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.

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


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