Adler’s Story

Adler was such a blessing to our family. My husband and I struggled with infertility for 4 years before we finally received the happiest news that we were going to become parents. Once Adler was born he led a happy healthy life. He brought nothing but joy to all who knew him. He was so full of energy and had a heart of gold. He began complaining of headaches in the late summer of 2011. My husband had lost his job, we lost our health insurance and luckily my husband was lucky to find a new job but health insurance benefits wouldn’t begin for our family for 90 days. I applied for Indiana Hoosier health wise but Adler was denied. So my thought was to get him a full physical once we had insurance again since headaches were never consistent and didn’t seem to last long. CANCER was never a thought in my mind. He would begin playing or watching a movie and I would ask him about his head and he would say “all better”.

In December of 2011 Adler began having stomach flu symptoms. He was vomiting and on the 3rd day of vomiting began very weak. So weak that he could barely stand. I knew at this point something was terribly wrong. I took him to our local emergency room and told the ER doctor about the headaches and vomiting. The ER Dr. told me his plan to get a CT scan of his head and start some IV fluids for hydration. Within 10 minutes of getting the CT scan done the Dr. came back in the room, asked me a few more questions and I could tell by the look on his face that he didn’t have good news. He told me that Adler had a large mass on his brain and the pressure from the mass was what was causing him to vomit. Due to not having health insurance we had to stay in Indiana. A transport team was sent from Lafayette Indiana to transport us to Riley hospital in Indianapolis.

Upon arriving to Riley Adler began having seizures and was not responsive. He was taken to the ICU for close monitoring but the pressure was too much for his little body. We were told that emergency surgery needed to be done to relieve the pressure or our son would “perish”. On the early morning of December 22nd Adler had an emergency craniotomy. Adler was on total life support for 2 days after the surgery. A biopsy was done and a week later we were told that he had brain cancer. A very rare aggressive cancer called Supratentorial PNET or Primitive Neuro Ectodermal Tumor. He did also have a lumbar puncture and it was negative for cancer cells.

He did recover from the surgery. He had trouble speaking and walking but he was determined to do it on his own. Due to the type of tumor his oncologist and neuro-surgeon decided that another craniotomy needed to be done quickly to remove the remainder of the mass. In beginning of January Adler had a successful full resection (full tumor removal). His neuro-surgeon did the surgery under a microscope and told us that he had clear margins. Adler was given a few weeks to recover at home before having a central-line placed in his artery for medications and fluids. We were told that Adler needed to begin Proton Beam radiation in Bloomington right away along without patient chemo called Vincristine. On February 14th 2012 Adler began his 31 treatments of Proton beam radiation. He also completed 6 Vincristine chemo treatments. After this cycle was completed he was given a rest period of 3 weeks. After the rest period he began in-patient chemo cycles. He received Cycplatin, Cyclophosphmide, and Vincristin in patient and then be released. Then the following Tuesday we would go in for blood counts and another Vincristine. Adler completed 3 cycles of this regimen before beginning to have pressure headaches again.

After more testing and another biopsy we were told Adler’s cancer had returned in his CSF (cerebral spinal fluid). The fluid would accumulate so quickly. He underwent 4 surgeries to “cleanse” and release pressure before he had a reservoir placed. The reservoir was able to be tapped to relieve pressure. His CSF became too thick and began to clog the reservoirs and after each surgery he became weaker and weaker. He couldn’t walk, chew, suck through a straw or control his bladder or bowels. We decided that we didn’t want to put him through anymore. We brought him home where he was surrounded by family and lots of love and on the night of September 10th 2012 Adler lost his battle to brain cancer. He fought with all he could but his little body had just had enough.

Every January we celebrate his birthday and his love for trains with a fundraiser for brain cancer research at Riley Children’s Hosptial Adler will forever live on in the hearts of all who knew him and even the ones who didn’t get the chance to know him. He was a very special boy and will never be forgotten.