At the age of four, in 2004 Grayson started showing signs of developmental delays in preschool and displaying some avoidance behaviors. Although he was never a good sleeper it became an ongoing habit of being up in the night. When it came time for Kindergarten in August of 2005 we enrolled him in a Private School with a very structured environment hoping that it would keep him more focused in school. At his Kindergarten physical we found out that Grayson’s vision had deteriorated significantly since his last exam and he needed eye glasses. In October of his Kindergarten year it became clear that the school would not be able to accommodate his needs, so we enrolled him in a school for "Special Needs" with hopes that it would be a better fit for him.
By May of 2006, he began having a harder time at school and just focusing in general. He was having more bad nights and what I thought were nightmares, talking in his sleep about real things. He had some vomiting which the pediatrician thought was the stomach flu, but then one morning after being up most of the night became clearly disoriented. I took him to the ER in hopes of getting more information because I knew that something was wrong. The Doctor on call decided to do a quick CT scan, even though there was no sign of head trauma and that is when we saw the mass on the scan. We spent a week in the hospital running tests; two MRI’s, two spinal taps, and more blood work than we could imagine. We knew it was a brain tumor, but the presentation was rare in that it was a diffuse infiltrative mass surrounding the optic chiasm, hypothalamus, pituitary stalk, around the brain stem; throughout the cerebellum and throughout the spine.
In June, 2006, we had an endoscopic biopsy and confirmed that it was a Diffuse Fibrillary Astrocytoma, with some features of a Pilocytic Astrocytoma, which is typically a slow growing tumor, however his was everywhere. Generally these tumors are removed surgically and then followed by chemotherapy if it is necessary. Unfortunately, he was not a candidate for surgery so we started meeting with Oncologists for chemotherapy regimens.
In July of 2006, within a week of getting our Pathology results Grayson again started showing signs of hydrocephalus, so he had his second surgery to put a shunt/valve system put in his head to manage his cerebral spinal fluid pressure. We started an oral chemotherapy regimen of Temodar at the end of July, and in August he had his third surgery to have a Port-a-Cath central line put in his chest. We could then use his central line/port to draw labs from and also administer chemotherapy through it if we started an IV chemotherapy regimen.
We spent most of the summer of 2006 swimming when he was feeling up to it and trying to have fun while I continued to send his case out to other Doctors since his tumor presentation was so rare. We received opinions from three Neuro-Oncologists and opinions from three Neurosurgeons. Typical protocol was Temodar or Carboplatin/Vincristine chemotherapy regimens. We had hoped the Temodar would start working and at least stabilize the tumor but it continued to grow. Grayson started deteriorating quickly; he was having constant headaches and nausea and vomiting. After a nuclear shunt study, CT’s, and MRI’s showing no sign of obvious pressure we were not sure what was causing the pain. He began living much of his life lying down and if he made it to school he was there with a pillow and a bowl in case he had pain and vomiting.
In January of 2007, an MRI scan showed that Grayson developed a Cerebellar compression, his cerebellum was compressed into tonsils that distended down to his C2 in the back of his neck. The MRI also showed that the tumor was still growing, it was apparent the Temodar was still not enough to keep it stable. We decided that it was time to change to the more aggressive Carboplatin/Vincristine regimen but we could not start it until after the decompression surgery. The decompression surgery would shave down his skull bone and remove the C1 in his spine to allow more room for his cerebellar tonsils, and also alleviate any pressure that was being put on his spinal cord.
In February of 2007, the morning we were scheduled to have his decompression surgery Grayson was in horrible pain. By the time we reached the hospital surgery center he was so disoriented he did not know who I was, actually he thought I was “Kim Possible”. He became delusional and said that “Spider Man was climbing up the wall” and was pointing at him. It was by far one of the hardest things we had been through. He went into surgery and we hoped that the decompression was the answer to his pain and deteriorating condition. Initially he did very well after his surgery, he was walking 36 hours after his surgery and we only spent two days in ICU then went home to get better.
In March of 2007, he started deteriorating again. Another trip to the ER revealed that while he was off his chemotherapy to have his surgery the tumor started growing again, this time much more aggressively. It had grown between his ventricles blocking his shunt/valve system and trapped the right lateral ventricle. Again, he was back in the Operating Room to have an extension put in his shunt to alleviate his hydrocephalus. We spent nine days in ICU and during that time we started his first round of Carboplatin/Vincristine chemotherapy. When we finally got to go home, Grayson started having horrible anxiety episodes; I could not leave him to go to the kitchen. He would get up and start looking for me although he was in no shape to be walking on his own. Considering what he had been through he seemed to be doing well physically, but this was a point where we really felt like we lost a big part of our boy. Emotionally he was not the same; he had memory loss, permanent vision loss and anxiety that keep him from doing the things he once really loved.
In May of 2007, after our initial treatment round of Carboplatin/Vincristine we finally got some great news. The tumor was shrinking and Grayson seemed to be getting a little better emotionally, unfortunately he got Peripheral Neuropathy which was causing him pain and trouble walking from the Vincristine chemotherapy. At one point he was pulling himself on the floor to pieces of furniture to help him get up. We decided then to discontinue the Vincristine and continue only with the Carboplatin.
In June of 2007, we started physical/occupational therapy to help rehabilitate him. I really wanted something he would enjoy and did not want to spend yet more time at the hospital so we found a therapist that would come to the house and he did it fun, Karate Style. Grayson really took to this and loved working with “Sensai Wayne” his Occupational Therapist with Karate for All.
In July of 2007, we moved from our home in Orange County into our Auntie Tammie’s home in Studio City. With all that was going on with Grayson, we really needed the support of family. We started our chemotherapy regimen at CHLA and I began the search for therapy and schooling when I found a Pilates for Kids Program. In August of 2007, Grayson started private sessions with Nicole Brandon’s group at Artistry in Motion and he really seemed to do well with it. His mobility, strength and balance improved tremendously in just a two month period, but most importantly he loved going to the studio. He was a superstar there and everyone became to know and love him.
In October of 2007, he started at Carpenter Elementary School with a full time aide to accompany him and keep him safe throughout the day. He attended when he was feeling up to it and it helped him start developing social skills once again. He had not been in a social setting with other kids regularly since his diagnosis and his behavioral issues complicate a school environment and learning process. Grayson has lost his peripheral vision due to optic nerve damage so we are trying to teach him to learn with his “new brain” and the way he sees and processes information. Unfortunately, Grayson started having pain episodes which landed us in the ER once again. A CT scan ruled out any immediate signs of hydrocephalus but we knew that his shunt could be failing intermittently.
In November of 2007, after over a month of horrible bouts of pain we knew we had to do something, so we decided to have surgery to either replace the shunt or the valve that may not be functioning correctly. The surgery was a best case scenario, they found the tip of the valve was clogged and that was causing the intermittent hydrocephalus pressure. Bits of tumor can float in his Cerebral Spinal Fluid and clog the valve of his shunt and cause pressure changes at any time. Grayson breezed through the surgery and came home to recuperate and enjoy the holidays. We knew we had a long healing process ahead of us because Grayson had been on chemotherapy for so long that his body could not heal itself as quickly as before. He got a minor infection in his incision just before Christmas but luckily his body finally healed itself. It took six months and daily care for his incision from this surgery completely heal.
In January of 2008, we started working with Master DonVito at Karate 4 Kids. Grayson was really missing his Karate and he had made so much progress in his Pilates that I felt it would be a bit more challenging. This has also enabled him be more in tune with his anxiety and help him control his aggression which has become more prevalent in this process.
In April of 2008, our scans showed that the tumor had begun to grow again. We had our last dose of Carboplatin on April 11 and then Grayson was on chemotherapy break. A break from the needle which he still has horrible anxiety with every week until we start our new regimen of Vinblastine.
On May 23, 2008, we had our first dose of Vinblastine. I was very hesitant to start this chemotherapy because Vincristine had caused him so much pain and neuropathy. He still has drop foot, difficulty going up and down stairs and cannot stand on his feet for any long periods of time, even after a year of trying to rehabilitate him.
In June of 2008, after his third dose of Vinblastine he started having intense pain in different parts of his body; arms, legs, stomach and his head. These have been much worse than the pains that we have been accustomed to managing with his on going chemotherapy regimen. He also developed low grade fevers and chills and my worst fear; what he calls “vibration” is back in his feet. That is the Peripheral Neuropathy that we got from the Vincristine. The episodes of pain that he has been having with this chemotherapy have been unbearable, sharp intense pains throughout his body that his heavy duty pain meds cannot relieve. His blood cell counts dropped dramatically after the second dose and more so after the third; we are now holding his chemotherapy until his body recuperates. We had another MRI which showed minimal tumor growth in some areas if any; it is always hard to be sure exactly because there are so many variables in comparing scans. This was great news considering we were off of chemotherapy for six weeks and the tumor was showing growth while on chemotherapy; however, we are still very disappointed that his body is not tolerating the Vinblastine as we had hoped.
In July of 2008, we traveled to Washington, DC to pursue a potentially more effective and less toxic chemotherapy regimen. Unfortunately, this treatment did not have the potential results that we were looking for so we decided not to start the study treatment.
October of 2008, we had our second stable scan. The tumor has stopped growing, we have not seen growth since the April of 2008 MRI. We have decided to discontinue with any chemotherapy regimens until we have noticable growth in his tumor. Since we have never had any hope of getting rid of his tumor we are happy to have it stabilized. Although we know the statistics say it is only a matter of time before it starts progressing again, we are happy for every day that we have "stable."
November of 2009, we have had stable scans all year. See "Treatment" Page for Updates since 2009.