History

Wednesday, March 26, 2008 12:54 AM CDT

hello to all....well, another decision has been made....we are not going to do radiation...between the docs and us we believe that it will not do anthing but make his counts drop and make him feel horrible...plus the doc said that with the tumors that justin has it pretty much would not do anything for it as far as shrinking, just would make justin's counts drop and right now that is not what we want for him...i just want justin to not be in any pain and to be happy with what days he has left....so the hospital here is helping us set up for hospice to be at the house so we will have one less thing to worry about...had to lie again to justin today...man i hate this...he was mad at going home because he said that he did not want to let the tumors grow without any treatment, so i told him that we are doing everything at home and that is why the nurse will be coming....dont think he believes me but i still dont want him to worry...they are upping the fluids from 80 to 100 so that the blood stops in his nephrostomy, because every time we are here his tube is clear and when we go back on the pack it goes back to blood red....hopefully that will help because all night last night when i was flushing the tube he wouldnt even look at it...poor guy, he worrys more than all of us i believe...pain management guy just came by and instead of putting justin on a pump for iv dilaudid he recomends a dissolvable pill that will work faster and he will not have to deal with the extra pump...so justin agreed to try it.....this is so hard.....i wouldnt wish this on anyone...i dont want to loose my boy...but it seems i have no way to prevent it....my heart is aching....so hard to even get up and take a shower...take a shower, then cry...blow dry my hair, and cry...just keep breathing is what i tell myself....please Lord make my heart stop hurting...was all this for nothing?? did i push him to hard??? i have all horrible crap running through my head right now...this morning around 300 am me and justin were talking, he said he had a wonderful dream, he said he dreamed he was in space looking down at the clouds and it was so peaceful momma....maybe God is comforting him....oh my aching heart.....right now od is trying to get us a flight home for tomorrow...so far we haven't had any luck...all i know is that we need to get home and fast...for something keeps telling me, get justin home now...so we are waiting to get the okay from the hospital that they have everything arranged for home and get justin his meds and his fluids and i guess we then say our final goodbye to sloan kettering...please keep us in your prayers....for i believe the next week will be our hardest of all weeks ........

Tuesday, March 25, 2008 6:23 PM CDT

well our decision has been made for us...justin will be getting radiation once a day for the next 2 weeks or less to see if it will help with his pain..then we are going home...no more pokes, no more sticks....just hopefully no pain for justin and happiness....i just want him to not be in anymore pain...the doc said that if justin's bilirubin was to come down then we could do intense chemo but it would just be delaying the inevitable.....the tumor is pushing on justin's liver and his right kidney making his drain from his nephrostomy quite red with blood...i just want him to not hurt anymore...DAMN CANCER......U SUCK....right now justin is not in pain and is eating KFC....he looks so good to me that it is hard to type what i am typing......maybe he knows what we have just come to relize...that his little body cannot handle anymore...i only have told him that he is going to get radiation because he has a tumor causing him pain and that we will be going home for a month break, no need to make him worry anymore than what he is worrying....i hate lying to him..but what mother can tell their child that we are going home to wait for God to take him to be an angel???? AHHHHHHHHHHHHHHHHHHHHHH!!! I HATE THIS......the only thing i know for sure is that God has guided our decision for him to live what days he has left as a happy and pain free little boy......and man is it hard to talk with God now of days....justin and od just took off to go to the grocery store, i cannot believe he actually wanted to go out somewhere....through all of the crap he is going through and he is still hanging in there like a little trooper...cannot believe this is happening to us...to him...please keep your prayers heading our way, cause mine just seem not to help anymore......until tomorrow...we will just keep breathing and enjoying our little boy each day we have him with us.....nite to all......

Monday, March 24, 2008 7:29 PM CDT

cancer sux.....through all that justin has went through in the past 4 years since being diagnosed now is the time that we have to throw in the towel....justin was sent home all weekend with fluids to help him stay hydrated...i had been noticing that he was very yellow and his eyes also were yellow, and any cancer mother knows that this is not good...well, we went in today and as soon as we arrived they told us that we were scheduled for a ct scan...what?? well, justin did the ct but had to have od and nurse judy come to his rescue with pain meds before we left the ct room....i also noticed his scar on his stomach was splotchy and u could tell were every vein was from his port to his nephrostomy...so i freaked out...like any parent....well, they called me and od back to talk to dr kushner ,which again all parents know that when they only call us back and not the kid the news is NEVER GOOD...and i hate to write this, but i think justin's fight with the beast is to end sooner than what we want....dr. kushner told us that just within 5 days justin now has more disease and not only is there more disease, a tumor is now blocking his liver....so i write this to everyone tonight crying my eyes out and praying for a miracle.....please take a moment of your time and kneel down and pray for justin tonight....for we all will need every prayer from everyone to get us through this....so an emergency hearing was scheduled tonight for all the docs i guess to discuss what option, if any we have....they will tell us tomorrow...the ct scan showed fluid on one of justin's lungs and fluid in his little belly....DAMN IT TO HELL......DAMN U CANCER FOR TAKING MY SON....DAMN U FOR MAKING ME LIE AND TELL HIM EVERYTHING IS OKAY, EVEN THOUGH HE KNOWS MOMMA IS LYING....DAMN U CANCER......just within 5 days all this shit has happend to him....poor kid just wants to be a kid and have fun and all he can do right now is lay in bed in pain......DAMN U CANCER......please pray for a miracle for justin......pray that they can atleast do radiation to shrink it so that his bilirubin will come down .....pray for him to not be in pain......until tomorrow...CANCER FREAKIN SUCKS....

Wednesday, March 19, 2008 10:35 PM CDT

good evening everyone....well, it has been another long day at the hospital...so far justin is still having alot of pain in his back from what we now know is from a kidney infection...atleast that is all we know for now...he had a renal scan done today to check the flow of the kidneys and to also ruled out any obstruction...was told today that we would not be doing the hot antibody therapy and then was told to continue with the medication and we are to talk with dr modak tomorrow, so i dunno what we will be hearing now...just know that i am so damn worried...they have now raised the pain medicine for justin to try to get him comfortable...scares me to death when they say that...makes me think we have no other options...but i have to stay positive....no matter how hard it might be on days like this...on an upbeat note, i just found out today that od and brandon are flying up tomorrow!!! finally, God has heard my cry for help....will be so nice to have someone else here to help me...i can only pray that this will help justin come out from the depression he is dealing with...thank you so much for everyone who has helped us bring our family together for easter....justin received his easter basket from the "easter bunny/aunt becki" today...he was so happy to know that the easter bunny didnt forget about him even though he was up here...thank you becki and david......sometimes it is the small things that work for him...after opening his goodie box he actually ate a little bit of mac and cheese that i went and got for him....so tomorrow pray that we are still on for the hot antibody therapy and pray for od and brandon a safe trip up here....again, thank you all for everything...dont know how i will ever repay ya......till tomorrow....nite....

Monday, March 17, 2008 11:07 PM CDT

dont know how to start here .......hmmmm....haven't been updating because i haven't had alot of good stuff to say, so i just didn't update...but am here now so here it goes...justin has not been doing well...it has been over a month since any chemo or any treatment and he is not EATING ANYTHING!!!!.......i dont know what is harder, him not eating or me fighting with him to eat...if he is 50 pounds he is pushing it....i am so mentally drained from these past 2 weeks...i dunno why he is doing this...i have drained my account buying anything and everything i can think of for him (or any child) to eat.....i am so aggravated.....i dont know what to do anymore....if i force him to eat something he automatically throws it up....AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!! damn it........i need help.....he has kept me up now for the past 4 nights because now he is having pain in his side where the nephrostomy is......i think because of the muscle tensing up....at least that is what he says...i dunno what to believe anymore, first it is his head, then his leg, now it is his back......is it all in his head or is he really hurting???????........i cant stand to see him loose all the weight he put on at home when he is not going through any treatment right now....damn it is killing me........we have fought so hard not to have a feeding tube in him, he has fought so hard.....why is he doing this to himself???...tomorrow we go to clinic, where i let them decide what our next step in this bs drama is...maybe i am just tired of fighting with him, but i cannot let him not eat and keep getting skinner and skinner.....he has been begging me for his dad and brother to come up but right now we just cannot afford it.....maybe that is the demon behind all this crap...so tomorrow, no matter how many tears, i will have to decide what our next step is on justin's nutrition factor....i really hate being the doctor/mom/nurse/shrink/bad person....i do believe that the parents of the children going through all this shit feels like this....it is like being in a 2 foot pool with the weight of the world all on your shoulders bearing down, and with each piece of news or episode that u have to deal with the weight gets heavier and heavier, as hard as u try to keep from drowning in the small 2 foot pool, the weight keeps bearing down upon your back, until u get to where u are just barely able to breath and the water is up to your chin..yet still, you push to hold the weight up just to have that one last breath.....i pray and cry every night that justin along with all these kids gets the break that they deserve.....dont know if they will ever get it......please keep us in your prayers...pray that justin can pull himself out of whatever it is that is tormenting him and that i can have the patience to hang with him to he does......maybe i need to call in backup....some help up here would be nice.....sorry for all the doom and gloom, just having a hard time up here right now.....

Wednesday, March 12, 2008 11:04 PM CDT

hello everyone...well, we talked with dr. modak today...he pretty much told us that the scans were mixed results...what??!!! well when i asked what that meant the doc said that some of the spots had decreased and other spots had grown...ahhhhhhhh!!!! which pretty much means that chemo is not working with justin anymore....but we have a plan...which is all a parent needs to pull them out of the hole of doom....so justin started on a drug to make his thyroid go to "sleep" so that we can start the hot antibody therapy not next week but the following week...he has to be on the thyroid medicine for atleast 10 days before he can start the therapy...but the really good news is that ever since we spoke with the doctor today justin seems to have pulled out of the cloud of not eating...it is like he is back to his old self...thank God.......i believe all the drama from him was from him worrying that the scans were going to be worst than what we heard today...thank you all for all your prayers....he is still not 100% but i am working to get him back that way....more good news..his counts are excellent....he keeps begging me for his dad and brandon to come up for easter... i dunno maybe God will work another miracle for him so that we all can be together again....right now we are pinching and saving all we can just to get by...ny is so damn expensive...there should be a law against the mark ups they have here...lol....so it looks like we will have all of next week to just lay around and relax....or go crazy...i think the going crazy sounds better of an option..lol...well, guess i will log off for tonight..thank you all for reading my daily rant...and for the people of the house, putting up with me...lol...God has a special place for those of you have to deal with me...lol....update you guys later...

Tuesday, March 11, 2008 4:31 PM CDT

T-minus one day and counting....tomorrow is the day...the day we find out justin's results from all his scans from last week....i keep praying for good news...seems like it has been forever since we did the scans even though it was only last week...my nerves and justin's are pretty much shot...yesterday we tried to go get lunch at a restaurant across the street, but as soon as justin tried to eat he started to feel sick and had to run to the bathroom but didnt make it all the way...i think it is harder for him to wait and worry than it is for me...i bet he has dropped back down to 60 pounds since we have been up here...(he was almost up to 70 at home)...it has been over a month since his last chemo and his counts are fully recovered so the only other reason i can think of that he is not eating is stress...i dunno what to do with him sometimes...all the begging, pleading and threating doesnt seem to work...hopefully after tomorrow he will start to pick his eating back up like at home...please take a moment today to ask God to give justin good news tomorrow...believe me every prayer helps...today justin actually got out of the room for awhile and went to cain and dylans room for a little...he will not admit it but he really misses his brother...more this time than before i believe..i guess momma isnt "kewl" anymore...lol...but besides the worry and stress, all in all everything here is okay...justin is having less pain from the bone marrow sites every day, thank God....i keep trying to keep my spirits up but it is hard when so much is pushing against us...please Lord give my son a break, is what i say every minute it seems like...

Sunday, March 9, 2008 3:02 PM CDT

hello...well, all is good so far...justin is finally feeling better from his bone marrow sites....we have just been hanging out at the rmdh and getting some much needed rest......justin actually felt good enough today to go to our friends room today and play a little....right now he is back at the room with me listening to his ipod while taking a nap..thank goodness the weekend is almost over....man i have been worrying my butt off about the results of his tests and scans this past week....please send good thoughts and prayers our way so that we may get good news on wednesday...the nb team will have their meeting on tuesday and they said that they would call me on wednesday but i am going to save them the trouble by going to clinic to speak with them....that and i dont think i can stand to just sit and wait here for a call.....but all in all justin has been doing better...he is still having the bad migraines...i think it is brought on from the stress of everything...last night he asked me if his brother (brandon) could come up here soon...i told him i would have to see what our news was on wednesday before i could give him an answer...funny how they miss each other when they are apart but yet all they seem to do when they are together is bicker and fight.....well, going to get off of the computer for awhile...update you guys later......love, the nyc hillbillies.....

Thursday, March 6, 2008 12:41 AM CST

going to start off this entry with this, Damn what a day!!! well, they told us to be at the hospital around 7:30 this morning so that justin could have his bone marrow procedure done at 8:00...but like every parents knows, 8:00 soon turned into 10:30.....justin always gets really upset and nervous anytime he knows he is going to get the "white medicine" because he is afraid that he will not wake up from it..no matter how much i try to reassure him that every thing will be okay it still doesnt stop him from always telling me "bye momma" before he goes out...man it kills me every damn time....when justin came out of his procedure he was in alot of pain...more than normal...i think the doctor was a little rougher than usual...he had blood everywhere...that has never happened before...the only thing they would give him was tylenol...so i ran downstairs and got him a wheelchair so he could get the hell out of there and get back to the rmdh and atleast be a little comfortable....he is still in alot of pain....laying in bed now in a ball and every 10 seconds telling me "I'M HURTING!!"....i really hope he is not in this much pain tomorrow...we have a ct at 8:00 and hopefully he can get through it with no pain or drama...please keep us in your thoughts and prayers....pray for good news for justin....pray for all the other children here going through the same stuff justin is going through......update you guys later.....

Thursday, March 6, 2008 12:41 AM CST

Wednesday, March 5, 2008 10:13 AM CST

hello everyone...well, all i have to say for today is thank God we are done for today....justin usually does really well with the scans and has no problem but from the time i pulled him out of bed this morning until the end of the mibg scan he was full of spit and fire....first he didnt want to get up, then the back board that he had to lay on was just "killing" his back, so we stopped the scan....then his head hurt, so we had to stop the scan....then, he said he felt sick, so again we had to stop the scan....ahhhhhhhh!!!!!i finally told him that he just had to relax and suck it up because he had to have the scan done....so finally he settled down and we got back to the rmdh around 10:30.....now i am fighting again with my 10 yr old son (who thinks he is 30)for him to just eat something...i dunno what is wrong...every time we come up here he stops eating and starts with the drama....through all the crap these kids go through sometimes i believe it is the mental crap that gets them the worst at times....so on our schedule next for tomorrow is bone marrow biopsy early in the morning...he is already mad about having to get up early again....hopefully tomorrow will be better than today....for him and for me....please keep us in your prayers, pray for good results, pray for me to have patience with an honory child, pray that God will please give justin good news.....

Monday, March 3, 2008 8:46 PM CST

good evening all......well, we made it back to nyc around 500 this afternoon and went out to eat with kim and skyler who were at the house at this time also...nice to be able to just "be normal" and go out to eat with friends....so far justin is doing good and has left out of the room right now to look for drinks from the machine downstairs...lol...usually it is empty...but anyways, we go in tomorrow for justin's echo and his mibg injection...so far justin is in good spirits and is ready for his week of drama...he has just gotten back from his mission- finding drinks...only scored 2 apple juices...so funny to see him rant sometimes...just like his daddy...lol...well, i will update again later this week when we find more stuff out...please keep justin in your prayers this week, he needs all he can get at this time...please God hold my son in your arms and lift him up with good news this week......

Thursday, February 28, 2008 11:24 AM CST

hello to all....well, justin has been doing really good...so far we have had all week at home to goof off... so far his counts have been really good...besides his platlets hanging on at 40...so we are going to go today and do counts and make sure he is still okay before the weekend comes..is our last weekend home...aaahhhhh!!! cannot believe it is that time again...well, we fly back to nyc on march the 3rd....we are scheduled for the full work up the whole week....you know, mibg, ct,bone marrow,echo...all the pokes and sticks a child can handle...please keep justin in your prayers this coming week...please God give us some good news....my stomach flips and flops just to even think about waiting for the scans to come back...please God give my son a break...dunno how many times i have to say it for Him to hear me but i think i say it every 30 mins...lol....well, going to run and take justin for his cbc....keeping my fingers crossed and my prayers to God for just a little bit of good news....

Friday, February 22, 2008 3:46 PM CST

hello to everyone....well, my last update was us in the hospital...well, between me and the doctors the only reason we could possibly figure out why justin's kidney was bleeding so bad was because of all the blood and platlets he had receved the night before, sunday,.....it was like every time his blood pressure would go up then his line would turn red red....so we got the blood pressure down and the kidney stopped bleeding and we got out of the hospital tuesday....so far everything has been going well here at home...time goes by far to damn fast when you are at home!! seems like we just got back last week...well, we did justin's counts today and his platlets are 33 so we are now up here at brenners hospital waiting to get accessed and waiting for his platlets....brandon finally acomplished his "giving" me of whatever bug he was fighting on sunday....i was sick as a dog all day yesterday and half of today...i kept as far away from justin as i could...i really hope he doesnt catch this stomach bug like we did....but all in all everyone here is doing good, and we will hopefully make it through this weekend without any drama....update you guys later....

Monday, February 18, 2008 8:08 PM CST

good evening everyone...well, justin has been doing good...we had to come to our home hospital for blood and platlets yesterday...his hemog. was 7.6 and his platlets were only 12!! so we got blood and platlets and got back home around 900 last night...brandon has been fighting a stomach bug all yesterday and last night so i let the boys camp out in the living room so that they could keep an eye on each other...lol...well, last night went well and all was good until we got up this morning and i went to check on justin's nephrostomy bag....to my surprise it was blood red!! pretty much looked like he had pure blood in his line and in his bag..so of course, i freaked out and called the hospital to tell them that i was on my way because i was sure that his platlets were really low again...we got here at the hospital around 2 in the afternoon and they hooked justin up and went ahead and gave him platlets because they too thought that the low platlets was the whole problem.....well, he got platlets and we redid the cbc and to no avail, it is not because his counts are low at all...so needless to say we are staying the night here at the hospital....my call...i just didnt feel comfortable with going home and taking a chance just in case something is wrong...but his blood pressure is good and he is doing great besides that.....so my other half(o.d.) is now on his way to drop me off some clothes and to come and get brandon....i wish i would have thought to have packed a bag...sometimes i think us parents are constantly thinking and going and cant remember our own names...lol..well, let me get off of here for now, chat with you guys later......

Friday, February 15, 2008 1:11 PM CST

hello everyone...well, we got to fly home tuesday with corporate angels...justin is doing really good....had to come to our home hospital to check his vancomycin levels and to also do a cbc yesterday...all he needed was platlets...no blood....so here we are today again waiting for his room so he can get blood to boost his body up for the weekend....you would have thought that him and his brother had been seperated for a year because of the way they talked from the time we got off the plane till now...i think it helps justin to take a break away from nyc...hell, i know it helps me...lol.....but anyway, justin's wbc is still low so we are just going to hang out at the house and shoot fireworks this weekend...that is what he said he wanted to do so looks like i am going to have to make a trip to sc to restock...well, going to run for now...wishing everyone from ronald to home a great weekend....

Monday, February 11, 2008 2:20 PM

good afternoon everyone.....well, justin is doing good...his counts are now starting to fall so we are starting the G-shots today and are also going to get blood...GOOD NEWS!!! we are getting discharged today!!! woo hoo!!...going to be able to go back to the ronald tonight and our flight is scheduled for tuesday @5:00 pm....we have to go home with justin accessed so that i can give him his vancomycin at home, which he is okay with...i think he finally wants to get out of this place...i will give him vancomycin until the 17th then i can take his needle out and he will start on his bactrim just to make sure he is covered on the urinary tract infection.....but all in all our spirits are good....justin has even gained a pound....hopefully we will be home until the first week of march then it is back up to ny for a full work up(which is, bone marrow biopsy, mibg scan, ct scan, pet scan and anything else they chose to do) well, going to go for now...justin is fixing to get his pentam. treatment....bye for now....

Friday, February 8, 2008 5:56 pm

good evening everyone....well, last night justin spiked a fever again....so we are now here for the weekend...we had a ct of his abdomen and head done today to rule out any obstructions with his left kidney...no obstructions showing on the ct!!! woo hooo.....and they came and told us that the same bacteria that he has in his blood is also in his urine sample...hmmmmmm....could i have been right? lol......the removal of the old stent (which was not working because of infection) caused all of justin's trouble...so now he is only on vancomycin and hopefully he will be fever free tonight....so he got to get his last dose of chemo today...which kept us on our original schedule.....so far so good...right now he is drawing and glueing together a horse for me, waiting in anticipation for the friday night snack cart to arrive...lol...i know my last journal entry was really negative... but hell i guess everyone has their moments...and now i am back on track.....just suck it up christie....get over yourself and take a que from your kid....so no more negativity...well, we now have the room to ourselves...our good neighbors just got the news every parent and kid wants to hear...YOUR DISCHARGED!!! i am so happy for them..they we a nice couple....OH, almost forgot the best news of today...(i know this is a crazy thing to celebrate, but hey when you are here the small things are sometimes the most dramatic) JUSTIN FINALLY PEED FROM HIS PEE PEE!!! wooo hooo....that means his left kidney is still working...yes!!! well, going to run for now....please keep us in your prayers...love the new york hillbillies.....

Thursday, February 7, 2008 3:19 PM CST

crap crap crap......well, we got discharged today and went to outpatient for justin's chemo to continue...they just put the doses he missed into 2 remaining doses...went to out little room, got chemo, got checked out...everything looks good...even his counts are doing good....then the damn slap in the face comes again.....i was just informed that the blood culture drawn yesterday tested positive!!!!! damn damn damn............so here we go again...getting readmitted to the hospital this afternoon....ever since justin had the new stent placed tuesday he has not peed out of his pee pee....i dunno why, but they are damn sure going to find out....they did a temporary catheter up his penis last night thinking he just needed to be released manually so the muscles would start working again...but to no avail, there was no pee...i dunno what the hell is going on...i am not in a good place right now....am so aggravated i could cry my eyes out....i pretty much told them that if they put us back into the room with our last horrible neighbor i would protest...what a horrible 19 yr old that guy is.....i feel for the nurses and his parents because of how he treats them all....but anyway, life sux....like i said, not in a very happy place right now....but on the other hand, justin is in good spirits...no fever, thank GOD.....so they started him on iv antibiotics and i guess he will continue with them for the next 2 days.....maybe i can get them to do an xray to make sure that the stent is not blocking his pee from getting out...i dunno...my head hurts...i think they need to put in a padded room with a stuffed dummy here...that would help alot of parents with all the anger and frustration they feel at times...GOD knows i cant be the only one feeling like this.......

Wednesday, February 6, 2008 11:26 am

update.......justin was doing good until we went in for his procedure yesterday.....we got to the hospital at 730 am and sat and waited until 1100 before we got platlets and did not go down for the procedure until around 1:00 in the afternoon....when we got down there they informed me that not only were they going to change his line but they were also going to remove the previous stent and replace it with a longer and bigger one...so that they maybe could eventually take the nephrostomy off completly......which to me and justin sounded like great news...well, the procedure only took around and hour and he had no pain or swelling and we had to hang out in recovery for 2 hours and then back to outpatient on the 9th floor for the other 2 hours before they would let us go.....left the hospital at 6:30 (still no food in either of us all day) got to the ronald mcdonald house at 6:45, justin spikes a fever of 101.8 at 7:00, rush back to urgent care by 7:30...by the time i got to urgent care he was 103.2!!!!! damn what is going on i am screaming in my head.....between the fever and the constant pain he was having in his bladder and the uncontrollable shakes i was scared of what they would tell me next.....well, justin's counts were good, thank GOD...but he has a urinary tract infection from them removing the old stent...so antibiotics for now and we will find out when the docs come by if we have to spend another night in the hospital and if we will be able to continue with our chemo this week....well, here comes the docs....update you guys later...oh yeah, me and justin both agree....sharing rooms suck....

Tuesday, February 5, 2008 9:55 AM

good morning everyone...well, justin is doing good....his counts were good monday so we got to start his 2nd dose of cytoxan and topotecan this week...we get today off from chemo because justin is having his catheter changed on his nephrostomy...they say it is not as bad as putting it in so we will see...he will be under sedation so he has not ate or drank anything since 1200 last night...and man are my ears hurting from him reminding me...lol..they are going to give him platlets before we go down for the procedure....hopefully he will not have any reaction ...i didn't sleep hardly at all last night...crazy how the mind races the night before a procedure on your kid....i bet i checked on him 20 damn times last night...i am trying to not show him that i am worried about the chemo or his counts or the catheter change, etc......, if he sees mom worried then he then starts to worry...so, i have just told him that it is not a big deal and at least he will be able to get a good nap out of all of it...trying to joke and laugh as much as possible with him...kinda takes some of the crappy-ness away.....so, we will double up on chemo tomorrow because of missing this one today and be done by friday...dunno if we will fly home this time...i think i will wait through the weekend and see how his counts are on the following monday and then decide...i just hate to have to go home and be in a constant run back and forth to the hospital with him...even though he says it is worth it...i am going to see if we can maybe get blood and platlets at another hospital closer to the house if that is at all possible...that would make it easier on all of us when we are home...well, continue to keep justin in your prayers along with all the other children fighting this horrible damn disease.......love , the new york hillbillies......lol

Tuesday, January 29, 2008 10:48 am

Good morning everyone....well, we are back in new york....we flew back up here on the 27th and came to clinic for justin's cbc monday...which, like i told them, he is not recovered from the last chemo enough to do another round....hmmmmm...wonder how many times i have to be right before they start to listen to me...justin could have had another week at home if they would have listened to the crazy momma...lol...oh well, so now we are back at the clinic for blood and platlets....hopefully he will not have a reaction....so looks like we get blood and platlets today and then kinda just hang out for the rest of this week and do counts to see how he does...then do the topotecan and cytoxan next week....hopefully....just as our luck would go the day that we flew out for new york i sprung my ankle..so now justin is in the wheelchair with his "gimp leg momma" (that is his new name for me now) pushing and limping behind him back and forth from the hospital....damn what luck i have.....but besides the delay on chemo and me with my old broke ankle everything seems to be going okay....we are still keeping our spirits and our hopes high.....bye to everyone for now....ta ta from the new york hillbillies....lol.....

Tuesday, January 22, 2008 1:46 PM CST

hello to everyone...well, justin was doing good before this past sunday night...counts and everything were good on friday then by sunday night, of course, he looked bad...i packed me and brandon and justin a bag and headed for the local hospital here...just as i thought, his hemoglobin was 6.1 and his platlets were only 15!!!! no wonder he felt bad...well, we spent the night in the hospital and he got blood and platlets and we went home yesterday with him back to playing as normal...today we are back at the hospital getting platlets again..this time they made sure that the platlets are the same as his blood type and that they "washed" them before he gets them, hopefully preventing the reactions that he has been having to blood products...so, so far so good...we are going to fly back to new york sometime this coming weekend...going to do another round of the topotecan and cytoxan...then hopefully we will have more than just 9 days home.....i wonder if i am the only parent that has the "odd" feeling when they talked to their old doctors...maybe it is disbelief that justin is still here....still fighting...still doing so good....still not giving up like they told him too........well, going to get off of the comp for awhile, please keep justin in your prayers....

Wednesday, January 9, 2008 9:22 PM CST

hello everyone....hope your new year is going better than ours....well, we flew back up to new york january 3rd because we had ct scan on the 4th and our mibg scan on the 4th...well, we talked with the doctor today......justin's scan did not look good....right now they are showing new disease along with the recurrent disease that he had from back in december...ahhhhhhhh.......man, sometimes i think he never gets a break...from what i have read from his reports it looks like we are looking at the lymph nodes from his chest area all the way to his abdomen area...which explains why he has been having the back pain.. it also showed disease in his back on both sides of his little spine....ahhhhhhhhhhh.....come on scream with me .....justin insisted on being in the room today when the doctor told us the gloomy news...he took it better than any grown up every could have...i pretty much asked justin what he wanted to do....and without blinking or any sign of doubt, he told me, "mom, if chemo is the only option that i have right now, lets just get it over with because i just dont want to go home and die"....oh my, that is when i lost it....so brave are these children...i just do not know where they get it from....so needless to say we started chemo again today...but he is doing great...did chemo, came back to the house and he played with the kids here until 10:00.....i am so proud of him...so it looks like we will be doing chemo until sunday and then do counts on monday to see where we are and then try to get a flight back home....hopefully we will have a good 3 weeks home.....please keep justin in your prayers...pray that his little body responds to the chemo and kills the cancer....pray for God to heal my son....

Friday, December 21, 2007 4:58pm

hello everyone and MERRY CHRISTMAS!!!!we are home finally.....been home now for a week and justin is doing good....his counts have been good until today...hemoglobin is 6.7.....so we are up at brenners childrens hospital waiting for our blood to arrive....but besides that everything has been going great.....i still have not did alot of christmas shopping...sometimes it is just hard to leave the house for anything...guess it is because we have been away for so long... oh man, the puppies are adorable...anyone want a puppy?????would make a great christmas present...he he he he.....so hopefully justin will get blood sometime tonight and it will boost him until wednesday of next week....more good news, at least for us....we do not have to be back at sloan until january 3rd!!! wooo hoooo!!!! we have scans coming up on the 4th and 5th...i guess we will find out what our next plan of action is then....well, going to run for now...thank you all for everything that u have done for me and my family this christmas....bye for now...

Monday, December 10, 2007 6:45 PM

good evening everyone.....well, we went to clinic today for justin's counts...we are at 3.0 on our wbc and justin's hemoglobin is 9.6!!!!! his absolute count is up too!!! 2.4 ......wooo hooooo, here we go baby...justin did get platlets today they were only 17...which is okay...they finally gave him a prescription for his migraines and he is doing much better...so we have tomorrow off from the hospital and go back wednesday morning to make sure he is still okay before we fly out to COME HOME!!!!! i am so happy....looks like we will be home from the 12th to the 28th.....at least it is something...so i am so happy that we will be home for christmas...we will find out wednesday what our next plan of action is for justin...maybe more chemo, maybe the mibg therapy, maybe surgery.....i dunno, not going to worry him or myself about it now...just want the boys to have a great christmas...well, going to run for now...see you guys soon!!!

Sunday, December 9, 2007 11:20 PM

good evening everyone, well, today was one of the best days so far....justin has only had 3 headaches today....we have been hanging out at the rmdh just watching tv, eating and catching up on some much needed sleep...lol...justin is still eating like a horse...thank God....we go back to the clinic tomorrow to find out how justins counts are..hopefully he will not need anything...at least that is what i am praying for...still hoping that we get to come home wednesday...wish it wasnt so close to christmas...i am going to have to do some major fast shopping to get everything done....i guess if it is not one thing stressing you it is another..lol...well, going to go off of here for now.. i will keep you guys updated day to day...pray for good news tomorrow....love and miss you guys....bye and good nite...

Saturday, December 8, 2007 3:29 PM

hello everyone....WE ARE OUT OF THE HOSPITAL!!! justin wbc is now 0.8 and climbing everyday...our anc is 0.6.....woo hooo.....so we are all now back at the ronald mcdonald house just hanging out and enjoying not being at the hospital....one more day closer to coming home i hope...we have tomorrow off so i believe we all are going to sleep in till we cant sleep any more...lol....we go back to clinic on monday to check justin's counts and make sure he is still doing good....hopefully we will be cleared to leave tuesday and HOPEFULLY, flying home wednesday night from teterboro to charlotte......we already have our flight for wednesday all we are waiting for now is an ok from the docs.....well, going to go for now... santa claus is coming to the ronald mcdonald house tonight...cant miss him.....bye for now guys, keep the prayers a coming..

Friday, December 7, 2007 12:32 AM CST

FINALLY!!!!!! GOOD NEWS!!!! justin is coming up on his wbc...we are now at 0.4....is not alot but it is coming up without help from his stem cells....od went over today to sign the paper for release of his stem cells from duke hospital....just in case we need them in the future...hopefully they are going to let us get out of the hospital tomorrow!!! well, we are going back to the ronald mcdonald house but at least we will all be together in one place...justin needs a break away also....so looks like we will have the weekend off and go back to clinic on monday to check counts then hopefully flying home tuesday or wednesday!!! i cannot wait, hard to believe that it has been a little over 2 months since me and justin have been home....dr modak had mentioned something about our next step in treatment, something about a mibg therapy... i dunno, we haven't really discussed it in detail....i just want to get home and have a good christmas for the boys...well going to run for now...justin and brandon are playing the playstation 2...so nice that they are together, even though all they do sometimes is fight..lol..well, i will keep you guys updated daily so good bye for now from the new york hillbilly's....lol

Thursday, December 6, 2007 2:08 PM CST

hello to everyone....well we finally got good news!!! it is not alot but heck, i will take any good news at this point...justin's counts are coming up...not by much, but they are coming up..we went from 0.1 to 0.2 today!!!! GROW CELLS GROW!!! he is off of the tpn and lipids and is still eating great, he is now 64 and 1/2 pounds...got to add the 1/2 justin said...lol...hopefully we will continue to go in this right direction...last night justin did great, he has not had one headache since 12:00 am last night...woo hoo....hopefully the kid beside us will not stay up till 7 in the morning again watching cartoons...ahhhhhhhhhhhhhhh....think i am going to let od take the hospital shift tonight....they now have justin on tylenol 3 every 4 hours for the headaches and it seems to be doing good...had to make him some of aunt jills sausage squares the other day and he has been munching on them almost everyday....okay you guys... guess i will get off of here for now...love and miss you all...

Wednesday, December 5, 2007 9:50 PM CST

well hello everyone........here we go again...figured i would update justin's site since we are not at home again...so far so good today...justin is still recovering from his intense chemo ...the "ice"...we have been at 0.1 on our white blood count for 3 weeks now...argggggg...it is so aggravating....grow cells grow....finally got the doc up here to make the ball start rolling on doing the stem cell rescue for justin so we can at least be home for christmas.....so far we have switched rooms 5 times now...now we are back in the 1st one we started out with ...lol...just in case you haven't been keeping up with justin's progress here you go ...a brief run down...we came up before halloween to do the 3f8 antibody treatment for 2 weeks..on the 2nd week of treatment justin's ct scan came back and showed a tumor blocking his ureter tube from his right good kidney which put him in renal failure..so we were admitted and he had a stint put in the next day...the stint worked wonderfully, until we started the "ice" chemo...by the 4th day of the 5 day treatment, justin started to run a fever and that is when all the fun began..lol...kidney was again not working properly so we had to go in and have a nephrostomy placed...well, to make a long story short, he is doing great now, he is off of the tpn and lipids, gained weight back to 64 pounds, and is eating great...we are now just on a waiting game for counts....oh, we had a ct of jusin done this morning...so far no new disease...the doc said he would have to look and see if any of the spots have shrunk......he has also been having really bad headaches out of nowhere..ct on his head looked fine, and we did a mri this afternoon to rule out a few more things..hope it is not anymore bad news..little guy has been through enough.........please keep him in your prayers

Thursday, January 20, 2005 6:54 AM CST

HELLOOOOO EVERYONE.... I know, I know... it has been awhile since I have updated Justin's web page, but I am back now...back to torture you guys that read this with some more of our life....lol..well, we got to spend Christmas at home and it was so great.. the boys had a wonderful Christmas...they had so many people help out and donate gifts for the boys, or should i say that Santa gave the boys a wonderful Christmas...Thank you to everyone that has helped us this year...I don't know how we could have made it this far without everyone's love and support...or should i say last year....Happy New Year!... hey i know i am kinda late on saying it...better late than never, i always say...lol...well, i know you are wondering about justin, well, he is doing GREAT!!! we went to Babtist to have our DAY 100 after transplant test last week....i got the results back yesterday...........EVERY THING WAS NEGATIVE!!!..can you believe it??? i do not think i could have asked for anything better....i am so happy for him....i am going to put some new pictures of justin on here when i get them developed...you will not believe how he looks... he now has brown hair, brown eyelashes, and brown eye brows...and he is up to 63 pounds!! Oh yeah and i also was informed yesterday afternoon from justin's "make a wish" representative that we are going to the BAHAMAS!!!!...everything seems to be going right now...i hope it stays like this for awhile...i think we all need it..well, going to go for now...and please pray for justin's aunt Pat she is in ICU in florida....thank you guys ........love, the not as crazy as i was in the unit-yet still too crazy for most, christie

Monday, November 29, 2004 9:08 PM CST

hello to everyone.....sorry that it has been so long since i have been back on here to update everyone, we have been really busy...jstin is doing great.....even though one of his test came back positive and we are now on another antibiotic, he is now up to 57 pounds!!!!! thank the Lord!!! we are still at durham at our apartment and are still doing the everyday radiation therapy......which is going pretty good.....we were scheduled for justin to get his central line and his port out december 13 but it looks as though we again will have to delay it....oh well, as long as he is healthy right now i do not care....i am praying that we are home for christmas....we tried to go home for thanksgiving but as our luck would go we had to come home friday instead of staying the full weekend....but i am glad that most of the family got to see justin....so it was not a total loss.....i am now back to giving justin his GCSF or neupogen, so that his blood counts will stay where they need to be....anyway, just figured i would say hello to everyone and give you guys an update on justin...sorry it took me so dag-gum long to do it, i have just been really busy with him and the hospital......i beieve that the air that they have in the hospital is designed to drain all your energy.....lol.....well going to go for tonight.....love you guys....bye

Monday, November 8, 2004 9:33 AM CST

HELLLLOOOOO EVERYONE!!! sorry it has been so long since i have updated justin's web page, O.D. brought my computer up here this past weekend so i am now back in business....lol...we are now on day 38 after transplant, and justin is doing great...he got off of his TPN and LIPIDS a.k.a liquid diet, november the 4th...he is mantaining his weight and we are going this wed. to start with his scans so we can go ahead and get his radiation out of the way too...which will probably put us home around the 2nd week of December, but hey at least we will be home or Christmas!!!!! that way when we leave here all will be done and we will just have to go to babtist for check-ups.. i am so thankful to everyone who has helped us...from family to friends to people we have never even met...it blows me away how much support they have given us...thank you all, i do not think i could have made it this far without all the help and words of encouragement....well, i have got to get justin ready to go to the hospital for school today, so i will go for now...love you all, and again...thank you....

Wednesday, October 20, 2004 9:31 AM CDT

hello guys!!!..well, today is our BIG DAY!! we are getting all packed up and ready to leave out of here...little bock bock boy brandon is sitting here beside me, and i do not believe he has stopped talking since he got here...ha hahaha..well, justin is now up to a 7.4 on his white blood count and he still is having a little sickness, but we are doing good and ready to get out of this place...wooo hooo....well, it might be a few days before i can update everyone again, but i will be updating still for everyone...have to get me a lap top i guess...lol...well, going to go for now...love you guys and wish us luck!!!...later...

Tuesday, October 19, 2004 10:40 AM CDT

hello everyone....hope you guys day is going as well as ours is...well, justin is now at 6.4 on his white blood count....am so happy...looks like tomorrow is the BIG DAY!!!!! wooooh-hooo..........am so happy...well, justin is doing great, his little mouth is healing great too...his tongue is still sore from all the blisters and i cannot get him to eat to much stuff...he says that everything tastes like cardboard...poor little punk....well, not much to report on today...going to go talk with justin's teacher...i will keep everyone up to date on our progress...love you guys...later....

Monday, October 18, 2004 12:55 AM CDT

hey guys!! well we are now at 5.4 on our white blood count and our ANC is 5,040!!!! today is the first day that justin is actually here beside me and has looked at what everyone has wrote to him on here...they say that we should be getting discharged this thursday hopefully...i am so excited...the I.V. team guy came by this morning and showed me how to get justin's pumps and lines run...i will have 3 pumps for justin and he will have a little pack to carry one of the pumps {the heparin pump}around with him because he will be on a continuous heparin drip...they are cutting back on the 24 hour TPN {liquid food} today to 18 hours....then tomorrow he will go down to 12 hours....i actually got justin to eat a cup of chicken noodle soup today.....he is doing so much better...well, i am going to get off of here for now, me and justin just got our 2 hour pass, so we are going to go walk around the hospital...love you all....later.

Sunday, October 17, 2004 10:09 AM CDT

hey guys...just figured i would update everyone on what is going on here today...well, we woke up today to a 2.0 on justin's white blood count and his ANC is 1502!!! looks like this is our 3rd day of him being over 500...i wonder if we are going to get out of here by tuesday....man i sure hope so...well, i got the doctors and nurses to take justin completely off of his continuous pain medicine, he only has the button now...he is doing really well....they even told us that we can get a 2 hour pass to get out of here today.....but we cannot be around people or in crowded places........hmmmmmmm.......that pretty much covers everywhere...ha ahhahahaha...i think we will just let justin play outside where they have the little area in front of the childrens hospital....am kinda scared to let him go outside though, it is kinda cool here....still cannot believe we are almost out of the 5200 unit....WOOO-HOOOOO!!! well, going to go for now...love and miss you all....later......

Saturday, October 16, 2004 8:55 AM CDT

hello all....well we have awoke today for the best news so far....not only did justin's counts go up from yesterday but they have doubled!!! we are now at a 1.7 on his white blood count and his ANC is 1207!!!! i am so happy....i got them to cut back again on justin's pain medication so he will not be so dependent on it....his mouth is looking so much better....alot of the swelling in his little cheeks have went down and his tongue is starting to look alot better....i think i actually got a good nights rest last night, because i am up and ready to go today.....or maybe it's the wonderful news that has me all hyped up.....Cheryl had found this soft pillow for me and had brought it up yesterday {this is the pillow i have been looking everywhere for!}, well wouldn't you know it....the little punk confiscated my dag-gum pillow!! i tried to get it back while he was asleep but he just woke up and gave me a "get away from my soft pillow or i will stick ya" look......he is such a little punk...ha ha haha...he said that it was red and that it matched his spiderman better than it matched me....lol....or in his words, "momma your favorite color is blue anyway, and red matches my spiderman blanket so, mamaw must have bought it for me".....oh you just wait till he gets better....ha haha...i am keeping a notebook to remind me of what he has done so i can get his little punk self when he is better...going to be the national tickle justin-a-thon!!!! i am suppose to talk with the people today from the I.V. homecare and they are going to show me how to use the machine that we will be sent home with....oh boy...well, it cannot be that hard, because i already have these huge machines in here figured out.....paging nurse hoochie....anyone seen nurse hoochie?.....ha ha ha ...well going to go for now, cheryl, brandi and o.d. should be over in a little bit....love you all........later

P.S. I PUT A NEW PICTURE IN JUSTIN'S PHOTO ALBUM

Friday, October 15, 2004 3:52 PM CDT

hello guys...just another day at the human aquarium!! ha ha ha ha....well we have more wonderful news today...justin is now up to .7 on his WBC and he is now 511 on his ANC!!!the ANC, or in lamans terms, is pretty much the make up of the white blood count...when justin is 500 or higher for 3 consecutive days then they start to talk about discharging him....am so excited....i just got through talking with the home-care I.V. guy about what i will have to do when we leave here, so we must be pretty close!!! justin's belly-rubin{again i cannot spell} is normal today which i am grateful for...his mouth is looking better also...his little cheeks have went down alot just from yesterday.....it is true, you know, what they say, every day gets a little easier and a little better...i had them decrease justin's pain medicine today because all he was doing all day and night was sleeping...he seems to still be doing okay with the setting they have him on now...which is good, the sooner we can wing him off of the pain medicine will also be a factor in when we get to leave here...Cheryl, Brandi and O.D. are on their way up to see us this weekend..they should be here anytime now...will be nice to see everyone...u never relize how much you miss adult, well u cannot really call our conversations "adult" ha ha ha, conversation until u do not have it....lol....well, that is all that i have to report to everyone for today...i miss you guys alot...and sandy, i am praying for you...if i can do this you can do it also....keep your chin up girl!! love you guys....the crazy hoochie in 5210

Thursday, October 14, 2004 11:53 PM CDT

yeah, yeah, i know....twice in one day...how much more of me can you stand right?....ha haha...just couldn't sleep tonight, had a pretty stressfull day...justin is sleeping so no worries on his part....the doctors came in this afternoon with more crappy news for me and justin...they said that his belly-rubin..{sorry i cannot spell it} was high, which means he has damage to his liver....is it me or do we always seem to get the good news with the bad news at times.....they cannot say whether the damage was done with the 8 months of chemo at winston or with the 4 days on lethal doses he received here....ever feel just drained? like you cannot take anymore? and on top of the liver damage, i also found out that when we leave here i will have to draw justin's blood work, learn how to work his pump{which is coming with us when we get discharged from the unit},get a supply of the masks and booties, and also have to learn how to give him his antibiotics through a machine as well....man what a day........and they wonder why i cannot sleep tonight!!! hmmmmm, i wonder...a-duh!! i keep asking God, when will this end?...when will i be able to relax and sit on my porch and watch my boys play in the yard again?...but i tell you what....i am not letting it win...even though i think i am hitting the bottom, there is still some redneck hoochie left way deep within.....{at least that is what i keep telling myself}....man if i was not crazy enough when i started all of this crap, i hate to see me when i am through with it...ha ha hahahaha....hey you gotta laugh at yourself once and a while....or else you really will go totally nuts....lol....well, i better get back to the room before they send in the shrink to make sure i am okay...Lord if he only knew...ha hahahahaha...love you guys, christie

Thursday, October 14, 2004 10:33 AM CDT

hello all....well we awoke today to more great news...justin is now at .6 ..........i am so happy...his little cheeks even look as though they have went down some since last night....i asked the nurse how long justin will have to wear a mask when we are discharged from the unit and she said that he will have to wear a mask anytime he is around alot of people....they said that right now justin's immune system is like that of a newborn baby...so it will take a couple of months for it to be high enough for him to even go back to school....they still have not said if he has to get all of his immunizations again or not...i am so overwhelmed that we are finally moving up with the counts more than just .1 a day.....maybe tomorrow is our day to start soaring upward....the little boy in here that had the brain tumor is now doing great...he is such an inspiration to me....they are actually getting discharged tomorrow....soon that will be us.....even though i want to leave the unit with all my being, i am also a little scared that we will not have the constant care from the nurses and doctors just in case something goes wrong...justin will be on the TPN [liquid diet] when we leave from the unit, so i will have to learn how to do alot more than i already know....but have no fear, the crazy hoochie momma will be here...ha ha hahaha.....i will be so glad when i can finally see brandon again..i think i still have another week before i can be around him...seems like a year has went by...well, going to go for now....later....

Wednesday, October 13, 2004 11:02 AM CDT

hello all!! well we are still a climbing!!! we are now a .4!!! am so happy that we are going up on our counts....just wish that they would hurry up and GROW!!! the doctors and nurses keep saying "anytime now" for the cells to start really taking off, man am i ready for it....justin is doing good today...the teacher came by and he started to get sick...hmmmmmmm, i think the little punk was faking it myself, smart little brat.....ha ha ha ha ....he has not gotten sick now in like a week, so that is what made me believe he was "pulling our leg"..{that and as soon as the teacher left he was some how 100etter}.....ha ha ha ha ....oh well, i guess this one time of "being sick for the teacher" he figured he deserved....lol....we got up this morning and i got justin into the bath tub and bathed him, and i am going to get him up out of that bed today and make him walk the halls and do some activities....maybe that is why his cells are producing so slowly....he just needs to get up and make that blood circulate....well, that is all for now...going to go pester my little chipmunk punk some more....thank you to everyone again who has signed justin's guestbook and who has viewed his page....love, the crazy momma in the 5200 unit....

Tuesday, October 12, 2004 2:39 PM CDT

hey guys it is me again!!....well we awoke today for more good news...now justin's white blood count is .3!!! am so happy that we are now going up on our counts and soon to be out of here....i got the nurses to down justin's pain medicine because he was a little too dopey for me...he seems to be doing okay with it...his little jaws are still swollen and he gets mad at me when i call him a little bulldog....ha ha ha ha ...i have taken alot of pictures of him as we have went along just so he can look back and see what he has made it through....we are scheduled to get more platlets today sometime because his platlets are in the low 20's....they say that the platlets are the last thing to start reproducing, but oh well, just glad his white count is still climbing up....would like to say thank you to sandy for the e-mail she sent of the beach pictures...i loved them....did not relize how much i missed everyone until i seen the pics....especially brandon, the bubble-blower!!! ha ha ha ha....feels like more than a month that we have been gone....but we are now counting down to the days we have left before we can leave and atleast be in the apartment....well, going to go for now...keep up the prayers, they are working!!...love, the hoochie-momma in the 5200 unit......

Monday, October 11, 2004 5:04 PM CDT

hello guys hope your day has been a good one because we are looking good today...we woke up this morning to a .2 on our blood counts!!!! WOOO-HOOO!!!! and here we go....justin's lips look a whole lot better but his mouth is still really swollen and is still hurting him but we are on our way......they went up on justin's pain medicine today, i think it is because his mouth is trying to heal and it is causing the pain now.....the doctor said that we should be discharged some time next week...am so happy, even though we still have another month here, at least we will be in the apartment instead of the hospital...i made justin get up and out of his room again today...i made him walk the halls and we did some painting in the family room..he was really mad at first but then he was okay...well, i will continue to keep everyone up to date on here.......love and miss you all.....love, the happy crazy momma on the 5200 unit!!!

Sunday, October 10, 2004 1:52 PM CDT

okay we are now on day 9 post transplant, and the 2a.m. blood counts were not in our favor...we are now back in the negatives...oh well, justin is now looking better and feeling better, he actually got out of his room today and walked the halls with me and O.D., he also did his physical therapy today...am so proud of him......even though we lost the .1 from yesterday we are still in good spirits because of how good justin is feeling....maybe we are getting closer....i have met alot of really nice people here on the unit and it is helpful to talked with them about what is going on and actually have someone that is at the same point i am...there is a little boy here on the unit that had a brain tumor and also had his own stem cells for the transplant and is now doing really well....so talking to his mother last night helped me relize that it is going to get better and to not get upset about our situation because there are alot of children here that are fighting worse wars than the ones we have....so i am thankful that justin is doing as well as he is right now....well, going to go for now, love and miss everyone..........later.....

Sunday, October 10, 2004 1:52 PM CDT

Saturday, October 9, 2004 6:04 PM CDT

okay here i am again.....we are now on day 8 post transplant and justin is still having problems with his little mouth.....but there is hope....i got his blood counts today and we are now at .1 not .01 but .1............i am so happy........looks like we are fixing to start climbing......GROW CELLS GROW!!!!! ...... they said that his mouth might be hurting him worse now because all the cells are starting to go to the mouth and heal it.....man i hope so.....they draw blood work at 2:00 a.m. so i will not know until the morning if we are actually seeing true results, but i am hopeful........everyone keep your fingers crossed......O.D. made it in last night around 9:00 and stayed until he could not hold his eyes open any longer and then went back to the Ronald Mcdonald House to his room....am so glad that we did not have to fork out another $150 bucks for the weekend for his room....was worried he wasn't going to be able to come up but he did.....and thankfully, i really needed the break more than i thought.....i went today and looked at the apartment that we are getting when we get discharged, it is really nice......it even has a fireplace in it.....justin and brandon will like that.....we have been keeping justin awake all day long so that he will sleep at night, he has been worse than a newborn with his day and nights being messed up....that and it is killing me....ha ha ha....well, i hope that all u beach bums are having a good time down there, cause u guys suck eggs.....ha ha haha.......just kidding, hope you guys are having fun and we miss you all......guess i will go for now, love you guys.........love, the 5200 units crazy momma.......

Friday, October 8, 2004 1:58 PM CDT

here we are again.....well, we are now on day 7 post transplant and there is still no improvement.......last night was really bad for justin.....they switched him back to the morphine for his continuous pain relief and it has not been helping much....we pretty much were up all night last night until around 9:00 this morning when we finally got about 2 hours of sleep.......the doctors and nurses had to call in pain management today to look at justin and how we could make him stop hurting from the mouth pain.....i hope they come up with something that works.........poor little guys mouth is bleeding now pretty bad and they are going to give him more platelets today...i feel bad for him.......GROW CELLS GROW!!!!! last night the nurses and doctor said that it has been awhile since they had seen mucositis this bad with a child here.......figures......i do not think that justin ever gets a break.....i pray every night that God will heal him and he will be better the next day.......maybe tomorrow is our day.......man i hope so.........well, i am going to get off of here for today....going to go try to take a nap......love you guys.........later

Thursday, October 7, 2004 4:55 PM CDT

well here we are on day 6 post transplant....GROW CELLS GROW!!! maybe they need some fertilizer......justin is doing a little bit better as far as getting around and talking a little more, but his poor mouth is now bleeding more than yesterday....i just wish his mouth would at least heal a little for him....he is my little boot lip chipmunk....so far no cells starting yet...hopefully they will start to grow soon...the doctor said that this is as bad as it gets, so we are pretty much just waiting for the day when we get up and justin just looks and feels a whole lot better, then about 2 or 3 days after that the doctor said we will see progress through the blood counts...they say that he will start to feel and get better before it shows up on the blood work .........which i am happy to hear....i hope it is this weekend...justin said he wanted me to tell everyone that he misses you guys alot, especially brandon...go figure, you wouldn't have thought it by how them two fight....hahahaha.......i do not blame him though, i miss brandon too....but i am keeping his spirits up as good as a goofy momma can....i believe i have stumped every toe, knocked each of my ankles at least a million times and ran into everything at least once in our tiny little room........the beds here are hidden into a closet area, so knowing me, i almost knock myself out with the dag-gum thing on a nightly basis....oh well, justin thinks me and the bed wrestling each night is funny, and u know me, anything to make someone laugh.......well, i wish we could be with everyone this weekend when they took the family beach trip but i have a feeling we will get some nice goodies from them when they get back...{hint, hint, hint}well guess i will get off of here for today...by the way, thank you to everyone who has signed justin's guestbook, i read it everyday and it has helped me more than you guys could ever imagine....bye for now.....love, the crazy woman in the 5200 unit.....

Wednesday, October 6, 2004 8:09 PM CDT

hello guys, hope everyones day was good....well, last night was another bad night....justin was having bad stomach pains and we could not figure out what was going on so after the nurses and doctors tried another narcotic and then went up on his regular narcotic that he has for pain they ordered an emergency x-ray on his stomach area.......and we waited until around 1:45 am. to find out what they said about it...i was so worried...but everything looked fine and they said that the mucositis that is in his mouth is what is also in his stomach....poor guy......they went up again on his pain medicine and it took me about 30 more minutes to get him to finally lay down....he was pretty much up and down all night and into the morning....but he has not gotten sick in 2 days now and he has not run a fever in 2 days also....which is good..tomorrow they are going to de-access his port-o-cath....thank the Lord....talked to our doctor today and he said that justin should start feeling better by sunday or monday.....man i wish it was sooner...oh yeah, remember the .01 that we gained yesterday, well we are back into the negatives again....oh well, we will get back there eventually...just next time we start, we are not going to stop....well got to run for tonight....hopefully tomorrow will be better for my little punk.....love you guys.....later.

Tuesday, October 5, 2004 6:15 PM CDT

hey guys...am now reporting in for everyone about justin...well, last night was not a good night, but it was better than the one before...so far today justin has not gotten sick once...thank the Lord....i got him to hold down some mylanta for his little stomach and it seems to be helping along with the pain medicine...the nurses came in and had to give justin some kind of blood pressure medicine by mouth today because his blood pressure was going to high, but he is fine now....we are now on day 4 post transplant and i have at least one small glimpse of hope....JUSTIN'S WHITE BLOOD COUNT IS STARTING TO COME UP!!! it is now .o1...hey, it is not alot, but it is not negative 0 now......YEAHHHHHHHHHHHHHHHHH!!!!!!!! i am so happy, but not going to get my hopes up to far yet, because they said his counts will start to come up a little, then go down, then they will start to go up again and then just keep going.......woo hoooooo!!! we have reached the bottom of the mountain, now it's time to start climbing the mountain back up....and climb we will...am so happy...i had to ask the nurse 3 times today if his counts really meant .o1 and not negative 0....i almost hugged her neck...i think now i can finally see the light at the end of the tunnel....we are going to make it.....i have no doubt in my mind now....even though we are seeing a little progress with his blood work the doctors have told me that justin is not suppose to have any visitors until maybe this weekend...they said that right now he has no immune system and that someone from the "outside world" could bring something in and not know it until it was to late and that would be drastic for justin...so i will agree, they know what is best, they have done this more than i have...hopefully we will never have to do it again....well, going to go back to my, .01 count, punk....take care everyone and keep the prayers a coming....later........

Monday, October 4, 2004 4:22 PM CDT

well, here we are at day 3 post transplant....well if you would have asked me how i thought the rest of the week was going to turn out yesterday i probably would have said, "i think the worst is past us", well it isn't yesterday...last night was the worst night so far...justin little stomach is really hurting him and he is now back to being sick every hour it seems like...we were up every 45 mins last night because of his stomach and him being sick...i had them change his pain medicine from the morphine to .......grrrrrrr....i can never remember the name of this one...anyway, the pain medicine he is on now is suppose to not make him sick, because every time he hit the button with the morphine he got sick right after....i just now got him to lay down and fall asleep, as for me, lets just say i have hit my second wind.....poor fellow....i do have to admit that i have been questioning myself as to why him.....i do believe this is the hardest thing i have ever done...justin is still running a fever and now they have informed me again that they are going to access his port-o-cath, again....they say they want to rotate the antibiotics from his lumens,then to his port....am so frustrated, i cannot imagine the emotions justin is feeling....the doctors and nurses say that we are now "plained out", and that he will be like this for a few days......man do i need a punching bag up here....and a smoke would be nice too....he he he ...naaaa, i can do it....that is what i keep telling myself, so my sub-concious must know something i do not..{yeah, like i am crazy} ha ha ha ha ....but no need for anyone to worry because i am still okay...and all the nurses still have no black-eyes.....so i do say i am still hanging in there...ha ha hahaha.....i can only pray that my little punk has a better night than the one before...just wish it would hurry up and get better and so does he...we got a letter today from mamaw pope...i read it to justin while he was laying in bed, then when i opened the card the little punk grabbed the money from inside it and declared it was his...ha ha ha ....he is such a punk....oh well, gonna get off of here for today, figured i would write in early so i could be with justin tonight...love you guys...later

Sunday, October 3, 2004 9:23 PM CDT

hello everyone.....figured i would come and update you guys on how justin is doing...well today was about the same as yesterday as far as the mouth sores and the mouth pain....justin is still running a fever but they say that is to be expected....hopefully by this friday he will be feeling and doing better....O.D. took off back home today around 5:00 so he could get home in time to get brandon and get ready for tomorrow...justin did better this time with him leaving....we are now on day 2 post transplant....the doctor and nurses are counting upward but, me, i am counting down....only 6 more days until justin is suppose to start making his own cells....seems like forever.....justin's mouth and throat must be getting a little worse because earlier tonight he started spitting up blood...the nurses have told us that it also is to be expected....well, they said first his count will go to 0, then the mucositis, then then the fevers come, then he kinda plains out and just stay that way for a few days, then the doctor said one day {around day 8 i hope} when he comes in the room to check on him he will look better than he did the day before and that is when u will be able to tell that his body is starting to make new cells......man i cannot wait till that day...i know we celebrated his TRANSPLANT DAY, but i will truly celebrate the day when he starts to feel better, to me that will be the wonderful day!! well gonna go back to the room and sit with justin...write you guys more tomorrow...love and miss everyone badly......later...........

Saturday, October 2, 2004 8:10 PM CDT

hello everyone again.....well today has been rough for justin....his mouth is swelling more and more as each day passes and he is starting to look like a chipmunk now...they increased his morphine again today and said that they will continue to increase the doses as his mouth pain progresses.......poor kid, dunno how he is doing it but he is doing it....pulling through each day like a trooper...he even takes over the nurses jobs when they draw his blood for labs.....they keep saying he's a pro!.....ha ha ha ......everywhere we go i do believe he touches someone......the little punk.....well we are now on day 1 post transplant.....look at me with all the lingo going on here...he he he ..........we didn't get much sleep last night, between the sickness, bad dreams from the medicines, and the constant in and out of the nurses ......oh well, we will have plenty of time later for much needed "catch up sleep"......justin is running a fever tonight so they started him on another antibiotic so it doesn't look like too much sleep tonight either........man i will be so glad when we hit day 7 or 8....that is when his stem cells are suppose to start reproducing and the first thing to start to heal will be his mouth......wish i had a time machine.......well, going to sign off of here tonight.........love you guys........later....

Friday, October 1, 2004 7:23 PM CDT

well today is day 0...it is TRASPLANT DAY!!!! so far so good...johnny,cheryl,chance and O.D. came up this morning for justin's transplant...he had his transplant at 11:00 a.m. today....he took them fine....his smell on the other hand is a mix between a fishy/garlic/creamed corned smell...ha ha ha ha....he has only gotten sick a few times today, which is better than yesterday....his mouth is still sore and he has some pain but it is being managed with the morphine.....tomorrow will be day #1 after transplant....i am so happy that we have finally made it to the transplant and are almost into day 1.....he is still keeping his weight at 48 pounds...which isn't alot but he is not loosing any either which is wonderful....johnny,cheryl and chance headed back home today about 6:30 p.m.,,.......brandon had a terrific kid award today also, so i have 2 terrific boys today...was upset that i could not be there to see him accept his award, but his aunt brandi and aunt jill were there for me, to see him and take pictures....by the way, thank you guys alot......O.D. is going to stay up here until they run him off to the hotel....he is going to be here this weekend also, which gives me a big break cause hospital life can get a little depressing.....well i have put on new pictures of the boys on here for everyone to enjoy....
guess i will get off of here for tonight.....keep up the prayers, i know they are working.....later.....

Thursday, September 30, 2004 7:17 PM CDT

hello everyone, hope your day has been good..as for me and justin we are still hanging in there...today was not to bad of a day..justin's little mouth is just really sore....but we are on the -1 day!!! TRANSPLANT DAY IS TOMORROW!!!!! thank the Lord...so far the doctor has not said anything else about justin's cultures growing so i am taking it as "no news is good news"....They increased justin's morphine pump again today...it seems to be helping alot for him, but he is still really sick and it hurts his throat when he does get sick....we still are not seeing the worst of the mouth sores and irritation yet...i cannot imagine it being any worse for him, but we will pull through it so how....never gonna give up.....the doctor seems to be really optimistic about us getting out of here in about 2 1/2 weeks after tomorrow.....WOOOOHOOO!!! ....justin's best buddy brad came by again today...justin is really growing fond of him...brad had called today to see about justin and at the time justin was really bad, but when he heard who i was talking to he sat right up and said he felt fine to see brad......i am glad that his best buddy turned out to be a good guy....so far he has lived through my 1,000 questions a day drill...ha ha ha ha ....well, justin just got his benadryl and fenegrin for tonight so he is finally asleep, i hope he sleeps all night....uh oh....got to run, the nurse just came and got me and told me that justin is sick again.......so much for a good night........bye everyone for now,...........

Wednesday, September 29, 2004 7:58 PM CDT

what a day we have had...well we are still not sure if justin gets to keep his central line that he has now in...the doctor said that bacteria usually grows in 3 to 4 days but this type of bacteria usually comes from the mouth so we are pretty much just waiting to see...but we are still on date with getting our stem cell transplant this friday...now on how justin is doing---well, we are now starting to see the bad mouth pain and the mouth sores...but they say it still gets worse...it kills me to see him hurt so bad but they have increased his morphine twice now and stopped the vomitting so he is now resting, thank God..........his "best buddy" brad came by today and hung out with justin for about an hour....he seems to be a really nice guy....he brought justin a spiderman poster to hang in his room...justin really likes him alot....i think he is stopping by again tomorrow to hang out and play with justin...which is good, he needs someone besides his boring old mother (as he said , ha ha ha ) to play with....
hopefully he will sleep good tonight cause every day to come is an up hill battle from now on...i say..BRING IT ON....so far i have quit smoking, not slept but only 2 hours every night, and now think i know what the guy off of FIGHT CLUB felt like....ha ha ha ha...oh well, i feel sorry for the nurses and doctors,,,he he he , they better stay on my good side, that is if they can find it...hhe he he.......justin wanted me to tell everyone that he misses you guys alot, and i mean alot....and that he wanted me to get someone to break him out of here....too cute....gonna sign off for tonight...keep you guys up to date on here cause sometimes i just dont feel like talking on the phone alot....sorry.....love you all.......byeeee

Tuesday, September 28, 2004 4:50 PM CDT

okay...here we go..well last night justin did not sleep well at all...sometime early this morning, i believe around 3 a.m., he had a blood transfusion...he was sick this morning until about 2:00.. they gave him adavan,fenegrin,benedryl,zofran and finally morphine...hope i spelled them right...am not all here today..after the morphine he started to act like himself again...his mouth is now getting really sore..his top lip is swelled up a little and he says his throat hurts...the doctor came in today and put him on a constant drip that also has a button that he can push for extra pain relief, of morphine...also had more bad news...........justin now has 2 positives on his culture samples, so now they are fixing to access his port also...he is also running a fever of 101.3, so they just gave him tylenol....am so aggravated....but i know it is only going to get worse.....
we have so many machines on our pole i do not know where they will put this one when they access his port-o-cath....AHHHHHHHHHHHHHHHHHHHHHH..........so now, if the lines of his hickman have infection or bacteria it has to come out...and...a new temporary one will be placed up towards his neck and then after a week the new central line will be placed in the permanent spot....God help me....I do believe we have the worst luck....but the doctor says that we are still on schedule for friday for the stem cell transplant...dunno how....i can only pray that nothing grows on the cultures that they draw from him today....But justin is still in good spirits...i have been trying my best at keeping him occupied and being strong for my son...we are supposed to be meeting our "best buddy" tomorrow, his name is brad....he seems like a pretty nice guy..he is going to come in 4 hours a week and just hang out with justin and sorta give me a break...justin is looking forward to it....well, figured i would sign in early on the journal today, dunno if i will have time tonight to get out of the room again.....will keep everyone up to date......later.....

Monday, September 27, 2004 8:05 PM CDT

just wanted to say thanks to everyone who has visited justin's site and signed his guestbook...unfortunatly he is still not feeling up to coming in here and reading any yet... i did manage to get him up and walk a lap today on the unit..even though he hated me for it...ha ha ha...he is still not eating but is maintaining his weight..talked to the doctor today and he said justin would probably start the "liquid diet" around thursday..justin's counts are still pretty good but the high doses of chemo i think are getting to him now...we are on our -4 day, counting up to our stem cell transplant...which will be on friday...justin's papaw's birthday...by the way happy birthday to momma,daddy,becki,jill,paw,cheryl,johnny,chance,jennifer and tracy.....PHEW!!! hope i got everyone...figured i would go ahead and say it now because i don't think i am gonna be in the right state of mind to recall anyone's later on in the weeks to come....still trying to manage to get a decents night sleep in this place..last night i covered the {glowing,beeping demons- that's what i call them anyway} machines with washcloths...he he he he....well thanks again to everyone who signed justin's guestbook and keep us in your prayers ..Lord knows i need all the help i can get.....ha ha ha....i will keep u guys up to date ...gonna go for tonight.............

Sunday, September 26, 2004 6:33 PM CDT

well last night was a doozy.....i can now say "here we go", between the nurses and the constant beep, beep, beep....i think i am going to kill one of them....think i am going to take the machine out first...he he he ...justin had an okay night...he got sick a few times, but did okay...now today was a not so good day for him...he was sick on and off all day and now tonight...Cheryl and Johnny and O.D. left today to go back home...Justin did not take it very well....He misses his daddy...But like the wicked mother that i am, i tickled him until he had to do a "STOP MOMMA I AM GONNA THROW UP" yell....ha ha ha ha...still think he was pulling my leg that time....oh well, it made him get his mind off of everyone leaving....the nurse just mentioned that after about 3 days of justin not eating well the doctors usually start the I.V. feeding through his hickman line....which will be good ...cause he is not eating well at all at this time.....gonna go for now...got to try to get some sleep tonight....

Sunday, September 26, 2004 6:30 PM CDT

ONE DAY...

One day he will get past this
One day he will know
One day he will remember his strength and his fight
One day he will be free, free from the machines, the doctors and the pain
One day he will be free----to just be a child.....one day

by:christie

Saturday, September 25, 2004 10:05 PM CDT

hello everyone...figured i would write in today as how justin did.... i am still quite amazed that he is not feeling as bad as everyone has said.. i think we just have not gotten to that point yet...so i am just savoring in these few days that he is still happy and playing...O.D. and his mom and dad came up today...justin was really glad to see them too... gave me a chance to get out with O.D. for awhile .... had to do some grocery shopping... already sick of the hospital food...ha ha ha... hopefully tonight will be another easy night for the both of us.........

Friday, September 24, 2004 4:50 PM CDT

well we started our first intense dose of chemo today...here we go.. justin is doing alright.. he has only gotten sick once today so i am taking that in stride.. had the speach teacher come in and test his speach..she said he has a mild case of the hillbilly slurr...ha ha ha ...just joking.. he is okay on his speach...also had a visit already from the school teacher (even though he tried to get out of it) she is very impressed....i told her he gets it from his brilliant mother, of course!! he he he....well gonna go for tonight. will keep everyone up to date as good as i can... Just keep us in your prayers...Miss everyone already.... byeeeeee for now!

Friday, September 24, 2004 4:28 PM CDT

THE BATTLE
As I lay here and watch my son,
I think of the battle he has yet won.
Every day he fights, I shall stay by his side,
To wipe away his tears, to rub his back, to give him a pony ride.
For his fight is not only his but mine too,
Through God and the doctors we shall make it through.
Giving up is not an option, and will never cross our mind,
Day by day we shall live and put the pain behind.
For each day is anew that God has blessed us with him.
One day it will be over, the battle will have been won,
Then we will thank the Lord for this blessing, it being....our son!
BY: CHRISTIE

Friday, September 24, 2004 4:24 PM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----