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

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

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

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.

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.