit 1000 until a Monday therefore we had Chemo on a Mon/Wed rotation. Again our dates are also based upon if the hospital is full or not.

So we're home and she's doing great, I hope this lasts a long time. She vomited one time today but we think its because Tony pushed one of her meds into her IV line too fast. (30 seconds when it should have been 3 minutes.) It was an accident and things happen when your baby is fussy and your trying to inject meds into her and keep a sterile environment. Tony does a great job. - April

Tuesday, June 24, 2008

We're done with Monday's chemo...

We're home from Monday's chemo treatment. I will say that we have had just one minor vomiting episode (reallly just a spit up) at the hospital. We got trained in administering her meds and fluids through her port. Tony is now qualified to access her port with IV tubing and administer Meds and IV fluids. Its amazing how quickly they taught him this. It was about 5 hours worth of training at the hospital today and KABOOM... he can now be a stay at home nurse! HA HA!

Children's hospital did an AMAZING job trying to get us an at home nurse but in the end they didn't feel comfortable with the quality of care we might get and we agreed. We felt more comfortable if we just learned how to take care of her ourselves.

I need to be quick here. We're back to Children's tomorrow for two more chemo drugs. Hopefully we make it through the next 10 days with miminal vomiting. For now we're happy (Ashley is asleep on my lap and Whitney just got home from Grandma and Grandpa's). Got to go. -- April

Thursday, June 19, 2008

Looks like Chemo on Monday...


Just when you think you've got a schedule and a great plan, those docs change things up. Turns out the hospital is really busy next Wed so we'll probably be admitted on Mon for Chemo round 2. For all of those out there wanting to see photo's of me, here you go. This is Mothers day last month. We received the cancer news on Friday night and we didn't know what to do over the weekend so we went to Children's Museum in Everett. We decided to ride the horse. -- April

Tuesday, June 17, 2008

Ahhh... a little breathing room between chemo treatments!

Today was Ashley's bloodwork appt. It was all good meaning her counts are climbing, however her ANC (the one that fights infection) is climbing but still low at 255. Anything below 200 and she gets a fever means we have 1 hour to get to Childrens. Anything above 500 and we can go in public (and Musashi can come home). We're really happy about those counts. We avoided a blood transfusion this round... YAHOO! We can begin her next Chemo round as soon as that ANC is above 1000. Which will likely be by Friday, however we were given the option of waiting until next Wed. We took it. We're pretty certain she'll be admitted next Wed 6/25/08 for chemo round 2. Its an overnight stay and then we come back for more Chemo into her IV port on Friday afternoon. I'm certain the vomiting will start sometime Wed evening and continue for 10 days. Just like last time. But this time we have our own private nurse coming to the house 2 times a day for anti vomiting meds and IV fluids to avoid dehydration. Another YAHOO! This means no driving to the ER with a vomiting baby.

Do you want some REALLY GREAT, REALLY AWESOME, REALLY AMAZING news? Her AFP levels - this is the blood marker that shows up when someone has Hepatoblastoma. Normal is under around 10. Ashley's began around 85,000 in May before Liver resection then plummeted to 9,860 on 5/28 after resection and before Chemo round 1. Her level now is...DRUMM ROLL.... 393. Yep thats right, 393! YAHOO!

So not only is her immune system coming back but we get a private nurse to come to our house and her AFP cancer marker is dropping dramatically. I read somewhere that one of the predictors of success for a cure in this cancer is a rapid decline in AFP's. That's us, thats our fighting Ashley. What a Champ! Typically AFP's decline at a rate of about 50% every 7 days. That would mean hers should be around 1,230. But she OVERPERFORMS and comes in at 393. Now that is AMAZING news!

So no blood work appointment this Friday. We don't go to Childrens until next Tuesday 6/24. They'll do blood work. Then on Wed 6/25 we will probably be admitted for Chemo round 2. We are very set on food and snack packs now. Thank you so much mom's group. Your food drop off's have helped more than you'll ever know.

We are finally figuring things our at Childrens and are figuring out how to manage Ashley through all these blood draws (put her in the Ergo Baby carrier, bring the portable DVD player). Its not so daunting anymore. -April

Friday, June 13, 2008

Friday the 13th update...


At our blood work appt today we didn't need a transfusion, yeah! The bad news is Ashley's ANC (Absolute Nutrifil Counts - the first line of defense against potentially fatal illnesses) is still really low. On Tuesday is was 10 and today its just 15. Anything below 200 and if she gets a fever means we have 1 hour to get her to the ER. We were hoping she was above this danger zone today but she's not. Our dog (Musashi) has been staying with Grandma and Grandpa until Ashley's ANC is better. Any slight germ could make Ashley really sick. This means that not only does Ashley need to be careful, but Whitney's social life is very affected. Whitney can't be around anyone who has even the slightest cold for she could bring it home to Ashley. Because Ashley's ANC number is so low, they might delay her next chemo treatment. Her ANC has to be at least 1000 before they'll do chemo again. We were tentatively scheduled for Chemo on Wed the 18th but it will likely be delayed. We find out for sure on her Tuesday blood work appt.

We thought she was back to normal and she is with the exception of that ANC number. Her coloring is great and energy level is normal. She runs around the kitchen island and wants people to chase her. She went for a walk on the Burke-Gillman trail and went for a boat ride last night. That was great! Both Ashley and Whitney love Daddy's big boat (its a small boat but they think its big).

Did I mention her hair is starting to fall out? And she had her first bloody nose. All side effects of chemo. Nothing to worry about, just normal (sigh). Oh and we need a little nutrition help. Ashley still gets 90% of her calorie intake from breastmilk. She doesn't like much of any solids. If anyone has any good nutrition tips, we could use them. She doesn't even like juice. I can get her to eat chocolate chips, and a few other type of carbs like cheeto's but man... its difficult. Her weight is still stuck in the range of 10.2 kilos (22.4 lbs). This was the weight she was at before her liver surgery on May 16th. She's been at this weight since Jan 31, 2008. The tumor weighed about 1/2 pound so she's put some weight back on but we need more weight. She's been stuck between 10.4 and 10.2 kilo's for a while now. I don't want to scare you about her weight and must add that she began walking round Jan 31st so her activity could cause her weight to level out, however she should be putting on more weight now. - April

Tuesday, June 10, 2008

Blood Counts

There are 4 main numbers that we monitor in Ashley. Red blood cells measured by hematocrit, Platelets, White blood cells, Absolute Neutrophil count.

The Red blood cells carry oxygen to the body, give color to the skin, and provide energy to the body. The normal range for her is 30 - 40%. They will give her a blood transfusion if it goes below 20% or is symptomatic. We watch for tiredness, fatigue or more pale than usual.

Platelets prevent bleeding. The normal range for Ashley is 200 - 450 thousand. Platelets are given if the count is less that 20 thousand. We watch for her to bruise and bleed easily.
White blood cells. They fight infection. The normal range for her is 5-15 thousand. If your WBC are low your child is at risk for infection. Lots of hand washing and sanitizing.

Absolute Neutrophil. A type of white blood cell. The first line of defense and the first to fight off any fatal bacterial infections. The normal range is over 1000. If the ANC is over 500 she can go to school or be in a public place. If less than 500, avoid crowds and no social events or school. If ANC is under 200 and she spikes a fever, she must be seen by a doctor within an hour.

Ashley's numbers.

Red Blood Cells: On 5/28. 29,100. On 6/1. 29,900. On 6/3. 29,000. On 6/6. 27,300. On 6/10 25,300. Below 20,000 she would need a transfusion. So far she probably won't see a transfusion this week.

Platelets: On 5/28. 702K. On 6/1. 308K. On 6/3. 247K. On 6/6. 162K. On 6/10. 244K. Rising that is good!

White Blood Cells: On 5/28. 10,000. On 6/1. 4900. On 6/3. 5200. On 6/6. 4600. On 6/10. 4900. Rising again and we think we can sense it too. She just seemed in better spirits and her normal self the last 2 days.

Absolute Neutrophil: On 5/28. 3880. On 6/1. 2092. On 6/3 1830. On 6/6. 685. On 6/10. 15. Today that was the big bummer for me. She basically has no immune system. If she spikes a fever we have to get her to the ER within an hour for IV antibiotics. She is feeling fine now but is very susceptible to infection.

The last number that we track is probably the most important number. The Alpha Feto Protein number. We don't monitor this one as often. Only the day before Chemotherapy. This is the marker that shows up in the blood that is produced by the Hepatoblastoma Cancer. This number should be below 8 or zero. Upon Ashley's diagnosis it was 83800. It has a half life of 5 days or so. That means that every 5 days if removed should reduce to 1/2. Ten days after diagnosis, they had removed what they think is all of it and the number fell to 9830. AWESOME! It should of been about 20,000 but it was lower.

I asked Dr. Gau if they think they got it all why do we have to do chemo. He said that we can't see it at the cellular level on CAT scans or Ultrasounds. There would be a 50% chance that it would return without Chemo. That means that there is a 50% chance that it is elsewhere in her body, her brain, lungs, kidneys etc but they can't see it. That is why they do Chemo. The chemo should get the rest of it at the cellular level and we should see that AFP number go to zero. I VISUALIZE AFP AT ZERO FOREVER. We will be admited next week Wednesday for our 2nd of 4 Chemo sessions. They will check her ANC number on Tuesday to make sure she can take the Chemo. Otherwise we postpone it.
Tony

I want to add to Tony's post... (April here)... I'm heard many of you are wondering "How much does all this cost?" "Is this going to be a financial burden?" The answers... This costs A LOT of money. Thus far our bills are about $60K. We have not received any physican bills or chemo bills yet. Only ER, Liver Surgery and Port placement surgery. And we'll have more surgeries and more CT scans and ultrasounds. The good news is our insurance covers all of this with just a $2,500 Maximum Out Of Pocket annual deductable. We're fortunate that every year in October we re-evaluate our insurance needs and we changed Insurance on Jan 1, 2008. This new plan covers all of Ashley's treatments and has an Unlimited Lifetime Maximum. We're very lucky. The only issue we have is when Tony decides to retire or when his employer offers different insurance plans. We'll cross that bridge when we get to it, but we're under the impression that if she's free of cancer for 5 years she's considered cured and would be insurred just as any other person and the pre-existing condition clause doesn't apply. I will also add that our insurance company Cigna has agreed to pay for Ashley to have a nurse come to our house and administer IV fluids and medications for the week following all her next Chemo treatments. This is a blessing as she was vomiting 6-8 times a day and putting her in a car to get the the ER was a real nightmare. This way the nurse can come here with fluids and meds... YAHOO! Thanks Cigna

April

Sunday, June 8, 2008

Friday bloodwork appointment...

Friday was another bloodwork appointment. We go in for bloodwork appointments every Tuesday and Friday. Her counts are dropping and her white blood counts are pretty low. This means she's susceptible to any type infection. We need to keep her away from people and any germs. Her red counts and platelets are low also. She'll probably need a transfusion sometime this next week. I guess transfusions are common during chemo. We had the doc's give her more IV fluids on Friday. We just wanted to be safe for the weekend and not need to stress about bringing her to the ER if she got dehydrated.

I think we have our little girl back. She hasn't vomited since Friday. Its now Sunday and she's been running around the house trying to dance. She seems to think if she rolls up onto her tiptoes that she's jumping. Her diapers are averaging about 20-25 oz a day and she has been motivated to eat solids for the first time in weeks. Mac & Cheese and popcorn are favorites. And she wants to drink water. We try to give her juice but this kid just wants water.

Its nice to be home. Things are beginning to feel a little more normal. I was able to clean house yesterday and Tony put up a new shower rod and curtain in the girls bathroom. Tony and Whitney even went to Costco yesterday. - April

Tuesday, June 3, 2008

Bloodwork appointment today...


Today we had our first post chemo blood work appointment. But of course we couldn't have a normal bloodwork appointment, we had to have a vomiting, antibiotic, and bloodwork appointment. We had vomiting issues again for the past 12 hours and nearly brought her to the ER last night but we decided not to. We literally write down the weight of every diaper, record every medicine, record every sleep pattern, and every vomiting session. At today's appointment we asked they give her more fluids and zofran for the vomiting. They did and she was immediately better. The great thing about this appointment is we went into it thinking we wanted them to put in a feeding tube but we left with a better plan. Instead of us stressing about getting antibiotic meds into her orally; (typically you can give meds directly into a feeding tube) we were given the option of a 1 time a month nebulizer/antibiotic treatment. We did it and it was AWESOME! So now we don't have to give her 8 doses a week of oral meds for any potential upper respitory infection, we just get a 20 minute nebulizer treatment once a month.

We think we might have the magic dosage right for vomiting too. 4mg of Zofran every 6 hours. Thats a big dose for her but it seems to work pretty well. We'll see how the night goes tonight.

I must say that having your child go through this is the most difficult thing in the world to experience. One day you think you know what to expect and the next day its totally different. Our emotions are on a huge rollercoaster. Right now I'm happy because she's walking around putting tape on the windows but in 5 minutes she may vomit and collapse to the floor. Look at these scars. One for the liver surgery, the other for the port insertion. -- April

Sunday, June 1, 2008

Is she Dehydrated?

We went to the ER today as Ashley was vomiting a lot in the last 12 hours. Grandma came over and watched Whitney as we took Ashley to Childrens. They gave her 7 oz of IV fluids and more Zofran through her port IV. She was immediately better. Its 8 pm and she hasn't vomited for 10 hours. Whew! Tony may try going back to work tomorrow. That ought to be interesting.

There are so many things that happen during this treatment that make us cry. Just watching them pull tape off her skin and she's crying... it makes us cry. Today at the ER we had two really good laughs. My shoe fell on her head (she didn't even notice). We busted a gut. Then she fell asleep against my chest while in the ER bed. I hiccuped and her arms and legs flailed out to the sides in her sleep. That was so funny. Tony and I laughed about it for 5 minutes. -- April

Saturday, May 31, 2008

Roller Coaster Ride

This is definitely a roller coaster ride; One hour things are normal, the next... major vomiting. Its so hard to watch her be sick. It makes me cry. It makes Tony cry. She wants to eat so bad but can't keep it down. We give her anti nausa meds but we have to force them into her mouth. She screams and we're holding her down. It takes a minimum of two people to give her meds. She spits them out also. We have no idea how much she's injesting. I saw a 14.5 month old at the Chemo clinic with Lukemia. She had a feeding tube. The grandma and grandpa bring her to chemo clinic. They told me the feeding tube is a blessing and that if we could get one, get it sooner rather than later. It makes it easier to give anti nausa meds. I don't know... a feeding tube just sounds so invasive to me. It seems if she needs a feeding tube that its a step backwards. I feel the same about blood transfusions. I don't want her to have to do either. It just makes me feel like she's getting worse not better. I know I'm wrong and that both are just par for the course, but man... It just isn't right to do this to a little baby.

Hopefully tomorrow is better. Oh and Musashi had a pretty large seizure today. We're taking her to the vet. She probably has Epilepsy (i'll check the spelling later). - April

Friday, May 30, 2008

Life is starting to seem normal....




Yes its true! Life is starting to seem normal. We're home from our Friday Chemo doses and Ashley hasen't vomited since 3 am. Those IV push Zofran drugs really help. Trying to have her take oral meds is difficult so we had the added blessing of the nurses puting anti vomiting meds into her port IV today.
We might go for a boat ride tonight. And we're going to get the mail as a family. I'm excited.

Today we received another AMAZING grocery delivery from my mom's group. You guys are amazing. By the time Ashley is done with all her Chemo, I'll be 30 pounds overweight. I think we're set for food for a while as things are getting more normal. We shouldn't have any over night hospital stays for 2 weeks. Unless she needs a transfusion (often happens with chemo patients and nothing to stress about).

We have received so much love and support. Our neighbors Gib and Eileen have let the dog outside, Deen and Gretchen... we thank them for their offers of playdates for Whitney. Auntie Hana and Uncle Tsu; we are getting your emails and cards. Feel free to keep sending them. We can't often reply to emails as we're really busy but we read all of them and we're saving them. Auntie Cindy and family... thanks so much for all the support and gifts for the girls. Tony took Whitney to Jamba juice tonight and she went to Baskin Robbins and cashed in all the ice cream certificates from Tsu. See the photo of the ice cream she picked out. Grandma Shimizu - we received your gift and card, thank you so much.
And all of the parents and teachers at Northshore Co-0p preschool. I'm getting your emails and I love getting them. I haven't seen you all in so long and please know that I am well and think of you often. Mentally we've gotten a grip on this cancer and it isn't as daunting any longer. She's going to beat it -- I have no doubts about that.
I hope I'm not forgetting anyone. Grandma and Grandpa have been full time employees of the Whitney Malia Nakata babysitting club. And Grandpa has mowed our lawn again. Whew! Its amazing how much work needs to be done around our house.

I need to go for now but I'll post more later. -- April

Feeling Lucky

Got out of Children's today at 5:00. Excited to get home and see Whitney.
Ashley vomited in the morning and again at noon when we were supposed to leave. That 12:00 vomit kept us there an additional 5 hours. We got to the van with a stack of towels and rubber blankets draped over the seats. Ashley vomited in the parking lot. We didn't go back in. She seemed in pretty good spirits so we drove home. We pulled over 3 times. Three towels, three outfits now in a vomit garbage bag. She did ok at home eating a few noodles and rice and fell asleep at 9:00. Back up at 1:00, but happy dancing watching Elmo. She just vomited at 3:00. We finally were able to give her more nausea medicine. She seems to be holding it down and now is getting sleepy. We are back at Children's at 11:00 today , just 7 hours from now. Hope to get some sleep and hoping Whitney sleeps in late. I've got another stack of towels for the ride in at 11. I'm doing some chemo laundry now.

Some statistics: there are only about 100 reported case of Hepatoblastoma a year in the country. Of the 100, 87 are boys, 13 are girls. Also of the 100 only 25 get to cut it out on the first shot. That means that 3 or 4 girls in the US have the diagnosis that Ashley had and the prognosis. Stage 1 with a short chemotherapy regiment. We always knew Ashley was one of a kind.

We have met other parents at Children's that would do anything for the Stage 1 with 12 weeks of Chemo and survivability in the 90%'s. We met a parent from Alabama. Her 3 month old has Leukemia. They gave her 20% chance of living after diagnosis. She is 9 months now. The odds for her went to 40% after a bone marrow match was found. They came to Children's because the odds at Children's brings it to 75%. They live with the fear that we had for the first week or so all the time. They have left their jobs and live at the Ronald Mcdonald house down the street. They have been here since March. WE ARE LUCKY!

We are lucky that Children's is 9 mile away and they are top 10 in the country for Cancer.
We are lucky that Dr. Donna and Dr. Wu found the tumor on May 9th.
We are lucky they think they got it all and it is stage one.
We are lucky that our Chemo is only 12 weeks and not 3 years like some kids.

Children's has been incredible. We saw Minnie and Micky handing out stuffed animals yesterday. Too bad Ashley was still in recovery. They have new toys that have been donated, afghans that have been knitted, clowns, musicians, and volunteers. We had a volunteer come to our room bring us toys and and afghan and a latte. She had a bag. We asked her where she got it and she replied it was a gift to her and that she get so many compliments on it. It was one of Uncle Wayne's sparrow bags. I told her that was my Uncle Wayne Nakata and this is Ashley Nakata. She was excited.

Ashley just fell asleep in April's lap. I'm going too.

Tony

Wednesday, May 28, 2008

Sometimes its just hard

Ashley went in this morning for surgery to get what they call a Port-a-cath. It is a catheter that is under her skin and will be used for blood draws and delivering the chemo.
The last five days or so have been pretty great. She became herself again. Dancing, walking, watching Elmo, eating. Everyone is happy when she is happy.
We thought that we would not have to do an overnight here. Overnights are junk. No sleep, no privacy, vitals every couple of hours. Junk. We are here for an overnight though.
They are mixing her chemo right now and will start to deliver it at around 4:00 pm. They give you this book about taking care of a child going through chemo. They tell you that when you change her diapers you have to wear gloves because the urine and poop are so toxic. If she vomits you must wash it off as fast as you can. The sheets and clothing must be prewashed separately from the rest of the laundry. It is that toxic. They give you precautions if the vomit gets in your eyes or skin.

The thing that just breaks my heart is they are pumping this into her blood. When she wakes up from her anethesia she sounds like a walrus when she cries. It crushed me today. I know that we got over some big hurdles already but watching a 16 mos old go through this is tough on both of us.

Ashley seems to be doing ok considering. She gets on with her life without any anxiety. We are trying to also.

Tony

Tuesday, May 27, 2008

Kidney Test & Hearing Test

Ashley had a hearing test last Wednesday and today (Tue 5/27) we were at the Hospital again for a kidney test. Both tests are to establish a baseline as the chemo drugs can affect both. She'll be re-tested again before beginning her 3rd Chemo round.

Tomorrow (Wed 5/28) we go in for surgery at 7:45 am. They'll install a port-o-cath into her chest. After recovery (maybe an hour or two) they'll inject her first Chemo drug. Cystplatin (spelling??? I'll check that later). It looks like they might let us come home provided things go okay. Then we're back to Children's on Friday for two more chemo drugs.

We'll update more as we get it. Her spirits are good. Great actually. She loves to dance. We're trying to think of outdoor things she can do to replace her sandbox habit. That sandbox is forbidden this summer. If you have any safe non-toxic ideas, please share. - April

Tuesday, May 20, 2008

Home at last!

Ashley on the Tuesday, May 20th. You'd never know by looking at her.

I don't think the surgeon who cut out the tumor thought he would get the response that we gave him upon delivering the news. The news was the it is cancer. Hepatoblastoma. They cut it out with clean margins making it Stage 1. We cried.
I think it was going so well that we started to truly believe that it was benign and this wasn't really happening and that they'd cut it out and there would be no chemo and things would be normal again. I for some reason thought that we'd go home and recover for 3 or 4 weeks or so and things would be kind of the same. I guess not. It's probably why the doctors on the initial consultation don't tell you too much of what is going to happen because it would be too overwhelming.
We got our Chemo regiment for Ashley. There is no waiting. As the doctor said, this is "major stuff" and the line I can't get out of my head "the greatest risk to her life will be this thing coming back in the next year or two". Those are the thoughts I fight myself from thinking of. Sometimes those thought slip in anyways. We got home and we should be happy. I'm telling Grandma and Grandpa about the chemo and can barely keep it together. They were there to refocus me on the positives. Thanks mom and dad for everything.
So tomorrow we are right back there for a test on her hearing. This Chemo is tough the ears and the kidneys. They will test her hearing and kidneys to make sure they can take the Chemo. I don't know what they do if the tests aren't good. Then a days rest. Then and 8 hour IV drip kidney test on Thursday or Friday. Next week another surgery to insert a catheter into Ashley's little chest. They will deliver all the Chemo through that, take her blood draws from there. Another overnight at the hospital. They will also administer the first session of Chemo. She will have 3 more overnight stays at the hospital on 3 week intervals after that.
Ashley sat in her high chair tonight and ate, smiled and laughed. I haven't seen that in a couple of weeks. It was a great sight. Tony.

We're home and optomistic...

Well MOnday was tough but its Tues. afternoon and we're home. The IV was precautionary against dehydration because she would nurse but not swallow. The oxycocdone causes that. We reduced her meds and she began nursing fine. I was mentally a mess last night, I wanted to just leave the hospital... check out and go home with Ashley. I didn't but I did walk out of the building with her and my belongings.

They put more IV fluids in her Monday night and this morning she was nearly normal. The Pathology came back. Its Hepatoblastoma stage 1. They got it all out surgically but she needs chemo. She'll have surgery again next week where they'll install a port-o-cath for chemo treatments. Her first chemo treatment will be the day after surgery for the port-o-cath. We'll be admited for each Chemo round for about 24 hours. It takes about 6 hours just to deliver the meds.

If your child gets cancer, you hope for the best. You hope its Hepatablastoma, you hope the surgeons cut the thing out 100% and you hope for stage 1. That is what we have! We have hope and very high survival rates. Chemo will not kill her! Her greatest risk is re-infection of Hepatablastoma after Chemo is done. The first 1 year after Chemo is the most difficult for re-infection. After 1 year things drop down as far as likelyhood of recurrance.

We're home and I probably won't take Ashley anywhere for a while. No school next year. We're investing in auto-dispensing Purell for our house. We need lots of hand washing. Oh... She vomited on the way home from the Hospital today. We think she is just nausous from the drive and drugs. We'll keep an eye on her. We love her so much - April

Oh-- I forgot to mention. We finally know why she had high fevers, vomiting when we went to the ER last Thursday morning (the day before surgery). She has another Urnairy tract infection. That story and how I learned of the infection is what made me so ANGRY and SAD and I wanted to leave the Hosptal Monday night. All I have to say is ALWAYS follow up with your doc's. Even if they say they'll call you. You call them first and hound them.

Sunday, May 18, 2008

A little too fast

IV is going back in. Pain is coming back. No pee in the diaper. We need more time. Bummer.

As much as I want her home, I'm glad this is happening at Children's.

Tony

Half Baby-Half AMAZING!

The size of the tumor was about the size of a grown mans fist. Unbelievable.

We first heard that we would be in the hospital for 2-4 weeks. I think that would of been the case if we need to transplant. Then they told us about a week for her procedure. Then after the surgery they said 5 days.

At about 5:00 tonight they disconnected everything. The epidural, the catheter, both IV's, yeah she had 2, the drain coming out under her ribs, the blood pressure monitor, the Oxygen sensor and the heart monitor. She has no fever either. She is on Oxycodone oral medication. She is not vomiting, and she is breastfeeding almost normally.

She pooped 2 times last night. That's big. I guess when they go in and move the liver around, they also move her bowels and intestines around. They get inflammed. That's why they don't want her to eat till they hear bowel sounds or farting. Never wished so hard for a fart in my life. She had bowel sounds her first night.

We sat outside on a patio with her in April's lap. It was wonderful and a beautiful night.

We saw one of the surgeons in the cafeteria and she said that kids process pain differently. They don't know why they don't need as many narcotics as adults.

If there is no fever tonight and no vomiting, we are probably going to go home tomorrow! AMAZING.

Tony.

Saturday, May 17, 2008

The first 24 hours Post Operative...

Well its 9:39 am and I actually got to feed Ashley this morning. She was happy, lets hope she keeps it down. Tony slept with Ashley on her bed while I slept in the pull out - my first time ever NOT sleeping with her. I think she did better sleeping with Tony than with me. I got about 6 hours of sleep... I think Tony got 1 hour... maybe less.

Sometimes I look at her with all those cords going into her body and I think about my poor little baby. She shouldn't have to have this happen to her, she's so little. Then I wonder what life will be like. Will future tumors come up, will this spread, will I always be worried. Will life ever be normal. I try and take comfort in that life will be normal... a new normal. Life will simply be a new definition of normal. I'm always going to wonder if any tumors are in there again. I'm always going to wonder how long her life will be. I'm always going to wonder about the future. I guess that's part of my new normal. Then I wonder... Will she ever wear a bikini? HA HA!

What will chemo be like? She doens't have much hair to loose at least. Will she swell, will people be scared to look at her or will people have that sorrow look on their faces as they glance at her ravaged body. Okay... I'll get ahold of my self now... I'm trying to take this one day at a time. Sometimes its one minute at a time. -- April

Friday, May 16, 2008

"REMARKABLY FANTASTIC!"

Those were the words of the surgeon. All of the prayers and thoughts must have been heard.

It went better than we could of hoped for! Turns out that they did not have to cut off one of the two main blood supplys. After getting in there they were able to ultrasound the tumor and remove it only. They did so with what they called "good margins". What that means is that there is about a centimeter of good tissue that they cut out around the tumor. Or so they think. It won't be confirmed until pathology looks at it with results on Tuesday.

There are 4 stages of cancer. Stage 4 is the worst when it has travelled, then 3 that is where they see "visible hunks". Stage two" you think you get it all but margins aren't great or there is a part of thin margin. Stage 1: you get it all. He thinks it will be stage 1 or 2, but could very well be stage 1. The very best stage. I guess the operation went about as good as it could go. I guess there was very little blood loss, whick is unusual in a liver resection.

He told us that it would grow back in about 2-3 months!

When we first saw Ashley wake up. She sat up and cried mama. She can't eat anything until her stomach "wakes up". She wants to eat badly and does the milk sign. She got mad and flailed her legs. All of these are good signs. She stood up later and tried to walk to April. She is doing pretty awesome, groggy but pretty good.

She has 2 IV's, a cathater, an epidural, and a drain coming out from under her rib cage. Gradually these will be taken out.

Sorry it took so long to update. By the time we got our room and ate it was getting pretty late.

Mama and Ashley are sleeping right now.

I know there is still more to go, but for right now I'm one happy dude!

Tony

Surgery Schedule

Check in at 9:00. Might have to get some bloodwork done ahead of time.
Then go to Operating Room. Nurses will talk with us as well as the anesthesiologist.
Procedure starts at 11:15. They will give us a pager. It will take about 4 hours (deep breath).
The doctors meet us after to tell us how great it went.
We go to recovery room and watch her wake up.
Ashley's fever seemed to subside last night. She isn't moaning this morning. I think that is a good sign of things to come. I'm scared and nervous, but I'm optimistic too.
Our pediatrician called us yesterday, Joyce. She told us that we caught this thing early.
One of the other doctors told us that in only 25% of the tumor removals do they go in without chemo or a biopsy. Those are the best situations.
I'm hanging on to every one of those words right now.

Tony

Thursday, May 15, 2008

Surgery tomorrow, the next big hurdle.

Looks like we are going to be checking in at 10:00 for the surgery. The head surgeon told us to get there at 9:00 though.

The last 24 hours have been rough on Ashley. She seems so lethargic, just sits there in April's lap. In some ways I will be relieved to have them take her away. In other ways I don't want to see them take her away.

I'm trying to think of something to do while we wait for the surgery. Something to keep our minds off of the bad things. I've been reading the the Lance Armstrong story at livestrong.org for some motivation.

I'm just trying to picture her after the surgery, doing her little"Hot-dog Dance" from the Mickey Mouse Clubhouse. The doctors coming in and telling me how great it went. I hope that is the next post on this site.

One positive that my friend Greg pointed out. I've never experienced love, support, prayers like this before. I will never forget it. It's pretty cool.

Trying to LIVE STRONG. Tony

Wednesday evening... We went to the ER at 3 am

Wednesday evening Ashley developed a fever. She hadn't vomited for 12 hours but she was feverish. We called the onconogist/hemotologist. They said basically not to give her any tylenol/ibprophen because it can cause bleeding issues during surgery. This was at 9 pm. By 11 pm her fever was around 99. We called the doctor again. They don't get concerned unless the fever is in the 100's. If we're concerned they told us to take her to our Ped. By 1 am her fever was around 100.7 and she would moan each time she'd wake in her sleep. She's twist her body into the "butt up" position on the bed and just moan. Her fever would spike then fall. She was hydrated as we could see tears. Her breathing seemed labored i.e. short, shallow. We called the Doc again. "Bring her into Children's Hospital ER".

We called Grandma and Grandpa at 2 am and they came over to watch Whitney as we headed to the ER. We had so many tests done. Chest X-ray, another IV so they could get blood work, a booger smear from her nose, Blood pressure. Of course before we could begin the blood work, we had to get a sick, groggy often awake but really tired and sleepy baby to drink some "valium" type of medication. The first syringe... she spit the entire thing out. 30 minutes and another syringe later she finally got the medicine in her and went to sleep. Whew! Her fever was normal upon checking into the ER but it would spike. By 8 am it was 102.

Tony and I were up all night. They found no chest conjestion which is good because this means they probably wouldn't postpone her surgery on Friday. Her blood work indicated her white blood cell count had doubled within the last two days so she's fighting off something. They don't know what it is. We're still waiting for the "booger smear" results.

We left the ER around 9:30 am and are home. We've been sleeping. I just woke up to update the blog. Ashley is still warm but they allowed us to give her Fever All. Its basically Tylenol and given in the butt. NICE Visual Eh! I"ll update more as we get it. We just need her to be tough and pray the surgery isn't cancelled. Then again, the doctors know best and if they believe the surgery should be cancelled until she's feeling better, I guess that's the right call. Right now we're on a wait and see basis. -- April

Wednesday, May 14, 2008

Wednesday. Two days before surgery...

Today was a... hum... I don't know kind of day. Ashley woke so early 5 am. She went to bed around 10:30. Poor baby must be tired. She vomited today around 9 am. A lot of vomit. A lot of beef jerkey. She LOVES Tony's homemade beef jerkey. The vomit wasn't green. She's so tired today. Numerous naps. She is only awake in about 2-3 hour stretches. She has been nursing in 30 minute increments. I'm drained. Drained of milk, drained of energy, just drained. I'm sleeping well but I'm drained. We called the oncologist today and again, they're not concerned about the vomiting unless its green. Whitney has been a CHAMP at school. She goes all by herself now and doesn't need mommy or daddy there. This is a big help for us.

I don't want to feed Ashley anything but water, oyster crackers and breastmilk. This seems to help her keep her food down. She did eat some Hershey's chocolate this afternoon when Tony stoked up an outdoor fire in the firepit and Whitney made smores. Ashley wouldn't eat the graham cracker... she gave it to the dog. Ashley wouldn't eat the marshmellow... she gave it to the dog. Ashley ate the chocolate. HA! Too bad Musashi. No chocolate for you. It seems as if Ashley is keeping the chocolate down. She's asleep right now. I don't know when she'll wake or when she'll be down for the night. I'm just going with the flow. For those of you who know me... going with the flow is not my style. I like to have a plan. Tony seems to be doing okay today. We find it hard to hold back tears sometimes. I try not to let it get the best of me. Thats all for now from me. Thank you to all of you for your kind thoughts and help. Bob and Sally Nakata... your the best grandparents in the world! You make us food, you mow our lawn, you clean our kitchen, you're there in the middle of the night if we need you. We so appreciate you.

Crystal Thomas, - your help seems like a full time job. I don't know where you get the time and energy to coordinate so many things for us. Thanks so much.

Remember to kiss your kids good night and tell them how much you love them. Squeeze them TIGHT! -- April