Long Update - 25 Feb 2009

I apologize to all for not updating this page in the past couple weeks. We've gotten back into our normal routine of work, school, chores, parenting, and life. I promised I would provide a rundown of blood counts so you can understand what Isaiah's levels are, how they impact him, and what he's going through. Life over the past couple weeks has been normal. Sarah is about 9 pounds and started smiling. Levi is growing so fast and turning out to be a big kid. Levi, not even 4 years old yet and already weighs 45 pounds and is taller than most boys his age. Isaiah is doing great ... running and playing hard and acting the way he did before we even found out he had Retinoblastoma. Erica is back to her daily routine of herding the chillen's and running the house. I'm back at work. I'll provide a couple of updates. I'll start first with blood counts and provide the Isaiah's counts from the past couple weeks, then update everyone on the ocularist and upcoming schedule.

Understanding Isaiah's Blood Counts

Chemotherapy is an anti-cancer treatment that is designed to kill cancer cells. Because chemotherapy drugs can't specifically target cancer cells - they target our bodies fast growing cells which include blood cells, gastrointestinal tract, and hair. After Isaiah receives chemotherapy, his blood counts will hit bottom or nadir about 7-10 days post chemotherapy and then start working their way back up to near-normal levels. I will provide four specific counts: HGB, Platelets, WBC, and ANC. I'll provide a quick reference on the right hand side of the page as well.

HBG - Hemoglobin, red blood pigment. Low HGB levels indicate you are anemic, which means your body has a decreased ability to carry oxygen to body tissues & cells. Anemia symptoms include weakness, fatigue, looking pale. Normal HGB levels in a boy Isaiah's age are 11.5-13.5. Isaiah's Oncologist will order a transfusion if his HGB levels drop below 8.0.

Platelets - helps blood clotting in order to stop bleeding from injury. Decreased platelet count is called thrombocytopenia. When Isaiah's platelet counts are low we have a call Duke if he is injured and continues to bleed. If it's bad or an injury that is has moderate to severe bleeding we'll either take him to the emergency room immediately or call 911. Symptoms of low platelet levels are easy bruising. Normal platelet counts in a boy Isaiah's age are 250-600. Isaiah's Oncologist will order a transfusion of platelets if his levels drop below 20.

WBC - White Blood Count - fight infection, other white blood cells carry immunity, protect against pathogens, and control inflammation and damage of tissues in the body. If Isaiah's counts are really low then he could be given a shot of a hormone drug called neupogen, which stimulates the bone marrow to produce more blood cells. Normal WBC count in a boy Isaiah's age are 6.0-15.5 or 4.0-10.0 (from a Duke booklet) (= 4000 - 10,000).

ANC - Absolute Neutrophil Count - shows the bodies ability to fight off infection and includes different calculations of white blood cell counts to produce [WBCx(%Neutrophils + %Bands) = ANC]. Neutrophils fight bacterial infections by surrounding and attacking foreign cells. Bands are young neutrophils. A high band level around the time of nadir usually indicates a near future rise in your WBC, neutrophils, & ANC. Normal ANC levels are between 1500-8000. If the number is less than 500 you are considered neutropenic or immunocompromised. This means that Isaiah has a severely reduced ability to fight infection and therefore we take drastic steps to ensure he remains safe. These steps include constant hand washing, keeping the house clean, staying out of public and sick people. If Isaiah does get sick, his temperature will rise as his body attempts to fight the infection. If his temperature is above 100.3 then we'll call Duke and then take him to the hospital to be admitted for treatment and anti-biotics. This will most likely require a trip by our local ER and then drive to Duke. Because Isaiah has a port-a-cath, a high temperature could also indicate an infection in the port, which would require being admitted to the hospital and probably have the port removed and another put in. If Isaiah's ANC is 1000 or below, we'll have to delay chemotherapy - wait another week and check again.

HGB (11.5-13.5) - transfusion if under 8.0
Platelets (250-600) - transfusion if under 20
WBC (4.0-10.0)
ANC (1500-8000) - considered neutropenic or severely immunocompromised if under 500.

I hope you had as much fun reading that as I did typing it (sarcasm). If a transfusion is ever needed, we'll go to Duke because they have better procedures and safeguards than other hospitals in our area.

Isaiah's Recent Blood Counts (you'll be able to see the levels drop and then rise as his counts come out of nadir - I will update these counts every Tuesday with Monday's test results)

9 Feb 2009 (+7 days post chemo)
Hgb: 10.4
Platelets: 77
WBC: 2.6
ANC: 1000

16 Feb 2009 (+14 days)
Hgb: 8.8
Platelets: 94
WBC: 4.9
ANC: 245

19 Feb 2009 (+17 days) - Erica and I wanted this test outside of the normal schedule because Isaiah was close to needing a hemoglobin transfusion and was neutropenic. His ANC was higher and then drops the following Monday. This may be because Isaiah was fighting off a virus - his temp registered at 99.8 degrees two days in a row last week.
Hgb: 9.4
Platelets: 225
WBC: 4.4
ANC: 616

23 Feb 2009 (+21 days)
Hgb: 10.0
Platelets: 477
WBC: 4.8
ANC: 480

Update on the Ocularist


I did end up receiving a call from the ocularist in Greenville, SC - who accepts our insurance. I was originally concerned about Isaiah being awake while being fitted for his fake eye. This process involves taking a dental mold of the eye (implant). Mr. G, the ocularist, mentioned that he started his career off at a very large Eye Center on the East Coast more than 30 years ago where he fitted and made prosthetic eyes for several hundred children diagnosed with Retinoblastoma. Mr. G mentioned that he has never needed a child to be under anesthesia to get an accurate fit. He'll be able to get a fit - but Isaiah won't like it. The process won't hurt. Isaiah will just have to deal with a strange man messing with his eye a couple times.

We decided to use the ocularist in Greenville, SC because he accepts our insurance and due to his experience with children. The Duke Eye Center uses an ocularist in Burlington, NC - who up until the end of 2008 was the only ocularist in North Carolina that accepted our health insurance (a very large provider). I called Duke's preferred Ocularist a second time to ask about the insurance process and told a different woman that I was previously told that they didn't accept our insurance and we would have to pay out of pocket and then be reimbursed. She seemed surprised and said the other woman had given us inaccurate information - they indeed accepted our insurance, we just had to pay upfront and then be reimbursed. I believe that means they don't accept our insurance. That's pretty much like saying they accept cash as a form of payment.

Everything is great now. We'll take Isaiah back up to Duke this coming Monday & Tuesday (2-3 March) for his second round of chemotherapy. He'll have an EUA in the morning prior to receiving chemo. The EUA will be at the Eye Center where Isaiah's Pediatric Opthalmologist will make sure his right eye is still okay. Because Isaiah is still neutropenic, his ANC will have to rise from 480 to 1000 by Monday to receive chemotherapy. If his ANC is below that we'll have to go home and wait a week.

We'll travel to Florence, SC on 5 Mar for Isaiah to be fitted for his prosthesis by Mr. G. Then we'll travel to Mr. G's office in Greenville, SC on 10 March to pick up the fake eye and make sure it fits.

My grandparents are currently taking the long drive from Kansas to North Carolina to stay with us for a couple of weeks. They should be here Friday. Erica and I are excited and blessed that they're coming.