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!


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.


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.


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.


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


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