"It's a fact that children with cancer have higher cure rates than adults with cancer, and I wonder if the reason is their natural, unthinking bravery. Sometimes little kids seem better equipped to deal with cancer than grown-ups are. They're very determined little characters, and you don't have to give them big pep talks."
THREE Years Cancer Free!!!!!
Update August 27, 2008
Brooks had an Examination in Morgantown on August 4, 2008 which showed no recurrence and no cancer.
Brooks continues his love for golf!
This is at Cherry Hill Country Club, Richwood, WV - August 2008.
Compare this photo to the one at the bottom of the page!
In May, 2004 our son Brooks was diagnosed with Retinoblastoma - eye cancer. He has endured numerous surgeries, procedures and chemotherapy. Here, we will try to give you some details and keep you informed. We truly appreciate all the thoughts and prayers we've received. He's a strong little boy and has done very well.
May 12, 2004 – Brooks was diagnosed by Dr. Terry Schwartz in Morgantown, WV (www.wvueye.com) with bilateral RETINOBLASTOMA – a very rare form of eye cancer. Chances are only about 1 in 20,000 that a child will have RB. There are only around 300 cases in the United States per year. His grandmother noticed a deviation (lazy eye) in the left eye and we had it checked out.
In this photo Brooks was around 6 months old. Notice the absence of "red-eye" in the left eye. This is called "Leukokoria". Light is blocked by the tumor and can not reflect off the back of the eye. If you ever see this in a child, have it checked out immediately - it could save the child's life.
He had 2 tumors in each eye. The biggest tumor was in the left eye and was covering his retina so he had, and still has, no central vision in that eye.
May 13, 2004 – diagnosis was confirmed by Dr. Carol Shields in Philadelphia, PA at Wills Eye Hospital (http://www.willseye.org).
- He underwent his first EUA (examination under anesthesia) & had laser surgery & cyrotherapy (freezing treatments) on the tumors
- He also had his 1st round of chemotherapy at CHOP (Children’s Hospital of Philadelphia www.chop.edu) - 2 drugs were used - Vincristine and Carboplatin. Chemotherapy is basically poison administered through an IV to retard tumor growth. The infusion takes the greater part of a day. Having a 9-month old on Chemotherapy is horrifying.
- The strategy was to (1) save his life, (2) save both eyes, (3) preserve what vision he had left in each eye.
June & July – Went to Philly – EUA each time with laser surgery & chemo with 2 drugs each time. Chemotherapy and surgery occurred in the same day - a very long day for a little boy.
June also brought a 6 day stay in Summersville Memorial Hospital because of Neutropenia (low blood counts caused by Chemotherapy). He was on IV antiobiotics most of this time because his immune system was devastated by the Chemotherapy.
August – EUA showed a small recurrence in left eye. The 2 smaller tumors were dead and the last tumor in the right eye was 96% gone but because of the recurrence in the left eye, added a third chemo drug to try to get the recurrence under control. This third drug was Etoposide. The more Chemo Brooks had - the worse the side effects were. He was very strong throughout! He underwent more laser surgery also. These are long days.
September – EUA found the same small recurrence but it was no larger than the August evaluation. The tumor in his right eye that was 96% gone in August was completely gone. But since the recurrence in the left eye was not gone he had his 5th round of chemo with all 3 chemo drugs.
October – EUA found the recurrence in the left eye was growing, not shrinking. Chemo was stopped - the tumor was resistant- other options had to be explored.
- The remaining tumor was sitting on top of the scar tissue where the original tumor had been dying so a freezing treatment, cyrotherapy, was not an option because the freezing treatment would not be able to travel through the scar tissue.
- External beam radiation is a last resort because of the possibility of deformity around the eye, as well as other side effects.
This is Dr. Anna Meadows - the country's top pediatric Retinoblastoma oncologist. She and Dr. Carol Shields saved Brooks' life! www.chop.edu
RADIATION PLAQUE IMPLANT
- Our next step then became a radiation plaque implant. With the radiation plaque implant they send map of the tumor and the eye to a nuclear physicist who specially makes the plaque or chip.
The plaque has 14 carat gold on the back of the plaque to keep radiation from going into the eye socket or other parts of the body, other than the eye. The radiation is emitted forward and very little radiation comes out his eye forward. It is a very concentrated dose of radiation and he had to wear a lead patch to protect the people around him while the plaque was implanted.
The plaque was implanted by surgically stitching the plaque onto the back of the eye where the tumor is and the plaque covered the entire area where the tumor is located. The plaque was implanted on Thursday, October 14, 2004, and removed Monday, October 18, 2004. During that time, Brooks stayed in the hospital Thursday, Friday, Saturday and Sunday nights and he was not allowed to leave his room because he was radioactive.
This photo is during the plaque implant.
Note the lead eye-patch
- The side effects for the radiation plaque implant are that Brooks could lose his clear peripheral vision in his left eye. What vision he has in the left eye may become cloudy and it will always remain cloudy. The biggest risk is loss of central vision in his left eye. However, since he has already lost his central vision this is a perfect solution for his problem. Also, it is a perfect solution for his problem because he has no cancerous seeds floating around in his eye, which would make it difficult to attack with plaque treatment.
- Brooks did extremely well during his hospital stay (Four days in the same hospital room). He is VERY attached to watching “The Wiggles” and we had a computer that played Wiggles DVDs.
December, 2004. EUA showed no signs of cancer. This was our first "No Cancer" report. We were very, very excited!!
February 2, 2005 - EUA in Philadelphia - still no signs of cancer.
May 4, 2005 EUAshowed a recurrence in the right eye. Dr .Shields had to perform a cryo-surgery on the right eye. The right eye was previously his good eye. The surgery may affect his sight. We are very saddened and concerned. This was a major setback.
Best case scenario - no more recurrences and minimal affect on the right eye.
Worst case - more recurrences and less vision preserved in the right eye.
Some troubling statistics:
1 in 20,000 chance of infants getting this cancer.
Even less for Brooks because neither Julia nor I have the genetic mutation that causes the cancer.
20% chance of recurrence of the tumor - Brooks had recurrence in the left eye in October, 2004 and the right eye in May 2005.
The chance of recurrence remains for 2 more years.
Brooks needs luck, thoughts and prayers and we thank you for all of them.
JUNE 15, 2005
EUA showed no recurrence & no cancer! We are very happy - and so is Brooks!!
AUGUST 17, 2005
More good news! EUA shows no recurrence and no cancer!
October 26, 2005
More good news! EUA shows no recurrence and no cancer!
February 1, 2006
More good news! EUA shows no recurrence and no cancer! The last Cryo-Treatment on the right eye recurrence was in May 2005. Dr. Shields tells us that recurrences after Cryo-Ttreatment usually occur within one year. Brooks' next EUA is in June 2006 - it is a big one.
A big relief - no signs cancer!
Continued good news!
Continued Good News!
Continued Good News!
After examination day we take a fun day in Philadelphia.
It usually involves hitting golf balls in Rittenhouse Square.
"If children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up or fight like hell."
This site was last updated 09/10/08