Dylan had his follow up brain MRI today

I am so sick to my stomach to hear the results of this MRI. I feel we are on borrowed time as it is comsidering they gave him only six months to a year so I am grateful for the additional time but I am not ready to let him go yet, not even close. I shudder to hear the results Monday. BUt I know I have to be strong for him I just hate this. I wish I could tell him ev erything will be ok but I can't because I don't know that. OK gotta go I'll write more later though Have a great weekend if anyone reads this and if you feel so inclined please say a little prayer for my baby.

A New Year. . . 2010 ready or not

OK so it is 2010 wow not quite all the drama the sci-fi movies claimed it would be right? lol well another year another resolution. Last year I managed to acheive my goal . . . to gain as much weight as possible, I figured I couldn't NOT achieve that one. Everyone else tries to lose something or not to do something I chose to do something attainable lol. I was so stressed with the diagnosis of my son that it was actually easy as pie no pun intended. So I did it I gained like 40 or 50 lbs ok I say that like I don't know what I started at right haha I'm a woman we all know how much we weigh whether we fess up to it or not. So this year my goal is to lose all this hated weight. My goal weight is 135, well actually I'd like to be down to 115, but I think that might be pushing it. I better keep it realistic for one year. I'll lose the rest next year. I have a Dr. appt on the 20th to make sure it si ok for me to start exercising. I have a heart condition which is like most of my other conditions . . . there but unexplainable. I have an "atypical" irregular heart beat and they don't know why or how to fix it, but they say that it is not fatal, but I still worry so I get my semi annual EKG's and Echo's.

So anyway I began my "new lifestyle" today either way a little exercise and lack of soda and candy can't hurt too much, right? The bad part is I have to do it solo no help, chemically speaking. No caffiene or diet pills of any kind I got decaf green tea and thats about it. I am already starving and it hasn't been one day. I woke up and did 1 hour of yoga and 30 minutes of cardio on my Xmas present - a Gold's Gym elliptical machine on the weight loss program. I also did laundry and cleaned my closet a little of some of the boxes and organized a bit. I started the day well I had 2oz of pork loin and an apple for breakfast then I had a chicken sanwich plain on lo carb wheat bread and a few toritlla chips, I know but I was starving =( I'm terrible at dieting. The for dinner I had a chicken, rice and veggies. Lots of water and what do you know my mother who probably made me a crazy hungry junk food eater in the first place just walked in the door with my worst temptaion mint chip ice cream, my favvy dang it!!! I dont think I will make this one day let alone 1 year haha. Let my words be my conscience. My main problem is I was always tiny. I never had to watch what I ate then when I started having my heart problems when I was like 24 or 25 I began gaining weight. Not significantly because I was always a major exercise addict, but I had to start watching what I ate. I will do this, I can do this . . . sike myself up. I'll start tomorrow, just kidding, that was the old me haha.

Other things going on right now, my son is getting sicker, he has been nauseaus and had a headache, hiccups, fatigue, low platelets and wbc this last week or so. I feel in my heart he is getting sicker that is probably whby I am so stressed hence eating so much more than normal. Hopefully exercising again will help me to be strong when it comes to this emotioanl eating. I watched the movie My Sisters Keeper. Let's just say I shouldn't have. I cried through the whole thing. I can see my life right there. I also get very frustrated when I see pink everywhere for breast cancer research and awareness. Not that begrudge them a cure but I would like everyone to know more about Childhood Cancer as well. The designated color is Gold for pediatric cancer. I promise when I have more free time I will attempt to do something about it. Most brain cancers do not even have research on going they just use whatever treatment is available for the most common brain cancers. Well I will write more soon, this will hopefully be my venting point instead of that tub of mint chip!

Wishing everyone the happiest new year.

PS I ask for your forgiveness in advance if some days I seem like I am Bi-polar, a termianlly ill child will do that to you.

MRI Results are in. . .

Well I got an email from the nurse at my sons Dr. Onco Office today saying his spinal scans were clear. Which is a great thing, so one more thing ruled out. Now if we can just find out what it is I will be happy. I hate not knowing what is.

Everything else has been above average. Dylan has been in good spirits and feeling pretty good. He has been able to eat his favorite food, oranges, without being sick so he is ecstatic. He actually spent the night at his cousins house on Saturday, which was a major feat, for us both. He has not been away from my side really since diagnosis in November of 08. I know I am paranoid, but I just HAVE to know he is ok every second LOL But he really wanted to go to his cousins house so I caved. Plus it is literally 1 street over so . . . how could I really say no. Even though I hate him being one bedroom over let alone a whole block haha I guess its time to let go a little. He had a good time, said he couldn't sleep well, but otherwise did ok. I on the other hand did not sleep at all, but took advantage of the time and went shopping for last minute stocking stuffers.

Tonight we went and looked at the lights of the strip and Xmas lights.

I have been feeling kind of lazy lately, sad, depressed and anxious. I want my son to live so badly, but I feel like I am always waiting for the other shoe to fall. I try to live day by day, but it is easier said than done. I hear about the other kids from my support group and I truly feel blessed, but also knwo that things with this disease can change in a minute. And I can't help wondering what the future will hold for my son. How he will die, I just hope and pray that he goes peacefully and painfree. I just don't want him to suffer and I knwo no parent wants that for their child or for that matter any loved one, but especially their child. I do try to avoid that reality as much as possible. It doesn't help that I am feel so stuck somedays. The situation with their father right doesn't help as we are barely on speaking terms and when we do we argue, and if I am being honest with myself, I would be much happier, and they would too as Dylan so boldly explained to me, if we could move on with our lives. I feel like I live in a snow globe of hell. I know I sound like a selfish bitch and I'm not trying to sound that way. I would live like this forever if it meant I can keep my son with me, it is just not, beyond my children, a very satisfying life, nor do I feel it very healthy for any of us. I try to be as positive and what I consider PC about everything, feel blessed everyday for what I have, but somedays I feel down right pissed. My baby is dying right in front of my eyes and there is nothing I can do about it. He has planned his funeral down to the music and how to dipose of his body. I feel my life has become someone elses and that it is so surreal. It can't be my life. These things don't happen, people just make them up to sell movies and books etc. But at the end of the day reality sets in and I know in my heart that this IS my life. And I also know one day that I will have to plan my sons funeral and I hate that thought. I wish I had someone I could rely on. I know there are people that go through this stuff everyday without any help at all. I have friends, I do, but it is so hard to ask them for anything. What can they do, I think? Listen to me bitch again, listen to me cry? That isn't going to change the outcome. No amount of pity will save my son. So why torture them. I try to put myself in their shoes. They most likely would feel awkward, because we all know they can't change whats going on, have never experienced it and therefore have no words of comfort, if they (words of comfort) even exist!! I would feel as if they are knocking on the the snow globe of my life and talking through the little prison-like intercom whispering their "I'm sorry's" and "if you need anythings's" while I am screaming but no one can hear as the sound travels around and around til it exactly mimics the music spewing from the snowglobe. Some "classic" song that gets annoying with redundancy. It just feels not worth it for either of us. But at the same time I feel that is exactly what I need. I guess what I really need is a psychiatrist LOL.


Ok enough for tonight . . .

Today's question to ponder and tomorrows main topic: Is it better to know or not?

Until then happy holiday wishes to all!!!

A night out with old friends for a Xmas Party

So I went out to a housewarming/Xmas party today for a good friend of mine from my old job. I saw a few other friends there and my old bosses. It was nice to see them, but I feel so out of place. Like I don't belong with them anymore. Ever since Dylan was diagnosed all my old friends seem to be just that, old friends. I talk to them occasionally but I feel have nothing really in common with them anymore. I always feel like an outsider now. I'm no longer in the loop. Like they just put forth the effort to be my friend out of obligation or they feel bad. I don't know how to really describe it. When they look at me, which is rarely in the eye, I feel their pity and I see them searching for the old me. The one that used to be their friend, but no longer is inside me. I guess it is me that has changed. But I feel very sad, for not only have I lost a NORMAL life, becuase I would gladly do that to have my son's life saved, but I don't think my life will ecver be the same. I can't see myself enjoying things and having friends, because I am just too different now. This has changed me in so many ways. I don't know where I am or where I want/need to be. My old career is basically non existant now, I want to do something but have no clue what? Actually that is a lie, I know what I want to do but it would take a lot of time and money, I dont have either one right now.

I feel so lost and lonely in so many ways. My children's father and I never have had a great relationship and now it too like my career is non existant. He is in complete denial about our son's condition. I talk to no one but my kids, which is ok, but sometimes I would like to have someone to talk to that just understands what I am feeling or TO try to understand. I feel like I have no one. Everyone says oh if you need anything blah blah blah, but 1) I hate asking for anything and 2) how do you ask some one to be your friend or a better one haha. I know I'm being selfish right now lol and self pitying. Ok I'm done.

Feeling depressed also about all the little kids and parents that are going through the same thing as we are, some worse off. I have been following several kids sites since I became a member of a online support group and more than 10 have died with in the last year. That is so horrible. Thats just the ones I was following.

Wishing everyone a good evening I am so tired I only got 2 hours of sleep can't think, can't write, right?

This week we had a Dr. Appt everyday . . . MRI, Ultrasound, and Urologst. Dylan has been having pain off and on in his lower back when he urinates. They do not know what its is. He does not have an infection or UTI, the ultrasound came back clean of the kidneys and bladder . . . so they are at a loss right now. I requested, for several months now that they check his spine to rule out spread to his spine. So I am awaiting the results now. I will post as soon as know the results . .. please cross fingers, toes, and anything else that can be crossed.

Where it all began . . .

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.