Well, folks. It's time for another update. This one, a slightly different tone than normal. A happy tone.
This week past (as in last week), I had something hit me in the face, much like a hammer. Nothing unpleasant, but something very, very unexpected. Simply put, what hit me was literally the words "It's all going to be okay."
For what we've been through for nearly three-and-a-half years wore through me, as much as it did everyone else as well. And to sit down, and see Tanis making it to First Grade, playing soccer, playing baseball, and watching his mind return, after we nearly lost him and know that he's okay... You can't express how that feels. I'll admit to crying about it (yes, even this heartless soul does cry from time to time). I have my son back a little more each day. I said that three years ago that I lost my son. Now I have him back, and the most important promises of my life have been fulfilled with him. The hard road, the difficult path, everything that lead us to this point have come to where we see the end. January: We get rid of the damnable mediport. The hard road ends there. I have my son, so this road isn't as rocky as before.
On top of that... Blue's in Pre-K. Oddly, it was more Blue that prompted the steel pipe in the face revelation that I had than it was Tanis. My fear has always been that Blue will have a major resentment against everyone for treating Tanis so differently. I worked (and still work) tirelessly to make sure that he had as much as I could get him, and to make him feel wanted and appreciated. Those things are hard when you have another who has more needs than a normal child in the equation. I'll admit to this making me very cranky upon occasion, but for the most part I think I weathered it well.
What did Blue do that hit me? He went to school. That doesn't sound like much, but Blue is still an innocent. He still seems childlike, still holds that sense of wonder. Tanis lost that two days before his third birthday. It kills me inside to know that, but also to know there is nothing I can do to fix that. I wish that Tanis could have that sense of wonder back. He's been through so much, perhaps too much. We all have, as part of the nightmare. To watch Blue be a child, and know that he's happy, and wearing it on his sleeves (so to speak), makes me relax just a bit. I know Tanis lost this time, and I'm doing my best to make sure that Landon doesn't, because THIS time we have a choice.
The lyrics here are from a song called "I was there" by Green day. Oddly fitting, given everything that has happened, and I want to share with everyone.
"Looking back upon my life
And the places that I've been
Pictures, faces, girls I've loved
I try to remember when
Faded memories on the wall
Some names I have forgotten
But each one is a memory I
Look back on so often.
I look into the past
I want to make it last
I was there
I look into the past
I want to make it last
I was there
Looking back what I have done
There's lots more life to live
At times I feel overwhelmed
I question what I can give
But I don't let it get me down
Or cause me too much sorrow
There's no doubt about who I am
I always have tomorrow
I look into the past
I want to make it last
I was there
I look into the past
I want to make it last
I was there
Looking back upon my life
Faded memories on the wall
Looking now at who I am
I don't let it get me down.
Looking back upon my life
And the places that I've been
Pictures, faces, girls I've loved
I try to remember when
But I don't let it get me down
Or cause me too much sorrow
There's no doubt about who I am
I always have tomorrow
I look into the past
I want to make it last
I was there
I look into the past
I want to make it last
I was there"
I was there. We leave for Disney World in 27 hours, folks. I plan on enjoying it to the fullest.
ESOM, my friends.
Steve
That is great news! Best wishes for the future for you and your family, and kudos for standing together through these years. I cannot even begin to imagine what an ordeal this must have been. Showing this much care and patience is very extraordinary and admirable.
Now, off with you to Disney World and enjoy the new life! :-)
Stefan
An update of happiness again, and I could certainly get used to these.
The past few days have been great. The trip went very well, and fun was had by all. Both Tanis and Landon got to ride rides, and there wasn't much fighting or other nonsense going on while we were there (although they both got wore out... a lot).
So, our agenda included a day at the Magic Kingdom (Friday), including a trick-or-treat party, a day at Epcot (Saturday), and a day at both of those. The last time we were there, we found that the Disney/MGM studios and Animal Kingdom weren't really all that good for their ages, so we kept it to the above two parks.
Due to another unforseen circumstance, our Monday that we were going to be there got cancelled (due to St. Louis not being able to move our appointment day away from a Tuesday). Oh well, we still had fun.
Trick-or-treating at Disney was awesome. There were characters in costumes (goofy and stitch dressed in space suits, among others), and lots of candy. They made a path of Candy for the kids to stop along (and we got sooo much candy... Seriously). It was worth it to go. The parades, everything was just so much fun to do. This was in addition to the rides we did that day. Honestly, though, we didn't have more than a 5 minute wait in any ride all day. That was what made it so nice, it was just so fast-paced of a day that it flew by. (Oh, as part of the Disney Dining Plan, we had a late lunch/early dinner at a buffet with Pooh, Eeyore, Piglet, and Tigger. Landon hugged them all, and Tanis thought it was pretty cool, too.). 13 hours in Disney... check. Serious exhaustion: Double Check.
Day two at Epcot started a wee bit later. We got there and went straight to lunch (Tutto Italia, again the Dining Plan.). Then, of course, Test Track (fast passes are very handy), and Mission: Space with Tanis, while Mrs. G. rode Under the Seas with Nemo. Really, it was a nice day of rides and the imagination halls (lots of games. There was one that put a side version of you into a video game. I thought that one was rather ingenious. Very similar to something I saw on a game show (can't remember the name). Anyhoo, the whole thing was great, and then we got to eat at Coral Reef (the best seafood I've had in a very long time). The best part was that, even sitting in the 4th tier back, we were able to see the aquariums, and the boys were mesmerized by the fish and the scuba divers waving at the crowds. It was amusing to watch Landoon wave at the divers from that far back, but he enjoyed the whole evening there. We had great timing, as well, because there was a it of a rain storm while we were eating, but it was gone by the time we got out of the restaurant, allowing us to enjoy the rest of the day.
Day three at Magic Kingdom, Epcot, and back again. Lotsa fun, but also the busiest day that we were there. I think it had something to do with the fact it was Labor Day weekend, and people were just getting there from driving on Saturday. We fast-passed our way into Test Track twice, and went on mission space twice. The whole day was great. We watched the fireworks here, from Ariel's Grotto. It was fun with fireworks both in front of and behind us. The boys fell asleep on the way back to the hotel room.
Of course, there are always more things to do, and more to talk about, but these were the highlights.
Welcome to one of the easiest and hardest updates to make.
Tomorrow, December 21, scheduled for 1:00 PM Tanis is having his Mediport removed. This is a happy update... and one I'm glad to finally see.
Sadly, we don't get to do this where we choose. We have to do it at Illinois Children's Hospital in Peoria. This is because Carle apparently doesn't have a surgeon to do the surgery... Yet another thing to think about when I think about the Children's Oncology center closing last year.
So, provided the insurance gets in line with what has to happen (recurring theme with the Mediport, if you all remember), the surgery will be going and we should be home tomorrow evening with the Christmas wish.
Thinking back, it was my birthday when Tanis came home from the first part of therapy. Now, he gets the Mediport out for Christmas. He's actually excited. He's happy.
He's ready.
Merry Christmas, Happy Solstice. Remember the longest night gives way to the brightest days. Those that lay ahead.
ESOM, my friends,
Steve
Welcome to the longest night. Let's hope that the brightest days lie ahead.
Surgery went well, we got home earlier than expected, and outside of that I can't say much. Today's been a bit harrowing, mostly on the insurance side of things.
Outside of that, Tanis has Pinkeye (otherwise nothing bad today).
More updates when I'm not harrowed or exhausted.
/d
Welcome to the longest night. Let's hope that the brightest days lie ahead.
Surgery went well, we got home earlier than expected, and outside of that I can't say much. Today's been a bit harrowing, mostly on the insurance side of things.
Outside of that, Tanis has Pinkeye (otherwise nothing bad today).
More updates when I'm not harrowed or exhausted.
/d
You are in my prayers. I do hope that things go MUCH better for you and your family. I also hope that Tanis gets over his pinkeye soon. Take care and have a Merry Christmas and may next year be better than this year was!
Thanks to all... (Even Heathy... thanks for the brevity).
So, the week has gone well for me and mine. So far Tanis is handling the fact he has no mediport anymore very well. He's ready to start running and jumping (none of that until January 5, Doc's orders... I'll listen this time).
The oddity of it all is that he got to keep his mediport. It's considered "biohazard," but it was a part of him for 3 and a half years (wow... it's been that long). I think it's right he got to keep it. He came out of the surgery at about 3:30, and we got to leave by 4:30... the shortest period of time we've ever dealt with a hospital. I have to thank our nurse (can't remember his name), because he got everything in order quickly, and we beat the supposed bad weather that was coming.
The boys had a great, easy to handle Christmas. I'm glad to have seen them in this respect. I still see our youngest with a small bit of pain, knowing that Tanis didn't get what he has... normalcy. I think that is the hardest part at this point, but now Tanis gets to be a real boy... not just Pinocchio with strings (meds).
To anyone who deals with Health Insurance regularly: there has to be an easier way. I could rant for hours, but, essentially we didn't get our approval for the surgery until 15 minutes before surgery was scheduled. I would have to say that shaking with rage at the absurdity of the whole thing was the worst part of that (I started calling at 8:00 AM to make sure everything was in place). I have to thank our primary doctor's nurse for getting everything done... with me calling every 15 minutes, and refusing to talk to anyone else.
I'll end this now, I'm sure I'll be posting New Year's Eve with my end of year wrap, but this will do for now. Merry Christmas, or whatever other holiday you're celebrating this time of year.
Blessed Be,
Steve
Glad to hear y'all doing better - Still wanting to know: did they find the cause of the problem? A cousin of mine has cancer in the foot and it may be linked to something as simple as a single Uranium Atom picked up as dirt in a pair of shoes as a kid. Horrid to think that is all it took.
Wish they did have a better explanation. They said it was a flip of DNA on a white blood cell, the other cells seem normal. Nothing genetic, just a fluke. I'd get into that elsewhere, but that's what I've got, really.
/d
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Sorry; it's a long story, but the spamming was for a good purpose...
Carcinogenesis happens due to something causing dna to go wonky essentially. There's often really no way to prove what actually happened.
Cosmic rays, chemicals, genetics that aren't 100% fully understood, smoking in lung cancer, radon gas from the ground, just something needs to bang a cell's dna out of whack.
Marie Curie used to walk around with a radioactive sample of radium in her pocket, so her cancer was a no-brainer in hindsight.
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My prayers are with you and yours at this time. I am so glad to hear that your kids are doing better. Though he has missed some of his childhood is tragic. That he has now the rest of his days to catch up is a nice miracle. Thank G~d for our modern medical practices, and our doctors and nurses who help us through tough times like this.
Sorry; it's a long story, but the spamming was for a good purpose...
Carcinogenesis happens due to something causing dna to go wonky essentially. There's often really no way to prove what actually happened.
Cosmic rays, chemicals, genetics that aren't 100% fully understood, smoking in lung cancer, radon gas from the ground, just something needs to bang a cell's dna out of whack.
Marie Curie used to walk around with a radioactive sample of radium in her pocket, so her cancer was a no-brainer in hindsight.
I'd like to hear that story, Heathy. Curiosity begs me to ask why you know this (and why you are never away from the boards, as well).
I'm a nuclear medicine technologist; I do PET scans. I'm "radioactive guy" I guess.
Thanks, I'm glad to know that now. Thank you very much.
I'd like to hear that story, Heathy. Curiosity begs me to ask why you know this (and why you are never away from the boards, as well).
I can elaborate the next time I talk to you, so as to avoid dredging up the reason on the forums again.
RPG Superstar 2009 Top 32, 2010 Top 8
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To anyone who deals with Health Insurance regularly: there has to be an easier way. I could rant for hours, but, essentially we didn't get our approval for the surgery until 15 minutes before surgery was scheduled. I would have to say that shaking with rage at the absurdity of the whole thing was the worst part of that (I started calling at 8:00 AM to make sure everything was in place). I have to thank our primary doctor's nurse for getting everything done... with me calling every 15 minutes, and refusing to talk to anyone else.
<snip>
Blessed Be,
Steve
I work insurance, so if you have any issues, hit me up on facebook or at The_Livewire (at) hotmail.com. Not that I can do much, but I can try to help walk you through the hurdles.
I'm really glad your son is okay, and I'll prey for him to stay that way. I have to ask why Grim Graycastle?
I'm really glad your son is okay, and I'll prey for him to stay that way. I have to ask why Grim Graycastle?
Thank you for your kind thoughts & prayers (I pray for the same thing!).
To answer your question:
Grim Greycastle was a very (in)famous scoundrel that I was playing in KnightErrantJR's Mistledale Campaign when my son was diagnosed. I titled the thread that way because it was an escape from the nightmare that was... even though I know what was in it.
That and the jokes that helped me get through everything early on included What Would Grim Do? (Started by KnightErrantJR and the rest of our gaming group, no less!) Especially since they didn't have a scoundrel anymore without me :P
Hope that helps.
/d
PS: If you are interested, the Mistledale campaign journal is easily accessible here, start on Alturiak 1st - 29th 1372DR to find out more about good old Grim, that's his first apearance.
I played from 1st to 20th level with a character also named Grim Greycastle (Grim has a in character son) and I was looking for the profile of the person who played him when I saw this thread. Took me off guard.
I played from 1st to 20th level with a character also named Grim Greycastle (Grim has a in character son) and I was looking for the profile of the person who played him when I saw this thread. Took me off guard.
Sorry for the jolt, there. Not exactly the 'most pleasant' of things to walk into unexpectedly (both reading and going through in real life).
/d
Welcome to the year-in-review. A little later than planned, but here nonetheless.
This year was the best I've seen so far in my 28 years here on this planet. Everything went wrong for so many, yet my family seemed to have thrived. We became better this year. Things that didn't seem possible three years ago happened this year, not all of them are good, but the ones that are most important were.
Tanis "Grey" finished his therapy June 13, and only 10 days ago, December 21, ended his relationship with the Mediport kept in him for delivery of medicine. The surgery was a success, and there have been no infections (other than some pinkeye that has gone away).
Even better is that I see more of him every day. More of him meaning less "cloud" from the medicines. I see a 6-year-old, not a zombie. That is greatly rewarding given the past three-and-a-half years of not seeing him. I got my son back from the medicines that held him back and down for so long, and that is a wonderful feeling that nobody can take away.
My youngest, given everything that we've dealt with Tanis, has had his own issues this year. 11 cavities (and he has better oral hygiene than Tanis!), but he's done everything and handled it so well. He's also had some blood work done, sitting still for the needles (worries of Anemia, but that was disproven). He's a happy, smiling child, and he perceives everything and wants to be a part of it all. At the same time he lunges for me and is such a happy, healthy child, it does pain me that Tanis didn't get that.
Of all the things we've been through, it's the lack of normalcy for Tanis that bothers me the most. That is the hardest thing to see, especially since I see 'normal' kids all the time.
More than that, I see everyone more, having changed employers last year (thanks Sharoth for your help in that decision, and the out-of-the-box thinking that I needed), and we are much more financially stable than we have been in years (I even moonlight at my old job, as they still need my help... great compliment to me to get those invitations back). My wife, Mrs. G., went back to work last year and has stuck with her job and likes what she does now, and she's not afraid of the possibility of loss anymore. Standing on our own two feet feels pretty good after leaning on everyone for so long.
In short, this year has ends on a very high note for my family, with next year looking as if it will be better than this one. So, this year coming, we stand tall, we walk with a bit more spring, and become hopefully more than we were the previous one.
I hope all of your new years look as promising as ours.
Happy New Year, and God Bless.
/d
Congratulations, and happy new year! Prayers that you and yours continue in the path to recovery without further incident. :D
Congratz, Darkmeer on everything. I am VERY glad that I could be of any assistance to you and your family. Just remember that I am a phone call away. ~gives a sheepish smile~ especially since I forgot to save your phone number. ~grins~ I will send you and e-mail, my friend. May 2010 be a better year than 2009 was for you and your family!!!
A 4-month hiatus... wow.
A lot happens in 4 months.
Tanis is 7 now (turned seven on April 2). He's pretty well a normal 7-year-old. He's running, jumping, and he's even getting faster at his running (just remind him to bend his knees while running). It's still odd to look at him, and see some semblance of innocence coming back to him. He'll always have something stuck on him, but I'm glad to see Tanis again.
It still amazes me that I've got my son back after all this time. I can't believe that four years ago, we were on the verge of losing my son. I'm still affected by seeing normal children, even little Blue hits me that way (more on him in a moment).
Now, onto Blue. He's 4 now, and he had both his tonsils and adenoids taken out due to them being too big. The surgeon talked to me as if I would be petrified of the surgery, and I laughed. This is "normal" to me (my brother had his removed at about the same age). So, I don't think of it as an oddity. He's got a voice that sounds like he's been on helium, but otherwise he's happy and doing boy things. He's still got his innocence about him, too. He doesn't seem marred by the experience.
Now, onto me:
I'm advancing in my career, and I'm (finally) holding steady with what I do. I'm very consistent with what I do, and I'm glad for what's happened. The former employer even lets me come back and do color commentary during some of the fun things they do (yay!). I'm also on track to start getting myself back into a good working order, having some stuff done that I've been putting off for 10 years myself... And it's a good thing, too.
As to Mrs. G, she's still at her job, and she's happy. She seems to be coming to some of the same realizations I am, and that's good.
Now, for the Summer (in case I don't get back before July...)
Tanis is doing slow-pitch baseball (learning league) again this summer, and he's going to have a blast.
Blue is going to do T-ball this summer.
There are a few other surprises, but I'll leave those for later so I don't get my hopes up. I've got maps to finish for my PbP games... and I have a certain Knight to pester.
Bless you all for putting up with my gushing, and thanks for the tolerance, as well.
Steve