Sunday, June 21, 2009

Isaiah's Final Round of Chemo! - Round 6


We'll head up to Duke early tomorrow morning for Isaiah's last round of chemotherapy! While this will be the last round, we're still waiting on the results of the genetic test. We're hoping to get the results by the end of August. Isaiah has been very strong through the entire battle and continues to do great. We can see the effects from the chemo lasting longer. His ANC (ability to fight off infection/composite of your white blood cell count) was very low last week, requiring an unscheduled blood test this past Friday. The results from this past Friday were the bare minimum to receive chemo. His levels most likely continued to climb since Friday, so we'll be good to go tomorrow morning.

I've learned a lot since Isaiah was diagnosed with Retinoblasoma in December. I've learned that kid's are resilient and adapt very quickly to new surroundings & situations. The medical staff at Duke Children's Hospital & the Duke Eye Center are absolutely a God Send. Our family and friends have carried our family through - from bringing dinner over, watching our kids or even our pets while we take Isaiah to Duke, helping us out with expenses. My insurance company has been very helpful with coverage, despite a few minor issues finding an anaplastologist to make Isaiah's fake eye in February. Levi's preschool teacher and the entire preschool staff was our greatest means of local help since neither mine or Erica's family live in North Carolina. We started going to the church where Levi went to preschool, and have been there a few times since January. We initially had a couple folks from the church come and visit us. Unfortunately we weren't able to go to church much due to Isaiah's blood counts and how susceptible he is to getting sick. When we asked for help, family and friends were always there. Our prayers were answered: Isaiah has done great through his treatment requiring very little extra medical care and not requiring a transfusion. Please continue to lift Isaiah up in your prayers. The 6th round is his last!

What Next: In the short term, Isaiah will continue to have his blood checked. We'll find out tomorrow what appointments there will be in the next couple months. Isaiah will also have his port taken out, requiring another surgery. He'll continue to have EUAs (examination under anesthesia) to check his right eye and make sure it is still cancer free. We'll be able to confirm/deny whether cancer will develop in his right eye when we receive the genetic results. He'll also go back for several CT scans over the next couple years and will get regular blood checks to make sure there is no leukemia (a rare but negative development from receiving chemo). The appointments will be more frequent in the near-term and will start to go longer after about 6-12 months.

We're getting ready to move back to Georgia. We've lived in North Carolina for the past 3 years - and in Florida for 2 years before that. Its time to get back home and close to family. We'll probably move around the third week of July. I start my new job at the beginning of August. I'll continue to update the blog until I deploy early this fall. Hopefully Erica will pick it up - I'll be out of country.

I'll post another update on Wednesday. I removed a portion of an earlier post requesting help - we're doing much better now. If you still want to help please make a donation to the National Children's Cancer Society, Make-a Wish Foundation, or the Ronald McDonald House to help other families who are going through a similar and more often than not, a more difficult time than we are.

Children's Hospitals all over the country give kids toys, coloring books, music CD's, computer games, etc that are dontated by people like us. These toys are usually given out on birthday's, as end of treatment presents, or on a rough day. These kids are away from their home, fighting for their lives, and under an immense amount of emotional and sometimes physical pain. Their parents are also struggling, sometimes in simply making ends meet, paying for gas to get their kid to treatment or finding a place to stay. There are organizations that help - however we can provide gift cards for gas, Target, Wal-mart, etc to assist these families while they are away for treatment. I encourage anyone reading this to find a way to either volunteer or donate. Contact a Social Worker at a Children's Hospital near you to find out.

God Bless,

Damon

Sunday, June 7, 2009

Update - Isaiah's 5th Round & Make A Wish

Its been difficult to find the time to get to a computer to update everyone. Isaiah is doing great! He completed his 5th round of chemotherapy on May 23-24 and has been doing great. He still gets pretty sick after chemo for a day or two. His blood counts were really high the day of chemo and last Monday, so he may be able to get through the entire process without needing a transfusion of platlets or hemoglobin. Isaiah has been having fun, running around with Levi and simply having fun being a boy. He's lost some weight and usually doesn't have a good appetite. We're expecting him to gain the couple of pounds he's lost in July once the chemo from the 6th round is out of his system.

We're still planning to move back to GA. I have a couple more things I need to do before I get a start date for the job in Columbus. Our house is on the market - but we haven't had much luck with showings. The move may have to be delayed until January due to work obligations here in NC. There are lots of wildcards that impact the 'when' we'll move. We are looking forward to being closer to family after everything that's happened. Erica will start school to get her nursing degree once we're relocated. Once Erica is done with school, I'll apply for medical school to become a doctor. Being a doctor is something I've always wanted to do, but moreso since Isaiah was diagnosed. I'll have to take Biology, Physics, Biochemistry & Chemistry and take the MCAT test before I apply - but there are plenty of schools in the southeast. I'm currently studying all four subjects so I'll be better prepared for the MCAT test a couple years from now and be able to get good grades when I take the courses prior to applying to medical school.

Make A Wish: We had a few people from Make A Wish over a couple weeks ago to talk with Isaiah. Isaiah chose to go to Disney World - so we'll be headed down to Orlando for a week at some point this summer. Levi & Isaiah are really looking forward to going down there - I think they're more excited about flying on a plane at the moment.

Erica and I greatly appreciate everyone's help, suport and prayers! We are going to sit down in the next few days to send out thank you cards. Things have been busy with the kids, Levi's school, Isaiah's appointments and work. As always, Erica & I thank everyone for their prayers & support. God Bless,

Damon

Saturday, May 2, 2009

Round 4, Another ER Visit

4th Round of Chemotherapy
Isaiah did well this round. We are starting to see that each round is taking a greater impact on Isaiah and is hitting him a little harder than the last. My Aunt Melissa came to stay with us for this round and helped with Levi & taking care of things while we were gone. Isaiah had an EUA this past Monday morning ... all came back great. Dr. B, Isaiah's Pediatric Optalmologist, is looking to see if his right eye remains cancer free. Dr. B did tell us that the longest he's seen cancer go from affecting one eye to being in both is in a child diagnosed at 2yrs old - Retinoblastoma showed up in his other eye when he was 4. With that said, there is still great concern and need to continually check Isaiah's remaining eye. Isaiah will have genetic testing done at the end of May to confirm if it is Unilateral (usually non-genetic) or Bilateral (genetic). We should hopefully have the results sometime during the summer.
The first day of chemotherapy went okay - the night of the 1st day and into the second day really impact our little guy. Isaiah was getting very sick Tuesday morning from the time he woke up till we got him to the hospital to start his second dose. When we finally got to Duke, Isaiah started getting sick in the waiting area in front of other patients and parents. I could tell the look on 2 couples faces that their children were recently diagnosed and seeing other kids with no hair, in wheel chairs because the chemo makes some kids weak, and seeing my child getting sick - realizing the long and tough road they have ahead. Their look was a look of fear and despair. It took me everything to not break down while holding napkins to my son's face while a nurse ran to get a bucket. Neither Erica or I have yet to deal emotionally with Isaiah's dianosis.
Once in the back the nurses gave Isaiah some anti-nausea medicine. We continue to give him Zofran to help with this.

On Thursday, Erica called me at work and told me Isaiah was running a 102 degree temperature and had a runny nose. I came home and she took him to the local ER. They ran a bunch of tests and gave Isaiah a hefty does of anti-biotics. When Levi woke up the next morning with a cough and Sarah with sniffles, we took the little bunch of three to their pediatrician who said all three had ear infections and strep throat ... all are on anti-biotics.

I'll keep folks updated the best I can.

Respectfully,

Damon

Monday, April 20, 2009

Update 20 April, 2009




Everything seems to be going okay so far. Isaiah was running a low grade fever yesterday and had several dirty diapers by noon, so Erica called his Oncologist at Duke who recommended we take him to the ER. I stayed at home with Levi and Sarah while Erica took Isaiah to the hospital. Isaiah's doctor at Duke had called our local hospital to tell them that they were coming ... and that Isaiah was neutropenic. Isaiah had a room waiting for him when they got there. The ER doctor & nurses took some blood and gave Isaiah some antibiotics in case he had an infection. Because he was neutropenic and was running a low-grade fever Isaiah was transferred to Duke University Hospital late last night via ambulance (hospital protocol). Erica came home and grabbed some clothes and drove up to meet him. Once at Duke, more blood was taken to run cultures/tests.


This morning Isaiah's blood tests came back negative for bacterial infection, his fever was gone, and he was no longer neutropenic. His blood counts were on the rise ... not sure why, I believe someone at the hospital told Erica the anti-biotics could have played a part. This morning we were all going to drive to Duke for Isaiah's scheduled hearing test and CT scan.


The hearing test came back normal. We'll get the results from the CT scan tomorrow. The hearing test and CT scan are part of Isaiah's mid-point check-up since we're done with his third round of chemotherapy. Etoposide, one of the chemo drugs, can damage hearing - reason for the hearing test. The CT scan will check Isaiah's brain and eye orbits for any cancer growth. All normal protocol. Isaiah will have his fourth round of chemotherapy next Monday & Tuesday along with another EUA Monday morning to make sure his right eye is still cancer free.




Beyond all the medical appointments, Isaiah is doing great. He runs around and plays. He looks sick - probably from all the chemo, but continues to act normal. Erica and I regret cutting his hair. I was tired of people thinking my son was a girl, but cutting it all off doesn't look that great right now. His hair will be able to grow back shaggy once all his treatments are over. Levi and sarah are doing great. Levi will finish his first year of preschool at the end of May. Sarah is getting big and smiling all the time. She now prefers to sit up and look around instead of laying down. Bills continue to pile up ... we're praying that our tax refunds will come in soon ... we're also praying that our bankrupt state will be able to pay refunds.




We're looking forward to my Aunt to fly in on Saturday and stay to help while Isaiah gets his 4th round of chemo. We also heard back from the Make-a-Wish Foundation that Isaiah is eligible to receive a wish. Folks from the foundation should be contacting us in the next month or two. We've tried to explain to Isaiah that he can pick anything that he want (to do, receive, etc.). He doesn't quite grasp the concept of getting anything that he asks for at the end of his treatment. He loves the movie Cars and plays with cars all the time ... maybe a Nascar race or DisneyLand.

Saturday, March 28, 2009

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.

Friday, March 13, 2009

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

Friday, March 6, 2009

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.

Monday, March 2, 2009

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

Sunday, March 1, 2009

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.

Wednesday, February 25, 2009

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.






Thursday, February 12, 2009

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.

Wednesday, February 11, 2009

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.

Thursday, February 5, 2009

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 ...

Tuesday, February 3, 2009

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.

Thursday, January 29, 2009

Another Trip to Duke ...

Isaiah and I just got back from Duke. Erica noticed that Isaiah didn't have the conformer in his left eye around lunch. It probably fell out at some point in the past day. I called the Pediatric Opthalmology office at the Duke University Eye Center and then made the 2 hour drive to have another conformer put back in. Four hours of driving for a 2 minute procedure. Isaiah is doing good. We're taking the kids to build-a-bear later this evening to get everyone out of the house before our little man starts chemo on Monday.

Wednesday, January 28, 2009

No Cancer Cells Present in Spinal Fluid!

Dr. B, Isaiah's Pediatric Oncologist called earlier this evening and told us the sample of spinal fluid came back with no cancer cells present. This means that the cancer was only confined to the eye and is not considered metastatic - present in the body and able to spread. Isaiah will start chemo on Monday and Tuesday.

Some may ask why he needs chemotherapy if the cancer is out of him and the spinal fluid showed no cancer cells present ... because there may be a few cells that could grow and cause more deadly forms of cancer elsewhere (brain, spinal cord, bones). Children diagnosed with Isaiah's form and stage of retinoblastoma 20 years ago were usually just treated with enucleation. Unfortanately about 40% of these children died within 5 years due to other forms of cancer caused by retinoblastoma cells being left in the body.

We're taking the best route of modern medicine to ensure Isaiah will be cured and live a long and happy life. Please read my post below from our trips to Duke this past Monday & Tuesday.

27 Jan 2009 - Isaiah has port put in chest ... prep for chemotherapy

As most everyone knew, we took Isaiah back up to Duke University on Monday & Tuesday (26-27 Jan 2009) for a him to undergo surgery for a port-a-cath and a couple other visits. The port was put in Isaiah's chest on Tuesday. He is recovering well, playing and being himself, but can't stand up straight or move around that much. We're giving him over-the-counter Motrin to help with any pain. The port is a little smaller than a quarter and is completely under the skin. The top is soft and will allow one location to administer chemotherapy, IV fluids, and draw blood. The port has a tube that runs under Isaiah's collar bone into a main artery. The medicine will flow from the port - artery - heart - entire body.

Isaiah also had a lumbar puncture to remove a small sample of spinal fluid. The fluid was sent off to pathology to confirm/deny the presence of cancer cells. There is a very small chance (~under 1%) that cancer cells will be present. Chemotherapy is scheduled to start on Monday and Tuesday. Erica, Isaiah, Sarah and I will stay overnight in Durham ... we've had enough of waking up at 3am two days in a row and making the 2 hour commute. Erica's parents will stay with Levi while we're gone.

On Monday we had pre-op screening where Isaiah had basic vitals taken and we were given a tour of the waiting and recovery area. After our tour of Duke's pediatric surgery area in the Children's Hospital, we sat down with a child life specialist who talked with Isaiah, showed him a port, and prepared him mentally for surgery. Our experience at the Duke Children's Hospital was much more enjoyable than our two previous times over at the Duke Eye Center. Not that anything previously went wrong ... the Chilren's Hospital deals with children, so Isaiah was more calm and coped better. After Isaiah was finished with the child life specialist we ate lunch and took a tour of the Pediatric Hematology/Oncology floor where Isaiah will receive chemotherapy. I think this is where reality set in a little more for me, but also made Erica and I feel a lot better. There were other little kids who were going through chemo and radiation. I hate seeing children suffer and having to fight cancer, as I'm sure most people do. There was one little girl that tried to get Isaiah to play cars with her. She was completely bald from her six rounds of chemo. Isaiah is very shy and kept turning his face away. I could tell that she was sad she didn't get to play with Isaiah. Right before we were called into the back, she said she thought Isaiah didn't want to play with her because of the way she looked. This broke my heart ... I told her that Isaiah was shy and it had nothing to do with her ... she was a beautiful girl.

Isaiah's Pediatric Oncologist, Dr. B., walked us through the planned chemotherapy regimen again and answered our questions. When we were done we walked down for Isaiah to have a hearing test.

Tuesday, Isaiah had the port put in his chest and the lumbar puncture. Before we left the house at 4am to drive to Duke, I found the plastic conformer from Isaiah's left eye sitting in his carseat. It probably came out on our drive home Monday evening. The conformer is to protect the implant surgically attached to Isaiah's eye muscles after the eye affected with Retinoblastoma was removed. Our orders from his Opthalmologist stated if the conformer came out to take him immediately to a pediatric opthalmologist who would put it back in. Erica and I told the nurse as soon as we were taken back to prep Isaiah for surgery the conformer came, so an opthalmologist could come over while he was under anesthesia to put it back in. After several calls and talking to a couple of lazy residents and fellows, a resident opthalmologist finally came over and put it back in. Our issue was the couple residents and fellows the nurse or I spoke with wanted another surgeon, doctor, and parent to put it back in. Then we were told that if noone felt comfortable putting it back in, to bring Isaiah over to the Eye Center after surgery. This situation made us angry. All we needed was a trained opthamologist to think about a toddler and get off their rear to walk over and put it back in when Isaiah had no clue or memory of it happening. Isaiah's attending opthalmologist had the resident who gave me lip, walk over and put the conformer back in while Isaiah was still in surgery. There was nothing to worry about in the end.

The surgery went well. I took Isaiah back again to be put under anesthesia. The two previous times for an EUA and enucleation were pretty rough on me. This time was better. The anesthesiologist asked Isaiah if he wanted to go to outer space (his hospital gown had spacemen on it). He then gave Isaiah a "space mask" for him and his piggy. The "space masks" were the masks used to put him to sleep. Isaiah and I walked back to the OR. Shrek was playing on a large flat screen TV on the wall and on a smaller swivel screen right above the operating table. The anesthesiologist told Isaiah it was time to go to the moon, so it was time to put the mask on. He asked Isaiah to put piggy's mask on, which he did. Then we put Isaiah's mask on. The doctor asked if I wanted to give Isaiah a kiss before I leave, which I did. The previous times at the Eye Center, the anesthesiologist seemed very impersonal and wanted me out of the OR once I "did my part". A doctor called back to Erica and I in the waiting room to inform us the surgeon had put the port in and the oncologist was getting ready to do the lumbar puncture. The surgeon and Isaiah's oncologist came out once they were done to talk to us. The entire situation was very pleasant and easier to deal with.

About piggy ... Isaiah carrys a Piglet stuffed animal with him everywhere. Erica bought this for him when he was about 1 year old because he acts just like him, not as melodramatic though. It was very good to see Isaiah interact with the doctors this time and incorporate Piggy.

As I mentioned above, Isaiah will undergo his first round of chemo on 2-3 February. He'll have blood draws every Monday to make sure his white, red, and platlet blood levels are safe. Because chemotherapy will immunocompromise Isaiah, we'll keep having these tests, keep him away from public environments and sick people. Erica and I greatly appreciate everyone's help. It is such a blessing to have great people like you to pray for Isaiah and help us through this. Please continue to keep Isaiah in your prayers and pray for other children going through the same.

Sunday, January 25, 2009

Levi is back home!

I just wanted to put quick update that Levi was back home. He spent the past week with 'Papa and Nana' (aka Grandpa & Grandma). We missed him a lot and are glad to have him back home. He seems a little more indepentant and helpful ... not hesitating to help mom and very proud of his new sister, Sarah. I'm concerned about how this is impacting my little man Levi. He's said a few times he's scared of Isaiah because of his removed eye. Levi and Isaiah have always been very close, granted they're only 15 months apart. I fear that Levi will only be impacted more as Isaiah goes through chemotherapy. I'll ask a woman a Duke tomorrow who specifically deals with providing this kind of advise. Right now, Erica and I plan to keep Levi away from hospitals and seeing his little brother go through chemo. He'll definitely see what's going on at home. We've received a little criticism over this, saying that we can't keep Levi sheltered. These folks either don't have children or haven't had to deal with one of their own kids fight cancer. I include this because I want to keep this blog candid.

Tomorrow morning we're headed to Duke University for Isaiah's pre-op for his port-a-cath, hearing screening, and a tour of Duke's Pediatric Hematology/Oncology Department. We greatly appreciate everyone's prayers and support. Because neither Erica or I have family in North Carolina and since we've been lazy with finding a church since we've lived here, our greatest support locally has come from the parents in Levi's Preschool Class and our neighbors. I don't think there is a way that Erica or I can express our appreciation ... Thank You for all You have done for us in the past few weeks.

Friday, January 23, 2009

Waiting for Monday/Tuesday ...

We found out our appointment times for Monday ... we have to be at the Duke Children's Hospital at 9am this coming Monday morning for Isaiah's pre-op appointment. They'll draw blood and check his vitals (pulse, breathing, etc.) and probably have more paperwork for us to fill out. This is all for Isaiah's surgery on Tuesday where a port-a-cath will be put in his chest in preparation for chemotherapy. After pre-op, we'll visit Duke's Pediatric Hematology/Oncology Department, visit with Isaiah's Oncologist, Dr. B., and have the chemotherapy process explained in detail.

Isaiah will most likely start chemotherapy on 2-3 February, once the pathology report of the spinal fluid comes back cancer free. As I mentioned in an earlier post, if there are cancer cells in Isaiah's spinal fluid, a chance that is highly unlikely given the stage of the Retinblastoma when his left eye was removed, Isaiah will have a stronger regimen of chemotherapy. From what I understand, this is because the Retinoblastoma cancer will have become metastatic and can spread more easily into the Central Nervous System and brain.

I did ask Dr. B what if cancer cells are missed in the lumbar puncture. Dr. B explained that if the cancer spread into Isaiah's body from the removed eye it will be present in his spinal fluid. In the rare chance that a couple cells are present and missed in the lumbar puncture, chemotherapy will kill them. My intent isn't to sound negative - simply to explain what the doctors have told Erica and I - all so you have the same understanding.

On a different note, I've been home for the past 2 weeks taking care of Isaiah and of course Erica and Baby Sarah. My taking care of Erica and Sarah basically translate to getting Erica anything she asks for, making dinner when friends don't bring it by, and keeping the house clean. My mind doesn't do so well sitting at home, that is when I'm not doing the previous mentioned things and playing with Isaiah. I've started planning a fish aquarium, day dreaming about how to redneck my truck up more, playing endless games on my cellphone, watching daytime TV (*put gun barrel to head), and getting an early start to gardening. I put in a garden in our backyard last year and planted tons of vegetables ... all which died last August when I went away on business. This year Erica and I decided to plant wild flowers. Low maintenance and provides Erica flowers to pick throughout the summer. I decided to get an early start today - I bought a bunch of flower bulbs and berry bushes. I bought the wildflowers last week. They'll have to sit inside until it the danger of frost leaves. I'm done with my rant. Because of this I've come up with a list of things I can do while I'm still off from work ... all thankfully involve yardwork.

I've been looking into getting a team together for Relay for Life, a fundraising event for the American Cancer Society. Each team has about 10-15 people, all responsible for setting a monetary goal for the ACS. The relay takes place on 1 May throughout the country, usually from 7pm to 7am. The beginning of May may conflict with Isaiah's chemotherapy, so I may simply decide to donate instead of participate. If Erica and I decide to put a team together we'll look for team members to participate in our area of North Carolina - if you can't participate then we'll look around for your pledge of support. I got the idea from another father's blog, who's daughter is also battling Retinoblastoma. Please stay posted for more news.

Tuesday, January 20, 2009

January 20, 2009 - Tuesday

Isaiah & Dad - taking a break from playing in the snow. Isaiah's eye is looking better .. counting down the days till he's fitted for his prothesis.

Isaiah running in the snow earlier today.

Playing with cars ... his favorite toy.

A bluebird eating berries off our bush and trying to stay warm.


Today was a great day! It snowed last night and into this afternoon in our part of North Carolina, leaving about 4 inches. Highlights of the day was a call from Isaiah's Pediatric Oncologist, feeding a group of Eastern Bluebirds on our porch, playing with cars and in the snow, and cleaning and making dinner.

Isaiah's Oncologist, Dr. B., gave us an initial schedule for Isaiah to start chemotherapy. We'll go up to Duke next Monday and Tuesday (26 & 27 Jan) for Isaiah to have preop and walk us through the chemotherapy regimen. Isaiah will have what is called a port-a-cath put in his chest on Tuesday and have a lumbar puncture AKA spinal tap. The port-a-cath will be connected to his blood stream and be completely under his skin. It gives the doctors and nurses an easy location to administer IV fluids, medicine, and draw blood while greatly reducing the chance of infection and eliminating Isaiah from having to be stuck several times in one visit. The port-a-cath will come out about 4-6 months after chemotherapy is finished. The lumbar puncture will take a small amount of spinal fluid to check for cancer cells. This is because there was cancer present in the optic nerve when Isaiah's bad eye was removed. Because the optic nerve is connected to your brain and central nervous system, checking the spinal fluid for cancer cells will determine if the cancer spread. Dr B. assured us that it was very unlikely for there to be any cancer cells in Isaiah's spinal fluid. God forbid the 'very unlikely' occurs, the chemotherapy regimen will be more aggressive.

Chemotherapy will likely start as early as the first Monday & Tuesday of February (2 & 3 Feb).

Separate from the heartbreaking news above, due to the snow this morning, a group of Eastern Bluebirds tried to keep warm and fed off one of our shrubs near the front porch. Isaiah played with his cars this morning and then watched his Cars movie. Levi is spending the week with Erica's parents. Isaiah is doing good without his big brother, but I can tell he misses him. They've talked on the phone a few times - Isaiah didn't want to put the phone down. Later on in the day Isaiah and I went outside to play in the snow. The little man refused to put gloves on, so our time outside was shorter than I planned. I took a few pictures - you can see that his eye is looking good. There is little to no swelling. Isaiah is completely back to normal. The fact his left eye is missing doesn't look nice, so we've ordered a couple kid styled pirate patches to cover it up until he receives his prosthetic eye in about 8 weeks. The eye patches should get here by the end of the week. For those that may wonder, Isaiah doesn't have to wear a patch to protect it - moreless to protect his self confidence and keep nosey people from looking and asking what is wrong. We only have to apply an anti-biotic ointment to his left eye a few times a day.

Erica is doing great. This C-Section has been the smoothest of the three. She's had no issues with moving around and is still taking it easy. I've taken more of a role of cook and cleaner so she can focus on healing and take care of Sarah. I cooked chicken marsala and spinach/almonds for dinner. Sarah is also doing great. She's quiet, but lets you know when she's hungry. She opens her eyes and looks around at the big world in front of her. Its great to have a daughter finally!

Receiving the news that Isaiah will have to undergo chemotherapy has been the hardest for us to deal with. We've been blessed to have such wonderful family, friends, and neighbors. To all who have sent cards of support, cooked us dinner, prayed for Isaiah and our family, and helped us out, Erica and I greatly appreciate everything you have done. God Bless,

Damon

Sunday, January 18, 2009

Birth of Sarah Rebecca & Pathology Results: Isaiah Needs Chemotherapy




This past week has been extremely busy and marked with high and low points. Our high point was the birth of our daughter Sarah on Wednesday. The low points were Isaiah's surgery on Monday where his left eye was removed and a phonecall on Friday evening from Dr. Buckley at the Duke Eye Center with the pathology results from the removed eye. The Retinoblastoma exited the eye and spread into the optic nerve, but was not found at the point of the optic nerve where it was cut, closer towards Isaiah's brain. Basically, we don't know if the cancer has spread anywhere else, but because it entered the optic nerve, he'll have to undergo 6 rounds of chemotherapy.

I waited a couple of hours to call Isaiah's Pediatric Oncologist on his cell phone. He informally walked me through the chemotherapy regimen, side effects, and intended outcome. The chemotherapy regimen includes 3 drugs: Carboplatin, Vincristine, and Etoposide. We're waiting for doctors from Duke to call us on Tuesday or Wednesday - they'll probably want to see Isaiah at some poit next week to have a port installed. I'm not sure of the specific details on the port, but I do know that it requires another surgery to have it installed. The port will allow IV fluids, and drugs to be given to Isaiah without having to stick him with a needle every time. Chemotherapy could start as early as Jan 26-27. We'll go back every 4 weeks for this 2 day period for each round of chemo.

Because chemotherapy is designed to kill fast growing cancer cells, other fast growing cells in the body suffer. These include bone marrow suppression (low white blood cells and weakened immune system), hair follicals (hair loss), and gastrointestinal tract (nausea and other wonderful side effects). Isaiah will have to have his blood drawn every week to check white, red, and platlet levels to make sure they are at safe levels.

For me, receiving the news above has been the hardest to deal with. Although enucleation takes an eye, it took the cancer with it - Isaiah has recovered quickly and has adjusted really well to only having one eye. Chemotherapy is a long process that isn't pleasant for anyone, let alone a 2 year child. I'm in dire need of a hair cut, but I've decided to wait till Isaiah's first round of chemo and shave my head with him. Our fight will be a little longer than originally anticipated. Erica and I appreciate everyone's prayers and support.

Monday, January 12, 2009

12 Jan 2009 - Isaiah has his left eye removed






Today was a mixture of emotions. We took Isaiah to the Duke Eye Center to undergo a procedure called enucleation - removal of his left eye. He did great this morning and is still doing good. He's very tired and still working off the anesthesia. Isaiah has said he wants the big patch to come off, but we can't do that yet. Things finally hit me emotionally today. I cried after I took Isaiah back for his examination last time - and I did again today. I don't know how to explain everything - its difficult for me to take my youngest son, who looks to me for protection, back to an operating room where I have to hold him while he gasps the anesthesia. I feel as if I've violated his trust in me somehow, although I know thats not true. The reality sunk in after I walked away - that my son has cancer, its in his eye, and they're taking his eye - the operating room, the prepped medical gear near the operating bed labeled "ENUCLEATION KIT". The entire situation is very difficult for me to deal with, but I know that Isaiah was already blind in that eye because the tumor was so large and that by removing this eye his life was saved. I apologize for those who didn't want to read this - the below information is what you're looking for.

As I mentioned above, Isaiah is doing good. We'll go back tomorrow morning for a checkup and bandage change, then again in 3 weeks for another examination under anesthesia (EUA) to fit him for his "fake eye". Dr. Buckley attached an implant to Isaiah's eye muscles, so his "new eye" will have near natural eye movement. This implant will stay with Isaiah throughout his life. He will probably have to have a couple "fake eyes" as he grows. His "fake eye" will be like a giant contact lense that will fit over the implant. We'll find out later this week if chemotherapy is needed. The decision will be based on whether or not cancer cells are present in the optic nerve, indicating a higher risk that the cancer could have began to spread at a microscopic level to his brain. He has a 10% chance that he'll have to undergo chemotherapy, based on statistics of many other children diagnosed with Unilateral Retinoblastoma. If this happens - any remaining cancer cells will be killed; Retinoblastoma is easy to kill with today's cancer treatments and the human eye in all its splendor keeps the cancer well contained.

Sarah, our newest addition to the family, will come into the world Wednesday morning. Erica and I really appreciate everyones thoughts and prayers. If we haven't talked to you or written you back, please know that we are busy and we sincerely appreciate all the support we have received.

Tuesday, January 6, 2009

5 Jan 2008 - Update, 2nd Trip to Duke


Yesterday, Monday 5 January 2009, was a great relief for Erica and I. We took Isaiah to Duke University Medical Center where he was examined under anesthesia (EUA) and had a CT scan. The doctors did a few scans of Isaiah's left eye to see the full extent of the Retinoblastoma and make sure his right eye was okay. The CT scan was performed to look at the orbits of his eyes and brain to see if the cancer had spread outside his left eye. The full prognosis so far is that the Retinoblastoma tumor in Isaiah's left eye is very large and has completely taken over and occupies the entire eye. Our relief was that the cancer was simply confined to his left eye. Isaiah's right eye, orbits, and brain are completely free of tumors and are normal.


Erica and I decided to have Isaiah's left eye removed once we were presented a couple of options for dealing with his case of Unilateral Retinoblastoma. We decided this was the best option to battle the cancer because Isaiah is already blind in his left eye and will not regain vision even if the tumor is shrinked using radiation or chemotherapy. The other options significantly increase his chance of developing leukemia or other cancers throughout life. If the tumor was smaller and Isaiah's vision could have been saved, we may have decided to use other treatments.


Isaiah will have his left eye removed on Monday 12 January; a process called enucleation. During the surgery, he'll have a plastic, rubber, or coral ball put in place of the lost eye. His eye muscles will be attached so his "fake eye" will have near natural movement. We'll go back to Duke Eye Center the day after surgery for a checkup. Three weeks after checkup, Isaiah will be put back under anesthesia for another examination and be fitted for his "fake eye" by an ocularist. Isaiah's "fake eye" will look exactly like his right eye and will be ready for him about 4-6 weeks after surgery. He'll have to wear protective glasses throughout childhood for protection and preserve his vision.


Once Isaiah's eye is removed it will be sent to pathology to examine the optic nerve. There are three situations which will determine if he needs chemotherapy. If cancer cells are in Isaiah's optic nerve, he'll have to have chemotherapy, probably about 5-6 rounds. If the cancer went down close to the optic nerve and they believe there is a chance some cancer cells may still be present in Isaiah's system, then he'll most likely have 1-2 rounds of chemotherapy. If the cancer stayed in the eye and there are no cancer cells in the optic nerve then Isaiah will not have to go through chemo and simply have to deal with frequent checkups till he's about 5-6 years old.


Isaiah will have to go back to Duke for an EUA every three months, probably for the first year. As time goes on, the duration between EUA's will extend to every 6 months and will probably stop when Isaiah is about 5 or 6 years old.


We are rejoicing at the news we received yesterday because the cancer is just in Isaiah's left eye - take his eye out and remove the cancer, with chemotherapy being a possibility. Please take a look at the picture - the top image is of Isaiah's right eye, the bottom is of his left. You can easily see that the tumor completely takes up the left eye.


Because Retinoblastoma has can develop due to a genetic abnormality, Duke genetics specialists will be doing a genetic study to confirm/deny if it can be passed to Isaiah's children. This will take a few weeks. Baby Sarah will be checked at birth for Retinoblastoma and will have frequent eye examines until we confirm it is not genetic.


Levi has been a great big brother through the entire process. Although he's three and a half years old, Levi has a good understanding of what is going on with Isaiah. We told Levi when Isaiah was diagnosed with Retinoblastoma, that his little brother's eye was sick and we were going to take him to the doctor to make things better. Shortly after this I walked in on the boys without them knowing I was there and found Levi telling Isaiah with his arm around him that his eye was sick and Mommy & Daddy would take him to the doctor to make it better. Yesterday we told Levi that Isaiah's eye needed to be removed and he would get a fake eye to replace his sick one. Levi has already made our explanation simpler by explaining what was going to happen to Isaiah. I couldn't be more proud of how he has managed and coped with everything.


Isaiah has coped just the same. Although he doesn't fully understand what's going on, he has expressed himself when going into doctor's offices or being poked & prodded for vitals. He'll grow up having very little memory of what is going on now and he is already learning to cope with vision on one eye. Just having one eye will not impact his life - well, he won't be able to be a commercial pilot or join the military (darn). I've come across other kids through research who only have one eye due to Retinoblastoma and are golf prodigies soccer stars. The important thing is that we raise Isaiah the same as we are Levi, without showing favoritism, instill good values, and foster self confidence.


Next week's schedule will be busy. We'll be up at Duke on Monday and Tuesday for Isaiah's surgery and follow-up. Erica has her pre-op appointment on Wednesday for Friday's scheduled C-Section to welcome our daughter Sarah into the world. There is a possibility that the C-Section could be moved up to next Wednesday - we're waiting on Erica's doctor to give us a call back to confirm. We appreciate everyone's support and prayers.

Saturday, January 3, 2009

What is Retinoblastoma?

The below information is a good rundown of Isaiah's condition. If you want to learn more or have questions please let me know. There's a lot of good information out there if you search Google or go to the links listed below. Included is a page that provides more background on Isaiah's pediatric ophthalmologist - who we'll meet on Monday 5 Jan. The below description I copied from another father's website, who's daughter has the same illness.

According to the Retinoblastoma.ca site:"Retinoblastoma (RB), is a rare form of eye cancer that affects the retina of infants and young children. It occurs in approximately 1 in every 20,000 births. About 300-350 children are diagnosed with RB in the U.S. every year, about 5,000 woldwide. RB is found equally in all races and genders. About 60% of the children with retinoblastoma will have tumors in only one eye. This is referred to as unilateral retinoblastoma. The remaining 40% will have multiple tumors found in both eyes. This is referred to as bilateral retinoblastoma. RB can range dramatically in severity. No two cases are identical nor are they necessarily managed in the same way. A number of different treatments are available to children with RB. The severity and location of the tumors will determine which treatments will be suggested. With early detection and modern medical care, the survival rate for children with RB is 96%. Ongoing research and new treatment developments are allowing an increasing number of affected eyes to be saved and are maximizing the visual outcome and quality of life of each affected child."http://retinoblastoma.ca/whatis.htmI thought that this definition was pretty good. Other retinoblastoma sites and wikipedia have similar definitions. The breakdown of Unilateral/Bilateral varies from 60%/40% up to 75%/25% but the rest of the definition is pretty consistent with other definitions out there.

http://www.onconurse.com/factsheets/child_retinoblastoma.html
http://en.wikipedia.org/wiki/Retinoblastoma
http://retinoblastoma.com/retinoblastoma/
http://www.dukeeye.org/doctors/buckley.html

December 30, 2008 (Tuesday)


Trip to Duke University Medical Center

Below is an email I sent out to family and friends just after Isaiah was diagnosed with Retinoblasoma. Right now, Erica and I are anxiously waiting till Monday Jan 5th when Isaiah goes back to Duke for Examination Under Anesthetic (EUA) and a CT scan. I've done a lot of research, some of which I'll post separately. Right now we're praying that Isaiah has a case of Unilateral Retinoblastoma that is sporadic - basically we're hoping its just going to effect his left eye and is not genetic. If its not genetic, then it will significantly decrease Isaiah's chances of developing other cancers throughout his life and passing the same genetic predisposition along to his kids.

We woke up at 5AM. Isaiah laid in our bed watching cartoons while Erica and I got ready. Erica noticed the pupil in Isaiah's right eye (good eye) was dialated normally so as to take in light from the dark room, while his left pupil was normal size - later that day we would learn that Isaiah was most likely blind in his left eye. Our neighbor came over to watch Levi, who was already awake and watching mindnumbing Spongebob downstairs.

Erica, Isaiah, and I arrived at Duke early and ate breakfast in the hospital's cafeteria. Isaiah was seen at the Duke University Eye Center in the Pediatric Opthamology office by Dr. L who dilated Isaiah's eyes, performed an eye test using pictures, and tried to cover up Isaiah's left and right eyes for a vision check. Dr. L asked who had referred us and the history of Isaiah's case after the examination. When I mentioned that he was "diagnosed" with a congenital cataract, she looked at us and said that the "diagnosis" was wrong, and Dr. L believed it to be a tumor called Retinoblastoma. She then went into a good description of the cancer, a term she didn't use, and said she thought she saw visceral seeding of the tumor in Isaiah's left eye. She thought that Isaiah had no vision in his left eye and that the tumor has caused Isaiah's retina to completely detach. Dr. L said that Isaiah would need to be seen on Tuesday 5 Jan by Dr. Buckley and a pediatric oncologist to do an EUA and CT scan to officially diagnose the cancer and provide a treatment plan.

Dr. L did say Isaiah's left eye would have to be removed, a procedure called enucleation. All this news still really hasn't hit either Erica or myself. I've done a lot of research on Retinoblastoma in the past few days and anxiously await Monday's outcome.

Right now there is too much going on. Erica is carrying our daughter Sarah - scheduled to be delivered via C-section on 16 January. Levi is still having fun in preschool, and I was, up until this point, scheduled to be deployed back to Afghanistan in April.

Email to family & friends:

Family and Friends, Today, Erica and I went to Duke University Medical Center in Durham, NC with our youngest son Isaiah due to an eye problem that has developed aggressively over the past week and a half. Isaiah was diagnosed with a type of cancer called Retinoblastoma - which at this point has resulted in the retinae of his left eye to completely detach and has caused blindness. Because the tumor is in his eye, Isaiah will lose his left eye and be fitted with a prosthetic eye about 6 weeks after surgery. The next step is examination under anesthetic and a CT scan to formally diagnose the cancer and severity. Then we'll go from there with treatment which will include removal of Isaiah's eye, possibly chemotherapy, and frequent checkups until Isaiah's at least 5 years old - he's 2 1/2 right now. How this developed: Late last week Erica, myself, and Erica's Mom & Dad noticed a glare in Isaiah's eye that looked like a cat looking at you or similar to "red eye" from a camera. We had an appointment with Isaiah's pediatrician yesterday followed by a quick visit with an opthamologist who referred us to Duke this morning. The doctor at Duke told us there are two forms of retinoblastoma - genetic and abnormal development (chance). The genetic condition is caused by a rare recessive gene that either Erica or I could be carriers of and usually results in both eyes being affected. An abnormal or chance development of the cancer/tumor is usually confined to just one eye. The good news is that Isaiah will be treated by Dr. Buckley (info included at the bottom) who is one of the best doctor's in the U.S. and specializes in pediatric opthamology plus his crew at Duke, one of the best medical schools/centers in the world. Although Isaiah will lose his left eye, he has full vision in his right and is still at a young enough age that he'll learn to adjust. Retinoblastoma is one of the most survivable and curable of all childhood cancers. Also on the plate, our daughter Sarah will be born on Friday 16 Jan, delivered via C-section. Too much is happening right now. I ask that you please keep our family in your prayers as we will you. Please feel free to read the information below. I'll keep everyone posted and let you know what comes of Monday's official diagnoses. Please feel free to read information at the below links to learn more about Isaiah's condition and his doctor. Our Love and Prayers, Damon & Erica

December 29, 2008 (Monday) - Trip to Pediatrician & Opthamologist


This morning Erica and I took Isaiah to his pediatrician - Levi in tow. We waited about 45 minutes in the patient room till the doctor finally came. The boys were tired of playing with cars and wanted to go back out in the waiting area where the cool germ ridden toys were. Isaiah's pediatrician looked at his eyes, became concerned, and said he needed to be seen by an ophthalmologist as soon as possible. She booked us an appointment with an ophthalmologist that afternoon. Erica and I decided to take the boys to the mall while we waited a few hours till the appointment time. We window shopped, let the boys ride on the merri-go-round, and ate some 'Five Guys' burgers.

At the opthalmologist's office, Isaiah's eyes were dialated and examined. The doctor again asked if Isaiah had had any recent head trauma - no again. Erica told the doc about how quickly the opaque glare had progressed and our urgency to figure out what was going on. Isaiah wasn't cooperating very well with covering his right eye ... which will be explained in the next post. The opthamologist stated it could be a tumor, but he had to make sure. After the examination he said he wanted to refer us to Duke University Medical Center in Durham, NC, a 2 hour drive from our house. When I asked the doctor directly what he thought was wrong with Isaiah's eye, he said he believed it to be a congenital cataract, which would require surgery - his referral was to a hospital experienced in Isaiah's case. The appointment at Duke was booked the next Tuesday morning. We went home and struggled to find someone to watch Levi for the day - thank God for blessing us with great neighbors.

Erica and I went home relieved believing that Isaiah had a cataract, woul dundergo simple surgery and would be fine. I looked up a picture of a kid with a cataract on the internet - it looked similar to Isaiah's eye.

December 24-26, 2008 - Isaiah's Family notices an opaque glare in his left eye

About two weeks ago Isaiah's mom, Erica, noticed an opaque glare in his left eye. She didn't think much of it because it caught her eyes quickly and thought it was light reflecting. Today as we were waiting for Erica's Mom & Dad to arrive for the Christmas holiday, the opaque glare became prevalent for his us to notice. We talked about it off and on for the next day or two.

On Friday December 26, Erica called Isaiah's pediatrician and made an appointment for Monday 29 December. While the family was sitting around late this morning, Erica and I decided to take Isaiah to an urgent care clinic. We were starting to get concerned because the opaque glare inside Isaiah's left eye was starting to get worse. While I wasn't expecting to get definitive answers, at least having a doctor look at my child would settle my nerves. When the doctor finally looked at Isaiah he asked if he had had any head trauma in the past week - of course not. He prescribed some eye drops to alleviate any irritation, recommended we see an ophthalmologist or his pediatrician as soon as possible, and sent us on our way. The doctor did his job and calmed our nerves enough to get us to Monday.