01/03/03
|  | *sigh* Derek and I went down to the hospital today to visit Scott. I was very encouraged when I first got there, as he was really looking perky and (I thought) amazingly GOOD! Judy said that when we walked in was the best he HAS looked since he's been there. Having a friend does SO cheer him up. But, it didn't last for long - maybe an hour or two and then the pain came back and it just broke my heart. It is very heart-wrenching to watch a child suffer like that - especially a child you love, and not be able to do a single thing to help. I know that God IS with this family, because Judy and Rob display amazing strength and patience through all of this. Anyway... we dO have some good things to talk about. The infection that he had is pretty much gone - and they are fairly certain it was NOT at the site of the tumor. They have removed his Broviac, and replaced it with a temporary Pik-line, because they fear the Broviac MAY have been responsible for the infection. So that is good. Also, there is still a great deal of concern about whether the tumor is growing or not -- and whether this chemo is WORKING or not. BUT... the measurement around Scotts leg at the site of the tumor has actually dropped by .5 cm as of today. So that is a very good thing! I asked ... and I'm sure many of you wonder this too ... why don't they just go in and REMOVE the tumor? (it seemed to me that would solve a LOT of the problems - relieve the pain, and give them that much less cancerous cells they need to worry about killing) But it doesn't work that way. First, they can't operate NOW because Scott just finished a round of chemo, and his blood counts are due to be dropping and he wouldn't be strong enough to fight off any possible infections from the surgery, etc... Also, they are hoping the tumor shrinks because then that is less muscle tissue they actually have to remove. Soooo, I guess we just have to keep the faith in these doctors, and keep saying those prayers. |
01/05/03
| | Scott now has a message board on this page! If you would like to talk to him, he can answer you on the message board. It's not like chat, because he's not there in "real time" - but you can leave messages or ask questions and generally converse, and when HE has time he can come and read what you wrote and answer you. Try it out! You can find the link right above these Webmistress Notes. Also... I forgot to mention something BIG in my last post. Scott got a new bed at the hospital Friday. An AIR bed. It's really cool - and will hopefully make life a little more comfortable for him while he's there. It has many different baffles or "air sections" in it that can each individually be pumped harder or softer as he needs it. He wasn't loving it when I left him Friday night -- but I think it takes a little fiddling to get it adjusted just right. Once that happens I'm sure he's going to love it!
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01/06/03
| | I talked with Rob this evening and he says Scott had a very good day today - though also a very long one! He had bone scans and chest scans done today, and he was heavily sedated for both, so he's not really "aware" of how good his day was! But the good news is that both scans came back clear. The cancer is still only located at the site of the tumor - and this is very, very, VERY positive news for us!!! The doctors will still give a few more days to see if the chemo is going to shrink the tumor and then a decision will be made as to how to handle this tumor in the best interest of Scott. Keep those prayers coming! AND ... I've noticed a LOT of you have gone to visit Scott's message board! That is wOnderful! Please do not get discouraged if he doesn't respond right away - sometimes his days at the hospital are very busy and he doesn't always feel too great. So give him time - he will come visit when he has the chance. |
01/12/03
| | Oh this is hard. I did not want to have to make this update and I hope I can say it all accurately. I've searched my mental library for a way to pretty it up, but I just can't seem to find one. Judi, Rob and Scott have all met with the doctors and have come to the decision that amputating Scott's leg is the best thing for him. The tumor was not responding as they had hoped to the chemo, and everyone feels that this solution offers Scott the best chances for a long and healthy future. Scott made the final decision and has given the okay for me to tell you about it. Yes. SCOTT okay'd it. He's going to be coming home on Tuesday, to rest and build up strength for the surgery. The surgery will happen in about 2 weeks. The type of amputation that Scott will be having is called a hepi-pelvectomy. It is very rare and quite aggressive. In essence they will remove all of the leg and the hip. They feel that by doing this they will be removing ALL of the known cancer in Scotts body. He will still have to undergo 5 or 6 rounds of chemo AFTER the surgery in hopes of killing every last possible living cancer cell that may be hiding anywhere in his body. By doing this they offer him his best chances. This has been a terribly hard decision for the Coyles to make and if you can imagine having to make this decision as an adult, think how much harder it is for a 13 year old HYPER active boy to make. Scott is going to need a ton of love, care, compassion, and understanding ... and still he's going to have to deal emotionally with this loss. With the decision made, and surgery being scheduled, the best that we can all do now is to pray for Scott's emotional health. And to BE THERE, and to support him. We all thought he had traveled a long hard road in the past year, but the road just became a lot a longer, and the climb, for Scott is going to be all up hill. Judy has given me a link to a web site that explains this type of amputation in much greater detail. I think I will share that with you here. Those of you who are interested can check it out and answer a lot of your questions. Go here: Hemi-Pelvectomy |
01/17/03
| | Wellll... a date has been set for Scott's surgery. It will be next Friday - January 24th, at 7:30 a.m. It's a bit sooner than I had thought - but as Judi explains - it's two weeks from when they talked about it with the doctors! I hope you will all keep Scott in your thoughts and prayers that day. I know... we all keep him in our prayers EVERY day! Some EXTRA prayers that day, please. Also, Scott needs some help with something. If anyone in the area is into a computer game called EVERQUEST, Scott needs some help learning how to play this. He got the game for Christmas, and it looks like one he'd really like, but he hasn't been able to figure it out. He doesn't have the concentration right now to read a book or manual on it... but if anyone actually PLAYS the game, and could spend some time helping Scott learn it, that would be GREAT!!! |
01/23/03
| | Quick update here! Scott's surgery has been postponed. It will NOT happen tomorrow morning! He had a blood transfusion on Tuesday to bring up his platelet count and they still aren't quite high enough. They will retest his blood on Monday, and then reschedule the surgery. I will have MORE of an update later - but I wanted to get this up "in case" I don't get back! I'm awaiting an E-mail from Judy. :) Scott's in good shape right now and feeling okay. More in awhile! |
01/24/03
| | Oh boy! Oh BOY! B I G news at Scott's house!!! Oh this is FUN news! You'll never believe it!!! Judi and Scott went to pick up Ty from school yesterday - and on the way home - they were driving the back way and were almost down to the water, where they would lose cell phone service - when the phone rang. Scott answered it -- and GUESS who it was! Just GUESS! This is tooooo cool! It was CAL RIPKEN JR!!! Holy Cow! Judi heard Scott say "Cal Ripken?" and she slammed on the breaks! She says Cal Ripken is one phone call you DON'T want to lose to dead air space! LOL! Scotty and Cal talked for 3 or 4 minutes, and then ... whew! Cal said he's gonna call Scott again when he's IN the hospital (after his surgery) and THEN... he said when he gets OUT of the hospital, he's going to visit him!!! Is that TOOOOOO exciting or what??? Do you see me turning GREEEEEEN here? I bet you all are too! I mean there is NOBODY that deserves some attention from Cal like Scott does -- but maaaaaan... you just don't EVER think something like THAT is really gonna happen! Whooooooo hoooooo! Gooooo Scotty! Okay... what else? There was a lot of update stuff! OH yea! Scott received a NEXTEL cell phone this week! (the one he was talkin' to CAAAAL on!) Anyway... Judy and Rob don't really want him to use the phone part of it, but if any of his friends have access to a NEXTEL and would like to "beeb" him - he would LOVE that! (just email Judi to get the code) Scott is such a gadget freak and getting to use these kinds of toys just really cheers him up! AND this little gadget keeps him and Rob and Judi in constant contact with each other. When Judy runs the younger kids to school, if Scott needs her, he can get her right away! No probs! It's great! One last thing ... a little quote from the email Judi sent me -- I wanted to share it with you! "Everyone has been so kind to him! He certainly feels very special! Friends and family near and far have reached out to us and provided us with so much support and prayers! We are so appreciative of EVERYONE. We feel so fortunate to have so many people care about Scott and our family! As bad as things are for us, we feel so blessed to be so rich with friends. The smiles each of you bring to his face are priceless!" (BIG GRIN) And the smiles he brings to US are priceless too! Huh? OH! I almost forgot! One MORE exciting thing! Somehow... I have no idea ... but SOMEhow, Jan Johnson arranged for another little delivery Scott got this week! Scott received a T-shir, a cap, and a signed autographed picture from... ... ... no other than... ... ... (I love to tease you guys!) ... ARNOLD SCHWARTZENEGER!!! Golly I hope I spelled that right! I'd hate to misspell the name of someone who brought Scott so much joy! Isn't that another just too cool happening? I'm tellin' ya! Oh yea... the autographed picture was made out "To Scott... Stay strong" and signed by the man himself! Sheeeeeesh! |
01/27/03
| | Latest news has it that Scott had blood drawn very early this morning to see how his platelets were doing, and they weren't doing well. They're the same as last week. Then they were heading to NIH for a meeting with the radiation therapist about whether or not to begin radiation before the surgery. Now, tomorrow he will be having his bone marrow tested again to see what's happening with that. Basically, the deal is, they can't do the surgery if his platelets are low because platelets stop the bleeding, and if there are none, then he would bleed too much! So now they have to find out if his body is making the platelets, and if so, where are they going? And if not, why not? The bone marrow test should give them the answers they're looking for. Then they can decide how to proceed. Results from the bone marrow test are expected back by the end of the week, and we will let you know as soon as we know something! And that's where we're at. |
01/30/03
| | GOOD NEWS! GOOD NEWS! Scott's bone marrow tests came back CLEAR!!! He IS producing platelets! Now they have to figure out where the heck he's hididng them! They think it MIGHT be that one of the medications he was on was eating them - so they have removed that medicine from his regime, and will retest his blood on Monday. If the platelets are back, then they will schedule surgery for the following week. If not ... then you're guess is as good as ours! Many prayers please that this IS the problem - because Scott is really still in a LOT of pain and the only thing that's going to make the pain go away is the surgery. He needs to have this surgery soon. I finally got to see him with my very own two eyes today! It was GREAT and it was sad. He was lookin' like a sad little sack today. Very tired and out of it while I was there. NO WAY did he feel up to having Derek stay and play. :( But he was excited about the impending arrival of a new (borrowed) wheelchair that he was expecting this afternoon. This is not the electric one he's hoping for later - but this one reclines to allow him to rest easier in the chair. This so important because getting in and out of bed is sO painful for him. He said it took him about 2 hours to get out of the bed this morning!!! Oh! One more thing! I need to make this correction! Cal did NOT tell Scott that he would come and visit him after surgery -- what he SAID was "Maybe we can get together" after the surgery. So, I guess it's not a for sure thing... but it's still HOPEful! (and I have a feeling Cal will make time for our little buddy!) |
01/31/03
| | RATS! Scott is back in the hospital as of last night. The pain got too bad again and so they went back in. This just stinks. Well... the good news is, since he was there, they drew blood and his platelets ARE coming back up. Surgery has been rescheduled for February 10th. God, please let it happen that day! Pray for this please. Let's just get this poor kid out of the pain he's in ... once and for all. |
02/05/03
| | What a SCARE I had yesterday! I called the hospital to find out Scott's new direct dial line, and was told that he was in Intensive Care! Of course, I panicked! But once I got ahold of Rob I was assured that this is all okay. It turns out Scott has been in Intensive Care since he went back in for pain management. It's a precautionary measure. Scott is in a horrible amount of pain now, and in order to keep him comfortable they have him knocked out most of the time. This means that they have to keep a much closer eye on his vitals, and for that he must be in the ICU. He's also being transported back and forth each day between the hospital and NIH for radiation treatments. The radiation will (hopefully) shrink the tumor enough to allow SOME pain relief until surgery occurs. Surgery is currently scheduled for Feb. 10th. -- next Monday. Can't come soon enough for any of us I think! We all just want to get this over with and get Scott back on the road to recovery. Don't let up on those prayers now... this little guy needs all he can get. As a matter of fact... some special prayers for his "platelets" would be good. They are still not quite high enough for surgery, although they are MUCH better than they were -- but we need them up to snuff by (I'm guessing) Sunday so that the surgery can proceed! Thank you! |
02/06/03
| | Quick update here! Prayers and drugs are working! Scott's platelets are up to 60 today which is enough for surgery to happen on Monday, assuming they remain that high or go higher yet! HURRAY HURRAY!!! Also, they are "hoping" to get him out of ICU over the weekend and put in an epidural - which will relieve the pain altogether for him! So, pray now to that effect and it's looking like surgery will be a GO on Monday! :) |
02/10/03
| | Well... it's done! The dreaded surgery is over. The cancer is gone. ( i know... there's always a microscopic chance ... but lets take this moment of Glory and go with it, okay? All the tests have been good! ) Now, we have to look to the future and help Scott to heal in whatever way he needs us to help him. The doctors report that the surgery went well -- the lymphnodes in the upper thigh area tested clear - no cancer -- and they're gone now too! He has the epidural in his spine, and an alternative form of pain relief also. I still have not gotten to actually "talk" to Rob or Judi ... we've been playing a rather long game of phone tag, but they have left me messages, and it looks like Scotty's doing as well as we can expect. I WILL talk to one of them before this night is done, and if I can add more, I'll be back! Just keep praying for Scott's relief of pain, his successful recovery, and "peace" within. |
02/11/03
| | I talked to Rob last night and Judi this morning. Scott's doing very well, though STILL in pain. He does have the epidural, and he also has 2 epinurals that deliver pain killer right to the site, and then he has his IV cocktail delivering the rest of his meds to him. The pain that he's feeling right now is more from bedsores and a rash that has developed all over his back from laying still, and from sweating. (Scotty just naturally sweats a lot...) Sooooo... they have him in a special bed (ordered in last week JUST FOR HIM!) It rotates and does all kinds of magic to keep the pressure off these sore spots. I'm sure it also helps ease the pressure on the surgery site too. Before the surgery, Scott had expressed a great deal of worry about having to have the stitches removed. His doctors took his fears into account, and all but a handful of his stitches are internal! I'm told he may have 5 to ten on the outside! Isn't that just amazing? They will be moving Scott out of ICU this afternoon, and back up to his room - along with his special bed, and they are talking about getting him up and out of the bed on Thursday! As soon as the stitches heal (possibly next week) he will begin Chemo again. The chemo he will have is called ICE - not sure what it stands for - it's the 3 different meds that go into the mix. All I know is he wants his shaken, not stirred! LOL! He hasn't actually come awake enough to complain much about anything ... but Judi says he has made it clear that he HATES all the wires that he's hooked up to! Hopefully sOme of them will go away when he leaves ICU ... shortly. I haven't done this before ... because Scott sort of banned me from it... but this time, I think I simply MUST mention his brothers. My reason? Throughout this whole ordeal ... and this has been an ordeal for ALL members of the Coyle Clan... Ty & Drew have managed to do something that I think is pretty darn impressive! Ty (who's in his first year of middle school) pulled STRAIGHT "A's" on this report card, and Drew brought home all "A's" with ONE "B"!!! Is that not magnificent? Many of you have no idea how much shuffling these kids have gone through this school year, but I am shaking my head in AWE at this! AND... not only that, but TY took first place in the Science Fair at his school, and is moving on to the county level next month. I think both of these boys deserve major recognition for this feat! I do! |
02/13/03
| | This has not been a great few days at the hospital for our Super Hero! The incision is making it very difficult for him to get comfortable and get any rest. He wasn't able to take some of the "oral" meds he was used to, and he has an NG tube down his throat, and that doesn't help. Judi says he did start back on those oral meds today, and that when he does get to sleep, he sleeps comfortably. Tomorrow will bring some major steps. 1) Surgeon will visit and they will change his dressings and remove the drainage tubes and the epidural. Scott is DREADING the removal of the tubes. This procedure did not go very well after his first surgery, and he remembers it! Let's pray all goes well for him tomorrow. 2) The physical therapist is coming tomorrow and the attempt will be made to get him out of bed. ( I had actually thought that was happening today ... but the docs must have wised up and gave him an extra day!) Judi says the doctors and staff really have done everything to try and keep him comfy and happy. She also reports that he's doing a great job of moving himself around on the bed. He has a trapeze over the bed again, to help him in lifting himself and making those little adjustments and that works real well. He's anxious to come home, and that makes him a little more agreeable to some of the things the doctors have to do -- and that's a good thing! We're anxious for him to come home too! |
02/15/03
| | I talked to Judi this morning. Scott was sleeping. :) Sleep is just the best thing ... he's still fighting pain as his biggest issue. The incision and stitches really bother him and it's just so hard to get comfortable. But the docs and nurses are constantly coming up with new things to try to help! They've made him a "wedge" now to try to relieve some pressure. They really dO try their best. Scott had his dressing changed yesterday, and the NG tube, drain, and catheter removed. He still has the epidural, and both epinurals! They are his saving grace... The BIG news from yesterday was that he was successful in getting out of bed and into a chair!!! WOW!!! Waaaaaaaaaay to GO Scott!!! We were happy dancin' at our house when we heard this news! And we are sO very proud of you! We know how hard each of these steps are -- but they will each get easier with time. |
02/18/03
| | This is really yesterdays update... but my FTP wasn't working... sorry. Scott is coming along. He is up and sitting in a chair a couple of times each day now. It's not an easy feat... but he does it! I talked to him for just a minute yesterday... he sounded quite the pitiful pooh, really not up to much of anything yet. This is going to take some time. His brothers visited with him on Saturday - and Judi says "They didn't even kill each other!" -- that's GREAT! I love when "family togetherness" works! It's so rare... huh? Scott has been running a slight fever - they've had him on antibiotics as a precaution, but don't expect that it's anything to worry about. She thought they might be working with crutches today... and anticipates he may come HOME by the end of the week! He would then stay at home until the stitches come out, and then return to the hospital for the first round of chemo. The first round will be five days in hospital - to keep an eye on how he responds.
Scott has had some more intersting mail. Earlier this week he received from Pierce Brosnan, a nice autographed book "Behind the Scenes of James Bond 007" and a "007" T-shirt. Annnnnd Bruce Willis sent Scott one autographed still, and 6 other stills from various movies that he's been in, 2 posters, a Super Bowl football, and a baseball and cap from his band! Man! I never get stuff like that in MY mailbox!!! But I think it's great that Scott does! And speaking of mailboxes...
Scott now has a P.O. Box for anyone who would like to send him anything! It's a great treat for him to go down to the post office and see what came in his own private mailbox! So, if you want to send a card or letter, or something fun, here's the addy... Just send to:
Scott
PO Box 906
Huntingtown, MD 20639
And I guess I can launch this... He actually IS collecting something that is cheap and easy to mail! His friend Jan Johnson is getting this set up with the Guiness Book of Records - and Scott's going to try to get IN to the book. What he's collecting is pins, buttons, and patches. (what could be easier?) Jan has gotten him two sweatshirts to put them on, and he can hang those on the wall, or WEAR them! We don't know yet how many he's going to need to meet the Guiness standards - I don't believe there is a record for most of these at the moment... they are going to have to establish what would be a base line for acceptance. But he can certainly start the collecting of them NOW! Won't this be fun? Now... everybody off to hunt for a unique button, patch or pin!!! Go! :) (cripes... I wrote a book today...) |
02/18/03
Chapter II
| | I nearly (DID) forgot to tell you about Scott's special visitor he had! SSG. Chris Braman, a survivor of Sept. 11th, from the Pentagon! He came to see Scott and told him all about his experience on that fateful day. He saved 64 people from the building, and received the Purple Heart. SSG. Braman is a survivor and he wants Scott to be a survivor too! How GREAT it is that he took time out of his schedule to come share his story with Scotty. What a nice man... :) |
02/20/03
| | Well...looks like Scott won't be coming home as soon as we'd hoped. That little fever thing has turned out to be pneumonia. :( He could sure use some extra prayers to help him get through THIS now. Honestly, does this kid never get a break? He doesn't. But he DID get another goody in the mail! He got a really snazzy basketball nicely displayed in a plexiglass case, and mounted on a wooden base, with a brass plaque! The ball was signed by Jared Jeffries and Juan Dixon of the Washington Wizards! Cool huh? There was some other goodies in the box too -- some basketball cards, and some little bobblehead guys -- also of Jared and Juan! Thanks go out to Ed Rosenberg for arranging this special treat for Scott. |
02/23/03
| | Scott still battles with the pneumonia... they changed his antibiotic on Friday evening and yesterday the fever did respond somewhat. We hope that the response gets even better! If not, they will have to do some scans to see if there is infection elsewhere in his body... Scott's a trooper though! As always! Even though he has pneumonia, feels horrible, and runs a fever, he has still managed to progress with his physical therapy!!! He's been up and has actually walked around his room using the walker. The room is not huge -- but this is still a MAJOR accomplishment - especially given how yucky he feels! Way to GO Scotty!!! Boy, we can't wait for you to come home!!! |
02/26/03
| | Everyday, I know you come and check to see if he's getting better. I know because everyday I come too! And the answer is yes and no. He is recovering greatly from the the surgery. He gets up twice a day, does his walk with the walker, uses the spirometer regularly (which I am assuming is that contraption that you inhale from or blow into - to help breathing - for the pneumonia?) He's cooperative about trying it all, and is moving right along. He's even had the epinurals removed -- AND the stitches have been removed too! But still our little buddy has a fever, and feels RAUNCHY to use Judi's word! She says mostly body aches from the fever, but that he does still have some pain from the operation too. In addition, his days and nights have become mixed up, so they are working on getting that turned around again. Judi says the number of doctors and therapists that come by to visit him each day -- 8 different teams she listed to me - and some visit twice a day... it's just unbelievable. Seems like every department has something to do with Scotts treatment at this time. (I don't know how he gets ANY sleep!) But all he does is sleep and cope. Judi asked me to pass this on to you too: ( a quote from her email)
Please express to everyone that we constantly feel the support of our family , friends and community daily! We know that we are not alone and that we are very fortunate to have so many people support our family as we work our way through this crisis. The strength of the community in which we live, Calvert County, is tremendous! We are so lucky to live amongst such compassionate and kind people--- many we know and many we do not. There are many caring and dear people who do not live nearby and many people who do not know us, but EVERYONE feels our pain - and can empathhize with a family adjusting to the hand it was dealt. Scott will overcome this ordeal by feeling the strength and love of his family, friends, neighbors, community, family friends around the world and all of the contacts of our friends who are praying and thinking of ooooour son and family at this time. It would be awesome to track the number of churches where Scott's name would be found on the prayer list! The power of God, and the internet, is amazing. Please continue to send us all the power all of you can muster- as we drain out at the end of the day we gather strength for the next day by thinking of how fortunate we really are to have you standing next to us to catch us as we fall - and we do fall often, but the love of family and committment to each other keeps us getting ourselves back up - until the job is done. Truly, is there any other way?
Anything we can do to help! I know I feel like I do so little, but I'm glad that what I can do DOES help! I bet you all feel that way too. The one thing, and the MOST important thing any of us can do, is to continue to pray for Scott, each and every day. |