Blake’s Battle

Blake is 19 years old. He was born on March 2nd. Blake graduated from Hickory High School in 2007. Blake was employed and was attending a local community college.

Six months after Blake graduated from high school; in January 2008 Blake began to complain of lower back pain. He continued to work and go to classes. Between the end of January and February 2008 Blake had visited the Emergency Room three times and a family practitioner. He was diagnosed with lower back pain, sciatica, etc… We insisted that x-rays and blood work be taking to rule out what was becoming an increasing problem for Blake. Nothing showed up, everything appeared normal. We were then advised to make an appointment with a rheumatologist. Anyone that has recently made an appointment with a specialist knows that it often takes several weeks to actually get in to the see the doctor. We also decided to make an appointment with an orthopedist.

On February 25, 2008, Blake went to the rheumatologist. On February 27, 2008 he went to the orthopedist…where finally someone got the ball rolling. By this time Blake had deteriorated. When the orthopedic doctor saw Blake he immediately made an appointment for an MRI on the following day and a doctor’s appointment with orthopedic doctor that specializes in the spine. On February 28, 2008 Blake went to the MRI appointment. After being on the table for four minutes the technician came out and told me, his mother, that Blake could not tolerate the pain of lying flat on the table. Since we had been to so many doctors and they had prescribed an array of pain medications, which I conveniently had in the back of my car. I went and got some for Blake. After two rounds of medication, Blake was finally able to get through the MRI.

Later, that day we took the images and report to the spine doctor. There in a doctor’s office on February 28, 2008 in the early evening a doctor tells Blake and me that he has CANCER. Blake, my Blake, the 18 year old who just graduated from high school six months prior, who lost his Grandfather seven months prior to lung cancer. Blake who held his Grandfather’s while he was dying in a Chesapeake hospital. Blake who is healthy, working, going to college, never smoked, never drank, never used drugs…a great kid that never gave me one minutes problem.

Blake turned 19 years old on March 2, 2008 and on March 4, 2008 Blake had a biopsy at Chesapeake General Hospital. On March 5th, the results were in and Blake was diagnosed with a Giant Cell Tumor of the Sacrum. Blake’s doctor explained that this was very rare and that we should seek help at an academic college. On March 13, 2008 we traveled to Duke University for a consultation. Blake’s surgery was scheduled for March 21, 2008. We traveled back to Duke a few days before his surgery as he did not travel well and his pain had been increasing. We took Blake in through the Emergency Room the day before his surgery as his pain was unbearable. Blake was admitted and his surgery was preformed on the 21st as scheduled. The surgery was very dangerous and vascular and Blake was at great risk for not surviving. During the surgery they attempted to remove the tumor and perform a bone graft. The tumor destroys the bone so it needed to be filled in. One of the biggest problems for Blake is that the sacrum sits at the base of your spine. Nerve ending come out from the spine and are interwoven through holes in the sacrum. Blake’s nerves are now in the middle of his tumor, being compressed, and he is losing bone for stability. Blake’s pain is neuropathic and has affected him from the waist down to his feet.

As we wait to hear whether our child has survived the surgery or not….our child that has yet to live…that is just beginning his life…we are told that he has indeed survived! The doctor tells us that he removed the tumor but was unable to get all the cells as they were on his nerve endings.

Blake was in the hospital at Duke from March 21st-March 27th. We brought him home on the 27th and Blake was a mess. He had been cut from his lower back up to the middle of his back down deep to his spine. As always, Blake never complained…. Two days later, Blake begins to complain of headaches and states that something is leaking out of him. Something was leaking…..spinal fluid… We took Blake to Children’s Hospital and they arrange for a flight back to Duke. Blake is now hospitalized and awaiting surgery to repair the leak and clean the wound. The hospital stay in longer now and Blake has come back with having infections in his bone. A PIC line is placed in his arm and a wound vacuum to aid in the healing of his surgical wound. Blake will now be on IV’s and oral medications. On April 17, 2008 Blake and I travel back to Duke to a clinic appointment…now we don’t stay we run towards home. So on this day in the late afternoon while driving back to Virginia the nurse calls us and instructs us to turn around and come back to the hospital…Blake is in renal failure. Five more days in the hospital.

Blake is home for a few days maybe even a week then develops a fever and is sick. We take him back to CHKD where he is admitted. On May 23, 2008 I call 911 because Blake is in so much pain he can not move. Hospitalized again for five days. Later he was diagnosed with Colitis. Blake was hospitalized at the Children’s Hospital three or four times, I have lost count.

Due to Blake’s diagnoses he will have to have PET/MRI scans every three months for the rest of his life. So in June, we went back to Duke for the scans where something suspicious showed up but it was too small for anyone to be sure. On August 16, 2008 we are back at CHKD for another scan and on August 17th Blake was back in the hospital for five days. This scan was a big concern and the images were being sent to Duke and we were asked to meet with the doctors at Duke to discuss the results.

On August 28, 2008, we went back to Duke to find out the tumor was back at twice its original size and the only option now was to have radiation. The doctor there recommended proton radiation which is not available at Duke or in Virginia. They suggested Massachusetts General and began making the referrals and appointments. Proton radiation is only offered in a handful of states. Our consultation was scheduled for September 22, 2008. One again, Blake’s condition worsened and time was of the essence. We contacted the doctor’s at Duke and we all agreed that Blake could not wait anymore so they suggested that he come back to Duke for traditional radiation. Blake’s father and I spent the day on the phone calling all of the proton radiation centers in the United States to see who could begin treatment as soon as possible. M. D. Anderson in Houston, Texas told us that if we came there on Monday, September 15, 2008 for a consultation they could begin treatment the following week. We made flight arrangements and hotel reservations for September 15th, 16th & 17th, 2008.

What we were not expecting was Hurricane Ike. Out flight was canceled and we debated driving but knew Blake could not handle a drive that long. We caught the first flight available into Houston on September 15th only to find out that the proton center was closed because of the hurricane. We waited it out and they opened the following day. We were told that the radiation is $180,000.00 and most insurance companies to not cover the expenses. Blake was put on the schedule for September 24, 2008 for a PET, a CT and to begin treatment.

We came back home to Virginia to prepare to live in Texas for the next 6 weeks. When we started to make arrangements we found that there was no availability in the hotels either because of workers coming in to clean up and make repairs or because they had been damaged. The electricity was out in most of the areas and was not scheduled to be back on for few weeks. Even the Ronald MacDonald house had been flooded and was closed…and you guessed it…closed for 6 weeks! We found one apartment that costs more than our mortgage here at home but sometimes you have to do what you have to do…so we did! We rented an apartment and a car and started a new chapter.

Within the first week of treatment the doctors were debating whether or not Blake should have chemotherapy along with his radiation or not. They took their thoughts and their recommendations to their board and decided against the chemotherapy. Blake was very scared and upset during this time as he does not want chemo and has been sick of being sick. For six weeks we were in Texas and Blake seemed to be doing well. He slept most of the time he was there but looked good and it seemed that his walking had improved some.

Days before Blake’s last treatment his pain was increasing and his walking looked more labored. Again, Blake suffered in silence I think trying to get those last treatments in. On November 5, 2008, Blake’s last treatment and the day he sees the doctor he reports that he thinks his bone is broken. He is told honey, your bone can not be broken or you would not be able to walk. After the last radiation appointment we are off to the emergency room. Blake’s pain is off the charts…it was horrible to see. The drugs kept on coming…methadone, dilaudid, fentanyl patches, and steroids. There was no room on the actually floors so we spent two nights in the emergency room and then up to a floor. One night there and then the next night he moves again to the pediatric floor.

Blake’s sacrum was in fact broken in half and he has multiple fractures of his sacral bone. Blake was released on November 15, 2008 and we were home the next day. It was a difficult plane ride but there was no other way to get him home. Blake was home for Thanksgiving and we are hoping this is one holiday that he won’t be in the hospital.

December 10, 2008, back to Texas for two days of appointments. Blake’s tumor is about 95% inactive and just the outer edges and a separate cluster of cells light up on the PET scan. The doctors want Blake to consider chemotherapy, cisplatin injections to be specific. It is a shot that you take once a day indefinitely. Blake decided that if in 6 weeks 95% of his tumor essentially died then he would like to wait 6 more weeks and see what would happen.

Blake had a PET scan on January 20, 2009 and had an MRI on January 28, 2009. His doctors appointment is on February 3, 2009 to find out the results……