I had a semi normal life until last year on November 21, 2008. Two beautiful children and a normal husband. Ok not so normal, but what is normal for a man? Right? lol My children, Daughter Sophia 12 and my son Dylan, 11 and myself were coping with life the best we could. My husband, their father and I had a pretty rocky relationship due to some of his bad habits. We had been seperated off and on and on the verge of divorce for at least the last year or so. Despite this I made every attempt to lead as normal of a life as possible for them. We 3 had a routine despite his schedule and we had a great time most days, when he wasn't home. I'm not a man basher, ok maybe sometimes, but I'm just stating facts now. I did the normal things, dinner time at the table, me and the kids, football and dance etc for the kids. We essentially for all intent purposes lived 2 seperate lives. Why even stay together you may ask? Both of our parents (my husband and myself) had divorced and we had wanted to prevent them from having the same fate. Also I was raised Catholic, I am of Irish and Italian decent. I was married in a church. . . need I say more. haha.
One day my son came home from school with a horrible headache and immediately began vomiting. I asked if he had hit his head etc all to no avail. He literally lay lethargic at the toilet. I moved himt ot he couch and called his father and my sister to check on him. I wanted to take him to the Doctors but they both told me I was paranoid. My sisiters son had recently had the stomach flu and they both said thats what it was. Dylan woke up a few hours later and ate some chicken noodle soup, I will never forget still beign extremely concerned. But forced myself to believe that they were right and I was in fact paranoid. Hoping I was being paranoid, but deep down I had that mothers intuition nagging at me. He began having headaches and nausea and vomiting intermitantly, never again at the same time, approximately once a week for the next month. I was still being nagged by that intuition and his left eye lid had begun to droop ever so slightly when he had the headaches that I called and made a Doctor appointment for him with his pediatrician. His pediatrician recommended we get an MRI of his brain and neck.. He had had an football injury a few weeks before the first episode so I thought he was looking for something pertaining to that. So I was concerned, but so off base as to what the expected to find. Looking back I wish I had been more prepared, if that is possible. I wished the Pediattrician would've given me some inkling so that I would have had some time to digest what was about to tip my world and set it spinning on an entirely new axis.
I left work early to pick the kids up from school to take Nicky to the MRI. It is a day that will live in infamy for me. I remember every detail, I relive it every day. One of my worst days ever, to date. I remember having to sign a book of concent forms for the gadolinium they have to use for the contrast. I remember being so worried about the results of him taking that, that I didn't really worry about what was wrong. It did cross my mind, but I thought to myself, no way it could possibly be that. That doesn't happen, that is just something that happens to other people or in stories. In essence I blocked it out that it COULD happen to me. He came out of the MRI dizzy and nauseated. I thought it was from the meds and I asked the tech, but he said it is probably from whatever is wrong with him. He said you guys just sit right here and let me make sure we got everything clearly. I remember thinking whatever is wrong with him? Nothings wrong with him like that, he is having a reaction to the meds. Less than 5 minutes later the tech escorted me to antoehr room where a doctor came in and put the MRI on a lighted board. He said we've found 3 black spots on your son's brain the doctor doesn't want to wait over the weekend, he would like you to go to Hospital right now. He was very nice. Asked if I wanted a cab. I asked if my son has a brain tumor(s) He said he didn't know for sure, I would have to go to the Hospital and get more tests, but that is when I knew, for sure knew, my sneaking suspicions had been right. My son was going to die. He had a brain tumor. I asked to use the phone and I called my sisiter as I had one of her children with me and asked her to meet me at the Hospital. I proceeded from there to the waiting room and in a complete and total haze took the kids to the Hospital along with the MRI CD.
When I got there, I couldn't even speak I knew I would cry, hell I cry now just recalling that day. My son kept asking whats wrong? I didn't know what to say to him. We managed to get into a room where I called his father and other family members. No one believed me at first. Even his father was like "Give him some Tylenol he's fine" But eventually we all met at the hospital where he was admitted and immediately started on steriods. He had encephalitis (swelling) due to the tumor. The doctor there said he had a large tumor and 2 smaller ones in the left temporal part of his brain. I remember it was just not clicking yet is was. I remember thinking he would die, but it didn't at immediately register CANCER. I was crying when I met with the first oncologist, and she was saying he was going to be fine, they have treatments yada yada yada, I knew she was lying. She was answering me from a doctors point of view. They have treatment, but your son can die from it (was what I was thinking) and he will be ok to her meant until he dies. No other answer is what I wanted to hear. All I wanted to hear was he would be put back to the perfect son I thought I had 2 hours ago and be healed completely. That he wasn't going to die a painful and horrible death.
After being admitted the head pediatric oncologist came in and advised me of the real situation. He needed to have a biopsy done to see if it was cancer which they highly suspected. However not only did he have a tumor, but it inoperable. It just kept getting worse. They believed it to be Low grade Glioma/Astrocytoma, treatable, but often recurrent and usually fatal in the end either from treatment or the tumor itself.
The day of the biopsy I was informed that the spot they can get at to obtain a biopsy is so small and right near a main motor strip. He may wake up and be paralyzed on one side or not be able to speak. The following hours were horrible. I felt forced to put my son throught his. I prayed for guidance and strength. I prayed for him to heal my son. I prayed for him to not have cancer let it be a mistake . . . please God. But after the surgery, thank God he came out the way he went in, I was told that it was cancer, initial pathology showed a low grade, a 2, like they thought. A slow growing cancer that is treatable with radiation and chemo.
Fast forward one week later . . . follow up exam with head oncologist, there seems to have been some diffusion of the tumor through his brain. They had a tumor bopard review it and he sent it to a nuero oncologist in LA, Dr. Johnathan Finlay for a second opinion. After reviewing the MRI and poath reports, he feels it is Gliomatosis Cerebri a very rare form of Brain Cancer and my son has 6 to 12 months to live. We can try to treat it with radiation and chemo, but it has never worked with anyone. No one has ever survived what your son has.
We went to several places for 3rd and 4th opinions. All came back the same. Sorry we can't help you . . . your son is going to die.
In the end my son wanted to stay close to home and radiation and chemo could be done here so this is where we are. He has had ups and downs, but for the most part he is hanging on. He just passed his 1 year from diagnosis mark and I am happy for that, but some days I need a ploace to vent so that is why I started this to help me do that.
The contents here are not intended to offend anyone, fellow parents, BT patients or doctors, but are just my personal feelings, rants and emotions probably most likely of the moment, which lately can change on a whim.
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