Over in the "what happened to your campaign" thread (in campaign journals), it was mentioned that my son, "Grey" we shall call him, has leukemia (Acute Lymphocitic Leukemia). It was requested by a few forum members that I give an update... I am obligated to do so, as it was requested, and I have a minute. One thing to remember: when I say Counts in this thread, I am speaking of White Blood Counts, Red Blood Counts, Platelets, and Absolute Neutrophil Count (a type of White Blood Cell). For those of us who don't know: Leukemia is cancer of the white blood cells, where they just keep replicating themselves without end, killing off all the good blood cells. The cure rate, depending on source, is 85-95% (NO parent will tell you that the rate is acceptable, period.).
I almost put this in Campaign Journals, as I intend for this to become an ongoing update, hopefully every week or so...
So, from the top... Feb 12: ER visit for Grey, with his mother, fever 105. The doc sent us home... Using Tylenol & Ibuprofen to bring it down (this angers me now, looking back). Grey gets sick & better depending on the day, then says he doesn't want to walk every now & then (I figured it was typical behavior to some extent, until he started screaming when I made him walk). He got better for about 2 weeks (During which March 7, My second son was born). He got excited, and life was good, until the fevers started coming and going again. Eventually, after 3 doctor visits, Grey went to the doctor on March 31 (I saw the pale horse that day, and hell followed with him).
The doc was a sub, and my wife and mother brought Grey to where I work, to go to lunch while we waited on blood test results. We got the call after I had left work, and was driving to the nearest fast food restaurant to get something for us to eat. We get that call from the doctor I hope NOBODY I know ever hears: "Hi this is x from the clinic, the doctor would like to see you. When you get here the doctor will see you." The world stops. We get the diagnosis. Mother & my wife start crying (I had lost a dear friend to bone cancer June '05, I was not about to cry b/c Grey was, and is, still alive).
We go to Hell. April 2, my son's birthday. In the hospital. We were supposed to go to Barnes' hospital in St. Louis on the first, but Grey was not stable enough to make the trip. He would've bled out well before we got there (I know, I've read the labs, and used to work at the hospital he is being treated at, so I know what I'm reading). We spend from March 31 at 1:30 pm until April 28 at 7:30pm in the hospital (there was no greater 25th birthday present than getting my son home, none). We go home for about a week and a half, just seeing him withering (and he had Rhodavirus <diarrhea> during his last week and a half of our hospital stay, rivers and lakes of the stuff). And he gets a staph infection from a mediport they had put in him in St. Louis.
We go through 1/2 of may in the hospital. Rah. Removal of the mediport happens, and we put in a stint, which also gets infected. Eventually we get out of the hospital, and spend the last week of May out of the hospital, and June, and July. The biggest problem we run into is the medicine itself. Some knocked his counts down to low levels (although not nearly as low as March-April-May).
To the present...
The last 3 weeks have been odd. I got to see my son again (the medicines all affect his mind), b/c he didn't have to take anything due to low counts. I got to see him, and cried myself to sleep nearly every night with the knowledge that I was going to lose him again. Yes, bawled like a little baby. I do every day on my way to work, and every night when I try to sleep. Why? I miss the blissful innocence that my son had, knowing that was ripped from him without MY permission, without HIS consent, but that is the nature of the beast.
Starting last friday, August 11, Grey went into "Delayed Intensification," AKA April again, just outpatient. He's on steroids (super insomnia, nightmares, loss of bladder control at night, mood swings, fear, screams that will haunt me for the rest of my life <just adding to april's>). We've only begun treatment, and I think it was harder to go into this treatment phase than April, due to no shock this time.
That brings us up to date. And here's the rules that I try my very absolute hardest to follow every day, so that I appear normal (I work in the public eye) at work and home.
1. Don't cry in front of anyone, especially Grey. He doesn't need my fears burdening him, and I want to enjoy the time we have.
2. Leave EVERYTHING (fear, crying, lack of sleep, mental & physical exhaustion, etc.) at the door when I go to work.
3. Don't break, the stakes are too high for me to have a breakdown.
Just remember, the rules come in threes.
Thank you for reading, and for those of you who wanted an update, here it is. If this needs removed, I'll gladly do so, or if it would be more proper in Campaign Journals, that is fine as well, as it's a real, ongoing thing.
gotta go,
/d
Don't know about anyone else, but it's cool by me - keep us updating and hang in there.
*hugs and squishes your way*
I'd send cupcakes and homemade meals if I could.
You know we are still praying for you, but I got to talk to you last night. Then again, as much as I talk, if your wife hadn't have intervened, we might have still been talking (yes, I'm long winded).
I can relate a little bit with how you feel, as my son has had 17 surgeries in 3 1/2 years. Our prayers and thoughts and lots of positive karma are going your way. We hope that your son is better real soon and that life's percentile dice roll low.
I honestly can't imagine. I feel like anything I say isn't enough. I'm sorry, and I hope he gets better. If it helps to post then I say do so. If its to painful however then don't.
Having said that, should you continue posting I will read, praying he recovers.
Regards,
J. McAdoo
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They'd better not ask for this thread to be removed; this, to me, is what the whole concept of the message board is for.
Though we b@*%$ and moan sometimes, about individual players, DMs and game designers, it still remains the case that the gaming community is solid. Moreso than society as a whole, IMHO.
You can sit down at a table anywhere in the world, spot a PHB, or d20 keyfob, etc, and know you can start a conversation with a total stranger, safe in the knowledge that you are Gamers, Together Against The World!
I was asked what I was reading, earlier (while reading the original post), and I said it was an e-mail from a friend. And I meant it. Though we've never met, I don't know your real name, or even what state you live in, I still consider you a friend. And friends stick up for each other, and try to help each other through bad times.
And though I live on the wrong side of the Atlantic, and have few ways to give physical help, if writing this can bolster your resolve or lift your spirit, then I consider it time well spent.
Darkmeer, first of all I should preface this by saying I'm a deeply religious person and I believe that God, our Heavenly Father, has a plan for us all. Things happen in life that we cannot understand and leave us bitter and resentful. Especially when it comes to the suffering and even loss of our children. I'm a father of a 1 year old daughter. She's the greatest blessing I've ever been given and as a parent I feel I can rightfully say that I empathize with you.
I pray for your son, (at the moment I'm typing this) and hope that he will recover and live a long and fruitful life.
If the worst happens and you should lose him, I offer these words of comfort and hope that they do comfort you: many children come into this world for the purpose of blessing our lives for a short time, to help us change ourselves and elevate our quality and character, and then they are taken back to our Heavenly Father because they are too pure and good for this world. I firmly believe this and if you feel a stirring in your heart as you read this, I think you probably do too. Should the worst case scenario happen, I hope that you'll not forget the things your child taught you and that you'll continue to be the type of person that he helped you elevate yourself to.
To anyone that has no religious convictions and takes offense to my words, I offer no apologies.
Children change us in so many ways.
They are infinitely precious.
My thoughts and prayers are with you and your family.
J.
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Darkmeer:
I know that you don't know me from Adam. But your story touched me deeply. We adopted 2 little boys (3 1/2 years and 22 months old) in January and are working on adopting their baby brother (8 months old) right now. Every night I look in at them in their beds and thank god that we don't have to deal with anything like what you have to deal with everyday.
I will pray for your son, and indeed, your entire family in general for strength in the upcoming months.
I know it is not much help, but the medical profession is improving in treating this unfair disease everyday. Someday soon, God willing, this disease will only be something in the history books.
All we can do is live our lives one day at a time and deal with whatever gets thrown our way when it happens. It is really unfair when a child gets stricken with any disease especially one as onerous as this one.
Please hang in there and know that your "online" family is here for support and a shoulder to cry on (type on???) at any time of the day or night.
You are in my thoughts. GOD BLESS YOU AND YOUR PRECIOUS FAMILY.
MongooseMan
WOW.
Well, I don't think this thread's going anywhere.
To everyone: Thanks. A bunch. More than most any of you will ever know.
I will update this after the week is out (at least I hope to be able to).
Steve Greer: Thanks for not apologizing for your faith.
F2K: To the surgeries I relate (we've done 3: 1 for putting a mediport < easiest way to put drugs into the body>, 1 for removing it and putting a stint in, and 1 for the new mediport over the 4th of July). Reading the unlikely, but possbile outcomes on that list is disheartening: Collapsed lungs, heart failure, bleeding out, you know the list. I don't know what is wrong with your child, but I wish you well, and will send Karma and prayers your way as well (it does come back to you).
Snorter: You made me smile. And you are right, as my FLGS put up a charity jar for my son. (oh, there's no wrong side to the atlantic, btw :)
Fang: Our children do change us. And show us what strength is every day.
Mongoose Man: I do know an Adam (one of my best friends), but one thing I have put into my mind is knowing that family transcends bloodline. I knew this when I was younger, and I have proven it IRL with who stepped up. I can use all the family I can get. I learned only one thing, and I think it's good to share: Take that hour before bedtime, play a game, do a puzzle, read a book, just DO something (doesn't necessarily need to be before bedtime, just some time set aside for THEM).
The highlight of my day: I got home from work at 7pm. My sons, wife, great uncle, and grandparents were all on our porch (outside contact is semi-okay). I saw a new car in a nearby used car lot (it was closed, and nobody was in the lot), so I took Grey up on my shoulders and walked with him on my shoulders to look at the new 57 Chevy, in my work clothes (he loves cars, trains, planes, pretty much anything to go places, heck we take him to the regional airport to watch the planes land & take off from the country backroads).
Thanks all,
D
Hi all.
For those of us who have been playing the home game: we hate steroids. A LOT. and Guess what?
STEROIDS.... AGAIN. It's gettin' old. He spent the last two days screaming at everything while his body expanded just like a balloon. I had a pleasant little boy, but he's not present due to the obvious effects and the not-so obvious effects of steroids (list: insomnia, mood swings, overactive bladder, nightmares, more nightmares, binge eating, bone ache, and rapid body expansion). Outside of that, we still have no signs of the leukemia, which is great news.
Supposedly we are going to be finished with this phase of therapy by the end of September (longer than I had hoped). This means that it is possible, if his white blood cell counts rise properly, to have a semi-normal fall season (starting Allhallow's Eve, I hope I hope). Planning ahead: I know what we're all going to be thankful for.
I'm still trying to get a straight answer as to the last day of therapy, so I can be present. All of the appointments lately have been from 9am until 5pm or later. It makes me ill to think that this is what I gear my updates around (so I'm early this week, deal, there's another coming sometime after the next update). I still have not gotten a straight answer to the 3 weeks of no therapy b/c of low counts. Any insight into this would be great (I've gotten none from the docs, as the tests that they ran came out negative).
In other news: My youngest is out of the house until Saturday night(w/My mother-in-law), and it is nice to only wake up 3 times in the night instead of the usual 5-7. My wife and I are exhausted(okay, everyone's already told me I need sleep).
To the few: Thanks for the encouragement. We all need it right now, that and a good deal of sleep.
Thanks for reading,
/d
Its good to hear that the luekemia is still reading a negative, but I'm sorry he had to go back to the steroids. I wish I could tell you anything about the treatment, but my sister had Hodgkins, and was 19 when it hit her, and its been YEARS since then, so the therapy routine is wildly different, thus giving me no touchstones to throw you some ideas about.
Dispite that, I'm really happy to hear that the leukemia is not showing up again, and we are still all praying for you, and you are right, at the very least it will give you something to be thankful for this fall.
If nothing else, just remember that you have plenty of carnage coming up this weekend with the black dragon tournament. I wish I could be there, but I think I would rather face a REAL black dragon than to face my wife if I missed my first aniversary (wives are funny that way).
Darkmeer, I too am glad that the Leukemia is a negative. I am sorry that you all have to resort to Steriods, but if it helps in the long run, it will be worth it. I hope that you and your family have a blessed weekend!
KnightErrandJr., Tell your wife that D & D is much more important that a simple anniversery! ;-P I do hope that you and your wife have a good time.
Steve Greer, I applaud you for your willingness to stand up to your faith!
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Hey Darkmeer-
My heart and prayers go out to you. Right now, my nephew is facing pretty much the same challenges as your son. He's been going in for chemo treatments pretty regularly and they recently put in a subdermal port because the little sh!t kept pulling out his PIC line (he's just over a year old, so he doesn't really 'get' a lot of what's happening). But all of it, the emergency trips to the hospital, the tests, the steroids, all of it are working to help your son, so keep the faith.
Use your family and your friends to help you stay strong (mentally, physically, and spiritually)!! That's what they are there for. I wish you all the peace in the world.
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Darkmeer, my prayers are with you.
My maternal family is large (my mom was one of 27 children) so we've been unfortunate to have numerous encounters with the C word. Thankfully, most of them we have won.
Most recently, my father was diagnosed with a form of pre-leukemia (I forget the exact term) about 2 years ago. We were informed that if left untreated it would eventually develop into leukemia. It's been a struggle, and he longer has the energy he once did, but at least it is under control.
I can honestly say that I have no idea what it has to be like to be in your shoes. I remember being scared to death when we thought our son had menigitis (turns out he had just pulled a muscle in his neck and had a slight sinus infection, but when your normally hyperactive 3 year old just wants to sit on the couch and hold his head perfectly still all sorts of nightmare scenarios rush through your head) but I'm sure that truly pales in comparsion to the fear one feels when dealing with leukemia.
We'll be keeping you in our prayers.
Been thinking about you folks ever since I read your original post last weekend. I don't know you, but I feel for you and your family, and I hope all goes well for you. You and yours are still in my thoughts and in my prayers.
--Fang
...Right now, my nephew is facing pretty much the same challenges as your son. He's been going in for chemo treatments pretty regularly and they recently put in a subdermal port because the little sh!t kept pulling out his PIC line (he's just over a year old, so he doesn't really 'get' a lot of what's happening). But all of it, the emergency trips to the hospital, the tests, the steroids, all of it are working to help your son, so keep the faith.
Keeping the faith is all we have. I am very blessed in one respect that almost all my friends and family are supporting us (it would be darn near impossible otherwise).
BTW Gavgoyle: the subdermal mediports are great, as pic lines tend to be a little more prone to exactly what your nephew is doing. They are really great things, just watch for the infections in the early stages, as the children have virtually no way to fight any infections. Oh, and your nephew will quickly become one of the most eloquent speakers for his age group (Grey surprises me every day with a long sentence or two out of nowhere, that is properly put together). I will pray for your nephew. It is the least I can do.
Thank you all for your support.
/d
Darkmeer, I just read your moving account of your sons suffering (nearly brought me to tears). I can only hope that he has the strength to win over this malignant disease, and that you and your family have and keep the strength to support his struggle. Never, ever lose the hope !
Please do keep reporting on his progress. We will try to support you, even if it is only with kind words.
Stefan
It did make me cry, I know what its like to see someone go through that as well. It makes you vulnerable, as a parent it is a thing you can not protect your child from it makes you feel so helpless, do breaved of any way to help, other than things that are nearly as bad as the pain there already in!
Thank you for sharing and from one person who has been through this as well, I know where your coming from, hand in there and be strong.
There are never enough words to make it right, but there is a shared sympathy and empathy as it were for you.
Keep your chin up, and best of luck for your boy.
So this update's late... It happens.
Day 1 billion 736 million 432 thousand 23.
Or, in reality Day 160 (yes, I'm keeping track of how many days, hours, and seconds til this is over). Almost half a year has gone by. September 30 is the six month mark. We should be done with Delayed intensification by then.
So, the last few days since the 24th of August have been exhausting. Nearly no sleep, as the steroids really took over Grey's mental function. As such, nobody got any sleep between Me, My wife, or even Blue (youngest child, I'll go with a color theme...). Grey's belly blew up like a balloon, which made his breathing difficult, most of his movements slowed to a crawl, and the other effects of the steroids shone through (rah). Thankfully, that ended on Friday. I have a normal child right now (NO medicines until 9/11/06).
So, since Friday we've had improvements every day. His stomach is looking less like the Goodyear blimp right now, and will keep looking better, maybe even looking normal by the end of this week. I'm grateful for this short reprieve, as my work is going to be very busy this week...
As of right now, Mrs. Greycastle's taking her break for the week, I might even get a couple of hours.
The good of the week thus far: Grey, Blue, Me & Mrs. G. all slept about 10 hours last night (we ALL needed the rest).
The bad of the week: We know treatment begins anew in 7 days.
Here's to a quiet week.
/d
Hang in there. My son is scheduled for a painful tongue surgery on October 7th, which will hopefully correct his sleep apnea and allow him to ditch his tracheotomy tube, which he's had since he was 5 weeks old. It'll be his 18th surgery. He'll be four in December. Enjoy those days of reprieve and nights of actual sleep. I know how you feel--my son is getting a cold and I only got about 3 hours of sleep last night because I had to keep suctioning the phlegm out of his trach. Tonight's my wife's turn, so I get some sleep every other day, at least.
F2K: I feel for you with the not sleeping. I truly hope that everything goes well, and you don't have to spend your nights awake and worrying. I know the feeling you have.
On to this week's update:
Since 9/5, we've had a good run, although Grey has been a bit on the tired side. Pretty well in a good mood, and acting more and more like himself. Makes me smile.
8am today, Mrs. Greycastle, myself, and Grey went to the Onco as planned. We figured we would be starting almost the end of this phase of treatment today, we were wrong. His counts weren't high enough to start the end of this phase. Rah. So we're out in the waiting area (quite nice, BTW, with an N64, so Grey & I were playing Super Smash Brothers, he's pretty darn good with Link & Samus). The doc brought us into his room for the morning, and we were told we were waiting a week, NO chemo or other drugs all week. This excludes things like Pepcid if his stomach is upset. Honestly, I'm kinda glad for this delay, as I'll see more of my son and less of that demon spawn of Steroids.
There is a light at the end of this tunnel. Grey becomes public (able to go out in public) hopefully before Halloween.
There we go, short and happy update.
/d
Darkmeer--My prayers for your son's recovery, and for strength for you and your family during this tough time.
F2K--Also for you and yours.
Darkmeer, it is good to hear that there is some progress. I hope this will continue in a good way.
It is nothing short of a miracle that the children get a chance like this these days - a few decades earlier, there would have been no hope at all for them... That is what science is for: to alleviate suffering and make the world a happier, better place.
Stefan
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We're kinda lucky, since my wife is a Physical Therapy Assistant and has worked in hospital settings for the last 13 years or so (and done a lot of work with wound care patients), I get a better view of what 'normal' patient progression tends to be. Rachel (my wife) tries to explain to the family that there will be good days, great days, bad days, and terrible days... sometimes within the same day. Sometimes it's a good week or a terrible week waiting for test results to come back in. The family listens, but with varying degrees of understanding...
The important thing is to recognize the good/great days as the gifts that they are. Steal those opportunities to rest (and eat something that doesn't come out of a frickin' vending machine or a drive through on the way to/from the hospital). When the bad days come, and they will, because the white blood cell race is ultimately a fairly delicate balancing act, not to get discouraged. There is a point where the teeter-totter finally settles down on the good side of things, but it will tip back and forth at it's leisure until then.
I'm very happy that Grey is doing well! For what it's worth, we think about you and send the good energy your way often.
To all: Thanks.
now, for the Day 181 update (I can't believe it's been 1/2 a year since this nightmare started).
We started treatment a week late (as we all well know). Grey's counts were too low (recurring theme here?). Simply put, the last 2 weeks have been easy, and this week looks pretty good, too.
Starting on September 5, Grey has been getting better and better. He's off the steroids, and you can definitely tell a difference in personality and mannerisms. I really like this change, back to something more normal.
He has stabilized his weight around 39 pounds (ick), and his counts have stayed relatively strong. His ANC stayed up since we've started this part of the phase, and it's expected to drop starting soon. His WBC is fairly low, as expected, but he isn't acting abnormally sluggish, in fact he played outside this weekend.
Starting the therapy last week was miserable. We got to the doctor's office at 8 am, and left at 5:30 pm. We were the first there, and the last to leave. We were all exhausted from the day (and it was only 3 different chemotherapy treatments). Today at the doctor, we were there a total of about 2 hours. I like short days. Unfortunately, I believe Thursday is going to be a very long day like last Monday, and I've taken the day off of work just to make sure I'm there to help (as it's a lot of work to keep him occupied during these long days). The big thing about this and last week is that we keep the IV that stays in the mediport hooked up, so he doesn't have the screaming trauma of having the mediport poked every day, and it lessens scar tissue for later. I hate it being in, but it is a necessary evil due to everyone hating to hear him scream, and the whole making appointments shorter thing. The plus side is his ANC being up means he can fight off infection, even though he has little in the way of white blood cells (still don't understand the logic, but it works and that's all I care about).
Mrs. G and Blue are okay, Blue is doing the military crawl, and is getting quite fast. He's almost up on his legs, and he's getting very coordinated. Mrs. G's seeming more rested, whether she is or not is up for debate. We all see light at the end of this tunnel, and we're all easing into it and getting comfortable with the idea of relaxing.
Here's too the last week of delayed intensification, and to a (hopefully) soon to be visiting with the public Grey.
/d
Hang in there my NG(E) friend . . . you are turning the corner, and the final leg of the journey (for this trial) is just about over. You know I'm here for you. Take care, and keep watch over all of your family . . . and just remember that you don't have to deal with any of my convoluted DMing for a few months, ::evil grin::
Seriously though, if you need anything, just let me know. You know where to find me.
All my best wishes, prayers and hopes. You're obviously a great dad...the world needs more of those.
Thanks for sharing the (relatively) good news. I hope it will get better still. I keep my fingers crossed for further improvement.
Stefan
Good to hear things might be looking up. You and your family are still in my thoughts and prayers.
--Fang
I'm sending my prayers of thanks for progress and hope for continued healing . . .
Day 184. September 28, 2006. Short update.
This is the end of the therapy for this phase. The day was shorter than I had anticipated, but I'm glad for that. We are approaching the zero time again, and it's not something I'm looking forward to. We had a WBC of .9, and ANC of 450 (4.5). This means we are at virtually no immune system (as was in April). We expect this to get lower (to ZERO, in all honesty), and then recover.
At recovery, this phase of treatment truly ends, and Maintenance therapy, and being in public, begins again. I'm looking forward to it, and Grey's is in great spirits. He doesn't fare well when he has his port needle in for an extended period of time, and he is an explosive ball of energy right now.
/d
Day 194 Update (October 8, 2006)
Well, the past week has been... uneventful. Grey's counts continued to drop, as mostly expected. Although we had a bit of a fright when his ANC went up when we drew Monday labs (October 2) and down on Thursday (October 5). The other big worry was platelets... They went down to near-March 31 levels (Platelets of 160 or 16 if you read the labs, 3/31 was 50 or 5 if you read the labs, normal being 1000+ or 100+ on labs). He got platelets Thursday. Outside of that, he is doing well and looking relatively happy. He even looks like his eyebrows are coming back in and his hair looks to be coming back (think 5 o'clock shadow over his eyes & on his currently cueball head).
I had to work three long (10+ hour) days this week, and did not get to see much of Grey this week. We're going to take him to the drive-in tonight to watch Open Range, and Cars is the other movie at the drive-in (so intermission should be fun). It's nice to see that even though he can't be in the public, we can still find a way to let him see the kid movies that are coming out.
That's about it for today... Until next time
/d
Day 207 (13 day update, ending October 23, 2006).
I really wish I had more news than I do right now. The past 2 weeks have really flown by, and I haven't really heard anything new. The hardest part of all of this has been waiting, and last week we had a bone marrow. We waited until Thursday before we got preliminary results, and they were good. Today, they were confirmed good, but Grey is now 2 weeks late for intrathecal chemo in his back (a.k.a. LP for Lumbar puncture) due to low WBC's and ANC's.
The good of this is that everyone is acting relatively normal. Grey is in great spirits, running and such (although a couple of days were spent without energy as he was coming back up and those days were the hardest for me as well because he asked me not to go to work... *sarcasm*That doesn't weigh on the mind at all *end sarcasm*), and Blue is standing, trying to walk as much as he's scooting across the floor.
Next week is (hopefully) intrathecal chemo, and release into the world. Grey is going to be Buzz lightyear for Halloween, and Blue will be Woody. I'm really hoping to get to enjoy that holiday, rather than sit at home with the boys twiddling our thumbs (or chewing on them in Blue's case).
BTW: Blue is actually crawling and standing up now, using furniture to walk along (he's 8 months old. Can you believe that? I can't).
Mrs. Greycastle got a job offer today (she *opinion* lost/left */opinion* hers early in the game with this, and WE couldn't justify her working until Grey got a little better), and we'll see if the job's worth taking.
Here's to brighter days,
/d
All my best wishes and prayers, as always. My son had a Broviak line for several months once for IV antibiotics after a nasty surgical bone infection. He also had a lumbar drain once because the docs thought he had a cerebrospinal fluid leak, so I can relate to some of the things you guys go through. Hang tough, be strong, lots of folks are pulling for you and your family.
Checked paizo one more time before bed, and F2K posted...
I remember your son was having something soon to help with part of his problems. How did that go?
I hope all is well with your family, and my prayers have also been offered.
good night,
/d
We won't know for a few months. He has a tracheostomy tube to help him breathe, which we're trying to ditch. He had a tongue surgery to help with sleep apnea, but he has to heal up from that and then we have to have another sleep study done with the trach capped. Thanks for the support, all my best to you guys!!
Happy Halloween! (Or Day 215 Update, whichever you prefer)
We have officially started MAINTENANCE therapy. We're still not street legal, but we're closer. Grey is on steroids for 5 days this week, and then we wait 4 weeks and do it again. The bright spot is that the chemo is working, and things are going to be quasi-normal again. We begin to find out when we get to be street legal in 2 weeks.
He fell asleep after our first stop trick-or-treating tonight, so I called the few places that we were going to go and told them we'd be by later (and then called to say we wouldn't be there as Grey is STILL asleep after 4 hours). I'm kinda sad about that, as he was really excited about being Buzz Lightyear & Blue being Woody for the holiday. C'est la vie, non?
The update would be longer, but Blue fell asleep in my arms, and they are going numb from his weight and me typing frantically.
Here's hoping that this update made you smile.
/d
We can hope for nothing better in life but to look back and have our years filled with moments like these. I can't beleive that my kids are as old as they are . . . I still remember taking my youngest daughter out as Pikachu one year . . . and then a few years ago my wife dressing her up as a dwarf (complete with a braided beard!).
I'm really glad to hear this. I'll get the details in another venue, but thanks for posting this, it did indeed make me smile.
Made me smile :)
Happy Halloween.
All my best.
Made me smile, too. I remember fondly (and a little sadly) the days when my kids were little enough to fall asleep in my arms. I miss that.
Glad things are going okay. You're still in my thoughts.
--Fang
So, long story short, Halloween fell through (Grey fell asleep after our first stop). However, we have good news with...
Day 228, November 13.
Easy Update for all... We're winning the battle, and have gotten to the point where we are STREET LEGAL.
Meaning: He can go in public (still be cautious, not during busy times, and masked when shopping and not eating). Even better: He can eat raw veggies and salads again (avoid spinach, due to recent news), which makes my life a heck of a lot easier.
Mrs. Greycastle been talking to him about adding new fruits, such as starfruit and dragonfruit, to his diet to try. So we'll be eating lots of new stuff soon. I'm excited because, as everyone here well knows, Grey LOVES fresh vegetables & fruits. I like that part of him, as it makes parenting SOOOO much easier. Although, with all the fruit basics covered (pears, peaches, plums, bananas, apples, etc.), what's really left? I can say the same for vegetables. Any suggestions either way?
Anyhoo, it's been a long haul to get to this point, and there's plenty more to go, but this is a great breath of fresh air, especially after spending 227 days in a bubble.
So, applaud loudly and cheer, for the next hurdle has been cleared.
/d
All I can say is that its been a LONG trip to get back to this point, and I am so happy for you that I can't really properly express it. I'll talk to my dear Mrs. to see if she has any suggestions regarding the new fruits and vegetables angle. All I can say is thank God, and I really do mean that.
Then again, I knew he was feeling better when I could hear him on the phone the other night. Take care, and I'll be in touch via other venues . . .
Day 234, a.k.a. November 19, 2006
The good news has kept on coming recently... After we got our street legal, we decided to start looking into Preschool for Grey (he needs the socialization). Well, it turns out that our Preschool program has a spot for him MUCH sooner than expected. It looks like he's going to start Preschool November 27 (I think that's a Monday), provided we can move his doctor's appointment to a later time... I'm a little leery of this, just going into flu season AND just coming out of induction/delayed intensification therapy, but the Doc did say it was okay.
In other news: Grey had an outing on Friday. I went to the store, and a couple of other choice locations downtown (the bakery down the street, and a good friend's store). So far, everything looks fine, and Grey has been as rambunctious as ever.
Final thoughts:
At the very beginning, we had no idea whether the treatment would even work, let alone if Grey would survive it. A lot changed in the past 7-ish months, and a lot was revealed to me that I didn't know about the people around me. To everyone reading: Thanks from all of us.
I won't be updating until after the first day of preschool, so I'll put it in writing for everyone who's reading: Happy Thanksgiving
Merry Met & Blessed Be
/d
Happy thanksgiving, glad things are looking up.
So glad to hear the good news!
I really hope Grey enjoys preschool.
Have a great holiday!
--Fang
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Hoody Hoo!
I confess I don't understand the medical jargon, but it sounds like the worst is over.
It must be a relief to be returning to normal, albeit slowly.
One thing I am curious about; how have you managed financially/careerwise? From what I infer over this side of the pond, US welfare/job security is virtually non-existent. Is that true, or is it an exaggeration by our socialist politicians and union reps, to scare us into voting for them?
I hope you have a good health insurance, and a sympathetic employer, who accepts that you may have to take time off without warning. If so that must be a relief.
Hope Xmas goes well for all of you (and the one after that!)
Bob
Snorter: I have many strong opinions on this matter, and would much rather not be banned from these boards over them. email me: darkmeerthedark at hotmail dot com. That way I can just put them out there for you.
Day 244. AKA 11/29/2006, AKA Mrs. Greycastle's Birthday.
We've had a good run here people. Monday Grey started preschool. He apparently likes it, and is very happy to be going. It's nice to see him getting socialized, and that makes us all smile (although Grey cried lots this morning about not wanting to go, he's loathe to leave).
In other news: This week is Steroid week. So, that first impression of a well-behaved child is breaking up pretty quick b/c of that. I guess we'll have to deal with that bridge as it falls on us. Really, it's not too bad, just that Grey HAS to be awake early enough to take a bath because the first thing to go is his bladder control at night (he doesn't have much to begin with) to take a bath.
The only downer this week was that Grey's counts were fairly low (ANC is pretty good), but his platelets and Red blood cells are down, the former a significant amount. We see some of the bruising we saw when this all began, so now I'm wondering how much these drugs are affecting him, even on maintenance therapy, but that's a different story.
Outside of that fact, life is almost normal for us and is a great boon, I'm hoping for more good news later on, but I'm going to wait until I have more information for that one.
Good night, and I hope everyone had a great Thanksgiving and is gearing up for whatever holiday they believe in well.
/d
Day 251. Short Update here, due for soon to be obvious reasons:
Grey was admitted to the hospital yesterday. Nothing, and I do mean nothing, like April bad, but a precaution. Grey has had the sniffles for a few days, and started running a fever. Pretty normal kid stuff, but his counts (ANC and platelets) are down. Big down. We've stopped chemo at least through Friday (possibly to come home then). The main reason we're in is to watch his counts, and insure that this isn't going to turn into pneumonia.
I had to call the school to let them know (boooo!), and I had to ask about any fevers, sniffles, flu, or other viral stuff. Then I had to ask about the potentially lethal stuff: Chicken pox (there are cases in the school, not in Pre-K), and Strep throat (0 cases).
In other news: We did go to a party for our doctor's patients on Sunday. Grey had a blast, and we won some prizes. Grey got cookies (butter cookies in a tin if you must know). He also made an "Elliott" reindeer in the crafts room, and the drums from around the world guy entertained Blue pretty well (mesmerized by all the different instruments).
The biggest thing that weighs on my mind this time is that I can't be there. I have to go home to take care of Blue at night, and he's teething and barely rests all night as is. Mrs. Greycastle hasn't really seen Blue in 2 days now, and I've barely seen either of my kids because of bouncing from work to hospital to home (shortchanging everyone IMHO). Yesterday I nearly couldn't leave the hospital because Grey was just leaning into the door to wave good-bye. Even though Grey is "well" he isn't really WELL. He's happy, doesn't really know anything is wrong (outside of being accessed in his mediport), and wants to do his normal stuff.
Enough frustration, thanks for reading (and this wasn't as short as I thought it would be)
/d