John’s Story

Site created on January 10, 2010

LJ was diagnosed with a Grade 3 Anaplastic Ependymoma in December 2009.  After a complete resection and a third ventriculostomy with Ommaya reservoir emplacement, LJ received Proton radiation (32 treatments to the tumor bed only). 

In early Fall 2009, John began to have difficulty walking.  He would fall often and even fall over when he was simply sitting.  At the same time he had had a series of ear infections so we were worried that he might need ear tubes.  I began to notice that his vision was a little off -- that his eyes weren't exactly tracking with one another.  After a gazillion visits to the doctor, we were referred to an ENT, who ordered a CT scan.  The scan was on 16 December.  The radiologist looked at the scan right away and called me in to his office.  He said he had John's pediatrician on the phone for me to talk to.  Dr. Malati told me that John had a tumor and would have to go the hospital immediately.  Little John was patiently waiting on my lap, eating Cheerios.  Once we got off the phone, the radiologist explained all of the pictures that he had up on big screens in his office.  He explained the location and size of the tumor.  Then he put his hand on my shoulder and said "I'm so sorry."  I think that's when it hit me.  We walked out of the office into a separate room while they arranged for a room at the hospital.  I called big John and tearfully sputtered out that John has a tumor in his brain and we have to go to the hospital right now.  John met us at the radiologist's office and we went to Fairfax Inova Hospital about an hour later.  And so our journey began.  Grandma Judy flew that night from CA and my Dad drove down the next morning from NY.

At the hospital we met our neurosurgeon, Dr. Post, who was on his way home, but he had heard that we were there already so he came to see us and the CT scan.  He had his little boy with him, who was the same age as John.  Dr. Post explained that surgery was necessary, after an MRI, and he wanted to do it as soon as possible.  He explained the possible complications with the surgery (death, loss of speech,... there were others but those are the only two I remember).  He expected the surgery to last 3-5 hours (it lasted almost 9).  The MRI with sedation was on Thursday (he should have had a brain and spinal done, but the radiology dept couldn't fit that in, so we only did the brain).  
On Friday, John was sedated at 0800.  I got to hold him until he was asleep and I kissed his little feet before I left.  Surgery was to begin at 0900.  The first thing the surgeon did was put a drain in his head, to relieve the pressure (the tumor was blocking the flow of cerebral spinal fluid).  The surgery itself required going in right between those two big tendons in the back of your neck (where he now has a 4-5 inch scar).  Me, John, our parents and Rebecca and Mitch waited for 8 hours -- and finally got word at 4 pm that they were closing him up.  Dr. Post came out at 5:45 and told us it went as well as it could have.  John tolerated surgery very well and Dr. Post was able to get "most if not all" of the tumor : ))    He said that as John was coming out of the anesthesia, he rolled over and got up on his hands and knees! We were so happy to hear this!  However, when we saw him in post-op, he looked rough.  He couldn't smile or move his face much, his eyes were pointing down and he cried a good bit.  He also had a huge bandage wrapped around his head, including the drain with they wanted to leave in to relieve swelling from the surgery. That night it started to snow and we had the biggest snowstorm in the northern VA area in decades.  It was bad!  Still, his surgeon came in to check on him.  Luckily, we made reservations at the Residence Inn, which was very close by and where the manager was very understanding of our situation -- her own daughter had a brain tumor at 18 months of age.  With a room close by, John and I took turns sleeping at John's bedside and getting rest at the hotel.  One of us was always with him.  We were able to do this because we had (and continue to have) tons of support (food, clothing, etc) from our parents, Judy, Barbara, and Jack, our neighbors and our wonderful friend Rebecca who corralled support from friends and strangers alike (thank you, HFAC!!!).  And we couldn't have asked for more generosity and thoughtfulness from our coworkers at State and BAE Systems. We got home on Dec 26th but LJ had an additional surgery on January 15th (third ventriculostomy and emplacement of an Ommaya reservoir). He could not walk for two weeks and could not speak for a month.  His first word was Dadda.

We temporarily relocated to Houston, TX on Jan 23rd for LJ's radiation treatments at MD Anderson's Proton Radiation Center. He underwent 32 treatments (everyday M-F). We returned to Virginia on March 21st 2010.  LJ had clear MRIs until January 11, 2013, when he had another craniotomy for a suspected recurrence in the upper brainstem - however the pathology showed only gliosis!!!  His MRIs have been clear as of January 21, 2014.

Newest Update

Journal entry by Susan Avalos

Hi everybody!

LJ is doing well!  He had an MRI a few weeks ago and everyone agrees that things look good in that beautiful head of his.  He saw his oncology team this week and that went smoothly - he didn't even have to do any labs, which was wonderful (he does not like the blood draws at all).  If everything goes well, his next MRI will be in March!  They are starting to spread them out now to every 6 months.  As you can imagine, this is good (fewer sedations) but nerve-wracking (what is going on in there??).  Things can turn on a dime in the cancer fight, as we all know.  In about 6 weeks we'll have been at this for 5 years.  Ependymoma can still come back and other tumors or necrosis can develop as a consequence of the radiation he received in treatment.  We are grateful, grateful, GRATEFUL for this time we've been given.  LJ is 7 years old now and continues to heal slowly - he still can't jump, but he is beginning to run!  And he loves it because he likes speed!  His speech continues to improve as well - and he's saying the funniest things, which is normal for a little boy but so precious to us because that tells us that he is processing faster.  He seems to "get" the world now, much more so than before when he seemed to always have a deer-in-the-headlights look about him as he processed the world.  We look forward to continued healing for his little brain!!! 

We have tons to be grateful for this holiday season, including LJ's awesome school-based team which takes such amazing care of him every day, our wonderful family and friends, and our health!  Best wishes to all of you! love, John, Susan, and LJ 

PS. The picture is "Batman in Repose" or "c'mon,... another picture??  I've gotta go save the neighborhood!"

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