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.

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.

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.

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.

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

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.

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.

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.

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.