This date changed our lives forever. Here we are a month before our 3rd son was expected to make his appearance into this world, and Alec our 5 year old son began vomiting on and off for about 2 weeks. This came right after a month of strep throat. Our older son had come home from school with a stomach bug, accompanied with a letter from the nurse distributed school wide about this stomach bug making it's way around the school and to please not send your child into school if he/she is symptomatic.
So of course the following week Alec started vomiting and our PA said it's viral. Well the next week came and Alec was still vomiting, mostly in the morning and it was never accompanied by a fever. So I brought him back to the Dr.'s office and is PA grew concerned, conceding that it is not viral and she began a full physical. Although she found nothing unusual she advised me to take him for a ct scan. I phoned my husband and we both reacted the same way, that she is crazy.
We were thinking some sort of stomach reflux as a result from the antibiotics he was on for so long from the strep throat. My husband even thought maybe he was swallowing to much toothpaste or something. I went ahead and scheduled his appointment for the ct scan any how. I expressed my concern with his PA about the radiation exposure and she seemed to be a little upset that my husband and I didn't want to take him for the test. So we said if he vomits again we'll take him. The next morning came and he did vomit so we kept our appointment and took him.
Needless to say we have been in and out of hospitals since. They did find something, a tumor on the lower cerebellum of his brain. While we were waiting in the waiting room for a copy of the scan I had asked for prior to knowing they found something, arrangements with the radiologist, my pediatrician and a pediatric sergeant were being made.
A woman opened the door to the waiting room and invited us in, telling us because it's a Friday and his age the Dr. was reviewing his scan. My husband and I both looked at each other and in hearts we knew something was wrong.
We walked into this room only to be described as a walk in closet with a shelf and a phone. I was walking in front of my husband but they pulled a chair out for me and handed the phone around me and to my husband. He began to shake and his eyes filled up with tears and he began writing down names, as I sat there saying what, what over and over again until the tears wouldn't stop rolling down my face.
We left the radiologist office and headed straight for the hospital, where the sergeant and oncologist was waiting for us. We were immediately admitted into PICU. An MRI of his brain and spine with contrast was preformed.
The MRI revealed the spine also has 2 drop mets on it indicating the cancer has already spread. Dr. Egnor, wasn't sure what type of brain tumor it was, he gave us a couple of possibilities.
Sunday, March 4th
Alec went in into surgery to have the brain tumor removed, the spine is in operable because of their placements in front of the spine. The surgery was a success it was a little longer than expected but a complete resection was done. Of course this was just the beginning of his fight. 2 days later he had to go in again for another surgery because he was draining to much. The removal of the tumor caused the brain ventricles to shrink and spinal fluid kept building up. He had a 3rd ventrciosomy done, the made a gully in the 3rd brain ventricle for excess fluid to drain to, and a mediport put into his chest for chemo treatments.
Luckily the ventricosmy worked and a shunt was not needed.
The pathologist report came in and he was diagnosed with: ANAPLASTIC LARGE CELL MEDULLOBLASTOMA.
Having been unimpressed with the level of care received in the hospital as far as the oncology ward in concerned we started looking else where for his after care treatment. We were told by his sergeant,Dr. Egnor, the aggressiveness and seriousness of follow up treatment Alec needed to fight this disease, yet my phone calls and visits from Dr. Parker, the oncologist went unanswered. I was given a consult appointment 2 months away and he never called me back on the several occasions I left him messages. They drop this bomb on us and reiterated how aggressive this tumor is, that it's not a standard medulloblastoma because of it's cell make up and really just left us out to dry. Not to mention that they never treated his type of cancer before.
My husband, Mark and I began searching for other hospitals who have treated and cured his type of medullo before. Considering we were expecting our 3rd son in a month in a half and our older son Kevin needed to keep going to school we had to stay in the NY area. With much advise from our family, Mark's cousins are in the medical field and my uncle so we valued their opinions. My Uncle Nick made some phone calls and gave us a few suggestions but once I explored them we ran into health insurance matters. Mark's cousin Patti consulted with some Dr.s at her hospital and they recommended Schneider Children's Hospital in New Hyde Park, specifically Dr. Atlas. We got an appointment with him and felt very comfortable and trusted his medical advise.
Alec had a spinal tap 2 days later. Dr. Atlas didn't want to waste anytime. The spinal tap came back negative for disease which I would think is good considering the other 2 drop mets on his spine but Dr. Atlas still didn't trust the disease. Being that there are the spinal spots it indicated that the disease did spread and needs to be attached aggressively.
The following week we met with Dr. Atlas again, he had met with the tumor board and had a game plan for Alec's treatment. They want to do the sandwich approach, 2 rounds of chemo, 6 weeks of radiation with oral chemo at home, 2 more rounds of chemo and then an autologue stemcell transplant, in which his own stem cells were harvested, frozen and then given back to him. The name of his treatment is: Head Start II
The first 2 rounds of chemo were really rough on him, extensive vomiting, weight loss and just not himself. He was admitted twice in between treatments for a fever, both times the fever broke on it's own with negative blood cultures. The radiation wasn't that bad, the did a boost to where the tumor was and the drop mets. We havn't had an MRI done recently, but the last brain MRI of the brain was clear.
We just finished our 3rd round of inpatient chemo and it went well this time, not too much vomiting, they tweaked his anti nausea meds and it works, yeah!! He is presently on his mouth care (Nystatin, Biotene), Megase (appetite stimulant), Zofran, Phenergan, Bactrim, Neupogen shot, MonaVie. We just were released yesterday, July 24th from the hospital, he was admitted this past Friday with a fever. He is doing well now though, very up in spirits.
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