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

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

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

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!

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

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

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.