Hey Heathansson,
It doesn't look likely:
Day 253. December 8, 2006, also a short update. Simple and bad. Grey's Absolute Neutraphil Count (infection fighting white blood cells) is ZERO. We're in the hospital until it goes to 500, but we don't even know if it's going to go up for a few days, as it's been steeply falling. We're going to be doing this for a while, unfortunately. I'm hoping we get to be out for Christmas, but even that is up in the air at this point. Personally, I'd really like to know why the fark this happened NOW.
/d
Grim, I am sending my prayers your way. I wish there was something more that I could do for you and your family. Remember, we are here for you. You can talk, vent, or do whatever is needed during your troubles. Good luck and hopefully things will get better.
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Darkmeer, I kept reading the thread title over the last several months and thought this was a campaign/character journal so I just kept bypassing it and never realized what was in here. I just read every post from beginning to end. Your son's plight has brought every emotion to me throughout the reading. I laughed at the good, I clenched up at the painful, I cried several times. Tears and all. I am a stay-at-home father of a 3.7yr old and a 1.7 yr old and my only hospital experiences are a kidney infection at 3 monthes old for the oldest, and various shots and tests and illnesses. I can hardly imagine what you have been going through. I spent a full week running on 2-3 hours of sleep a night while the youngest was in the hospital due to fear of losing her to the infection.
I can't imagine the amount of time you have had to endure, and your poor son....god bless that little man.
I will hold you and yours in my prayers (we say them as a family every night before the kids go down). I wish I had clicked on this thread before just to lend my thoughts and prayers to your family. My sister-in-law had leukemia and we almost lost her 6 yrs ago over Christmas. She beat it and no sign in over 5 yrs now.
I pray you son recovers and is allowed to experience the things he hasn't be able to for so long, especially living without fear.
All my heart goes out to your family and you.
FH
Thank you very much Sharoth (And everyone else, BTW).
It's a might bit frustrating (okay, jumping up and down using everyone's favorite F-word for hours on end won't do any good, but it's a vent and I've seriously considered it). We've had labs drawn every day since Tuesday. No Influenza, No RSV, NO Bacterial Growth. What in the nine hells is going on here?! I noticed tonight that his stomach was a little puffy (he's an innie, and his belly button was most certainly an outie), so I told the nurses to check it out. I hope I'm just paranoid, but it seems awful strange that the counts hit Zero and his stomach blows up. Again what's going on? Grrrr. Not knowing is more frustrating than knowing (although I do sleep slightly better now than I did in April).
What's worse is I'm working EVERY day... Until Christmas day. So I get up, play with Blue, go to the hospital, play with Grey, Go to work to be late, leave work to go to the hospital, see Grey sleeping/cranky/play with him, go home, see Blue asleep, take him to bed and pass out myself. I'm shortchaning all of them, and Mrs. Greycastle barely gets out of the room. Heck, today I was asked why one of us had to be there all the time (any other parents out there see a problem with that question?). Simply put, with the counts so low we don't need extra exposure, AND with the counts the way they are, we have to sign all sorts of extra paperwork for changing procedures, so it really is necessary for it. On top of it, would you leave YOUR three-year-old if you had the choice? It kills me every day to go to work and put on my "happy Darkmeer" face for Johnny Q. Public, and then get the inquisition on my backside asking what I think I'm doing. The consolation: I know I'm right, and WE are doing the right thing.
Sorry for the cranky post, but it's bothering me.
/d
There is no problem what soever. ~sighs~ These type of events really suck. It reminds me of about 4 major events that were not fun.
1. When my ex- went through neck surgery. Not fun.
2. When her mom died. Also not fun.
3. When my dad's girlfriend died from throat cancer.
4. When my dad got sick and then I had to pull the plug.
I may not have been in your shoes, but I have experinenced those type of times. Like I said, I wish I could do more, but if we can listen, offer advice, accept that this is an area where the happy face can be set aside, then we all will do that and more. You are here with friends, so let us be that for you. Say the F- word as often as you need to. Cuss, scream, yell, throw things (But only after I have found my hiding place! ~GRINS~), or what ever else you need to do to help you through this hard time. We will deal with it (and send you the therapy bill later! ;-P ). Just do what you can for your son. We are cheering you on!
Holy cow man I just read the whole post. Dude I cant even begin to emagine what you and Mrs.G have gone through these last 8ish months.
Just now that me and my wife are praying for you and yours.
Good luck and may all of the angles of heven bless you.
Joe
There is no problem what soever. ~sighs~ These type of events really suck. It reminds me of about 4 major events that were not fun. *snip*
I may not have been in your shoes, but I have experinenced those type of times. Like I said, I wish I could do more, but if we can listen, offer advice, accept that this is an area where the happy face can be set aside, then we all will do that and more. You are here with friends, so let us be that for you. Say the F- word as often as you need to. Cuss, scream, yell, throw things (But only after I have found my hiding place! ~GRINS~), or what ever else you need to do to help you through this hard time. We will deal with it (and send you the therapy bill later! ;-P ). Just do what you can for your son. We are cheering you on!
Thanks Sharoth, FH, Drizzt. That vent made me feel better last night. And FH, I guess this is kind of a character journal/campaign journal. I nearly put this thread there, but figured it was off-topic. I appreciate everyone here praying, and sending good karma our way. I just find it incredibly frustrating going through this. As for the therapy bills, put 'em on Grey's Tab (I'm paying it all anyways).
Anyhoo, on to something that will make us smile:
I went by the hospital after work, and Grey was covered with marker ink and sterile tape making tattoos for himself. He had been a little warm or had rubbed his face with his arm, and had a Braveheart-style face with red and blue. It's the little things that make me smile. The whole thing made me laugh. He even added another pair of stickers for me to add two new tattoos, a Christmas tree and a christmas house (think the guy in Ohio's house here: http://www.snopes.com/photos/arts/xmaslights.asp ). He doesn't hold still well. I had to leave early b/c I need to get ready for 2 days of work so I can send Mrs. Greycastle home for at least a day so she can see blue. At least one night with Grey is better than no night with Grey.
The labs say his Abolute Neutraphil Count is at 30, still not happy, but better than yesterday.
/d
I know I'll end up e-mailing you or talking to you on the phone, but I just wanted to let you know that I can't even begin to express how much respect and awe I have for you for maintaining a modicum of sanity through all of this. It also kind of shames me some of the grumpy, incoherant, and ultimately unimportant rants I go on.
I just wanted to let know know that not only is everyone at the house thinking about you and praying for you, but I have to say that in a lot of ways I am very glad to be able to count you as a friend, if only because of the example in the face of adversity that you have set.
Talk to you later . . .
I know I'll end up e-mailing you or talking to you on the phone, but I just wanted to let you know that I can't even begin to express how much respect and awe I have for you for maintaining a modicum of sanity through all of this. It also kind of shames me some of the grumpy, incoherant, and ultimately unimportant rants I go on.
I just wanted to let know know that not only is everyone at the house thinking about you and praying for you, but I have to say that in a lot of ways I am very glad to be able to count you as a friend, if only because of the example in the face of adversity that you have set.
Talk to you later . . .
Hey KEJR,
I nearly called you after I read this... figured better as we do rant a lot (BOTH of us). Tell Mrs. Knighterrant I say "HI!" and tell the kids such as well, and remind one that I'm the devil :)I have a couple of quotes that, if done properly, show how you are to handle things:
"Behind every able man, there are always other able men." --Chinese proverb
"The gem cannot be polished without friction, nor man perfected without trials." --Chinese proverb
"A wise man makes his own decisions, an ignorant man follows the public opinion." --Chinese Proverb
"These people are my family, not just friends, and if you want to get to them you gotta go through ME." --Deuce(old shadowrun character of my brother's).
"He said, "Live with a man forty years. Share his house, his meals… speak on every subject… then tie him up, and hold him over the volcano's edge, and on that day, you will finally meet the man." " Shepard Book from Firefly
"When you can't walk, you crawl, and when you can't do that... You find someone to carry you." Tracey from Firefly.
I've got a big family. I also stand over a volcano that I occasionally need someone to carry me away from.
Oh, and this is playing in my CD player right now, by the Dropkick Murphy's (The song is "the Gang's All Here")
"The Gang's All Here"
Well the devil's nipping at your heels and this time it's for real
A lonely hunger starts to gnaw as you wash away the pain
Of another desperate dead end day forever filled with sadness
To forget about the pain you take your bottle, drink your grain
Chorus:]
Singing Hail, Hail, the Gangs All Here.
Leave your worries at the door boy, they're not going anywhere
Hail, hail the gang's all here
When the going gets tough, I know my friends will still be there
Well you're walking down the road and the wind is in your face
You're down and out and the unemployment line's a mile long
The money in your pocket may not get you through the day
But cheer up son I know a place where mugs like us belong
Chorus]
Pick your heart up off the ground though I'm sure it weights a ton
You're no better or no worse than any mothers son
Though you're up against all odds and you're backed against the wall
You recall the cheer, "The Gang's All Here" and shout!
Chorus]
Okay, this is the last post before bed... I'm exhausted. Hope you all enjoy this post (No more cut'n'paste tonight, I promise).
/d
Hey Darkmeer I was just talking with my wife about whats going on, and she has some ideas to shoot your way. Shoot me a line @ dndnutt@comcast.net and we can talk about them if you are interested.
later
Haven't been here for a while...sorry to hear things have gotten rough again. Darkmeer, you and your family are in my thoughts and prayers, and DON'T let anyone tell you that you and Mrs. G. should't try to be with your son 24/7. You guys are doing absolutely the right thing. I wouldn't leave my kids, either. I am thinking of you and sending loads of positive energy your way.
Namaste,
Fang
Thanks everyone for prayers & positive energy. I have good news to report (much to my surprise and delight). One should not doubt the power of good karma, prayer, and a very stubborn three-year old.
I'll keep this simple and easy. Day 256:
We're home. That's about what I need to say. Grey's Absoulute neutraphil count is 300, but all the labs they've been doing show negative for bacteria & viruses (and fungus would've already shown up, very badly). The original thought was that we would be in until the count rose to 500, but our doctor told us about all the labs (which we have copies of anyways) and said we'd see him Wednesday.
So, the now VERY punchy Grey is out of the hospital (note: you'd be punchy, too, if you were 3-years old and got put in a bubble, err 10x10 room with only one exit and a bathroom attached). Anyhoo, he's wound for sound and in great spirits. The only odd thing is that now he really likes sterile tape "tattoos."
On a side note: Blue is doing very well, smiling and squealing. I walked in with him playing with an N64 controller, and it was pretty funny to watch him pushing buttons, turning and smiling at us.
Hope everyone who reads this smiles as much as I did when I found out we were going home (BTW that was 8:02am this morning, and we left at 2:45pm).
/d
Gratz! I do hope that it stays that way and that it only improves from here!
Good to hear you're home!
Hope things stay good now. You all deserve a respite.
--Fang
Yay! *cheers*
Day 267
Merry Festivus (3 days early).
It's Christmas, and we're not in a hospital. Grey had a doctor's appointment today, and his ANC is a little low, but not terribly so. The rest of his counts were slightly low, which is about par for the course for us. The good of it all, Grey is a rambunctious little firecracker who is ready for Santa to show up.
Having time to reflect on the year, it's been one of surprises and disappointment for quite a while. The bright spots are there, don't get me wrong. It's just bothersome to see the mediport bump and scars on Grey. It's something he's going to carry with him for the rest of his life. More than that, the emotional scars on all of us from the year (I still have nightmares of the screams at the beginning of this). It's so strange to watch Grey scream at the doctor over the mediport needle going in OR out, and turn around and be his bright, happy, cheery self again moments later.
Our bright spots are many. First, and foremost, Grey is alive and doing well. Despite all our hospital stays and other frustrations, the fact remains that Grey is getting better. It looks as if we're in that 85-95% of doing well patients.
Next is that we have a roof over our heads. Despite wanting to leave from where we are now desperately, as I feel bad for our gracious hosts (my Granparents), we have a place to call home. I just wish that it was one that WE (Mrs. G, Grey, Blue, and myself) had for ourselves, rather than the spot of stability for the whole family (4 generations and counting).
Our next spot to see is our family and friends. "When you can't walk, you crawl. When you can't crawl, you find someone to carry you." This really is a war story. Whether it's a single person versus the disease, or all of us holding this person up for the world and powers that be to help, this is a battle for life. Many times, I find myself in doubt, Mrs. G is worried, or Grey scared ("I don't know what's wrong with me"--actual quote, and heartbreaking to explain). We've fallen, and needed help and encouragement. Thanks to everyone for the help, picking us up off the floor when we needed it, and the good kicks in the head when we needed those, too.
I wish I could thank everyone around in person, get them a gift of appreciation, and show how truly thankful we are. Sadly, I don't think there's money enough in the whole world for that, nor is there a gift proper for that. All we have is our thanks.
"It's been a long December
and there's reason to believe
Maybe this year will be better than the last." --a long December by Counting Crows (currently in my CD player to go to work, on constant repeat).
good night all,
/d
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The reward I am getting is knowing that Little Man is gonna be having Christmas at home. Every night since I found out my family has included a prayer for little Grey to get stronger and better, and that he can enjoy Christmas at home. I just hope the holidays treat you and yours with joy and love. I want to bask in the warm and fuzzy stories of Christmas with Grey. That would be a great title for a book about the holiday and the power of prayers BTW. Maybe you could turn the thread into a book when this is all just a horrible memory. Proceeds could help pay the hospital bills or help others who go through this. I would buy a copy in a heartbeat. Sorry. Tangent Alert.
Your writing conveys emotion very well and just seems like it should be read by the world. I look forward to reading about the triumphs of Grey and shed tears when I read of his setbacks. That type of written eloquence is not a common thing.
Mine and my family's prayers are with you and yours every night between 7:45 and 8:00 PM EST. If you look at the clock between those times know you are in our thoughts.
Merry Christmas, Grey.
FH
The reward I am getting is knowing that Little Man is gonna be having Christmas at home. Every night since I found out my family has included a prayer for little Grey to get stronger and better, and that he can enjoy Christmas at home. I just hope the holidays treat you and yours with joy and love. I want to bask in the warm and fuzzy stories of Christmas with Grey. That would be a great title for a book about the holiday and the power of prayers BTW. Maybe you could turn the thread into a book when this is all just a horrible memory. Proceeds could help pay the hospital bills or help others who go through this. I would buy a copy in a heartbeat. Sorry. Tangent Alert.
Your writing conveys emotion very well and just seems like it should be read by the world. I look forward to reading about the triumphs of Grey and shed tears when I read of his setbacks. That type of written eloquence is not a common thing.Mine and my family's prayers are with you and yours every night between 7:45 and 8:00 PM EST. If you look at the clock between those times know you are in our thoughts.
Merry Christmas, Grey.
FH
Thank you very much for your prayers (and knowing when makes me smile, as the end of your prayers is typically when I start preparing to leave from work, 7pm c.s.t.). It has been a rough year for many of my friends and, obviously, my family. There's much too much for this thread, and is much too far off topic.
As far as eloquent writing is concerned... I don't really see myself as an eloquent writer. I just put what is in my mind out there, and world be darned if they like it or not. As far as the rest of the world reading this... I dunno. I'll think about it, although I'm not really a good writer (not until Erik or James posts here about how grand a writer I am will I believe this *grins and chuckles at the unlikeliness of this*).
Today has been a long day, barely got to see the kids. Heck, last night I fell asleep in my work clothes next to Grey. The good of the day is that Grey is very excited, and is using cardboard tubes from wrapping paper as "swords," which is pretty darn amusing. The other good part is I got to go see Eragon tonight with my father & Mrs. G. Pretty good movie, although I haven't had time to read the books yet.
Christmas is almost over, for me a cheer. 1 more day, then I get A day off. Hopefully I get to sleep sometime in there.
Merry Met & Blessed Be, may the light of all our creators shine upon you until next we meet.
/d
Happy New Year. Day 277, or January 1, 2007.
We've been on steroids since Tuesday, ending yesterday morning. The good part is that the dose seems to be smaller (half of a pill). The whole medicine chest Grey is supposed to be taking is smaller. Mercaptopurine (6mp) is 1/2 of a pill, Methotrexate is 2 pills (rather than 6), and, as I stated, 1/2 of a steroid. Outside of much more mild 'roid rage, the week of Christmas to New Year's has been pretty darn nice.
Both boys have a few new toys, and they seem to be very happy. People helped with all aspects of the holiday gift giving, and to those that did: Thanks. We've had more than our share of surprises this year, and all of us needed something good to happen, and I think all of us had marvelous surprises.
As I'm typing this, Blue is finishing up his morning bottle, and Grey is eating potatoes, butter, and salt (mashed to a homogenous mixture). It's pretty mild, but I think I could get used to this. Let's just hope that the lower doses mean that we don't end up in the hospital for their effects again.
Our long December for 2006 is over.
Happy New Year
/d
/cheers for Grey!
W00t! Glad to hear everbody is doing good. :) Hope he new year is better than the last one.
/cheers for Grey!
W00t! Glad to hear everbody is doing good. :) Hope he new year is better than the last one.
While i am about as religious as a fish finger i do understand the pain of seeing someone who means so very much to you suffering. I am glad to hear that things are going so well, hopefully 2007 will prove to be a truly remarkable year for your whole family.
good luck brother
Kendrik
Day 284. January 8, 2007.
Well, this week has been an interesting one. We basically didn't send Grey to school this week due to chicken pox being at the school. We didn't really feel like sending him into what could have been a deathtrap (chicken pox is/can be lethal to immunosuppressed/cancer patients). We talked to the doctor today about it, and apparently Grey has been immune for awhile (I thought he was due for the immunization, and didn't have it). They had tested him in November, and didn't tell us about it (grr.). The counts today were all normal range (albeit a "low" normal, 4.02 WBC out of a normal 4.00-11.00 WBC). That's a good thing, making our decision to send Grey to school tomorrow easier. We still want to know when kids get it, as he'll probably have to be hospitalized if he gets it, but not to the lethality that we first believed. Our meds changed just a little, with Methotrexate going from 2 pills (5mg) to 4 pills (10mg). This change is okay for now, we'll seen in a few weeks how it's affecting the counts.
Outside of that... We met some local-celebs today. We met 3 members of the Illini basketball team. I was impressed with them, as they were having fun with the two boys that were there (Grey & another patient). They all played a game of Mario Kart 64 & Super Smash Brothers, and Grey actually won 1st place in the first Super Smash Brothers round (he was gleaming with pride that he beat them all by himself, and so was I :P ). They had to leave pretty quick (1 mario kart race, 2 smash brothers rounds), but it was fun, and they were very nice.
All in all, a pretty good week. Despite having to sign Media Waivers, just in case this makes it into the newspaper.
Side notes: Mrs. Gand Blue are doing just fine. Blue is teething, so he's a trip right now, waking up in the middle of the night (I hold him & go back to sleep with him and he's just fine).
Hope someone smiles at this other than me,
/d
:)
Day 299… January 23, 2007
So, it’s been a couple of weeks. Here’s the skinny, easy to read report of things that have happened:
Grey had spinal chemo yesterday, we are on steroids this week, and his medicines are increasing. We now take 1 whole pill of 6mp Monday, Wednesday, and Friday, and half a pill on every day not listed. The Methotrexate stayed the same, and we are now taking 4.5 mg of steroids for 5 days a month. Rah.
Our scare at the school is long behind us, and I’m very happy about that. The whole time we’ve been doing this, paranoia sets in pretty quickly. I’m generally unhappy with that paranoia, but it’s getting easier the better Grey gets.
BTW: Grey doesn't talk about school, even when we ask. Anyone else think this is wierd? I certainly do
Outside of that, Blue is walking (at 10 months!), and is generally a happy boy. Mrs. G. is taking care of herself, and I’m taking classes at a local community college for work.
See, easy to read stuff.
/d
I am glad that Grey is doing better, Darkmeer. I will send prayers your way! (As for the money that you also requested... Well, there are limits to friendship! ;-P ) As for Grey not talking about school, I do not know. Ask someone who has kids that age. ~shrugs~ Sorry.
I am glad that Blue is also doing good. Both you and Mrs. G keep up the good work. You have a hard job!
Best wishes!
Hey, Darkmeer, it's not unusual for the kids not to talk about school. When my son was in preschool, his standard response for "How was your day?" was "Fine." And that was all we could get out of him. He's eleven now, and he's still like that. We found asking specific questions helps, and my husband kind of makes a game of it at dinner, asking the kids, "What was the funniest thing that happened to you today?" or "What was the smartest thing you did today?" That kind of stuff. We get a lot more info that way than "How was your day?"
Glad things are going smoothly, at least.
You are still in my thoughts!
Peace,
Julia
Hey Fang,
Thanks... I thought I was nuts or over-compulsive (confirmed... w00t). Anyhoo, on to the update:
Day 312. February 5, 2007
Yet another 2 weeks gone by. Grey has had a head cold the past few days, and didn't go to preschool today (although he WILL go tomorrow). He's getting over a cough & runny nose (without a fever), and is as energetic as usual.
As far as the doctor's visits go... We are having a great time right now. His white blood counts were the highest today that I've seen them since, well, therapy began. It's a wonderful relief to see that all this time has finally come to looking like a true end game for this... mess.
Even better is that our outlook for a special trip has been confirmed. Our make-a-wish will be happening. Location: secret... Dates: think one-year anniversary. It makes me feel better to know that Grey will be getting something right at the time when memories begin truly forming.
As far as Mrs. G & Blue:
Mrs. G is doing well. She has become increasingly happy and in good spirits as she's changed some things due to being diagnosed with hypoglycemia. Lots of diet changes, and she is just happier and happier with herself over her new caring about herself. Blue is a very happy boy, except he's got that same head cold that we all have had (he had it first, too!). Blue's entertainment: randomly walking around the house, and teasing about going upstairs.
So that's the happy happy update.
/d
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Glad to hear it. Every night my 3.75 year old says "...and bless daddy's friend from the website's son Grey and we pray for him to keep feeling better...". She is a bit obsessive and will never allow us to leave out ANYONE that we pray for, even temporarily. A guy at church that I never talked with was standing in back with his kid(12-18 months old) who had the nose tubes hooked up and an IV taped to the lil guy's arm, so we stopped to ask after the boy and found out he had E-coli and that his name is Charlie. 4 months later and I have no further info on Lil Charlie but my daughter refuses to allow us not to pray for him every night. I just know that the boy is fully recovered but my girl just refuses to not pray for him. I love kids.
I am so glad that Grey is doing good and glad that you guys got a bit of a cold, not because I wish you ill, but because it is good to hear that he can handle a sickness without any long-term adverse effects. That seems to me to be a great sign (course I'm not very well versed in the medical realm).
Spring will be here soon and Grey will be running you ragged(er).
Hope you guys get over your colds soon.
All my best to you and yours.
FH
Day 332, February 25, 2007.
Our "Do Not Disturb" update for the month of February. So, the past couple of weeks have been relatively okay, mind you Grey has been running a fever off and on for the past week. His counts have stayed up, and we have even gone through with the steroids this week (they end tomorrow morning), but I don't exactly know what's wrong (okay, one nasty virus).
I think that it's good he's fighting the virus off, but bad that he's taking soooo much time with it. Heck, it's been basically ALL month for this fight. I'm getting a wee bit sick of it. Heck, Grey didn't even go to preschool at all this week (and he wanted to).
Grey has been pretty well bedridden for the past week, and has spent most of today sleeping. I think that it's for the best for him to rest so much, but it's a sign to me that he's worn out. Mayhaps a bit too worn out. He will probably be awake most of the night tonight, but we'll see how the nightmares progress.
We'll probably end up in the doctor's office again tomorrow, and we've got other appointments to go to tomorrow town. I guess we'll see what the morning brings.
/d
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Day 332, February 25, 2007.
Our "Do Not Disturb" update for the month of February. So, the past couple of weeks have been relatively okay, mind you Grey has been running a fever off and on for the past week. His counts have stayed up, and we have even gone through with the steroids this week (they end tomorrow morning), but I don't exactly know what's wrong (okay, one nasty virus).
I think that it's good he's fighting the virus off, but bad that he's taking soooo much time with it. Heck, it's been basically ALL month for this fight. I'm getting a wee bit sick of it. Heck, Grey didn't even go to preschool at all this week (and he wanted to).
Grey has been pretty well bedridden for the past week, and has spent most of today sleeping. I think that it's for the best for him to rest so much, but it's a sign to me that he's worn out. Mayhaps a bit too worn out. He will probably be awake most of the night tonight, but we'll see how the nightmares progress.
We'll probably end up in the doctor's office again tomorrow, and we've got other appointments to go to tomorrow town. I guess we'll see what the morning brings.
/d
Hang in there, buddy. Keep the good stuff at the top of the pile. Focus on the positive and be leery of the negative. An over-reaction is better than an under-reaction. If you feel he needs to see someone, don't second guess.
We will throw some extra prayers your way tonight.FH
Day 354. March 19, 2007.
So it's been a while since an update. We've been kinda on edge since the last update, nearly 3 weeks ago. The main reason is that neither of the boys are well.
Grey, after getting over his cough, started having coughing fits that caused him to throw up. It's not easy with him screaming (he is afraid of vomiting) to calm Blue down, but we try. The coughing fits were/are an ear infection, and we took Blue to the doctor last week to find out he had bronchitis. So, long story short, the boys are sick. Here's to hoping everything gets done and we all travel healthy next week.
Oh yeah...
The good is that next week we leave for Florida on our Make-a-Wish trip. We're all looking forward to it, and Grey is excited, but as has`been the case all along, we're cautiously excited.
Sorry for the short update, but Blue's ready for his nap.
/d
Day 364.
Well, we were SUPPOSED to leave early this morning for our trip. That didn't happen, as I'm writing this now. Grey went to the doctor Monday, Tuesday, and Wednesday, and got admitted last night (Wednesday). We got out after he got red blood cells b/c his hemoglobin was low. Not only that, his ANC went down 700 points, to 310. This is all due to the ear infection. I really hope that his marrow comes roaring back, and his ANC rises that 200 points we need.
So, after we found this out, I had to call Make-A-Wish. Our coordinator was very understanding (needless to say I apologized for cancelling so late, we were at T-Minus 12 hours). I'm still sorry for cancelling so late, as it's incredibly frustrating after putting so much work in to the trip (more on their side than ours), and I know the retail value of such things... it feels wasteful.
What's sad is that I was very excited to go because this trip would be a kind of pennance for what happened last year at this time. I mean, look at the day we're on, 364. It's been one day short of a year, and I don't quite know how to take this. Grey deserves this trip, and I'm sure he's a wee bit upset we didn't get to go on time (let alone myself or Mrs. G).
Right now, we're waiting on the doctor to call us back to tell us whether we're going to be seen or not today. I hope we are, and everything has started recovering well. If so, I'll call Make-A-Wish and tell them, and hopefully we'll just be a day late.
/d
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Gods, almost a year. I feel so bad for lil' man. He is such a trooper to go through all this and keep fighting. Stay strong, brother, you remain in my familial prayers. I hope Make-a-wish is able to re-schedule for you, he so deserves it (as do you and the rest of the family, my friend.).
My thoughts and prayers go out to you and yours every night at 7:45pm EST.
Stay strong and positive.
FH
I will be saying a few prayers myself. I am so sorry that he is sick again. If there is anything that I can do, just say so. If you want my e-mail addy, I can give that too. I am praying for a speedy recovery!
day 371 (okay, it's midnight as I write this, but who cares, it's still day 371).
Well, we were supposed to have arrived back from our trip about 1/2 an hour ago. We never left.
Grey is doing well, having recovered pretty much all the way from his ear infection, and having a slight dry cough. The cough isn't anything serious, just spring in the air (okay, it's 29 degrees right now, so much for spring). The good news is that Grey got to be home for his birthday. The bad news is that his trip got delayed until next month. I can deal with that.
Grey had a great birthday, but really didn't want to do much. He's kinda lazy that way, but he's been feeling drained since the whole counts fiasco. We were at the doctor's office on Tuesday morning, and his ANC counts were up over 500 (in the mid-800's), which means that we restarted our chemo. Rah. I guess that it's okay, since it's half-doses. I don't particularly care for this up and down crap, but I guess it's inevitable. I also got the equation that is used for determining the "optimum dosage" for Grey's various medicines. THAT was fun. We've not even come close to the optimum dosage in any of his medicines, except maybe the steroids. I'm kinda scared if they were to put him on the best dose, since I don't think his body would handle it at all. Matter of fact, I'm prolly gonna talk to the doctor about his dose on steroid week (lowering one chemo), mainly because I'm sick and tired of the nose dive that seems to happen about every 6-7 weeks because of it. He needs more stability than that, and I refuse to believe that his treatment schedule is THAT strict that it doesn't take into effect the nose dive the next week (Very frustrating, and then looking back and seeing a predictable pattern made it worse). Yeah, I would really like to talk to the person in charge of this national treatment schedule, with as much school as Grey has missed, as well as how much extra stress it has put on us (heck, I just reread my own journal, and saw the cycle!).
In other news: everyone's healthy for once. Blue is starting to try to talk (and his favorite word is: HOT, as in the stove is hot). Mrs. G is happy, and I am relatively sane. All in all, a good combination.
Notes: Thanks Fakey and Sharoth, it's nice to see that someone is reading this and lending their support. It's an amazing thing that the knowledge and sight of the words of support makes us feel so much better about our situation.
As far as email sharoth:
if you want to email me, my email is at hotmail.com, and it starts with darkmeerthedark (all one word, no spaces or underscores). Private commentary welcome, albeit I am a bit cranky at times.
Thanks again,
/d
Keep going. I can only try to encourage you, even if it is hard at times. I keep my fingers crossed four your family. We care for everyone here.
Stefan
Darkmeer, I just sent you an e=mail. I am very glad that Grey is doing better. My prayers are with you. If there is anything that I can do, just say so.
Ask for Fakey, he is a nice guy too. But only if you are rouge.
Darkmeer, I can't even begin to imagine what the last year has been like for you and your family. I've read this entire thread and my heart goes out to you. I'll send good thoughts your way for all of you.
I tried to read this thread from the beginning and I just can't. It sounds like everything's doing well for now--I hope it stays that way. Good luck to all!
Day 395. It's April 29 today, and it's one year past the first leaving of the hospital.
Today is a good day, so was yesterday, and so was the previous 3 weeks. Grey has been on constant improvement and acting like a real boy. Of course, we had our wonderful steroid week, but other than that, we've been doing quite well. We're on 1/2 medications right now, meaning 1/2 of a 6mp daily, and only 3 methotrexate weekly. This makes our life much easier.
Grey has also been doing something that he hasn't done well in months: Eating. He eats whatever you put in front of him (okay, primarily meat & potatoes, but who cares that I've got a carnivorous child). I think that seeing him eat, and say that things taste good makes us especially comfortable with the whole situation we're in. The medications make everything taste funny, and it's odd to see Grey eat things that he's stalwartly refused to over the past 6-9 months. He's still not good with the veggies, but I think I can deal with that for a little while longer.
As to the upcoming events:
We leave on Wednesday morning for Disney with the Make-a-Wish foundation. We're going to be picked up by limousine, and we'll be able to stay at a place called "Give Kids the World," which is funding pretty much our whole stay. I'm kinda sad about not being able to go to Florida the first time, but this time I'm really excited because Grey is healthy and acting like a 4-year-old should.
What I'm excited for with the trip: We get to be near the Atlantic Ocean (and we will be there for part of the day one day). We get to go to Disney and Sea World. And, mostly, Grey is going to have a great time.
Cautious Optimism: Check
Trip most certainly: I believe "Check" is in order.
Next update sometime around or after May 12
/d
Tell Grey to shake Goofy's hand for me. :o) Hope y'all have a wonderful trip.
~smiles~ I am glad that they are both doing better. Enjoy your trip and I hope everyting goes as planned! I will continue to say those prayers.
Hello all . . . I'm posting by proxy for Darkmeer, who currently doesn't have internet access due to the trip that he and his family are on. He wants me to relate that is son is having a wonderful time, and that he is absolutely amazed at the "Give Kids the World" Village in Orlando.
He was really very impressed with attention that the children get that are staying there, and he also heard while he was there that Lay's is matching dollar for dollar donations to the Make a Wish Foundation, and he wanted me to post this so that they could get the maximum number of donations that they could before this drive is over.
You can find the details at Lay's site, right here:
Hello all . . . I'm posting by proxy for Darkmeer, who currently doesn't have internet access due to the trip that he and his family are on. *snip*
You can find the details at Lay's site, right here:
Thanks KEJR.
So, I've been home about 2 hours now... And I want to spread some good words.
This is the story of how Darkmeer the Dark got at least a tiny portion of his faith in humanity back.
And it's about children being treated like CHILDREN.
I have been to the edge of the abyss, looked into its depths, and found it staring back at me. I have gazed upon the fear in my heart, the loathing, and the anger. I have dealt with it all, having been pushed down and pushed around for most of my life.
Here, all were lifted up. ALL were treated like people. And, most importantly, ALL WANTED TO BE THERE. Further: Please and Thank You held true meaning. That's all you can say.
This place is more special than anywhere I've been in the continental United States of America. It is founded upon someone who had been through a deeper abyss than I will ever have to (I hope). The founder went through the holocaust and lost a deep part of his family (parents and other relatives).
And yet, he created this special place. This place is beyond anything I can possibly describe. I cannot do it justice, and most will never know its depths of meaning to the families that go there. Most never know that this place, if only for a short time, removed that fear of the abyss, the anger at the world, and the hatred that burns so brightly at times.
Here, in this magical place, children are just that CHILDREN. Why bold? Because this place takes the children who aren't well. Some of them will never know what it's like to be normal. Some of them will never be treated like a human being ever again in there entire life. Some of these children go home to DIE.
But, for one small amount of magical time, they are not PATIENTS, they are not DEFORMED, they are not MISTREATED by their peers, they are given the most special gift of all. Being human, and being treated that way.
What I saw there, beyond anything else, brings tears to my eyes thinking about it. I saw children, who I am pretty sure will be going home to cease living, hooked to their chemotherapy riding rides in a train. Some of these children were in motorized wheelchairs, but the train lifted them to it's heights, and brought them wherever they needed to go. I saw children, deformed from birth or otherwise, able to walk around with their heads high knowing that everyone there cared that they were HAPPY. But most importantly is the fact that I saw them SMILE. They were happy, they were empowered. Nevermind the rest of the world for a moment. These kids were given that which most of us will never know or truly appreciate... a true chance to be treated like they are the special ones. And they are.
There was no shock at seeing a wheelchair, there was no shock at seeing a child with x deformity, or x implanted surcially into their bodies. It did not matter.
They got to have Christmas with snow, they got to ride horses, they got to eat as much Ice Cream as they wanted. They got to swim, they got to know which star is theirs to wish upon, and where, in the Castle of Miracles, that star lies. There are about 80,000 stars in the Castle of Miracles.
These stars are wished upon when they get home, to get better, to make the pain stop, to make the other children stop picking on them because they are not "normal." They are part of the hope in these children's eyes
Truly, we are winning our battle. I know some of the families at Give Kids the World Village aren't able to leave the Village. They have set up as much as they possibly can, with private 2-bedroom "villas" for families to use for the durations of their stays. They have set up an amusment park, named after a wish child (Amberville), they have an Ice Cream Shop that opens in the morning (Ice cream for breakfast), they have swimming pools, a fishing area, a place to eat normal (a la carte) style meals, and there is the Castle of Miracles. They really have done something truly, truly wonderful for the children.
GKTW is beyond anything I can describe in the happiness that it brings the families there, nor in the memories that will last a lifetime. Surely, I will see MY abyss again, but I will be armed with a faith of humanity and what we are truly capable of to fight my abyss with.
They rely on volunteers (3600-give or take), and a very small staff (126-ish). I hope that one day, I will be able to take Grey, Mrs. G, and Blue with me, and we shall all volunteer and return the favor to the other families going through their hells and making life better and happier for them, if only for a moment in time.
I am sad to have left, and for me to remember what I do, and know what I do now brings me to tears. What KEJR did not put in his post was that my voice was shaking when I called him. Not the same shaking that I had when I typed my email to everyone I knew when Grey was diagnosed with Leukemia, but a shaking... stammering... loss for words.
This was the most amazing trip I have ever been on in my life, and Grey will remember it all of his life I hope. He won't remember everything we did, but he'll remember Christmas on Thursday, the Mayor's Birthday party, and all the other things we did at GKTW. Further from that is all the amusement parks we saw (Disney, Sea World, and Universal Studios). This was a very, very special trip.
I'm still at a loss for words, as this post is meager to the true expression of my feelings towards the trip. I don't know that 1 million or more pages would cover it either. Not a single word I am aware of can possibly describe this.
The closest I can come: Awestruck. And that is at least 1 million times too soft a word.
Regular updates occur after I recover from our trip... Provided I find the words.
Good night, Good morning,
Darkmeer the Dark
It is good to hear that you are happy beyond words. It is most deserved for a family being through all this.
Stefan
God Bless You guys.....