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.
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