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.

Finding an Ocularist

I've spent a lot of time on the phone lately with our insurance company and various medical practices. Our insurance company has been great and covers most of what we need ... we still have a nice deductible though. Last week's mission was to find a lab or nursing agency that would draw blood from Isaiah's port. That mission was accomplished when I found a local infusion company with RN's who make home visits. This week's mission was to find an Ocularist to make a prothesis (fake eye) for Isaiah. Isaiah's Opthalmologist at the Duke Eye Center uses Carolina Eye Prosthetics in Burlington, NC, but unfortunately they don't accept our insurance. A nice woman at Carolina Eye Prosthetics told me there is no ocularist in North Carolina that accepts our insurance, despite having one of the larger providers. I spent a little more than an hour on the phone this morning with an insurance representative who ended up conferencing in a doctor who provided a company in Greenville, SC. This 'Ocularist Clinic' accepts our insurance and does not charge a fee to travel to Duke University to get a proper fit for Isaiah. Great news because Carolina Eye Prothetics was about $700 more expensive (our minimum out of pocket expense).

I'm waiting for a call back from the senior ocularist early next week who will ask some questions and hopefully schedule an appointment. I would ultimately like the ocularist to come to Duke when Isaiah is already under anesthesia (CT scan, EUA) to get the fit. I'll wrangle that next week with insurance, Duke, and the ocularist. We'll then travel to Greenville, SC for a day for the final fitting. This will probably happen sometime in late March to mid-April.

I previously posted that Erica and I were concerned with our oldest son Levi and his reaction to Isaiah not having an eye and going through chemotherapy. Levi has spent a little time in Georgia with Erica's parents after Isaiah's eye was enucleated and for his first round of chemo. Our concern was that Levi was scared of Isaiah's eye and wouldn't play with him. Isaiah would try and play with him with Levi responding in anger as a result of him being scared. Since we've been home from the hospital and a little before Isaiah was admitted, the two boys would play together ... there are no more issues. Levi has even said he isn't scared of Isaiah's eye anymore - a miracle probably worked by Erica's mom & dad when he was in GA. We're still explaining to the boys that Isaiah will get a new eye soon, but he won't be able to see out of this one and that Isaiah has to see the doctors and take medicine to get better, but the medicine will make him sick.

I mentioned earlier that chemotherapy targets fast growing cells in the body resulting in lower blood counts, which makes it harder for the body to clot blood (injury) and fight off infection (white blood cells). I plan to post detailed information on this in the coming days to educate family and friends on what Isaiah is going through and also prepare everyone to understand the blood counts I'll put on here every week.

Isaiah and I shaved our heads on Friday before he started getting sick ... so we're now sporting skinhead style haircuts. At this point, Levi doesn't want me touching his hair. I don't blame him ... he has two perfect results of me & hair clippers around him every day.

Second trip to the Emergency Room - Admitted to the Hospital

Well, I haven't been on the computer in almost a week. Last Friday Isaiah was very sick and wasn't able to keep any fluids down. I called the Pediatric Oncologist on-call at Duke who recommended I take him to our local ER to get some fluids. Isaiah and I arrived at the hospital around 10:30 Friday night and were admitted around 3am on Saturday. Isaiah stayed sick until about Tuesday evening and then started to feel better. He was able to hold foods down. We stayed so long because Isaiah didn't want to drink. The little guy only drinks milk at home and was on the BRAT (Banana, Rice, Apple Sauce, & Toast) diet ... and he only likes bananas out of that selection. He started feeling a lot better Wednesday night and this morning drank about 9 ounces of milk and was able to be discharged. The doctors think he had viral stomach bug before chemo and then had his first round - both played a number on his gastrointestinal tract. That said, every round should not be like this. Dr. B, Isaiah's Oncologist mentioned that he's never had a kid react to chemo this way, which led to is conclusion of the virus/chemo team up I mentioned above. We're all back at home and will be into our normal routine as of tomorrow.

Trip to the Emergency Room

Isaiah hasn't been able to keep any food or fluids down since Tuesday. Since he's been pretty timid and dehydrated, Erica called Dr. B, Isaiah's Oncologist at Duke to tell him what was going on. He called our local emergency room to let them know we were on our way - he needed to get fluids via IV because he refused to eat or drink (despite a desire to). Dr. B did say that he has never had a kid have this kind of reaction to the dose of chemo Isaiah received, we're hoping it was either a stomach bug or a combo of a bug/chemo. Regardless, we were at the ER for about 6 hours today. They gave Isaiah about 6-700 ml of IV fluids to get him hydrated, some more zofran, and waited till he could hold down some apple juice. Isaiah started acting more chipper as soon as he had the apple juice and the majority of the IV fluids. He's lost about 2 pounds since Tuesday, so not being able to hold food down has had a pretty major impact on him - 27 Ibs to 25 Ibs. We hope that the nausea is over (we keep praying and giving him 2 types of anti-nausea medicines).

I mentioned earlier that Isaiah has to have weekly blood draws check his blood counts (white/red/platlet) to make sure they don't go too low. If they go to low, then he'll need a transfusion. I've been working the past 2-3 days trying to find a company/lab in Fayetteville that will draw blood from Isaiah's port-a-cath, vice poking him in the arm. I finally found one today. It was an interesting twist how it happened. I called a nurse I talked with yesterday from a home health care company who told me another nurse with pediatric experience could come to our home to do the blood draws. Unfortunately we would have to provide the equipment (needle, tubing, saline, heparin [anti-coagulant, so blood doesn't clot in the port]). She provided me a number for an infusion company where I could buy all the needed supplies from. I called the infusion company this morning to find out that they have their own nurses who specialize in infusion/ports/blood draws/IV's. After a couple calls to our insurance company and Isaiah's Oncologist, I set up a reoccuring appointment with the local infusion company to come to our home and draw Isaiah's blood. The nurse will take it to a lab, who will then fax all results to Duke. Insurance covers it all ... I'm sure we have a normal copay though.
Back to watching Sponge Bob ...

First Round - February 2-3, 2009

We just got back from Durham where Isaiah received his first round of chemotherapy at the Duke University Children's Hospital. He's doing good. He's laying on the couch right now watching a movie, taking it easy. He got sick last night right after Monday's round and has taken it easy since then. Although it's posted below, Isaiah was given three chemotherapy drugs: vincristine, etopocide, and carboplatin. Days 4-7 (post chemo) will be his worst. He'll be the most immunocompromised from day 7-10. We'll probably shave our heads tonight. I'll go first and show Isaiah it's cool to look like a goofball.

Duke has a Day Hospital for their Pediatric Hematology/Oncology office. It has about -6 rooms on the outside with a bed, tv, and a couple chairs. these rooms are along the edge of the day hospital. There is a line of 'hospital lazy-boys' with rocking chairs posted in front of flat screen tv's to watch movies. Isaiah started off on Monday in a chair and then was moved to a room. Only one parent can be with their child when they're sitting in a chair, but both can go in the rooms. There was a guy walking around today with a guitar and playing music for kids. He stopped by and talked with Isaiah and then played a couple songs.

We also received a call from the Eye Center. They want to see Isaiah next friday for an EUA (Examination Under Anesthesia) to see how well his left eye is doing and make sure his right eye is normal. I believe he'll also be fitted for a prothesis during this time, but I'm not sure.

I'm starting to worry about how we'll fare over the next six months ... everything from how Isaiah will do, finances, time off from work, our other children. Right now we hope and pray our local hospital in Fayetteville will be able to draw blood from Isaiah's port. A lot of medical facilities won't draw blood from them because they're foreign and lack the equipment and know how. If we can't get his blood drawn locally, Erica or I will have to drive Isaiah up to Duke every Monday for it to be drawn. I would rather drive 2 hours one way to have his Oncologist's office draw the blood from his port, than have Isaiah get poked in his arm every week.

Isaiah got sick this evening. I cleaned him up and Erica ran to the pharmacy to pick up his Zofran - antinausea medicine. They messed up the order, so she had to sit there while it was filled. I am very grateful that our insurance covers the generic form of this drug.

I decided to add this portion - this past Sunday, Erica and I, kids in tow, went to the church where we enrolled Levi for preschool last year. Tonight a few people from the church stopped by to see how we were doing and prayed with us prior to leaving. This meant the world to Erica and I. We've visited a couple churches and found they weren't for us. Either their message on the particular Sunday we attended was "Give more money, we need more people" or the congregation gave a pretentious, arogant vibe. Our experience with the church we attended Sunday was great. It means a lot to have people from church stop by and see how we're doing ... much better than receiving a letter in the mail with the pastor's signature xeroxed at the bottom. I hope that we can continue to attend this church, grow a deeper relationship with Christ, and build a stronger foundation here in Fayetteville, both spiritual and physical.