Treatments and Surgeries

8.24.12     Grayson had surgery on February 15 and again on June 20 to test and replace his shunt catheter which is causing intermittent shunt failure. It causes excruciating headaches and puts tremendous pressure on his brain causing a compression down in the back of his head. We started a new chemotherapy regimen of Afinitor/Everolimus on February 1 for six months but we continue to have tumor progression causing more pressure and pain. So it seems another surgical decompression is inevitable and then onto a 'hopefully' more effective chemotherapy regimen.
6.28.11Grayson had his surgery on June 21 to put in his new central line and remove his old line and that is healing nicely and working well. He also had surgery to try and reposition his ventricular shunt, but they were unable to do so due to scar tissue. They did however find that the catheter in his shunt was not working so they replaced it. Hopefully this will alleviate some of the symptoms he has been having. Unfortunately, the June 14 MRI shows that some of the scar tissue that was removed during his surgery in March has already grown back, likely causing some problems with dizziness and vomiting. We are going to give it a little more time to try and give him a chance to recover and regain more strength before starting chemotherapy.
6.10.11Grayson had his surgery on March 18 and has been working hard to recover and regain some of his strength back. Unfortunately they found that his fourth ventricle was filled with tumor so they were unable to put the shunt in as planned. Gray started having headaches, pain and vomiting again since the surgery. He has also started losing his balance and other bodily functions, which is likely caused by pressure from the tumor being put on his cranial nerves. We are scheduled for an MRI June 14, then scheduled for surgery to put a new central line in his chest to administer chemotherapy. The line he has now has been in there for five years and it is too deep to safely infuse, so he will be getting his new line June 22 and starting chemotherapy as soon as possible.
3.18.11Grayson's Team decided the best option to try and alleviate the inflammation at the top of his spine would be the placement of a shunt in his fourth ventricle. It appears to be closed off due to either scar tissue or tumor and not allowing the CSF- cerebral spinal fluid to flow out of the ventricle, which causes it fill up and cause tremendous pain and pressure headaches along with vomiting. Gray has Neurosurgeon's from two different Medical Facilities performing the surgery together to hopefully give him back some quality of life and decide on the next step forward in his treatments.

2.9.2011  Some Bad News....Gray's scans came back with inflamation in the top of his spine where he had his initial decompression surgery in February 2007. We are hoping that this is pressure related and not caused by tumor growth but will not know until we consult with the Neurosurgeon. We have considered a potential chemotherapy regimen but do not have all of our options as of yet.
11.11.10Gray's scans are showing the fourth ventricle enlarged, likely from CSF - cerebral spinal fluid and tumor.  The rest of the scan looks relatively stable but this could be a cause of the pain and hydrocephalus/pressure headaches that he has been having more of, over the past month.
Gray still struggles with pain and hydrocephalus/pressure issues. Sometimes we will have a month with no serious headaches; and then sometimes it can be days on end...nonstop. His headache pain and pressure issues are very intermittent, which is why we have not opted for another exploratory shunt surgery. Gray copes with day-to-day pain throughout his body, and fatigue, which is likely due to the chemotherapy regimens.  He has not recovered from the neuropathy, nerve damage, like we had hoped. He is currently in physical therapy and occupational therapy to build those muscles, and learn and re-learn fine and gross motor skills and coordination.
7.30.2010 Stable Scans.....The longer Gray's tumors are stable the more hope we have that they will remain stable. This is great news!
3.22.2010 Stable Scans......More great news!
11.16.2009 Stable Scans .....Great news!
We are still struggling with pain and hydrocephalus/pressure issues, but Gray seems to have many more good days than bad.
May 2009 - Shunt Revision for Hydrocephalus Surgery
Gray had another set back. He started having severe hydrocephalus, pressure pain headaches again in March. Although the CT's and MRI's showed no hydrocephalus or shunt failure we decided to have exploratory surgery to try and identify the cause of his pain. His shunt seemed to be working so his Neurosurgeon replaced the catheter in the valve in hopes that this was the problem. His hydrocephalus has never been clear cut, seemingly intermittent, but it does cause serious pain and brain damage. Grayson spent yet another birthday in the hospital, it always seems that the toughest times come around his birthday but he recuperated quickly and his pain seemed to be lessened with the new valve. Over time his shunt has shifted in his brain and is not optimally placed, but it is in a critical location so we cannot remove it. If we cannot maintain his pressure headaches then we will have no other option but to put an additional shunt in his head to circulate his CSF - cerebral spinal fluid.
May 2008 - Vinblastine Chemotherapy, failed
November 2007 - Shunt Revision for Hydrocephalus Surgery
June 2007 - April 2008 Carboplatin Chemotherapy, stable for 8 months
March 2007 - June 2007 Carboplatin/Vincristine Chemotherapy, tumor shrinkage
March 2007 - Shunt Extension for Hydrocephalus Surgery
February 2007 - Cerebellar Decompression Surgery
August 2006 - Port-a-Cath/Central line Placement Surgery
July 2006 - January 2007 Temodar Chemotherapy, failed
July 2006 - Shunt Placement for Hydrocephalus Surgery
June 2006 - Tumor Biopsy Surgery
Making a Difference
Please join us while we continue to move forward in finding a cure. Grayson is our driving force, telling his story, while trying to stay connected with family and friends. We have found inspiration through organizations both big and small, and we have become part of a much larger community. A place where families and friends come together with love, courage, dedication and hope to make a difference. Many of these families' children have already earned their "Angel Wings", yet they still find the strength to move forward so that we can make a difference for all of our children.
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