I am glad to hear that everything went well. ~grins~ And it seems like that term "well" is an understatement! I am glad that you all got to go. I am glad that there is a small slice of heaven here on Earth. And I am glad that there are people who are willing to bring that about. Grim, you take care of yourself, your wife, Grey, and Blue. We will be there for you, even if it is in spirit alone. If there is anything I can do, just say so!
Glad to hear all of you had a good time. Sounds like GKTW is an awesome place. Sounds like they armed you all well to face your abyss. Peace be with you.
So I wrote this 2 days ago... As I was getting the flu. It's kinda muzzy in my head right now.
So, the update is late. I'm not quite feeling well...
Day 410. Monday, April 14 2007
Well, We've started our steroids for the month, and our meds have been increased to still lower-than-they-were levels, but the steps going up are slower because just jumping in will make Grey get sick/counts fall again (and repeat the last several months, which I've point blank said is UNacceptable). Outside of that, he's in very good spirits and is happy to be home. The rest of us could use another week of recovery (all of us have been sick in one way or another, myself, Mrs. G, Blue, Grandma Greycastle (my grandmother) and Grandpa Greycastle (my Grandfather) all have had the flu... here's hoping Grey doesn't get it).
ANYHOO... What everyone really wants to hear about is our Wish Trip. Just simply put: it was amazing. We got a pass that got us front-of-the-line access, and we spent our time doing many fun things. The place we stayed is called Give Kids the World check it out, they are some really good people doing amazing things for the kids. What's so amazing to me is that Grey was treated like royalty for 5-ish days, and got to ride in 2 different limousines (to and from the airport in Illinois). One was a stretch Lincoln Towncar, the other was a stretch Hummer. So, my kids have ridden limos well before I ever got the chance (so I was 26, they were 4 & 14 months...).
The GKTW village is really quite nice. They have attractions & events every day, and parents and children are all encouraged while they are there. What's so special is knowing that the families there are all appreciative beyond what the volunteers will ever know, primarily because a family has to go through a very personal and emotionally disturbing version of Hell before they can go there, some lose their battles soon after they leave (GKTW is set up to take people on 24 hours notice). They do Christmas, a birthday party for the Mayor (the kids get gifts), and more stuff than I can remember. They have an ice cream parlor (free and unlimited, even with sugar-free options!), a place to eat breakfast & dinner, the Castle of Miracles (more on this), and they have Amberville for the kids to play in. On top of that, twice a week they have pony rides, they have fishing with the GKTW "Mayor" Clayton, 2 swimming pools and a water park. This is on top of Walt Disney World, Universal Studios, and Sea World. Yeah, you need more than 5 days to spend there.
I think we could have spent upwards of 14 days there, just to get through the parks (Disney 3 days, universal 2 days, and Sea World 1 day), AND then 7 days at the village to spend time there. That leaves one "floater" day to visit one of the other parks, probably Nickelodeon Studios for Grey. TWO more days would have been nice, just so that we could have truly experienced everything without feeling rushed the whole time.
So, yeah, we had an amazing time. In some respects this is reality altering, as the places and people we met were truly there to make people happy and WANTED to be there. You don't see that on the 6 o'clock news, and ALL of us should see it. It does make me put more faith in humanity than I put there before. Really, I'm crying with memories on how happy this made Grey. How much HELL he had to endure to get there. How much those volunteers don't know how much we appreciated EVERY MINUTE of their time. ALL of those kids there deserve far better than they got dealt, yet all of them get to thrive no matter what for just a few days. That's truly special.
/d
Shameless plug: go to Lays website and donate to Make-a-Wish, or go to the GKTW site & find a way to donate there (it exists). There's so much good going on there I can't express it enough. The whole experience there makes me want to move for the sole purpose of VOLUNTEERING where it is deeply, truly APPRECIATED and I know it.
*/shameless plug*
Hey, I was wrong about the six o'clock news:
Songs of Love
So, someone is actually paying attention that we want good stories (if somewhat meloncholy in tone).
BTW: Grey has a song of love. :)
/d
SO, I'm something like a month overdue for an update, huh.
Day 448.
We've done steroids, fallen, and are picking ourselves up again. Yep, it's been an average month around here. Grey is a night owl, much like me, and is up eating croutons & trail mix as I type this. Last week, while on steroids, he ate virtually nothing but Steak & Broccoli (22 steaks, one every meal, lots of grilling out here... and overbudget on food... again). I'm actually okay with this, as it's healthy. I'd much rather feed him that than McDonald's french fries.
The only thing bothering me right now is that Grey's counts fell again. I really don't like that. I think that we have one medication at the correct dosage, although I think our 1/week pill is a bit too strong. The Doc says that it's okay, but I'm more thinking about school & such. We've already fallen more than other kids in Grey's situation, which leads me to say we're overdosing, but that's a bit of wild speculation from a non-doctor. I'll figure that one out later, especially if our falls stay as mild as this one did (no hospital this time).
/d
How is Grim doing? I just wanted to know since we have not heard anything lately.
I won't presume to speak for Darkmeer, other than to point out that he works in retail, so he's been pretty busy lately, but I'm sure as soon as he sees this he'll probably give at least a bit of an update.
I won't presume to speak for Darkmeer, other than to point out that he works in retail, so he's been pretty busy lately, but I'm sure as soon as he sees this he'll probably give at least a bit of an update.
Thanks for keeping us informed, KEjr.
How is Grim doing? I just wanted to know since we have not heard anything lately.
Ask and ye shall receive. BTW: KEJR is right about being snowed in... it's been a VERY busy holiday season (today is the first day in 3 weeks I've really been active on message boards... aside from a post sometime in december over at Candlekeep). Anyhoo, here's my year-in-review.
I spend a lot of time in the Christmas season working 7-days a week. Last year, as everyone well knows, I worked 21 days straight, including Christmas Eve, while Grey was in the hospital 10 of those days. Thankfully, that did not happen this year. Something that keeps me going, especially through the holiday season is music, whether instrumental or lyrical. One of my personal favorites is Trans-Siberian Orchestra ( here, here, and Here are the lyrics that I listened to the most), and that got me through the end of the year. See, I miss my kids, and I go to work about 9am, and USUALLY get home about 7:30pm on a good day. Christmas completely ruins that schedule. I spent from about 7:45 am (starting the commute) to about 8:30-10pm (the time I got home usually) most of the month at work. Although Frustrating, it wasn't bad this year. There were fewer stresses. And I have a three-day weekend this weekend (starting today).
Now, on to Grey. Since last we met, Grey has had NOT ONE fall in white-blood counts to the point of hospitalization. It has been good, almost too easy (given the previous year and 3/4). We have been very cautious with upping of doses of medicinces, mostly at my suggestions. I refuse for another fall. Grey has had a few near falls, but we stifled them. The only real "bad" we've had included steroids (and we all know my loathing of them). The only part of steroids that really bothered me was that we ended our steroid week for December on Christmas Eve.
As to Christmas itself, well, we'll just say we have a lot to be thankful for. The Leukemia & Lymphoma society of Illinois (hey, I'll give a state :P) started a program for gifts for the children and families. Whomever our angels were, thanks (in the unlikely event they read this). Grey got a few things that he wanted, and we got to fill under the Christmas tree (let alone what the Angels got me, Mrs. G, and Blue). Special note: I wanna do this next year for someone, especially if all goes well.
Blue, on the other hand, is a romping little boy, who's about to enter his terrible two's (okay, he already has). He pinches faces, and hits with "his" toys (MINE!). It's fun to watch, but now the real enforcement of parenthood begins. Thankfully, the main worries that were there health-wise for his older brother are less-worrisome. So, I allow a little more romping than I would have 6 months ago. Grey's happy, Blue's happy, and Mrs. G's Happy.
So, it's been a happy and good time for my family. We're even contributing to a Florida fund so we can do Disney again, mostly at Grey's "strong suggestion." The other thing on the horizon, provided my "side job" works out, is that Grey might be getting his own home in the next few months (and that will be cause for great joy, indeed).
Thanks Sharoth and KnightErrantJR for asking how things are. It's hard to sit down and say "Hi everything's happy and good," but perhaps, just perhaps this is as good as it gets.
Merry Christmas, and Happy New Year to all from my family. Until next we meet, may your sword swing true, you ale be full, and your path true.
/d
~smiles~ Good for you, Grey, Blue and, Mrs. Grey, Darkmeer! I was a bit worried since I had not heard anything lately. But as the saying goes, "No News is Good News." Good luck, keep safe and I hope everything goes well for you and your family.
So, it's Valentine's Day. Or, for those of us keeping track, Day 684.
The good: Nothing really new.
The bad: Typical winter cold, again.
Really, that's it. Grey is growing up. I took him to school today, and he looked back at me and smiled. That was it, no whining, no crying, just a smile to let me know he was okay.
Taking almost two years to see THAT look, the one of confidence rather than worry, from him is a great feeling of relief. Sure, he's a kid. Sure, he's had more trauma than most kids. That doesn't change the fact that I am still on unlevel footing about some things.
So, doctor's visit-wise, we've had an easy time. Most visits end as they should (but take forever, mainly because that's what they do). Counts are normally up, but tend to fall quickly. He had a small fall in counts that took us off chemo last week, but it wasn't something I was worried about. We've done this enough now that it's not panic-inducing. That's a good feeling for us.
School-wise, Grey is bigger than all of his class-mates. He's a brick wall, comparatively speaking. The good is that he's generally polite and good, he does have his moments. So, he's as normal as he gets, until this all ends. Until then, the roller coaster has eased from barrel rolls to simple hills and a few curves. I think we can all deal with that.
Little Brother Blue is almost two! Blue's birthday is in about 3 weeks (22 days to be precise). It's a wonderful feeling to watch them both grow up, and to see how many bad habits from Grey that Blue is picking up.
As always, thanks for reading, and sorry for the sporadic updates.
/d
Day 915
So, here we are. This is not a happy update. Before I go any further, I want it to be clear that Grey is fine, as are Mrs. G, Blue, and myself. In fact, personally, we are doing well...
The unhappy update is this:
As of 10/31/08 There will not be a Peds Oncology unit at our clinic in Champaign. They are "temporarily suspending" the program following our doctor's stepping into another department. Frankly, the way he cares for each of his patients is remarkable, and I understand that he wants a break from the massive burden that he bears... ALONE. That's the deal, folks, he was the ONLY doctor that they would call when one of the Peds Onc patients came in. He was on call, essentially, 7 days a week, 365 days a year (minus his all-too-few vacations). Frankly, a second doctor would have been a great ease to that burden.
The sad part is that when they moved the department upstairs, all of us (including the staff) believed that the department was growing, and another doctor would be coming in. Anyone who actually has spent time in that department would know that the setup was special. It was more than and better than what I've seen at larger facilities in terms of open-ness and interaction for the children and the general mental healing from all the ordeals by talking and interacting... It gave a sense of normalcy where none existed before. The children got to see others like themselves, and the parents got to see other parents when going to the support groups wasn't an option (i.e. us). The department's setup and subsequent disbandment leaves some very talented people, and the patients, out in the cold. I know there are other children in the early phases of treatment, and some of them will be able to go to Peoria, Indy, Chicago, or St. Louis. This doesn't make this any easier for those of us who are literally "left behind." Some of those kids are going to be hanging on by a thread.
There is no one to blame in this situation. The Doc has done an amazing job. I would not and do not blame him for anything that is transpiring (I know for fact that he attempted to add another doc to the program in the last year). So, he knew he would be stepping down/reducing his massive load (life or death was held in his hands many times... and I know life did not succeed every time). That itself is enough to drive me mad. The burden of hundreds of children's health was held in his hands. I've seen what he does firsthand. His open-ness, humanity, and general humility in how he treats patients was something that I respect and admire. So, when he steps away from oncology, I know who Grey's pediatrician is going to be, and I know that if he cannot treat Grey, we are going to be driving two and a half hours to St. Louis to finish our study program, because I'm not changing a therapy routine 9 months out from the end, that and the Doctor said it's either him or St. Louis for the end of this phase of treatment. I'm certainly rooting for the former, rather than the latter. I don't want that drive every other week.
Mind you, I've been percolating on this since Tuesday folks, and it took me a that long to figure out what to say.
As to the familial update:
Grey is in Kindergarten, and everything's good and happy there. He seems to be adapting and regressing less, but the blasted steroid weeks tend to screw with that a little (even now). He just came off a rough week, and it wore me out. Outside of that, he's reading, showing interest in new things, and even got to visit a farm owned by one of the teachers (Blue got to go too!)
Blue is a typical 2-year old now. He's pushing boundaries, and forcing the point that he's a people, too :) As a matter of fact, he's pushing that much further than I thought he would. He loved the farm field trip, especially since there were lots of "John Deere" things for him to climb on and in (perfectly safe, I was right there).
Mrs. G. Started a new job, part time at a local community college nearby. She is finally comfortable with the idea that we have set ourselves into some form of stable position. Not only that, but I now work much closer to home, on 2nd shift for a new company (2nd shift). So, we no longer have the childcare worries, and I get to somewhat sleep like a normal human being (and I've only gained time with my children, not lost :)
Now, as to the other happy announcement (even in this financial climate): We bought a home in April, just after taxes were due. So, now we have our own space, our own mostly messy home, but it's ours. I have something that I needed, as well as something that Grey needed, a place to call our own. I love my grandparents deeply, but their home has been a refuge for 4 generations of my family, and called home by all 4 of them. We needed somewhere that had our own connections, our own... life. I'm glad we did it, and I'm even happier that things are going well enough to have done it (and our loan is through the USDA Rural Development program, so no broken banks for me :D ).
So, there's the big update, sorry I haven't spoken since February... Life has gotten in the way every chance I get to think about this. I'm just glad to have mostly happy news.
Until next time
/d
That's both good and bad news. I'm very happy to see that you're getting your own life settled - positive vibes in the home is good for healing. :)
Hugs and cookies!
Darkmeer, I am VERY glad to hear that most everythign is going well for you and your wonderful family. I can understand that loosing your son's doc can be a bad thing, but I know that you and Grey will be fine in the long run despite this setback. Best of wishes and my prayers go out to you and your family!
Kevin a.k.a. Sharoth
So, a trip down memory lane and some blatant rage... but first, the good of the past weekend. We need a real family update, and I'm ready to give one.
Grey got to be normal, sort of. I've finally given in to a certain level of pushing beyond. This past weekend Grey got to do several things he wanted to do.
Saturday (Oct 11): One last huzzah. The Peds Oncology group has a yearly trip to Memorial Stadium to watch the Illini play. This year was no exception, and we got to watch them play through the first half, which was quite fun. There were members from the Marching Illini playing some of the most fun songs that I remember from high school, which Blue enjoyed. Grey enjoyed playing touch football in a group of folks that were there by the field (all members of our group & their families). Our Doc certainly seemed to be enjoying himself, perhaps allowing himself to relax. He asked me, while I was playing football with everyone, if I'd gotten anyone (I'm not all that good). I later responded to him, "Yep, right in the face" (a punt hit me in the face, but I didn't fumble it).
Sunday (Oct 12): Par-Tay! Grey went to not one, but two birthday parties. The first was for one of his classmates, which was a lot of fun to watch. The kids had a pinata, played on the park there in town (one block from our house), and had cake & ice cream. Yep, every kid's dream. I am happy that Grey got that chance to be normal with kids his own age. Second party was for my cousin. An indoor pool party nearby, and Grey really enjoyed himself, even though he held onto the wall more than he did anything else, but he maintained a big smile the whole time. He even sat in the hot tub with mine and our Uncle. He didn't really eat all that much all day, but he was fine and slept like a rock!
So, now for Memory Lane: From Square Frackers with butter, to a true Doctor who devoted himself into his practice and saved many lives. I saw this in my journal from May 3, 2006: "As strange as it is, we're doing a lot of growing up as both parents & adults (and here I thought I had already grown up)." I had no idea of the gravity of that comment. I was right, and I finally said thanks to the Doc in helping with that. I said that this past week, and I mean it. I've grown in ways I never expected, and in many cases did not want to go. They have shaped me into something more than I was before. Something, I hope, better than before.
It's odd looking back, and realizing who has been there every step of the way. From the people at the clinic/hospital, to our family and friends. We really do appreciate everything, and it's hard to let go of everything now. We're losing the department... okay. We're not going to see the Doc as a primary oncologist... Not happy, but I understand it from HIS side of it, not the Clinic/Hospital's side of it.
Last appointment in the Pediatric Oncology Clinic, Tuesday, October 21, 2008.
Huzzah until next time.
/d
P.S. For those keeping track, everything from Memory lane to this has been harder to write than anything I've written since December 2007.
Lilith, I would like to take you up on those cookies sometime (I hear marvelous things) :)
Crimson Jester, Ubermench, and Brian: thank you for the prayers.
Sharoth, as always, thanks.
Strangely, I point out to some of my family that I have a larger support network than they realize.
Thanks for being part of it, everyone. Sometimes, it's just a peek to see some happiness, sometimes it's something to remind myself that others really do care. No matter what, everyone who's posted here deserves a thank you.
/d
I think that today was an interesting day.
Grey is still coughing (even on an antibiotic). Blue was running a pretty big fever with the same cough all of us have had over the past week or so (that and Pinkeye...yay). So, needless to say little is getting done at home, but we're getting better (or at least I keep telling myself that).
As to the interesting part of the day: Cake. Specifically my favorite cake ever (I baked it myself today :P ), a Buttermilk Chocolate cake (from Scratch) with Cream Cheese Icing and Maraschino Cherries in a smiley face. I took that to the clinic today, alone. There's a big change coming next week, and I think it's a very sad change. The clinic closes on Friday.
These people have earned my respect, my care, and beyond. It was the least I could do, but it falls within their "donation/gift" rules at the clinic. They do things I can't think about, on a daily basis. And I wish they would or could continue.
The joy of today was that I saw something I haven't seen before. The Chemo part of therapy ended for someone today. I really appreciated that and I am glad I finally got to see someone end their therapy. We even sang Congratulations to you (think happy birthday, but using congratulations). This is something that a number of the other kids in therapy (I remember seeing 5 kids, in various stages of being hooked up to machinery) come over to sing with the Child Life Specialist, our Doctor, our Nurse Practitioner, and our Nurse. Something different from anything I've ever seen, and I'm glad I got to see it. It's something to warm the heart.
Till next time, with a bittersweet and warmed heart,
/d
PS: Song of the evening: Concede by Sister Hazel.
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I just found this thread and finished reading through it. Your family's journey has made me cry, and smile. My thoughts and prayers are with you as your son continues down the road to full recovery and you all heal. In your writing, I can see you have truly been transformed by your experiences; you have been eloquent from the start. Hopefully the next steps in this journey will only get easier, and your humanity and generosity will continue to shine through. L'chaim.
Darkmeer, I am only a call away. I do hope that everyone feels better. If there is anything that I can do, just say so. Take care my friend.
Scare of the week: Blue.
Two things: Ongoing: Blue has told us his legs hurt when walking with random fevers and no other symptoms... Just like Grey had before his diagnosis.
Blood work on Thursday came back negative, but due to him fighting off viruses, it could be masked. So, we're doing another poke today (after I drop Grey off at school).
THEN, on Friday, something inexplicable happened. Blue had raised, randomly shaped, red-ish raised areas all over his stomach, that suddenly appeared right as I was about to get ready for work. So far, they show as a viral infection of the skin. But, given the earlier scare of the week, we were told come right in and they'd see us immediately. (Again, that harkens back to March 31, 2006... 13:29:46, or 1:29 PM and 46 seconds for those of us keeping score.) Needless to say, I was late for work that day. The doc even said he hadn't ever seen that type of "rash" before, and checked with other doctors... which also came to look at the rash and said essentially the same thing.
There is a bright side to this, as it seems to be lessening in intensity, but it did spread to warmer regions of his body, his wrists, his armpits, inside of his legs, and around his sides. Oddly, nothing on his back, lower legs, or anywhere in his mid-arm, and instead of rounded shapes some of them became straight lines.
Add on to that, the poor nurses who tried to draw Grey's labs this past week could not get his mediport to draw blood, so we did what I told him we wouldn't do again... We did a peripheral draw. I am not happy about this, as it made me break a promise to my son. Livid would be a wonderful way of putting it, as I am very Solamnic in giving my promises... I keep them, and don't give them lightly. That killed me to break, especially for him, after going through an hour and a half of trying to get it to draw (yes a new round of nightmares due to screaming, it still haunts me to my core). The good was that everything seems to be normalizing to therapy levels of White Blood Counts (ANC especially), except for that cough he's had forever. We're likely to test him for Asthma soon because of that, or even chronic bronchitis (I'd believe that, only in the winter though).
We're going to do a lumbar puncture next week, and I'm curious if the port is in some way kinked/pinched, which is again a scary thing. That might put another surgery on the burner for us, which will likely occur in St. Louis this time.
Needless to say, I'm a little stressed. Let alone trying to figure out what to do about our appointment in St. Louis (travel conditions on Dec 1-2), and then dealing with a possibility of another sick child. It does not bode well for my sleep habits (already lacking). Darn devils on my shoulder don't want to leave me alone.
ESOM
/d
*hugs*
I hope everything turns out well for both your kids.
Darkmeer, if you want to talk, give me a call. I am available at anytime.
Dodge fate=Check.
Blue's results all came back normal, and his rash is essentially gone. The visible sigh of relief from us and the doctor when we got there was noticeable. We finally got his second flu shot, along with myself & Mrs. G's. On top of that, our doc for Blue said the pathologists asked if it was Grey's brother, which made us all chuckle. It was also nice to hear the doc tell us that if we had this concern at any other time, he would be happy to run the same tests again (did I mention I like this doctor?).
In other news, they moved our appointment for Grey in December (in St. Louis) has moved from my day off to the day before (Monday Dec 1). The doctor doesn't take appointments on Monday anymore (here's hoping for a schedule swap with someone at work, I really don't want to take a day off, I want to save my Paid Time Off.). Grrr... Other than that, our Lumbar Puncture coming next week is going to be interesting, as we're getting admitted to the hospital at about 7:30am, and then going from there.
So, here's hoping for some form of normalcy...
/d
Darkmeer, My prayers are going out to you. I am glad that things are going better for you and your family.
Well, it is December, and almost time for the yearly reflection. But, that will occur later. It's time for an update... on everything as we know it.
Well, the whole of the social issues with Grey have been increasing. He's spacing out. He's not disruptive, but he's not really there, either. We shall see where this leads, as the Doctors all agree that similar things happen with kids on Grey's chemo routine. Sadly, there is nothing that can be done test-wise until chemo is done (as the chemo may be part of the cause). We're watching him closer, and even noticing it more and more at home. In one respect, we've done better (limiting video games), and reminding him that he has normal toys to play with. He's got a lot of work to do, but I think he'll improve with a little more work.
As a side note, this week's steroids have already exhausted Grey. He's in a relatively good mood, but he's showing signs of a short fuse for his anger. I am watching that more carefully, as I know what this is quite well. Grey hasn't had a full week of school in the past 3 weeks, as he's had the flu (last week), and a doctor's appointment (every week), and exhaustion from steroids (today). We'll see what happens with the rest of the week (let alone what will happen with the weather... yay ice storm?).
Blue's rashes are coming and going, but I think that's going to be par for the course for him, as he has remained relatively normal otherwise. I'm just glad that he's finally stopped coughing (he got Grey's cough, and some of his flu earlier this week).
As to our scheduling...
We still see our old doctor for our LONG appointments, but we're still transitioning over how that is going to occur. His nurse is able to draw from Grey's mediport, but it's not the easiest thing in the world to do (19 guage needle and roughly .5cm space to poke into to get the draw, and the blasted mediport dances under the skin prior to the poke... adding to the difficulty). We're some of the lucky ones who were able to be kept as patients (being so close to the end of therapy, and with other wierdness with counts).
As to St. Louis... we get to go once every 4 weeks. I had hoped for once every 6 weeks to make my life easier. That didn't happen, but moving the date to Tuesday did occur, as to see a different doctor (St. Louis has several peds oncology specialists, and each one sees patients in outpatient once per week).
Last things:
Thanksgiving went well on all accounts. We went to Mrs. G's parents on Thanksgiving, and we hosted my parents & grandparents on the day after (as a lunch, as I had to work at 3:45). Here's hoping that Christmas goes even half as smoothly.
Year end review coming later this month, until then, Merry Christmas and Grand Festivus.
/d
~grimaces~ Damn! Sorry to hear that! ~shakes my head~ I just wish that there was something that I could do for you all! Cancer is bad enough when adults have it, but kids? I feel for you my friend! I really do. Please keep in touch!
December 31, 2008 Year-in-review.
So, here in the Central US, it's still 2008, sorry all you East Coast folks.
Our year in review goes fairly nicely, minus a couple of speed bumps. Of course, at the end of 2007, we had our usual hospital stuff which lead into the new year. The year has gone smoothly, all things considered.
I have changed employers (and still kept the old one :). It was a change for the better of the family, and it definitely helped when gas was $4 or more a gallon. We now have a home of our own, a small 2-bedroom with an office home. It's quaint (and in need of a dishwasher other than me!) and we have a wonderful tree out in our yard that works marvelously as a jungle gym for the boys. We even took some photos of ourselves in the tree for the holidays.
Mrs. G. has gone back to work, and likes her job at a local college. She's working part time, but it's something that made the home purchase much easier on the pocketbook. I'm glad for her, and hope she remains happy there. She's finally accepting that our journey with Grey's illness is almost done, and so am I.
Grey played little league baseball (T-Ball league), and thoroughly enjoyed himself, and it's a fond memory I'll carry with me of his childhood. I'll enjoy what little he got to play, because he had pneumonia (and stayed in the hospital for a week). He has started school, and has the expressions of a much older child (as to be expected). His downfall is the side effects of the chemo, or at least that's what I'll believe until I see otherwise. I see flares of his anger, which I know are a side effect of the steroids (long term, I know... I took similar steroids for Asthma as a child and I still see the effects today).
Blue has blossomed into a brighter, happier little boy, who is now potty training. He's very lovey-dovey, and I'll remember his smiles and happiness in general. There's been some scares with him, similar things occurring like what happened with Grey right before his diagnosis, and I have a doctor I can trust to do what I ask of him for peace of mind, as well as making sure that Blue doesn't have anything dangerous.
I could rant about the "transition" that we have gone through since our clinic closed, but I cannot believe it is all the fault of our doctor. Frankly, he did too much for one person, and since we've transitioned (still seeing him), he seems so much happier and more relaxed. I truly hope that it's genuine, and by all my body language accounts I'd say it is. To see that, after all of this has happened, heartens me to think he may step back to the plate some day, perhaps on better terms.
The last bit of happy news is from yesterday's trip to St. Louis. We spoke with our new "regular" physician there, who remembered us from our initial diagnosis (oddly, I remembered him, too). He is very personable, and disagreed with us coming down for labs and to say "hello." He changed our times to come down there to once every 3 months, rather than once every 4 weeks. That is enough to let me breathe a bit, and I've plenty of time to request a day or three off from work, since our next visit there hits spring break for Grey.
I hope that this year-in-review brings a smile, it does to me. I have a target in my head for 2009. It's June 13, and I expect to throw a huge party that day as Grey is scheduled to end therapy that day. I'm at the point where I'm ready to stop giving my son medicines, stop making him get poked, stop everything and let him be normal... I want to watch my son be a kid.
As I've said in years past, the long December's over, and this year is shaping up to be better than the last.
Happy New Year, all. Thanks for reading, and may you be blessed with good karma and happiness all through the year.
/d
Happy New Year . . . and let me know if you ever find out if your schedule is changing. Now get some sleep . . . ;)
Happy new year my friend! All I can say is may 2009+ be better than 2008 was. I will stil keep all of you in my prayers.
A tenday. That's how much time we have left to give Grey his chemo. We're spitting distance from the end of therapy. So, we decided, with today being the last trip of therapy, to go to the St. Louis Zoo. The boys did great, even though when we got there there was an interestingly short thunderstorm brewing, more on that later.
I FINALLY got a concession or two out of SLCH. The first one being that we no longer have to do the Albuterol-Pentamodine (sp?) breathing treatments to prevent pneumonia. I'm glad for that, as our "former" doctor had mentioned a pill form, which we can take once he's off of therapy (we have the prescription for that right now). The second, and more important concession, is the time frame when we go. The former Doc agreed to do the labs for the next year, with us going quarterly to St. Louis. This makes me very happy, as I no longer need to worry about going down there every month, taking time away from home and (possibly) work. The last, happy, surprise, was that Grey ends his therapy a day earlier than expected. He ends his therapy on June 12. At this point, we've won the battle, and it's just the loose ends we're tying up. One week of steroids (we've been down this road... rah :( ), and 5 days of normal meds, and we are done. Nevermind that he ran a fever today, and we had some discussion of whether or not to go to the zoo, and the SLCH said we could go, but to make sure he rested a lot (so he rode in a stroller most of the afternoon).
So, we saw lions (okay, they were hiding), Tigers (yes), and Bears (three types). The boys had a wonderful time at the zoo, even with the rain storm we dealt with. The trip through the zoo went much more smoothly than I expected and that is a blessing in and of itself. We rode the train, and then went through all the exhibits we had time for (we need to take a trip down there especially for the zoo sometime, so we can get it all in).
Today was a good day. We're nearly there, let's make this last 100 yard dash count.
Oh, I did a calculation based on the therapy schedule as of current, figuring that we end our therapy at 9:30:37 PM on 6/12/09, we have been effectively in therapy for the following amount of time:
The duration is 1169 days, 8 hours, 0 minutes and 55 seconds
Or 3 years, 2 months, 12 days, 8 hours, 55 seconds
This can be expressed in the following measures:
101,030,455 seconds
1,683,840 minutes (rounded down)
28,064 hours
167 weeks
So now, for the countdown
The duration is 9 days, 22 hours, 37 minutes and 15 seconds
Also known as:
859,035 seconds
14,317 minutes (rounded down)
238 hours (rounded down)
1 week (rounded down)
I couldn't be a prouder parent of my child than I am right now. He has shown more strength than even I had at times. Let the last dash begin!
/d
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Darkmeer, I've thought of Grey and Blue many times over the past several months (and you and Mrs. G, by extention). I've especially thought about y'all several times this past week. Last Tuesday, my nephew Mikey (he's 4 years old, about 8 months older than my son) got his first completely normal spinal tap result back! I have hoped and prayed for you several times for you and yours and for me and mine over the past couple of years (what can I say, I'm selfish and like happy endings). I'm gonna keep on hoping and praying and sending good vibes your way, man. God bless you all.
~CHEERS~ Yay Darkmeer! I am so glad to hear that!
So the last update was happy. This one... not so much.
Grey had a bacterial growth showing up from St. Louis, and we got admitted to the hospital on Wednesday. The good news is that we'll likely be out tomorrow, provided all the labs stay "good," for whatever that's worth. This was a wee bit frustrating, to say the least. I'll hopefully put an update here on Sunday saying that we got out on Saturday, as it's been difficult to get time with a computer, and will likely remain the case on Sunday. I'm getting cranky with this monkey wrench this close to the end.
8 days and counting. I see the light at the end of the tunnel... please let it not be the oncoming train.
/d
Quick update here:
We're out of the hospital, and at home enjoying the first week of Summer vacation (starting today). Anyhoo, the whole ordeal was unpleasant, as the whole reason we were in the hospital was likely treated on Tuesday. This does make me appreciate that the mediport will be gone soon. I'm looking forward to that, probably as much as I am the end of Therapy on Friday night.
/d
I am wishing you and your family the best!
Day 1169.
The bacterial growth from last week didn't show up anymore badness, so we got out of the hospital on Saturday (yay!). So, Grey got to play back to back baseball games (yesterday and today). He even had a 11-person cheering squad (thanks all that made it out). All of this adds up, and helps to make this an even better update because:
The game has been won.
We've been actively working towards this goal for 1169 days, 9 hours, 35 minutes, and 8 seconds. I can't believe we're here finally.
Our exact duration (thanks very much timeanddate.com for existing, and yes, this is exact as I had it going as I gave Grey his final dose of medications)
From and including: Friday, March 31, 2006 at 1:29:42 PM
To, but not including : Friday, June 12, 2009 at 11:04:50 PM
The duration is 1169 days, 9 hours, 35 minutes and 8 seconds
Or 3 years, 2 months, 12 days, 9 hours, 35 minutes, 8 seconds
1169 days, 9 hours, 35 minutes and 8 seconds can be converted to one of these units:
101,036,108 seconds
1,683,935 minutes (rounded down)
28,065 hours (rounded down)
167 weeks
Don't get me wrong, therapy may be done, but Grey is still going to be on meds for pneumonia while his immune system heals itself, as well as having to remove the mediport. Outside of those things, there is somthing more important than all of that. Grey... gets to be a real boy. That's something he lost 3 years ago, and he gets that back now. Let's make it count and not have any more hospital stays.
The one thing that really bothers me about this all is the impact that watching Blue run around as a normal child, something that we all lost with Grey. As I drove home from work tonight, I listened to some Green Day (Wake me up when September Ends to be specific), and this line in particular stuck out:
"as my memory rests
but never forgets what I lost"
I lost my son for three years... and now I get him back, no drugs, no nightmare... Just Tanis.
Not only does he get to heal, we get our son back. Not the medicated child, the happy one, the one that we lost 3 years ago. I'll never forget what I lost that day, and I hope that he can. I gave him my word that he would have someone with him throughout his nightmare, and that word was not broken. Thanks for walking the nightmare with us, and thank you all for your support, prayers, good karma, voodoo to make the pain stop, and everything else that I've missed.
"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me." Psalm 23:4
Plenty of fear... but at this point, the fear is gone.
ESOM
Steve
I am so very happy for you and Grey, as well as for your family! I just wish I could have done more than been a part time cheerleader! Gratz again to you all for not only fighting this hard battle, but for winning it!
Go Team!!!
I am so very happy for you and Grey, as well as for your family! I just wish I could have done more than been a part time cheerleader! Gratz again to you all for not only fighting this hard battle, but for winning it!
Go Team!!!
Part time cheerleaders were quite necessary several times, Sharoth. It was very much appreciated.
Part time cheerleaders were quite necessary several times, Sharoth. It was very much appreciated.I am so very happy for you and Grey, as well as for your family! I just wish I could have done more than been a part time cheerleader! Gratz again to you all for not only fighting this hard battle, but for winning it!
Go Team!!!
~bows~ It was the least I could do for you and your family. I am just very happy for you and Grey and everyone else! Keep up the good work!