April 16, 2007
A Celebration of Life
Dante DaVaughn Angerville was born on July31, 1987 at St. Mary's Hospital in Brooklyn, New York, the beloved son of Alinda and Samson Angerville. he received the foundation and basis for his education at Bridge Street Preparatory School and attended Philippa Schuyler School for the Gifted and Talented. Dante's understanding of the importance of education was well known and his life reflected that. He was on the honor roll in school every single year from the 5th grade all the way through high school.
He attended the Presidential Classroom Science and Technology week in Washington DC where he attended a session of congress and visited the halls of the senate and was treated with a rare inside look ino the inner workings of this country's government.
Having obtained a 1350 on his SAT's as a sophomore on his first try, Dante would continue to define excellence in education and was named Valedictorian of the graduating class of 2005 of East new York Transit Tech High School. He was also named to Who's who of American High School Students and graduated with an Endorsed Regents Diploma , the Challenger Award, A gold Medal in social Studies and Science, and The Michael Wallace Award.
After Sending out applications to Drexel, Temple, Howard, Penn State and Villanova - and receiving acceptance to all, he decided to attend Drexel University in Philadelphia Pennsylvania and pursue a degree in civil Engineering. he was awarded the AJ Drexel Scholar award which consisted of an academic scholarship and is given to applicants chosen from teh top 15% of all applicants to the school.
In addition to his academic pursuits, Dante was a member of the American Society of Civil Engineers and the National Society of Black Engineers. Dante's love of Trains was legendary and he was also a member of the "Sub Chat" group which is dedicated to those who have an interest in Railroading and public transportation systems.
Dante developed an interest in photography and has photos not only on his own website but on several sites on the internet as well as having some of his images used on the "TransitTalk" website.
because of his interest and love of trains Dante was also blessed to be a part of a documentary on the NY City Cubway System - NYC Underground - which was filmed and shown on the NY TImes Discovery Channel where he participated as apart of a group taking the "Ultimate Train Ride" a mission to pass through every single train station in t the NYC Subway system on just one token.
On the afternoon of Thursday April 5th , Dante was called from Labor to reward at the University of Pennsylvania Medical Center Hospital in Philadelphia, PA
"You fought the good fight - and in spite of what it may seem - You won"
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The Fire - Is out....
I can truthfully say that I have within the past few days lost the one thing in the world that meant anything to me. The one thing that kep tme going each and every day and the one thing in this universe I loved more than anything else.
My son, went bravely into surgery that he would not come back from. His life...ending when his heart stopped and he could not be revived. I am continually haunted by the doctor's words "something very very bad happened"......and at the same time i still feel a measure of disbelief. As if this is all some kind of horrible nightmare that Im going to wake up from any moment. The images of the doctors "informing me" what happened along with the vision of my son laying on a stretcher....tube still in his mouth.....gone....skin still warm to the touch....refuse to leave me....and i find myself unable to sleep because of them....most times i close my eyes these are the things that i see....and my heart either starts racing or if i were drifting off to sleep it causes me to jump out of whatever sleep i was about to get.
What has saved me from madness, is so far my ability not to think about what has happened in the last few days too much. Analyzing this would absolutely cause me to lose my mind as there is no reason to this.....to know that one is in death better off is one thing, to accept and understand to the point of it not hurting constantly - hurting so much that you can't breathe at times...that is something altogether different.
I feel at times somewhat detatched from myself, like im sitting outside watching a life slowly be torn apart by degrees....and i have at times wondered who or what i pissed off to invoke such tragedy into my life.
Writing now while somewhat cathartic - is a challenge...there are just things that I can't express - I don't know how which is about where I am on most things now - how do you come back from losing your only child, the one GOOD thing you've done in your life? What is your motivation for anything anymore? How do you find one to keep you going?
What - do you do with your life and yourself ?My nerves are too bad now to even try and figure this all out....I have been left pretty much to my own devices with the exception of my girlfriend coming in from out of town last week and staying the week with me....and one or two visits from a "friend" no one has come by, the phone rarely rings....and most nights like tonight im sitting here alone trying to hold onto my sanity .....with great difficulty.
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April 2, 2007
solataire
The closer I get to the actual date of surgery the more im reminded of how incredibly alone I am. No one should have to go through this with their child ever period,...but i suggest too that no one should have to go through this alone. People take things like being the hospital and being sick surgery etc for granted because they have never had to be in those situations all by themselives literally. At the rate im withdrawing from people i will bea total recluse and hermit in 10 years time tops;
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March 6, 2007
Here We go, Again...
Got the call today, Dante' is scheduled for surgery on April 5th. He is to be admitted into the hospital on the 4th for pretesting and to embolize the area to minimize blood loss during surgery. Right now, even though I u nderstand what is to be done and why, I am scared to death...
I finally told my mother because now that I knew when for sure she needed to know as well.
I almost made it home without crying, now that I am home the last thing it seems like I want to do is cry. Something about sitting in the house alone crying...seems/feels unpalatable right now.
I know my boss probably wanted to talk to me tonight as I was leaving but as i had not too long prior gotten the news about Dante's surgery, and was feeling subsequently physically ill, i pretty much made a bee line to leave as soon as possible
I know I need some time to work through how all this feels, but i don't have time. I have to get up in the morning and go into a job where on the one day they are singing your praises, and crowing about how wonderful you are and how great you do this or that and giving awards and recognition, the next day they are writing you up for unanticipated absences(calling out) which are a direct result of the stress from work and personal life that wind up physically manifesting themselves.
On top of all this, the feeling of wanting to be held and comforted, and realizing thats not going to happen, only exacerbates the other feelings, which only winds up with me having to dig deeper to find energy to throw that off....along with all the other stuff....And Im so tired....of being fearful for my child's life over and over again, no one understands this....and im tired of having to go through these things by myself - and i guess tonight is just not a good night for me....and so before i speak any more negativity.....let me cease....
There's nothing left for me to do, except go to bed. Which is what I am about to do...
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November 3, 2006
Treatment Plan...
Not too long got off the phone with the nurse practioner that works with dante's new doctor. it is looking like at the very least I will be running back and forth to philadelphia but more than likely i will have to plan on spending some extended time up there as the plan now is to first take dante through radiation treatments and then if necessary(thinking now seems like thats likely) that he would then go through chemotherapy. Which his doctors have expressed concerns about him living alone and going through chemo and have been dropping hints about me being able to be with him while he's undergoing chemo.
I don't want to move anymore but if i have to i have to...my mind can't even wrap around that right now. I tried to think about the logistics involved in trying to do that and gave myself a headache...
I'm tired Lord.....very very tired....could you please just send a "little" help here?
Which now more than ever means I need to get my treatment squared away. Been calling trying to reschedule appointment on this end.
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September 16, 2006
A Star, A star...
i was given an opportunity this evening to name an actual star in the sky and have it be recorded in perpetuity - and I did....of course named it "Dante" I actually have the coordinates and probably around christmas i will give him the certificate issued with the name, and coordinates of the star (which is in the Leo constellation) and it has the following inscription(i can do this because he doesn't read my blog)
If all the world shone bright as you -
we would live in eternal day -
and the world would be covered in rainbows...
Oh for those of you that don't know he is a Leo ...
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September 9, 2006
Will Someone Care
this other song has stayed with me as well....those of you who have been reading will understand as it strikes so close to home....its actually sung from the perspective of HIV patients....but with dante's situation...it fits....we were watching tv the other night and it came on and we both looked at each other...and if it had been anyone else other than dante they would have been in tears....as it was he gave me this look and for a split second i could see the pain...and i teared up and gave him a look that "willed" him out of that moment of "emotion" People just dont understand having to contemplate or deal with cancer....this sums some of it up though...
Will I lose my dignity,
Will someone care,
Will i wake tomorrow
From this nightmare...
And later on into today i thought this could also apply to my life and being alone...
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August 26, 2006
Back at One
Whatever word is equal to being past exhausted is what I am right now. I am just NOW getting back from picking Dante up from the hospital as he was discharged today...finally...I can't even see straight im so tired...
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August 25, 2006
Update and Still Waiting
the reason this blog was started in the first place was because of Dante's previous hospitalization and trying to update everyone ina way that didnt include having to retell the same storie(s) over and over but let everyone know what was going on...
I saw dante twice today - when i first got in - and ran into one of the doctors as well. he informed me that the MRI and the MRA that were done last night both came back negative. He informed me however at that time that the plan was to do a spinal tap to also rule out any problems in that area. Unfortunately for dante that meant he could not eat anything until after they did the proceedure. When I saw him this morning he had a PICC line(i know im being clinical but im at work, bad habit)
I went to see him again in the afternoon around lunch time and he was doing ok he still had some discomfort and was more concerned about not having had anything to eat (he was hungry) we had no word at that time abotu when they were going to do the spinal. I got him a couple of movies to watch and i stayed for part of charlie and the chocolate factory and then i had to go back to the plantation before they came looking for me.
I have been calling hourly more or less to check on him - the last time i called he told me that the doctors had decided NOT to do the spinal because of the proximity to his tumor and the risk of the catecholamines infiltrating his spinal column - for those of you without medical terminology background lets just say that would be a VERY VERY BAD thing...
Instead they want to do some kind of CT scan and im sure with contrast - so when i spoke to him he was in the midst of ordering something to eat. No ETA on when they are going to do the CT scan but im sure that wont be that long a wait either.
As for me as long as i keep myself numb im ok - if i stay in "work" mode it doesnt allow me time to think about anything much i cant allow myself to think on any particular thing too much,. Think of the analogy of a closet door that you open slightly to peek in and realize that if you opened it a whole bunch of stuff would come bursting out and you would be buried under it thats about where i am right now.
haven't had any appetite today but i did pick my way through an omelette this morning. I can't afford to pass out right now and im already depleted since its that time of month.
Im headed back over to Sloan as soon as i clock out here dante asked me to bring him a subways sandwich which i will and then im going to go stay with him - havent decided if i will spend the night or not....i will see how hes doing and what he says...
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No Justice - No Peace...
Ok i got in last night from the gym and find out Dante had gone into the clinic because he was having more pain in his neck and actually left me a message saying that he was feeling a "cold wet pain" in his head and so he went into the clinic and they admitted him. Evidently once again no one thought to notify me which is why i didnt find out until i got home last night.
I got a call from my mother because she wanted to discuss travel arragenemnts for her coming back up here since now the lawyers are waiting on her to do the closing....after finding out dante was in the hospital i just couldn't talk and i didnt call but she called me...and demanded to know why i hadn't called her...i remember calling her an "evil woman" and saying dante's in the hospital before hanging up the phone...
I spoke to him briefly last night on the phone, I was going to turn around and go back to the hospital but he suggested i wait till the morning and just come over after i sign in at work ( i work across the street from his hospital) Appreantly he is being evaluated by the Neurology team to rule out aneurysms, the tumor spreading, or anything of that nature. They did an MRI and an MRA last night and when I got in this morning to see him the doctor told me those tests were negative..
He still has to go for a spinal tap at some point today..I haven't really said anything to anybody and I guess right now i just don't feel like talking much or having to tell this story over and over. I haven't said anything here at work and I doubt that I will because im tired of people looking at me with pity
Those parents over at the center are going to be up in arms since i was supposed to send out their order today and im not sure if i will get around to it and quite frankly right now i dont give a damn...
Days like today make me wonder if i will ever see a time in my life where im happy again....these days it doesnt feel like it and no place i go can i find peace of mind...
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August 20, 2006
Heart Racing Again
DAnte had another one of those "heart racing" episodes literally this morning....he knocked on my door and asked if he should call ems as his heart rate was at 135. I made him go lie down immediately and gave him something cool to drink....and retook his pressure lying down....at which point his heart rate started to subside....we both noted that he had just gone to the bathroom prior to all this so we are now wondering if its something related to the tumor....my nerves are frayed beyond belief...i HATE living like this....its taking all the good out of me and leaving me with fear and anxiety...
I just hate this...i hate this...then if i feel like shyt im supposed to just "snap" out of it...will someone PLEASE tell me how the hell you snap out of this???
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August 16, 2006
Just don't Understand...
i dont even know how im supposed to go to sleep tonight...my eyes are burning like there are tears there waiting to come out but they won't.....my nerves are shot to shyt....i was supposed to call my mother tonight but i don't feel like talking to her...
People just don't understand living like this....im to the point now where i have to really "brace" myself to come home at night not knowing what im going to find when i get home...
my nerves are just so bad right now....im not even going in the bedroom because im not going to be able to sleep...
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Elevated Heart Rate
ok i come in from the gym, and my son hits me with - he had to call ems and be rushed tot he hospital because his heart rate zoomed up to 170 for no reason...and they had to come get him and take him to downstate - they did ct scans of his chest and didnt see anything that would cause his heart rate to go up like that....additionally his blood pressure was actually normal... his heart rate eventually returned to normal...but we have no idea what caused it to go up like that in the first place(well its probably the tumor) but we dont know why?
After him explaining to me all this...and how they came and had to give him oxygen...i started to just go outside and sit on the curb and cry...instead of doing that i did go outside but i wound up calling a girlfriend just to talk about something else...because i didnt feel like falling apart - and still dont...
He's got to go to the doctor tomorrow...somehow im supposed to manage to be at work knowing all this....
God help me....it's just too much...
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August 6, 2006
Goal Oriented - 101
Ok this will be a good one as its in part response to something said to me by someone that begs for a response but it also is something I had been contemplating and considering for some time.
The pursuit of goals, and in fact the act of being "goal oriented". I would like to think that there is no better example of how much emphasis and how my idea of focus and goals are of importance but by looking at my son. From a very early age he was taught and shown as best as i could that in order for him to live a life where he would have MORE choices and more freedom to do the things that he wanted to do, to live the kind of life that would be more comfortable for him, that he had to hit the books in school, and go to college. Not that I drummed it in his head but it was imparted to him and whenever I got the opportunity to show him actual evidence of this being the case I did. I tried to expose him to professional people who had gone that route as well as expose him to situations and circumstances that would reinforce that.
The result is nothing short of stunning, because even having spent an entire summer in the hospital with a serious illness and even being very close to not being here at all, he never lost sight of his goals. To graduate high school and go on to college. It was what he used to focus on during the entire time he was in the hospital and even when he got out, he never relinquished his focus and did not doubt for one second and did not even speak any words of doubt into existence.
Even when everything around him appeared to be working against him he never lost sight of his goal. He NEVER EVER gave up. Never said, "Mom I can't do this..." NEVER. While there may have been times when he was in the hospital where the situations he was going through made him exasperated, angry even(the MSG insurance fiasco comes to mind) HE never ever gave up, and I as his mother never EVER stood in his way nor did anything in thought word, or deed to discourage him in any way.
Evidently something worked and as he prepares to go back to register for his second semester of classes at college. I know it is more of a testament to who HE is and is a walking, shinning, no BLINDING example of being goal oriented, being able to focus on those goals, and being completely unafraid of doing what is necessary to achieve them.
People have tried to credit me with what he has achieved so far in his life and I hear the phrase often "well it was a result of good parenting, you did this or that etc...."
My parenting was not so spectacular - i just love my child I loved him from the moment i felt him move inside me and every day i see him it grows. I don't feel like i did anything overly out of the way or anything that is like "well tell us how you did it "
I love my son with everything that is inside me, I am proud of his accomplishments because for me it is a testament to the wonderful person that i know him to be, NOT necessarily becaose of anything i did other than bring him into the world.
This is a highly important topic for me as it centers around core issues that I am myself dealing with at this very moment so I know when i get back today I will be blogging quite prolifically
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August 2, 2006
Rescue 911
There are no words to express how completely angry and disgusted I am with myself tonight. Good thing because i dont have time to cry over the latest tidbit of news that my son actually called 911 and went to the emergency room today because he was having some pains...it sounds like a pinched nerve.....he's supposed to go to the doctor in the morning....im giving up my bed so he doesnt have to sleep on the air mattress....but that means i either sleep in a chair or don't sleep tonight....
I am so very very angry and disgusted with myself - there are no words.....
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July 31, 2006
Happy Birthday
Today, is Dante's birthday...lots of emoitons and things floating around today. But I think going forward as has been the case, that we both get more opportunities to transcend the circumstances, rather than become victims to them.
Sorry but no mushy tear-jerker post this morning. Today is just one day of many that I choose to be happy in spite of and in DEFIANCE of the circumstances around me.
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July 29, 2006
Uncomfortably Numb
I was going to post about the surgery and how the day went but I feel like i have no emotions from which to draw from in order to convey the events.
After today im just numb............and maybe its better that way....
Title of the image is "Goodbye Girl"
reminded me of the song....and yes this is one of "mine"
Posted by digitalmuse at 8:09 PM | Comments (0) | TrackBack
i give up
my day was just ruined with a phone call from dante's father saying that because we were unable to provide his insurance company with verification of his attending school, that they are cancelling his policy effective as of august 1st.....
i give the fugg up....
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Photogenic?
Another favorite - this one at the Eisenhower Memorial in Washington DC
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DC Memorial
This is one of my favorite pics that Dante' has taken. This is at one of the war memorials in Washington DC
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Science and Technology 2004
This is the Caucus that dante was a part of and actually he's in this picture Way in the back !
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Uncle Albert
Yeah I know the beatles im sure will forgive me the pun.
This was taken in DC and are some of the kids in Dante's Caucus
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DC
I have been going through a lot of old pictures that have been taken but never printed out or put anywhere. This picture is one of a slew of pictures that dante took when he went to Washington DC as part of a program called Presidential Classroom - which brings together some of the top students in the country for a week to learn and discss policy on specific topics - The week that Dante went was Science and Technology week. It was a wonderful and tremendous opportunity for him to experience Washington and see government up close and personal.
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July 23, 2006
Aches and Pains
had a bit of a scare with dante last night....he had gone to the bathroom and was hit with some weird pain...he usually has some degree of pain after going to the bathroom anyway (by product of that damn thing) but last night he had sat down afterwards for a while and couldnt get up...it's really hard not knowing what's going on inside....he is not due in to discuss the scans until wednesday...so we wait in the meantime....and i continue to wonder how it is i don't lose my mind with all this....
gotta get out of the house right now...need to get my head right....
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July 13, 2006
Treatment
Today finally was the day that Dante started the MIBG radiation treatments. I found this out late last night when, he finally decided to come in from a chinese food run. Luckily I had already put in for the next two days to be off and so I was able to accompany him to Sloan.
IT has always been interesting to note people's reactions when you are caught up in the midst of dealing with this 'cancer" situation as well as the things relating to it. As was today you will get some that will express concern for you and (dante's) well being and who will exhort you to take care and rest(both of us) then you have the people who for whatever reason were expecting you to do something and can't understand when you try and explain to them that you are severely time constrained. Can't understand why you can't fit whats going on into a scheduled time slot, or in the case of an irate parent, can't and won't accept that you can't run all over town all day and turn around and do it ONE MORE GIN, without passing out from exhaustion.
Dante's appointment was scheduled for 1PM. However since the actual medication had to be brought in via special courier, it wound up not getting there until 2PM. You have to picture a hand truck with this contraption on it looks like shelves with this desktop platform and on it is a lead lined case with a led panel and a console panel with numbered/lettered buttons. It looked like one of those bombs you see on tv (like 24) that are time bombs set to go off...
The lead lined case thing is offputting as well. Seeing the technician avoiding walking too close to this contraption did not inspire confidence either. However, we set off as they had a special area in the hospital for doing this proceedure. Think of long winding hallways....i morbidly thought of the prisoner taking that last walk on death row.
We get to the room and its got "Danger Radiation" signs all over the doors...(which lock by the way) Its set up with these mini walls cubicle style, except these walls are lead lined. There was an attempt at normalcy, there was a tv a dvd player, some dvd's a radio(boom box) and a fridge with various juices and softdrinks. One of the nurses went and got a lunch for dante (tuna fish sandwich) which of course he turned his nose up at(typical dante move)
The treatment actually consists of them hooking dante up to a blood pressure machine and an infusion machine. His pressure has to be monitored while the medication is being administered. The medication comes in a tube(syringe) the thickness of a length of kielbasa sausage. and is kept under the top half of the "lead lined box". The bottom half of the box has the LED panel and buttons to set up the rate/dosage.
Basically they run a line intravenously and that is how the medicine is given to him. I say medicine but its really Radioactive isotope(s). Which is why there were DANGER, Radioactive Treatment in progress signs all over the place...and why when people wandered in (doctors and quite frequently) they would keep their distance.
Once dante signed off on the consent forms they started the machine to give him the dose....right around then the Radiation Chief of Staff came in to discuss what was happening now and what to expect (to a degree) afterwards.
Let's see.....i didnt pass out when they said he actually (dante) would be radioactive for a time right after the treatment
I didnt pass out when they told me that i should maintain 3' distance from him for at least 24 hours
I didnt pass out when they told me that he should probably use disposable eating utensils and plates for 24 hours at least because of residual radiation.
I didnt even pass out when they gave me cards to present if need be to anyone from homeland security(no i am so not kidding) if they picked up the radiation on him (which they could) which would explain that he just received treatment
I did catch a headache when the Radiation (person) produced a geiger counter to measure the radiation near dante , and told me that i would want to stay on the other side of at least one of the lead "cubicle walls" because of the radiation (risk of exposure)
My stomach gave up when the "doctors" passed through to see this "marvel" and were standing behind me discussing how "neat" the machine that administered the dosage was - and how they used to have to do it by hand...
I was given a printout of all the appointments, medications and times that dante would have to keep up with. Its so long I couldnt even get into reading it. I will have to put it in my calendar or we will never remember any of that stuff...
We actually were trying to watch Dick and Jane, i couldnt really get into it that much since the sound was low and i was not allowed to get closer than 5 feet away from him...They tried to get me to sit down one stall over and i was like naw im good...i had a flash of a thought thinking im not going to act like my son is a pariah and we pretty much chatted all the way there on the train - i wasnt going to "stop" at that point.
My point was to try and keep his mind off of all this that was going on by if nothing else keeping up some conversation...i knew he was nervous....and i knew he wasnt feeling all that great because he told me so when we first got there and i know dante if he tells you he doesnt feel well he DOESNT feel well at all.
Im probably going to write more about this but right now my head is spinning and i have an ignorant parent who could care less about whats going on over here...who i need to call and hopefully not curse out...
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July 6, 2006
Heavy...
I try not to but I worry - about Dante and his health, although I know he hasnt gotten sleep like he has been getting since he's been back in a long time. He's back on taking his pressure 4x's a day....he's on so many medications right now its hard to keep up with all of them. He's scheduled to start testing again starting tomorrow...and it's as it has been so many questions and no answers...we actually had a cool moment on the 4th when we were redoing his NSBE membership online. Sometime's its so hard not to cry - like now...
the documentary thing he did is supposed to be coming on in about a week and a half...im going to try and tape it this time. We had taped it before but God only knows where that tape wound up during the move.
My heart is real heavy today - i usually or i should say of late dont let myself think about dante's condition too much. Past experience has taught me that it Immobilizes and is not a really good idea...but im really vulnerable today...my heart is real weighed down...i hate thinking about the damn tests he has to take...i wish he was out somewhere enjoying his summer instead of having to undergo another battery of tests
funny advice - "go do something to take your mind off things".....im at work....i can't "go" anywhere and what would one do specifically to take one's mind off of this stuff?
inquiring minds would like to know
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November 26, 2005
Home for the Holidays
Well Dante came home for the Thanksgiving holiday....which was pretty tame as far as these things have gone throughout the years. i didnt cook this year, didnt feel up to it besides I was flat busted....I had some change stashed to take dante to the movies - the latest harry potter to be exact. But that was about it. I had to wind up borrowing from Samson and im hating that completely but i had no other options available to me aside from robbing a bank.
The so called "traditional" thanksgiving is something i dont think im ever going to experience..haven't so far..I am actually looking forward to going back to work...sitting around the house is not all it's cracked up to be...especially when your pockets are full of lint....
In spite of all that Dante and I had a good time....it was cool going to the movies with him we haven't done that in a long whlie. He's been hanging out in my room a lot while he's been home...we even got to play a couple of games of playstation, we watched movies..and just generally hung out together which was cool. He's leaving in the morning and then its back to the old drawing board.
You know how hard it is to make ad keep up with friends when you are flat busted?
It is looking like I will be getting very busy after the first of the year and im praying that things go the way they need to so that i can take my leave of that crazy place that I work in out of necessity not choice. I know my days are numbered there....i just would prefer to leave on my OWN terms but we will see...
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October 7, 2005
Clouds with Silver Linings
Lest this take on an entirely too maudlin tone....Dante will be coming home for a visit this weekend...his school situation seems to be working itself out. He has it seems worked through his problems with financial aid and has made impressions on some of his teachers and staff....so much so that they are working to get him over to the Honors Dorm to which he is supposed to be in the first place since he is attending honors college at Drexel.
He is that one bright spot in a land where darkness looms - he always has been...
HE is also committed to volunteering with a local community group up by his school that works with displaced and homeless families...no small feat since he is behind on most of his classes because of his bouts in the hospital but he WANTED to volunteer and has...and there are no words where this kid is concerned....there are people out there right now..some may even be reading this who have none of the issues he has had to face these last months and who would not give even an hour of their time in such a fashion.
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October 6, 2005
Being a Mother....
You never can fully rest with a child fighting cancer. You never can fully let that breath out because if you do it's guaranteed something else will come up. This is what happened when Dante finally went away to college. I foolishly believed once he got there i could let that "breath" out but I was wrong. He wasn't even there a week when he took ill had a bad bout of nausea and had to be rushed to the emergency room. I got the message from the doctor as i was literally coming into the door of my home and had to turn right back around and run to penn station and try and catch a train into Philadelphia.
I wound up getting to the 30th street station at 11PM that night...i got up to see dante not too long after...although it was real dicey that time of night around there not many people and a lot of highway type streets....i toyed with the idea of walking to the hospital from there but decided finally to get a cab...praying that i would not get stranded with no way back home...
I got to the hospital and they had him in ICU...he looked like he had lost about at least ten pounds...he's never really looked sad when i have seen him but it took me back to the summer of 2004 when he was in icu all summer...I looked at all the iv machines and the a-line machine and felt like i had been swept up into some horrible deja vu. He was really sleepy when i first got there and basically kept nodding off although he did wake up long enough to see i was there....
Since there were no extra "beds" in the ICU unit, they only could give me some blankets and i had to fashion a bed of sorts out of two chairs...which in hindsight i need not have bothered with....Dante's A-line monitor kept going off and the way the chair was positioned i would wake up staring at the numbers and feel my heart pounding in my chest - i felt like i was going to have a heart attack myself a few times waking up and seeing pressure readings of 255 over 130 - needless to say sleep was not really going to happen that night.
They put him on a liquid diet later the next day which he tolerated well and they decided to then later that day if he had no more nausea to discharge him. Which ultimately they did.
I dropped him by his dorm room and also went by 7 eleven with him to grab a quick bite and then i headed back out of philly and back into the city....i got back that night after nine and i turned around and went to work the very next day. No sleep till brooklyn...no sleep in brooklyn for that matter either.
Saturday was Innocuous by comparision. Nothing much was going on. Until i got a call late saturday evening that Dante had brought himself to the emergency room again because of nausea....at this point now im thinking how the hell am i even going to get up there...turns out my mother wanted to go so i got a ride with her...and this time they had him in a room on the unit.
He actually looked better this time than he had the last time...although again those iv machines....i guess i will never like those things given the circumstances...
I took my mother by his dorm...i had to go pick up his Thalidomide because the hospital's policy prohibits them from dispensing this medication to patients and so i had to go get his from his room so that he could continue to take it.
We stayed most of the day and headed home that evening...again i got home after nine and got up the very next day to head into work.
I say it that way because i got so little rest in the midst of all this that it was inevitable that i would come down with something as my immune system always takes a major hit when i don't get any rest...on top of which i really haven't been eating properly at all...I try but when you have no appetite...or you are rushing frantically trying to get to your sick child....eating seems superfluous....
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September 23, 2005
Time Passages
Dante graduated a long time ago from the little boy that used to always wind up his way into my bed at night to go to sleep..even when i put him to sleep in his own bed.....
He may not do that but sometimes - every once in a while he will do something that will remind me of that little boy. I hadn't heard from him for a day or two when he left to go to college> today he's called me three times already. I miss him too.....and we both shared a laugh when he said he finally got out of this house....God i wish i could too...He says he feels good. I think hes making friends someone let him use their cell phone to call me tonight
When i close my eyes i can still see the little child playing with his brio train set on the living room floor....but i open them to a young man who has moved out on his own to attend college at a presitgous university and i just wonder where all the time went....
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July 30, 2005
We didn't start the Fire..
Thalidomide and Celebrex....this is what they want to put Dante on this week. The thalidomide has been used in other forms of cancer to kill the blood supply to existing tumours...Of course with this no one knows how or if it will do anything...Nice thing about rare forms of cancer...
We had to do a phone verification with the makers of Thalidomide because it is so tightly regulated....and rightly so...I think i am still in somewhat of shock that this is what they wanted to use. I keep hearing that line from the Billy JOel song...We didnt start the fire...over and over in my head...
we BOTH had to sign documents that Dante would not have unprotected sex while on this medication.
Even if taken by a male if he impregnantes someone the baby WOULD be grossly deformed or even die in child birth.
You start to wonder if the horrors ever stop...and when....
you cry continuously on the inside..but never on the outside...
Your body mind and soul become exhausted
And there is no rest...
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July 13, 2005
Dr. Frankenstein....
They are going to have to reconstruct dante's bladder. I dont know when but I do know that much. Today's doctor visit confirmed that. They evidently have a board of resident doctors at the hospital that determine the course of treatment on patients and i guess especially in this casethey are going to meet and discuss what the group or the majority feel would be best to do in this case as far as treatment and surgery goes.
He seems a little more touchy than usual today. Seemed a little tired this evening. I guess all this is wearing him down...me too...You never realize how much hurt your heart can stand...until you go through something like this. I really need something really good to happen in my life soon...before i run out of reasons to stay upbeat...each day it gets harder and harder...each day i wind up with more and more i have to "overcome". It's not supposed to be like this...
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July 12, 2005
Choices
It's sheer lunacy that a parent of a sick child in the midst of appointments and scheduling for treatment for cancer has to decide whether to go to work and maintain financial stability or to be by their child's side while they are going through all these proceedures. Yet thats exactly the choice I have to make. Guilt does not even begin to cover it and the only saving grace in all this is that the hospital where he is seeing doctors and getting tested is up the street from where my hospital is(where I work).
However it is not like I can sit and hang out with him while he is getting all this done. I have to keep running back and forth because I am still on the clock and I can't afford to take any more days off. Since I am a new employee(less than a year) I have no time to take off and I can't keep taking off anyway because the spectre looms large when they go to review my time here and see so many days spent out. The flip side of all this is that If i said the hell with all that and stayed with my son(which is where my instincts want me to be) then i would lose my job, be unable to pay my bills, and be out on the street.
Isn't this lovely...
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July 2, 2005
Unexplicable
There is a point at which, after continuous gut-wrenching, stress leaves you feeling like you have been run over by a truck several times and then in this case have to get up like nothing just happened. The graduation was a major high but was way too short lived. The surgery was and is tense filled, on edge, now what next type of situation.
I miss Dante, even though he wasn't technically around me all that much when he was home, I guess just knowing he's not right downstairs and that he's in a hospital, just doesn't sit well. Don't think it should. Even though he sounded better today for the most part and he did actually get up and walk around, theres this part of me that feels eternal sadness...
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June 29, 2005
No Sleep Till Brooklyn
I remember when Dante was around maybe ten years old or so. Not too long after his father moved out. He had this thing where he started falling asleep in my bed and would even if i sent him to his bed at some point during the night he would wake up and get into my bed. It was kind of an unspoken thing that he just would do it..because he was either scared or missed me...I am reminded of this because today he came up this evening and I didn't think he would since hes taking all this crazy medication to clear out his system in preparation for the surgery tomorrow. He's taking six pills every four hours - antibiotics to "disinfect" his lower bowels..fleet soda that he has had to take twice today that in and of itself is so incredibly horrible tasting they had to give him something to take for the nausea that is usually caused by taking it. ..and he is as of right now on a clear diet but cannot have anything more to eat after 12 tonight.
Which for those of you that don't know he's been running to the bathroom all afternoon and evening...
He came up and he went and sat on my bed and i was so much reminded of the times he would fall asleep on my bed. Tonight's a difficult evening by anyone's standards...I doubt i will get any sleep...
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June 28, 2005
see..
Six in the morning I get a call from my mother who completely forgot our conversation the night before where i told her dante had to go in for pre testing this morning at eight and when i reminded her about it she wanted to know how I was going to go pick up dante's diploma and awards today and to make sure her mother got breakfast before i left..
This again is why i feel alone...not even my mother helps
Posted by digitalmuse at 11:54 AM | Comments (0) | TrackBack
Breathe...
i don't get time to bask in the afterglow of Dante's accomplishments. Tomorrow morning bright and early we have to be at the hospital for pre-testing prior to his admission for the surgery that is scheduled for wednesday.
When I should be jubillant and exhillarated over today's events, i have never felt so completely alone..
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June 26, 2005
The Graduate
Dante Da'Vaughn Angerville
Age: 17
Grade: High School Senior - Valedictorian Graduating Class of 2005
GPA: 3.8
Awards and Honors: Who's Who American High School Students, A.J. Drexel Scholar(scholarship awarded to top 15% of applicants to school), Challenger Award, Gold Medal in Social Studies and Science, The Michael Wallace Award - for outstanding achievement in Computer Science
Community Service Award-Brooklyn District Attorney's office/New York Police Department
Advanced Regents Diploma
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June 23, 2005
He did it again...
Last week Dante was really not feeling well and was having bouts of pain and bleeding. So much so that he wound up going to the hospital twice and having a ct scan done. They didnt see anything of note and he is already scheduled for surgery on Wednesday of next week...nothing was done except give him some pain medication.
Unfortunately one of the days that he was out was a day that he was supposed to take a Vocational-Comp Regents....long way of saying a regents exam in your specialty that adds an endorsement to your diploma. In this case Dante' would have had an Advanced Regents Diploma if he passed it.
The Regents board however apparently does not allow for make up exams. Even though the assistant principal did try to arrange for him to take a make up exam, it wound up not happening. That friday that week He was told to come in and take the Spanish regents..which he had the spanish regents class but for some reason was never sent a notification about taking that regents and actually from what I was told was not on the schedule to take it.
However he did go in and take the exam. He later told me that he really didn't feel he did well at all on the test. A lot of the questions were on things that he said were not covered in class. The oral part of the exam he really felt like he botched up badly and so I just told him look you passed several regents exams your work and your record already speak for itself don't get all bent out of shape over this.
Well after having that conversation and pretty much figuring that he would deal with a regular diploma, I got a call today from the assistant principal letting me know that Dante had passed his Spanish Regents with a 73 and that his standing with regards to his diploma would be Advanced Regents ....and i found out on the way home on the train and wound up crying most of the way home...
Go figures
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June 21, 2005
Up and At 'Em
This morning was a challenge to get up and get moving. Seemed like I just couldn't get into gear. I actually thought about not going in for a moment, but then I thought about the paltry pay check that I already am going to get from having to take off next week and decided to find some way to get my azz in gear.
Dante has to be at the hospital today at 1pm for his injection for the mibg scan on wednesday. I was going to try and meet up with him If i can I need to call him though i think he plans on being here at 1 thirty and its actually at one...
Didn't have much of an appetite this morning. Got a sandwich but only ate half of it. Working on finishing some orange juice but that's even becoming a task. Spoke to the Home Attendant Agency and they are sending a new attendant over starting tomorrow. God Help Us...
The one good thing I did find today is that the ironing spray mist thing that I picked up this weekend is great. smells wonderful and not overpowering either. I have to find out where I can get this stuff on a regular basis its cool.
Now on today's agenda, Fundraisers for Team including Ice Cream Social and BBQ or Fish Fry.
There's more but why bother. Maybe later...
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June 20, 2005
Night Falls
Another weekend comes to a close and as night falls so do the tears. Slowly and in singular fashion. No relief in numbers as the pain that caused them also refuses to let them flow freely.
As I contemplate my son and his battle, literally for his life right now..My mind can't even conceive the enormity of what is going on now and what will go on in the next few days. It is too much. I see what others don't. The determination on his part not to succumb to his circumstances, the refusal to accept anything other than what he has put before himself. His fight to keep it together in order to finish out his school year and to attend his graduation. My God how it just cuts me so deeply to see this child keeping this brave face, knowing that he's facing surgery yet again. Each time he gets a pain or sneezes or anything you get a sinking feeling in the pit of your stomach. Which you cannot give voice to. AT this time in his life when he should be rejoicing and celebrating his accomplishments and his successes, he is instead fighting to stay alive and to beat the cancer that somehow came back and now is causing him to have to undergo another round of surgery. Ironically two days after his graduation.
The last week or so has been incredibly difficult as he has had bouts of pain and bleeding and has had to rush to the hospital on two occaisions, each time wondering if they were going to admit him and do the surgery on the spot.
For the record there has not been any medical indication so far that they need to do surgery sooner than the June 29th date they already have on tap for him. CT scans and soon another MIBG scan aside they are just pinpointing what they already know. That the small area left behind in the last surgery needs to be removed. The cells are starting to grow again and they need to take out as much as possible and this time, treat him afterwards.
No one understands what I would give to have my son healthy and whole and not have to go through all this. My life I would hand over without so much as a murmur if I could take all this from him I would. But life is not so simple and this is nowhere near that simple. A sacrifice while noble, would make no difference at all in his circumstances. AS a parent, one who is looked to for answers and for guidance, all i can do is pray...and keep my tears to myself.
The ache that I have in my heart has no words that can explain it. The pain that I feel for this child....is unbearable and yet I have no choice but to bear it. The hurt in my heart is so deep and yet I know that come the dawn I have to get up, get showered, get dressed, and face another day. Minus the tears that only come at night...when I am alone and allow myself for a moment to think and feel. There is no greater hurt or pain than to see your own child suffer and know that there is not one damn thing that you can do about it.
And to mitigate all this, not one blessed thing, not one blessed soul. IT is the way I am told with this type of situation, people do not know what to say or what to do so they do nothing. My phone sits silent most nights. Save calls from coaches regarding their players or tournaments or other basketball erratta. No calls come in asking how I am or even more importantly if there is anything they can do or if they can help me with anything. I bear this all alone. If not for God's mercy I have no idea how I would continue to manage. Yet I do
If someone had told me years ago that I would be at this point with my child...fresh on the heels of unbelievable betrayal. Not even given the moment to refresh from one but the two merging like an evil dark black hole...from which i fight every day to stay out of.
Weary I may be, and yet i continue not knowing anything else to do but move forward.
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June 18, 2005
Mo' Stress
Been out of my mind with worry ....Dante was in the hospital two days this past week, because of these bouts of pain and some bleeding...they did a ct scan and didnt see anything of note..they did give him a prescription for percocets...which im not real happy about either..but now I feel like we are in "is he going to make it to graduation day" mode.
I have been feeling like I need to cry for a good hour or two but never can find the time/opportunity to do it...so i feel like im overstressed...similar to the feeling when you stay up way too long and you are so tired you can't fall asleep easily.
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