Getting Ready for Round 3!

I use the exclamation point on the title because Isaiah's treatment is flying by! I haven't updated the blog as I promised I would. There are a couple factors why: I work longer hours during the week so I have off on Mondays and when I am home from work I don't want to get back on another computer from having sat at one most of my day.

Isaiah has been doing great! So good in fact Erica questioned whether the chemo was even working. His blood counts have all been at the low end of normal. We did have a scare last week when his hemoglobin count was read wrong over the phone to us, which then had us drive to Duke thinking Isaiah would have to have a transfusion. The nurse drew his blood and told us his levels were good.

His prosthesis looks great. You can hardly tell unless you look at him a certain way, The color is sometimes off. That's because Isaiah's good eye can change color from dark blue to a gray/greenish blue. Most of the time his eye is the latter color.

My dad flies in tomorrow around noon and will be with us till late next week. I'm looking forward to seeing him. After several trips out to Nebraska he's finally making the trip.

I applied for a job back in Georgia. Erica and I plan to put our house on the market soon ... we have to paint and make a few minor repairs (door molding, window screens, carpet cleaning ... all damage caused by our wonderful pets). After everything that's happened to us over the past couple years it will be nice to live closer to family. I will probably interview in late April/May and if accepted won't move till late summer.

Of course Isaiah goes in for his fourth round of chemo on Monday/Tuesday. Two more after that. Sarah continues to grow and is smiling and cooing a lot now. Sarah's eyes were examined the week before last for any evidence of retinoblastoma ... the tests came back negative. The opthalmologist mentioned they wanted to do an EUA (examination under anesthesia) when she's 6 months old. Because retinoblastoma can be both genetic and sporadic, the EUA will help in early diagnosis with Sarah ... BUT ... base don the way the cancer presented itself in Isaiah, it is most likely a sporadic case. We have a genetics appointment in May where we'll receive a definitive answer. We're hoping the results will come back before they want to put Sarah under.

I'll try to keep everyone updated. If you really want updates feel free to call.

Blood Counts from Monday 9 March 2009

We just received Isaiah's blood counts yesterday. Apparently there was a hold up somewhere in the chain. Isaiah continues to do well. He's still playing and running around like he usually does. The color in his prosthesis is off a bit so we'll schedule an appointment for it to be changed. Mr G, Isaiah's ocularist or Anaplastologist, hand painted the eye before putting it through a kiln. Isaiah's hemoglobin is the lowest it's been since starting chemotherapy ... 8.7. We're hoping it doesn't go down below 8 - he'll have to have a transfusion to bring the Hgb count up. We'll find out next Monday. If it's lower then we'll probably be up at Duke on Tuesday.

Monday's counts:

Hgb: 8.7
Platelets: 168
WBC: 4.1
ANC: 1066

Round 2 - Day 4 ... Everything is Going Well!

Isaiah hasn't acted sick or even been sick this round. The worst days, as Isaiah's Oncologist told us to expect, are days 4-7. We continue to pray that Isaiah will stay healthy and not feel the negative effects of the chemo. I understand the normal effects, I simply don't want my child in the hospital again like he was after the first round.

Erica and I took Isaiah to Florence, South Carolina yesterday for him to be fitted for his prosthesis. The fitting only lasted about 20 minutes, with the Ocularist only messing with Isaiah's eye a couple of times. The prosthesis will be ready by Tuesday. We're driving to Greenville, South Carolina on Tuesday to pick it up.

This weekend is going to nice outside. I've been waiting for warmer weather to hit us so I can let the boys play in the backyard and I can get some work done outside. I plan to extend the garden, put in a large flower bed along the back of the house and deck, and plant a truck load of trees, bushes, and flowers. If I'm pretty productive I'll put up the bird feeders and bath and put lattice around the bottom of the deck.

We'll get Isaiah's blood results Monday afternoon - I'll update the website once I get them.

Round 2 Chemotherapy - Day 1

We're sitting in the Day Hospital with Isaiah, who's almost halfway through today's round of chemo. He had an EUA at the Eye Center this morning to make sure everything was still normal in his right eye ... everything was good. Please pray that Isaiah doesn't get sick from this round and stays home away from theER. I'll write more tomorrow when we all get home ... my cell phone is not the best blog updater. Here are today's blood lab results ... much higher than last Monday.

Hgb: 9.8
Platlets: 435
WBC: 8.2
ANC: 1796

Why Our Country's Health Care System Needs Restructuring

Because our medical bills from Isaiah's surgeries and treatment have started to pile up, I wanted to vent about the greed I've seen in our healthcare system. One surgery that Isaiah had was to put a port-a-cath in his chest so there is one central line to administer chemotherapy, IV fluids, and draw blood from. Duke University billed our insurance company $9748.15 for the surgery, anesthesia, and medicines used. Because Duke is a preferred provider with our insurance company, our insurance company & Duke have already negotiated monetary amounts for hundreds of procedures, medicine, and types of care. This agreed upon amount is $1167.89 - a difference of $8580.26. Duke University Hospital wanted to charge us more than 830% of the amount they negotiated with our insurance company. Duke is not the only healthcare provider who does this. I have bills from several other doctor's offices and hospitals trying to do the same. So I am not targeting Duke - just using them as an example.

Trying to charge the customer almost 1000% more than what they have readily agreed to accept as payment from the insurance companies is absurd. This greed is why our healthcare system is in shambles and will ultimately fail. I am blessed to be the father of three beautiful children, have a gorgeous wife who can put up with me, have an awesome career with a good salary - this same career provides me with excellent benefits. There are families who own businesses and can't afford insurance or who work jobs that can't or don't offer health coverage. Without insurance these same greedy hospitals would charge these families the exhorbant 800-1000% more for the same care they readily accept from insurance companies.

I didn't used to think much about universal healthcare coverage or the surrounding politics. Now I'm forced to see what these companies have tried to charge my family and realize that there are other families who are not "sheltered or protected" by health insurance. I don't have a great plan on how to correct this, nor do I support a certain political parties' plan - I do believe there is a better way to do things that will prevent hard working families like mine from collapsing financially. These families may not have health insurance or not enough, and then suddenly wake up one morning to go to a doctor to find out their two year old child has cancer ... money lost not being at a job to care for their child, medical bills piling up, potential risk of filing for bankruptcy, losing their home and cars. For those that still believe our current way is great please give me a call and I'll send you our medical bills.