Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Justin Bryce FOR UPDATES CLICK THIS LINK http://www.caringbridge.org/ny/justinbryce/history.htm UPDATE: 11-14-02 WELL TUESDAY NIGHT JUSTIN'S GRANDMA AND GRANDPA CUMMINGS CAME DOWN TO VISIT FOR A BIT AND BROUGHT ME SOME GROCERIES. LATER IN THE NIGHT AROUND THE TIME HE TAKES HIS 8:00PM MEDS HE WAS RUNNING ANOTHER FEVER OF 99.2. HE WAS REALLY TIRED AND FELL ALSEEP EARLY. IT WAS HARD FOR HIM TO GET HIS 10:00 PM MEDS DOWN. WEDNESDAY MORNING HIS TEMP. WAS 99.1. HE WAS VERY SLUGGISH ALL DAY. THIS DAY WAS MY BIRTHDAY AND ALL THE KIDS WISHED ME A HAPPY BIRTHDAY AND GAVE ME A VERY CUTE CARD. CHUCK GAVE ME A REALLY NICE CARD ALSO AND IS TAKING ME OUT TO DINNER TOMORROW NIGHT (FRIDAY). MY PARENTS SENT ME A DOZEN RED AND YELLOW ROSES. THANK YOU MOM AND DAD, I LOVED THEM!!! MY BROTHER DEAN AND SISTER-N-LAW MARY GAVE ME A BEAUTIFUL ANGEL. THEN IN THE AFTERNOON MY FOUR GOOD FRIENDS CAME OVER WITH ANOTHER GIFT OF AN ANGEL ( A SISTER ANGEL ) AND MANY CARDS FROM EVERYONE AT WORK. THANK YOU ALL FOR EVERYTHING AND FOR WHO SENT E- CARDS!!!! IT WAS A HARD DAY!! I TRIED VERY HARD TO ENJOY THE DAY BUT IN THE AFTERNOON I RECIEVED MORE NEWS THAT HIS AFP HAS GONE UP TO OVER 200 THOUSAND. HIS OTHER COUNTS LIKE HIS WHITE COUNT AND PLATELETS WERE A LITTLE BETTER THAN LAST WEEK. JUSTIN IS SO, SO SKINNY!! HIS LITTLE BONES JUST STICK RIGHT OUT AND HE HAS DARK CIRCLES UNDER HIS EYES. THESE DAYS IT IS HARD TO BE JOYFUL. IT IS GETTING HARDER TO JUST GET THROUGH THE DAY FOR ME. CHUCK SAID HIS AFP ISN'T DOUBLING SO THAT IS A GOOD SIGN. HE HELPS KEEP ME UP AND SPIRITED. THIS MORNING JUSTIN'S TEMP. WAS 99.0. HE ATE WELL TODAY. BETTER THAN HE HAS BEEN LATELY. WE TOOK HIM OUT A COUPLE TIMES TODAY. IT WAS A VERY NICE DAY. IN THE LATE MORNING HE FELL ASLEEP FOR ABOUT AND HOUR AND HALF. LATER IN THE AFTERNOON HE HEARD HIS DAD MOWING WITH THE LAWN TRACTOR SO HE WENT BACK OUTSIDE AND DROVE THE LAWN TRACTOR AROUND THE YARD FOR QUITE A WHILE. HE HAD A GOOD TIME AND ENJOYED THE FRESH AIR. HIS TEMP. TONIGHT AT 8:00PM MEDS WASN'T VERY GOOD. IT WAS 99.9. HE TOOK HIS MEDS FOR ME AND THEN I TOOK IT AGAIN AND IT WAS 100.2. WE GAVE HIM SOME TYLENOL TO KEEP IT FROM GOING ANY HIGHER. THEN HE WENT TO BED AFTER HIS 10:00PM MEDS. IF HIS TEMP. GOES UP DURING THE NIGHT HIS HEART WILL GO UP AND THAT WILL MAKE HIS MONITOR GO OFF, SO I WILL BE ABLE TO KEEP TRACK OF DURING THE NIGHT. EVERY NIGHT HE IS HOOKED UP TO A MONITOR THAT TELLS ME HIS HEART RATE AND OXYGEN LEVEL. IF IT GOES UP OR DROPS IT WILL ALARM. HE IS ALSO HOOKED UP TO OXYGEN EVERY NIGHT. HOPEFULLY EVERY THING WILL WELL FOR THE NIGHT. TOMORROW JUSTIN IS GOING IN TO SCHOOL TO GET HIS SCHOOL PICTURES DONE. HE MISSED THE DAY THEY WERE DONE AND MAKE-UP DAY IS TOMORROW. HE WAS VERY SAD HE HAD MISSED PICTURE DAY AND REALLY WANTED HIS DONE, SO THAT'S WHAT WE ARE DOING FIRST THING IN THE MORNING. HE IS VERY EXCITED ABOUT IT. TONIGHT WE PICKED OUT HIS CLOTHES HE WANTED TO WEAR FOR HIS PICTURES AND GOT THEM ALL READY FOR THE MORNING. GETTING UP EARLY AND TRYING TO GET AROUND IN THE MORNING IS GOING TO BE HARD THOUGH. HE TAKES A LOT OF PILLS IN THE MORNING AND HAS A LOT OF TREATMENTS. I WILL MISS CHUCK NEXT WEEK WHEN HE GOES TO GO DEER HUNTING. HE HAS BEEN TAKING ERIC AND KAITLIN TO SCHOOL FOR ME EVERY MORNING AND NOW I WILL HAVE TO TRY AND GET THEM THERE AND ALSO DO ALL THAT JUSTIN NEEDS IN THE MORNING. I BET I WILL BE DRIVING THEM AND DROPPING THEM OFF STILL IN MY WARM FUZZY PAJAMAS. HOPE I DON'T EMBARASS THEM TOO MUCH. UPDATE: 11-12-02 OVER THE WEEKEND JUSTIN DOING OK. SATURDAY HIS UNCLE MARK AND AUNT NICKIE CAME TO VISIT WITH HIM FOR A BIT. THEN HE WENT FOR A RIDE WITH THEM IN UNCLE MARKS NEW TRUCK. THEY WENT TO THE VILLAGE VARIETY AND BOUGHT A CHESS GAME AND MARBLES. KAITLIN WENT ALSO. WHEN THEY RETURNED THEY PLAYED CHESS AND THEN JUSTIN PLAYED ON THE COMPUTER FOR A WHILE. UNCLE MARK AND KAITLIN ALSO PLAYED CHESS AND YAHTZEE. THEY ALL HAD A GOOD TIME. JUSTIN DIDN'T EAT VERY WELL THAT DAY. ON SUNDAY JUSTIN WAS REALLY TIRED OUT. HE RELAXED ALL DAY. EAT DIDN'T EAT VERY WELL THIS DAY EITHER. HIS GRANDMOTHER AND GRANDFATHER CUMMINGS CAME DOWN AND BROUGHT HIM SOME YOGURT AND HIS MAIL FROM THE LEGO COMPANY THAT THEY HAD ORDERED FOR HIM. THEY STAYED AND VISITED QUITE A WHILE. STEVE AND FRAN STRNATKA ALSO CAME TO VISIT. MY COUSIN SUE CAME UP AND TOOK A NICE PICTURE OF MY MOM AND DAD WITH THE KIDS AND ALSO HOOKED A PRINTER FOR MY COMPUTER. SHE IS A COMPUTER WIZ. JUSTIN IN THE EVENING HAD A HEADACHE AND LAYED DOWN AND WENT TO SLEEP EARLY. ON MONDAY JUSTIN WAS FEELING A LITTLE BETTER IN THE MORNING BUT WAS STILL TIRED. HE WENT OVER TO HIS GRANDMOTHER AND GRANDFATHER BRYCE'S FOR ABOUT AN HOUR AND THEN CAME BACK AND FELL ALSEEP FOR A FEW HOURS. THEN HE WENT OUT WITH HIS DAD IN THE WORK SHOP UNTIL DINNER WAS READY. HE GOT SOME FRESH AIR WHICH WAS GOOD FOR HIM. WE HAD A FEW REALLY NICE DAYS. TODAY IS CHILLY AND RAINY. JUSTIN IS DOING A LITTLE BETTER TODAY ENERGY WISE. HE HAS BEEN RUNNING A LOW GRADE FEVER AROUND 99.2 SINCE YESTERDAY. I'M A LITTLE WORRIED ABOUT THAT. HE SEEMS HAPPIER TODAY THOUGH. UPDATE: 11-08-02 HI, WELL TODAY JUSTIN WAS OK. HE IS MORE TIRED OUT AND SLUGGISH THAN THE PAST. LIKE I SAID HE IS LOOKING THIN AND MORE SICK TO ME LATELY. HE ISN'T EATING QUITE AS MUCH AND SEEMS TO HAVE PAIN EVERYDAY IN A DIFFERENT PLACE. THIS MORNING I DREW HIS BLOOD WORK. WE PROBABLY WON'T GET THAT BACK UNTIL LATE MONDAY AFTERNOON. WE ARE STILL ON OUR DIET AND TRYING NEW THINGS EVERY DAY WITH FOODS AND THINGS TO TRY AND HELP. I'M STILL LOOKING FOR NEW TREATMENTS EVERY DAY AND SEARCHING FOR ANYTHING THAT MIGHT HELP. ERIC AND KAITLIN ARE DOING OK. THEY KNOW IT IS BAD RIGHT NOW AND ARE DOING OK FOR THE TIME BEING. KAITLIN HAS STAYED HOME FOR TWO DAYS FROM SCHOOL WITH A COLD AND NOT FEELING WELL AND HAVING STOMACH PAIN. IF SHE IS STILL HAVING THIS BY MONDAY WE WILL TAKE HER TO THE DOCTORS AND GET SOME BLOOD WORK DONE AND I WILL MAKE SURE I GET AN AFP LEVEL ON HER. IT MIGHT JUST BE NERVES WITH EVERYTHING THAT IS GOING ON BUT I DON'T WANT TO TAKE ANY CHANCES. ERIC GOES IN DECEMBER FOR ANOTHER MRI ON HIS BRAIN TO SEE IF THE CYST HAS GROWN OR ANYTHING. HOPEFULLY WITH THIS NEW DIET IT HAS GONE AWAY. I'VE BEEN FEELING REALLY WORRIED LATELY AND DEPRESSED. JUSTIN IS SUCH A TROOPER AND DOES ALL THAT I ASK OUT OF HIM WITH THIS DIET AND ALL. MY HEART JUST ACHES FOR HIM AND I'M SCARED OF LOOSING MY LITTLE BOY. I WAS HOPING THIS WOULD TURN THINGS AROUND. THERE HAVE BEEN SO MANY PEOPLE I'VE HEARD ABOUT THAT IT HAS. MAYBE IT HASN'T BEEN LONG ENOUGH YET, I DON'T KNOW. BUT MY WORRY IS STILL WITH ME AND IT IS SO HARD. TO WATCH YOUR CHILD GO THROUGH SO MUCH IS HEART BREAKING AND TEARS YOU UP INSIDE. I WISH I COULD MAKE IT ALL OK AND HIM WELL AGAIN AND A PAIN FREE LITTLE BOY. WHO CAN RUN AND PLAY AND ENJOY EVERYTHING. I HAVE TO THANK ALL OF YOU THAT HAVE COMMENTED ON THE "ME" PERSON. IT IS NICE TO KNOW THAT YOU ARE OUT THERE SUPPORTING ME AND MY FAMILY. "ME" I HAVE DELETED ALL OF YOUR ENTRIES ( THANK YOU GOOCH ), LIKE EVERYONE SAID YOU AREN'T WORTH THE STRESS. THANK YOU ALSO MARK FOR TRYING AND BE SO NICE AND BE SUPPORTIVE AND TRY AND TAKE MAKE IT ALL RIGHT. BUT I THINK THIS "ME" PERSON HAS NOTHING BETTER TO DO WITH THEIR LIVES BUT TO CAUSE GRIEF IN OTHER PEOPLES LIVES. IT'S VERY SAD TO THINK THERE ARE SUCH SHALLOW PEOPLE OUT THERE. "ME" I REALLY HOPE GOD CAN HELP YOU IN SOME WAY AND MAKE YOU A BETTER PERSON, BECAUSE IF I WAS YOU I WOULD FEEL ASHAMED. I'M SORRY BUT THOSE ARE MY FEELINGS. AGAIN TO ALL OF YOU WHO HAVE SUPPORTED US WITH THIS "ME" PERSON THANK YOU!!!! I TOOK GOOCH'S ADVICE AND DELETED THEM, BECAUSE AFTER I THOUGHT ABOUT IT I REALLY DON'T WANT THAT IN MY MEMORY BOOK OF JUSTIN. THANKS AGAIN!! GOD BLESS AND THANK YOU TO ALL THE PEOPLE WHO ARE SO SUPPORTIVE, YOU TRULY MEAN A LOT TO US. IT HELPS MORE THAN YOU KNOW AND ALL THE PRAYERS. UPDATE: 11-07-02 Well again we have been very busy. I had Justin's blood work done and his afp went up again the week of the holloween. His afp went up way over 100 thousand. Not good at all. Then on Friday evening we had to go to calling hours for a good friend who lost her father-n-law. Also on Friday Justin went into school to visit with his class. He had a very good time and the kids put on a nice play for him. They did a nice job. The weekend was very busy with everyday things. Which now is very very hectic. On Tuesday we went to Fort Drumm where Raymond ( Our oldest son who is 20 ) is stationed. We arrived around noon there and were taken to the mansion guest house to unpack and eat lunch. The guest house was wonderful. It had three bed rooms, kitchen, livingroom, diningroom, and two baths. After lunch we went to an army show. It was great!! They did a great job. Justin was asked to give one of the officers a bouquet of flowers at the end of the show. He did a great job. Then after the show we went back to the guest house and where Raymond also met us. He was also at the show. We went to see Ray's barrocks where he stays and then went to the store on base. After we went back to the guest house and had dinner. After a while after dinner Ray went back to his barracks and we went to bed after all of Justins meds were done. The next day ( wednesday ) we got up and they picked us up at 8:30am. We went out in the fields where Ray's unit was. Ray was supposed to be there but something got miscommunicated and they had to send someone for him. There we saw the big guns fire off. Boy are they loud!! We also had an army breakfast with the soldiers. I really like my home breakfast a lot better. Ha Ha. The one seargent presented Justin with a special coin. Then we went back to the guest house for lunch. Ray got to the field just before we left, so we got to say good bye to him. After lunch we went to a building that had engagement skills trainer, which is like big boy video games. It teaches you how to fire the guns and bazooka's and all. Justin, Eric, and Kaitlin had a blast in there. Justin didn't want to leave. From there we got to go see a military medfivac helicopter. The kids all got to sit in a helicopter and see what it was like. By this time Justin was getting tired. They also presented Justin with a special coin. Then we went to the military police station. The kids got see the jail sells and all. Then they rode in a military police car to the kennel. Here they put on a great demostration. They showed how a military dog attacks and bites a bad guy. Justin really enjoyed this. The best part was when they put the big protecting jacket on Chuck and the dog attacked and bit Chuck. Justin really loved this. He kept asking them to release the dog off the leash so the dog could really get his dad. Chuck was a little nervous. But boy was it funny. UPDATE: 10-30-02 HI EVERYONE AGAIN IT HAS BEEN A WHILE SINCE I'VE UPDATED, WE ARE SO BUSY. I FORGOT TO MENTION ON THE LAST ENTRY THAT ON FRIDAY THE 11TH WE ALSO WENT TO THE SYRACUSE AIRPORT AND JUSTIN WAS ABLE TO SEE AN F16 AIR FORCE PLANE COME IN. A GENTLEMAN FROM GREENE SON IS IN THE AIR FORCE AND HE GAVE JUSTIN AN AIRFORCE JACKET WITH HIS NAME ON IT AND JUSTIN GOT TO LOOK INTO THE PLANE AND EVERYTHING. WE ALL WENT AND IT WAS GREAT!! HE ALSO DID A FLY BYE AND TIPPED HIS WING FOR JUSTIN. BOY WAS IT GREAT!! EVERYONE REALLY ENJOYED IT. BUT BOY ARE THEY LOUD!! A LOT HAS HAPPENED SINCE OCT. 17TH AND I'LL TRY AND FIT IT ALL IN AND HOPEFULLY NOT FORGET ANYTHING. OUR LIVES HAVE BEEN VERY BUSY. I'M STILL TRYING TO ORGANIZE THE HOUSE AND KEEP UP WITH ALL OF JUSTIN'S TREATMENTS, MEDS, AND DAILY LIFE WITH THE OTHER KIDS. BUT SOMETHING EXCEPTIONAL HAPPENED ON FRIDAY OCT. 18TH. THE STUDENT COUNCIL INVITED JUSTIN TO THE RALLY AT THE HIGH SCHOOL. THEY HAD JUSTIN ESCORT TAMMY STINARD ( ONE OF THE NOMINEES FOR QUEEN) OUT ON THE GYM FLOOR, THEY ALL DID A STANDING OVATION FOR HIM. MY HEART JUST RACED AND THE TEARS FLOWED. THEY ALSO HAD A SPECIAL CHAIR WITH HIS NAME ON IT FOR HIM. THEN SHANNON REID FROM THE STUDENT COUNCIL PRESENTED A CHECK TO HIM FROM THE STUDENT COUNCIL THAT THEY ALL RAISED. THEY GAVE UP THEIR AWARD SO THEY COULD PRESENT JUSTIN WITH THIS MONEY THEY RAISED. THEY WOULD OF RECIEVED AN AWARD FOR ALL OF THEIR HARD WORK BUT DECIDED TO GIVE THAT UP AND GIVE IT TO JUSTIN. IF THESE AREN'T SPECIAL YOUNG ADULTS THAN I DON'T WHO IS. I COULDN'T BELIEVE IT AND AGAIN THE TEARS FLOWED. THEN ANOTHER VERY SPECIAL THING HAPPENED, JOSH BRAMAN WAS ONE OF THE NOMINEES FOR KING, THEY ALL RECIEVED A KEY CHAIN WITH A KING CROWN ON IT AND JOSH GAVE HIS TO JUSTIN BECAUSE HE THOUGHT HE WAS A KING. HOW SPECIAL. I CRIED ALL THE WAY HOME THAT DAY. I'M STILL IN AWE FROM THIS, THEY ARE WONDERFUL AND ALL OF THEM HAVE ONE OUR HEARTS COMPLETELY. THAT WEEKEND WAS ANOTHER BUSY WEEKEND WITH NORMAL DAILY LIFE. THEN ON THE 22ND OF OCT. WE HAD TO GO BACK TO WILMINGTON DELEWARE TO HAVE A CT SCAN AND BLOOD WORK DONE ON JUSTIN. WE LEFT AROUND 6AM TO BE THERE BY 10AM. JUSTIN'S BLOOD WORK CAME BACK LOOKING GREAT!! THE BEST IT HAS LOOKED IN A LONG TIME. WE DIDN'T GET HIS AFP LEVEL BACK ON THAT DAY THOUGH. THE CT SCAN WAS NOT GOOD AT ALL. WHEN I HEARD THE RESULTS TO IT MY HEART SUNK. IT SHOWED JUSTIN HAS A LOT OF TUMOR ACTIVITY. THE TUMORS ON HIS BRAIN ARE THE SAME, HE HAS 5-6 TUMORS ON HIS RIGHT LUNG, ONE BY OR ON HIS DIAPHRAM, ONE BEHIND HIS KIDNEY, 2 DEFINITE ONES ON HIS LIVER AND POSSIBLY A THIRD ONE. THIS WAS A VERY HARD THING TO HEAR AND STILL IS. BUT JUSTIN STILL LOOKS AND IS FEELING GOOD RIGHT NOW AND WE AREN'T GOING TO GIVE UP HOPE. WE ARE STICKING TO OUR NEW DIET AND SOME OTHER HERBAL TREATMENTS AND PRAYING SOMETHING WORKS. WE NFOUND OUT HIS AFP LEVEL THURSDAY, IT WAS OVER 100 THOUSAND, NOT GOOD AT ALL. AGAIN MY HEART SUNK. BUT LIKE I SAID WE AREN'T GOING TO GIVE UP HOPE. THURSDAY WE WENT TO BREWSTER TO NY WHERE MY BROTHER MARK WORKS. HE KNOWS SOME PEOPLE FROM THE TRAIN STATION THERE AND THEY SET UP A RIDE IN A DIESEL ENGINE FOR HIM. IT WAS GREAT. JUSTIN WAS ABLE TO RIDE IN THE DIESEL ENGINE AND HE HAD A BLAST. HE LOVED IT!!! JUSTIN LOVES TRAINS. THEY GAVE HIM A BAGFUL OF THINGS THAT INCLUDED A BACK PACK, COAT, HATS LIGHTS AND OTHER THINGS. IT WAS AWESOME. HIS BROTHER, SISTER AND HIM AND CHUCK AND I HAD A GREAT TIME!! UNCLE MARK AND SCOTT ENJOYED IT ALSO. THEN WE ALL WENT TO GET A BITE TO EAT AND THEN WE HEADED HOME. IT WAS AROUND MIDNIGHT WHEN WE GOT HOME. FRIDAY WE HAD ANOTHER SPECIAL THING HAPPENING. MY COUSINS, AUNT AND FAMILY HAD A SPEGHETTI DINNER FOR JUSTIN HERE AT OUR CHURCH. THEY DID A LOT OF HARD WOIRK AND ALL THE VOLUNTEERS WHO HELPED OUT WERE GREAT!! WOW. IT WAS A GREAT TURN OUT. THEY HAD A SPECIAL SLIDE SHOW AND MUSIC AND EVERY THING. THEY ALL DID A LOT OF HARD TIRING OWRK AND WE THANK EVERYONE FOR ALL OF IT. YOU ALL ARE AWESOME PEOPLE AND WE LOVE YA ALL. THANKS A MILLION!!!! SATURDAY WE HAD TO GET GROCERIES AND SUNDAY WE WENT TO A GOOD FRIENDS ( RICK AND MOLLY HINCHCLIFFS) FOR FISHING AND DINNER. ALL THE FISH SEEMED TO KNOW TO BITE ON JUSTIN'S LINE. THE ONLY PEOPLE WHO CAUGHT FISH WERE JUSTIN, CHUCK AND RICK. JUSTIN OF COURSE CAUGHT THE MOST. HE HAD A BLAST. WE GOT SOME GREAT PICTURES ON THAT DAY. TODAY JUSTIN IS STILL DOING VERY WELL, PLAYING WITH HIS LEGOS AND ENJOYING BEING HOME WITH FRIENDS AND FAMILY. THIS WEEK WE ARE GOING TO BRING HIS TORTOISE " BRAVE " OVER AND PUT HIM IN JUSTIN'S ROOM SO HE CAN FINALLY ENJOY HIM AND BE WITH HIM. JUSTIN CAN'T WAIT. ERIC WAS ELECTED INTO STUDENT COUNCIL. YEH, ERIC!! WE HAVE TEACHER CONFERENCES COMNING UP SOON, THIS WEEK. HAVE TO RUN JUSTIN'S BLOOD WORK DOWN TOMORROW. ANOTHER BUSY WEEK. TLAKED WITH MY GOOD FRIEND JILL AND TRYING TO TALK HER INTO MOVING TO NY. WE MISS EACH OTHER. I JUST WANT TO END THIS BY SAYING A HUGE THANK YOU TO EVERYONE FOR ALL THAT YOU'VE ALL DONE FOR US, ALL THE PRAYERS, DONATIONS AND HARD WORK YOU'VE ALL DONE. THANKS A MILLION!!!!!!!! THERE WILL NEVER BE ENOUGH WORDS TO SAY THANK YOU FOR ALL THAT HAS BEEN DONE. WE GREATLY APPRECIATE IT ALL. TRULY!!! LOVE AND BLESSINGS TO EVERYONE. UPDATE: 10-18-02 HI EVERYONE, IT'S BEEN A WHILE AND I'M SORRY FOR THAT BUT BOY IS IT GOOD TO BE HOME BUT ALSO VERY, VERY HECTIC. WE HAVE BEEN IN A WIRL WIND SINCE WE'VE BEEN HOME. I GUESS I'LL START FROM THE BEGINNING. JUSTIN AND I LEFT DELAWARE AND HEADED HOME AROUND 10:00 AM ON MONDAY SEPT. 30TH. WE ARRIVE INTO BINGHAMTON A LITTLE AFTER 1PM AND STOPPED IN TO SEE HIS DAD AT HIS WORK. AFTER THAT WE ARRIVED HOME TO OUR HOUSE AROUND 2:30-2:45PM. THE KIDS WERE SO EXCITED TO HAVE US HOME!! WE BROUGHT EVERYTHING IN THE HOUSE AND THEN THE NEXT FEW DAYS WE TRIED TO UNPACK. WE HAD VISITORS AND THE PHONE RANG AND RANG. WE WERE ALSO IN THE PROCESS OF GETTING JUSTIN'S MAKE-A-WISH READY TO GO AND READY FOR THAT. WOW!!! ON SATURDAY OCTOBER 5TH JUSTIN HAD PART OF HIS MAKE-A-WISH. HE WENT TO THE ARMORY AND SPENT THE DAY WITH SOLDIERS. HE WAS MADE A SODIER AND PUT INTO A UNIFORM. HE GOT TO GO ON SOME MACHINERY AND THEY ALSO HAD A SPECIAL CEREMONY THERE FOR HIM. THEN HE RODE IN A HUMVEE WITH THE SOLDIERS TO THE CHURCH FOR HIS SPECIAL DINNER SEND OFF. THERE HE HAD FRIENDS AND FAMILY SEE HIM GET SWORN INTO THE ARMY AND THEN A NICE DINNER. IT WAS GREAT. HE MADE THE FRONT PAGE OF THE PAPER AND WAS ON T.V. ALSO. HE WAS VERY EXHAUSTED ON SUNDAY. SUNDAY AFTERNOON WE LEFT FOR THE OTHER PART OF HIS MAKE-A-WISH. WE HAD TO ARRIVE IN NEWARK, DELEWARE ON THIS DAY. WE STAYED AT THE EMBASSY SUITES HOTEL. WOW WAS THAT NICE. EARLY MONDAY MORNING WE LEFT AND HEADED FOR ARBEDEEN PROVING GROUNDS. WE WERE GREETED BY MANY ARMY PERSONALE THERE AND ALSO ANOTHER MAKE-A-WISH ADVOCATE. HERE JUSTIN RECIEVED A RIDE IN A STRIKER AND ALSO RODE IN A TANK AND ANOTHER HUMVEE. HE RECIEVED A SOME OF THE ARMY FOOD. AFTER WE LEFT THERE WE HAD TO GO TO THE MARRIOT MOTEL IN MARYLAND, RIGHT OUTSIDE OF WASHINTON,D.C.. THIS WAS FANTASTIC. SO HUGE AND BEAUTIFUL. WOW!!!!!! THAT EVENING AROUND 4:00-4:30PM WE WERE PICKED UP BY A LIMOUSINE AND ESCORTED BY THE PRESIDENTS POLICE OFFICERS TO THE PENTAGON. IT WAS AWESOME!!! AT THE PENTAGON THEY PUT JUSTIN IN ANOTHER ARMY SUIT AND HE HAD A BIG SURPRISE, THEY FLEW IN HIS BROTHER RAY, WHO IS ALSO IN THE ARMY AT FORT DRUM, N.Y.. THEN THEY HAD HIM SWORN IN. HE SIGNED PAPERS AND EVERYTHING. HE MET SGT. MAJOR TILLY, SECRETARY OF DEFENSE RUMSFIELD AND A 3 STAR GENERAL CRADDOCK. THEY GAVE HIM PLAQUES, COINS, AND MANY, MANY ARMY ITEMS. THEY HAD A CAKE AND PUNCH ALSO FOR HIM. IT WAS GREAT!!! JUSTIN COULD OF NEVER ASKED FOR A BETTER WISH. THEY WERE AWESOME. THEN HE GOT RIDE IN A CART THROUGH THE PENTAGON. JUSTIN HAD THE TIME OF HIS LIFE. HE WAS SUCH A HAPPY LITTLE BOY!! AFTER WE LEFT THE PENTAGON HE GOT TO GO TO THE WHITE HOUSE AND GET A TOUR OF THAT. THERE HE WAS ABLE TO BOWL IN THE WHITE HOUSE BOWLING ALLEY, WHICH WAS ONE OF HIS DREAMS. HE LOVED IT. WHEN WE GOT BACK TO THE HOTEL HE WAS EXHAUSTED. THEN HE WAS SO EXCITED HE COULDN'T FALL ALSEEP. HE HAD SUCH A WONDERFUL DAY AND THE EXCITEMENT OF IT TOOK OVER. HE WAS ONE SPECIAL BOY AND BOY DID HE FEEL THAT WAY. WE ARE STILL IN AWE FROM ALL THEY DID. I CAN NEVER THANK THEM ALL ENOUGH. THEY ARE VERY AWESOME PEOPLE AND VERY SPECIAL!!!! ON TUESDAY THEY PICKED US UP IN THE LIMO AROUND 8:00AM. JUSTIN WENT BACK TO THE PENTAGON FOR HIS MISSION AND ALSO BE MP FOR THE MORNING. HE RODE IN ANOTHER HUMVEE ACROSS THE PENTAGON LAWN. SO EXCITING!! FROM THE PENTAGON HE WENT TO FORT BELVOIR. HERE HE HAD HIS SECRET MISSION AND AGAIN RECIEVED MANY PLAQUES AND COINS WITH A SPECIAL CEREMONY. HE WAS ABLE TO DRIVE IN SOME MACHINERY AND MET THE RESCUE TEAM OF THE ARMY. THEY PUT HIM IN A BASKET AND LOWERED HIM TO THE GROUND. AGAIN HE HAD THE TIME OF HIS LIFE. HE RECIEVED A HELICOPTER RIDE ALSO. IN THE HELICOPTER HE FELL ALSEEP, HE SAID IT WAS SUCH A SMOOTH RIDE. HE ATE LUNCH AT THE BASE WITH ALL OF THE ARMY PERSONAL THERE. WOW ANOTHER AWESOMNE DAY. THEN FROM THERE WE WENT TO THE COAST GUARD WHERE HE RODE ON A COAST GUARD BOAT. THAT WAS GREAT ALSO. KAITLIN AND ERIC LOVED AND JOINED IN ON EVERYTHING ALSO WITH THEIR BROTHER. BY THAT NIGHT HE WAS AGAIN EXHAUSTED BUT WOUND RIGHT UP FROM ALL THE EXCITEMENT. AT THE ARMY BASE HE ALSO RECIEVED ARMY MONOPOLY. HE LOVES IT. OF COURSE WE HAD TO PLAY IT. WEDNESDAY WAS OUR DAY TO DO THINGS. WE DIDN'T GET UP AND AROUND QUITE AS EARLY THOUGH. BUT WE WENT TO THE ARLINGTON CEMETARY AND WATCHED THE CHANGING OF THE GUARDS. WE WERE SO HAPPY TO GET TO SEE THAT. THEN WE WENT TO THE AQUARIUM. THE KIDS LOVED THAT ALSO. WE RODE THE METRO TO THESE SIGHTS. THAT WAS AN EXPERIENCE. NERVE WRECKING. I GUESS I'M NOT A METRO CITY PERSON. THE DOORS ON THOSE TRAINS CLOSE QUICK, YOU HAVE TO JUMP ON AND JUMP OFF. IWAS PERTIFIED OF LOOSING ONE OF THE KIDS. CHUCK WAS ON HIS OWN IF HE GOT LOST. HAHA. I JUST GRABBED THE KIDS AND OFF AND THEN ON. MY NERVES WERE SHOT BY THE END OF THE DAY. THURSDAY JUSTIN HAD TO BE IN WILMINTON DELEWARE FOR A CT SCAN AND BLOOD WORK. THE CT SCAN LOOKED LIKE MAYBE THE ONE SPOT ON HIS HEAD MIGHT OF SHRUNK. HIS BLOOD WORK THOUGH SHOWED DIFFERENT SIGNS. HIS AFP DOUBLED, WHICH MEANS TUMOR IS GROWING RAPIDLY. HIS WHITE COUNT DROPPED AND HIS SOME OF HIS OTHER COUNTS DID ALSO. THEN WE RECIEVED SOME OTHER BAD NEWS. JUSTIN'S LITTLE FRIEND HEATHER-LYNN PASSED AWAY SUNDAY OCT. 6TH. JUSTIN AND HEATHER-LYNN HAD BECOME VERY CLOSE. OUR HEARTS WERE BROKEN. AROUND 3:30-4:00PM WE HEADED HOME TO N.Y.. WE ARRIVED HOME AROUND 8:00PM OR SO. VERY EXHAUSTED. WE UNPACKED EVERYTHING THAT NIGHT FROM THE CAR AND THE NEXT FEW DAYS I TRIED TO GET EVERYTHING PUT AWAY AND ORGANIZED. ( WHICH STILL ISN'T DONE YET, WE ARE STILL YET UNPACKING FROM DELEWARE) THE DOWN STAIRS IS CLEAN NOW BUT OUR UPSTAIRS IS A MESS!! I FORGOT TO TELL YOU ALSO THAT KAITLIN RECIEVED STUDENT OF THE WEEK ON THE FRIDAY BEFORE WE WENT ON JUSTIN'S MAKE-A-WISH. GREAT JOB KAITLIN!!! ON MONDAY WE GOT BACK JUSTIN'S BLOOD WORK FROM DELEWARE. HIS AFP MORE THAN DOUBLED AGAIN AND HIS COUNTS ARE DOWN EVEN MORE. NOW HIS AFP IS OVER 61,000. MY HEART SUNK. WE ARE ON A SPECIAL DIET THAT IS SUPPOSED TO HELP WITH THINGS. I'M TRYING TO KEEP MY FAITH BUT SOME DAYS IT'S SO HARD. OF COURSE MONDAY WAS A CRYING DAY. I FEEL SO HELPLESS AND WANT TO JUST MAKE MY LITTLE BOY SURVIVE. WE ARE STICKLY A VEGATARIANS RIGHT NOW. SOME DAYS ARE GOOD AND OTHER DAYS I FEEL LIKE I'M FALLING APART AND MY HEART ACHES SO. I DREW JUSTIN'S BLOOD AGAIN ON WEDNESDAY. HIS WHITE COUNT IS BACK UP A LITTLE BIT AND HIS PLATELETS ARE ABOUT THE SAME. WE WON'T KNOW ABOUT HIS AFP LEVEL UNTIL FRIDAY OR NEXT WEEK. I'M ALMOST SCARED TO KNOW WHAT IT IS BUT WANT TO KNOW AT THE SAME TIME. ANYWAYS WE ARE STILL PUTTING THINGS AWAY AND TRYING TO ORGANIZE THE HOUSE STILL. THERE IS ANOTHER SPEGHETTI DINNER FOR JUSTIN ON OCT. 25TH AT OUR CHURCH. PLEASE KEEP PRAYING FOR A MIRACLE FOR JUSTIN. I'M NEVER GOING TO GIVE UP!!! HE'S MY LITTLE SOLDIER AND QUITE THE FIGHTER. UPDATE: 9-24-02 Monday, September 23, 2002 at 07:10 AM (CDT) JUSTIN'S NIGHT FRIDAY WAS OK. ON SATURDAY CHUCK AND THE KIDS CAME DOWN. THEY ARRIVED AROUND 11AM. JUSTIN HAD A VERY NICE SURPRISE SENT TO HIM. HIS FRIEND SHELBY MADE HIM A JEAN QUILT WITH A PILLOW AND THEN HAD ALL OF HIS SCHOOL FRIENDS SIGN IT. ON THE OTHER SIDE OF THE QUILT WAS TURTLES, FROGS,AND LIZZARDS. JUSTIN LOVED IT!!!! JUSTIN IS EATING A LITTLE BIT HERE AND THERE. HIS COUNTS HAVE ALL DROPPED. HE IS NOW RECIEVING THE NEUPOGEN SHOT EVERY DAY AND HAD TO GET PLATELETS AND BLOOD ON SATURDAY. THEY ARE GOING TO GIVE HIM PLATELETS NOW IF THEY GET AROUND 60 AND NOT LET THEM GET ANY LOWER THAN THAT. JUSTIN HAD A GOOD WEEKEND WITH HIS DAD, ERIC, AND KAITLIN. WE HAVE ALL MISSED EACH OTHER SO MUCH. JUSTIN WENT FOR A SHORT WALK AROUND THE UNIT ON SATURDAY AND AGAIN ON SUNDAY. HE WENT TO THE ROOM ACROSS THE HALL WHERE HIS FRIEND HEATHER LYNN IS, TO SEE HER. SHE ISN'T DOING TO WELL AND HAS BEEN GIVEN ONLY 2 WEEKS TO LIVE. SHE HAS LEUKEMIA. JUSTIN WOULD LIKE EVERYONE TO SAY A SPECIAL PRAYER FOR HIS FRIEND HEATHER LYNN. HE SAYS THANK YOU. LAST NIGHT JUSTIN HAD A LOW GRADE TEMP.. HE WENT TO SLEEP AT 10PM AND SLEPT STRAIGHT THROUGH THE NIGHT. THIS MORNING HE IS DOING GOOD. HE STILL HAS A LOW GRADE TEMP. BUT IS FEELING WELL. THIS WEEKEND WE HAD A TALK WITH THE DOCTOR AND DISCUSSED THINGS ABOUT JUSTIN. WE ARE GOING TO FINISH OUT RADIATION THIS WEEK AND ALSO HAVE A MEETING WITH THE DOCTORS EITHER TUESDAY OR WEDNESDAY ON WHAT ELSE THERE IS TO DO. DR.DUNN IS GOING TO MAKE SOME CALLS AND SEE IF THERE IS ANY OTHER OPTIONS FOR US. IF NOT WE HAVE TO THINK ABOUT JUSTIN AND MAKING HIM AS HAPPY AS CAN BE. WE WON'T KNOW ANY MORE UNTIL OUR MEETING THIS WEEK. WE MIGHT BE HOME THIS WEEKEND. THIS IS VERY HARD FOR CHUCK AND I TO THINK ABOUT AND WE ALSO HAVE TO THINK ABOUT THE OTHER KIDS AND THEIR FEELINGS AND WHAT THEY ARE GOING THROUGH. I'VE NEVER FELT THE WAY I'VE BEEN FEELING. MY HEART ACHES SO BADLY. UPDATE: 9-21-02 LAST NIGHT WAS SO AWFUL!!! JUSTIN'S TEMP. WAS QUITE HIGH LAST NIGHT AND IT WOULDN'T COME DOWN WITH TYLENOL. HIS COUNTS HAVE ALL DROPPED AND HE NEEDED PLATELETS. THEY HAD TO PUT ICE PACKS ON HIM LAST NIGHT TO TRY AND BRING DOWN HIS TEMP. HIS TEMP. ROSE TO 104.7. HE STARTED GETTING SICK TO HIS STOMACH ALSO AND COULDN'T KEEP HIS 8PM MEDS DOWN. AROUND 9:30PM THEY CALLED IN A DOCTOR AND AT THAT TIME HE HAD A SEIZURE, HE STOPPED BREATHING FOR A MINUTE AND THEY CALLED A CODE BLUE. ALL THEY CODE BLUE TEAM ARRIVED AND JUSTINS SEIZURE LASTED ABOUT 3 TO 5 MINUTES. MY HEART SANK. I WAS SO SCARED FOR MY LITTLE BOY. I'VE NEVER FELT FEAR LIKE THAT BEFORE. RIGHT AFTER THAT THEY TOOK HIM DOWN FOR A HEAD CT SCAN TO SEE IF HE HAD BLEEDING IN HIS BRAIN. THEY SAID THERE WASN'T SO THEY TOOK HIM RIGHT TO THE ICU UNIT INCASE HE HAD ANOTHER SIEZURE. I COULDN'T SLEEP, I WAS SO AFRAID IT WOULD HAPPEN AGAIN, SO I SAT IN A CHAIR BY HIS BED AND WATCHED HIM AND DOZED IN AND OUT ALL NIGHT. THEY NOW HAVE HIM ON SEIZURE MEDICINE CALLED DILANTIN. HE WILL PROBABLLY HAVE TO BE ON THIS FROM NOW ON. THEY SAID IT IS VERY LIKELY THAT HE WILL HAVE ANOTHER ONE AND I WILL HAVE TO BE TRAINED IN HOW TO HANDLE THEM. I AM SO SCARED OF THIS HAPPENING AGAIN. NEVER FELT SO SCARED IN MY LIFE. JUSTIN HAS BEEN MOVED BACK INTO HIS ROOM ON 3A THIS AFTERNOON. HE HASN'T EATEN ALL DAY BUT IS DRINKING. HE KEPT HIS MEDS DOWN SO FAR TODAY. HE RECIEVED PLATELETS LAST NIGHT AND THEY HAVE MOVED HIS NEUPOGEN SHOT BACK TO EVERY DAY NOW. HIS TEMP. RIGHT NOW WITH TYLENOL IS 99.3. HE HAS TO KEEP THE OXYGEN RIGHT ON NOW BECAUSE HIS OXYGEN LEVEL DROPS WITH OUT IT. THEY ARE STILL MONITORING HIM QUITE CLOSELY. I CAN'T EVEN EXPLAIN THE FEAR I WAS FEELING LAST NIGHT WHEN THIS HAPPENED. IT WAS AWFUL. CHUCK AND POSSIBLY THE KIDS WILL BE DOWN TOMORROW MORNING SOME TIME. IF JUSTIN HAS A BAD NIGHT TONIGHT THEY WILL HAVE TO STAY HOME WITH THEIR GRANDPARENTS. WE WILL HAVE TO WAIT AND SEE. HOPEFULLY JUSTIN WILL BE OK TONIGHT. UPDATE: 9-19-02 THIS MORNING JUSTIN WOKE UP NOT FEELING TO WELL. HE WAS FEELING VERY COLD. I TOOK HIS TEMP AND IT WAS 98.8 AND HIS BLOOD PRESSURE AND OTHER VITALS WERE OK. HE TOOK HIS MORNING MEDS AND ABOUT A HALF AN HOUR LATER I TOOK HIS TEMP. AGAIN AND IT WAS 100.8. HE WAS LAYING IN BED AND ABOUT HALF AN HOUR I TOOK HIS TEMP. AGAIN AND IT WAS 102.4. I CALLED THE DOCTORS AND TOOK HIM RIGHT OVER TO THE HOSPITAL. HIS TEMP. WHEN WE GOT THERE WAS 103 AND HE WAS PUT RIGHT ON OXYGEN. I HAD HIM ON OXYGEN OVER AT THE MCDONALD HOUSE BECAUSE HE ACTED LIKE HE WAS WORKING A LITTLE HARDER TO BREATH AND HIS OXYGEN LEVEL WAS ONLY 92 WITH OUT THE OXYGEN. THEY DIRECTLY ADMITTED HIM ONTO 3A AGAIN. WE ARE IN ROOM 3A-02. THEY HAVE STARTED HIM ON TWO IV ANTIBIOTICS, ALL OF HIS MEDS STILL, THEY HAVE ORDERED A CHEST X-RAY AND ALSO AN MRI OF HIS HEAD. THEY DREW BLOOD CULTURES FROM HIS LINES AND THEY ARE DOING A URINE CULTURE ALSO. THEY GAVE HIM SOME TYLENOL TO BRING DOWN HIS TEMP. AFTER ALL THE CULTURES WERE DRAWN. JUSTIN DID WANT TO COME BACK TO THE HOSPITAL AT ALL. HE WANTED THE DOCTORS TO COME OVER TO THE MCDONALD HOUSE TO HIM. RIGHT NOW HE IS FEELING A LITTLE BETTER SINCE HIS TEMP. IS DOWN A LITTLE BIT. HE ALSO HAS A HEADACHE. NOW WE WILL HAVE TO WAIT AND HAVE ALL THE TESTS DONE AND SEE WHAT IS GOING ON AND WAIT FOR THE RESULTS. WE HAVEN'T HEARD WHEN THE X-RAY WILL BE OR THE MRI. JUSTIN DIDN'T GET ANY BREAKFAST THIS MORNING, BUT SO FAR FOR LUNCH HE'S HAD SOME WATER AND 2 MAYONAISE SANDWICHES. HE DOESN'T WANT TO STAY HERE THE NIGHT AND IS HAVING A HARD TIME WITH THAT. HE KEEPS TELLING THEM HE FEELS BETTER NOW SO HE WANTS TO LEAVE AND GO BACK TO THE MCDONALD HOUSE. CAN YOU BLAME HIM. I REALLY HOPE THIS WILL BE A SHORT STAY AND WE WILL BE OUT BY THE WEEKEND MAYBE. THAT WOULD BE NICE FOR JUSTIN. NOW WE ARE HAVING TO MISS OUR RADIATION TODAY. SO NOW THEY MIGHT HAVE TO ADD ANOTHER DAY ON FOR THAT. WHAT A DEPRESSING DAY. IT WAS GOING SO GOOD AND JUSTIN WAS FEELING GOOD AND EATING WELL AND BEING FREE FROM THE HOSPITAL SO HE COULD BE A BOY AND HAVE A LITTLE NORMALCY. IT WAS SO NICE!! MY HEART ACHES FOR HIM. UPDATE: 9-07-02 YESTERDAY WAS THE HARDEST DAY TO EVER ENDURE. CHUCK AND I HEARD NEWS WE DIDN'T EVER WANT HEAR. WE SAT DOWN WITH ALL OF THE DOCTORS AND DISCUSSED JUSTIN IN GREAT LENGTH AND ALL OF THE OPTIONS THAT ARE LEFT AT THIS TIME. FROM JUSTIN'S MRI THERE IS POSSIBLY TWO NEW SPOTS ON HIS BRAIN. OUR OPTIONS AT THIS TIME ARE RADIATION OF THE FULL BRAIN AND ALSO THE NEW PROTOCOL THAT IS FROM BOSTON AS LONG AS HE CAN TOLERATE IT,WHICH ARE FOUR PILLS OF THALIDOMIDE, CELEBREX, AND TWO ORAL CHEMO'S. THESE OPTIONS AT THIS TIME THE DOCTORS SAID MIGHT LENGTHEN THE TIME FOR JUSTIN TO BE WITH US AND SEE FAMILY AND FRIENDS. THE THALIDOMIDE AND CELEBREX WE ARE STARTING TONIGHT AND CAN DO THIS DURING HIS RADIATION, WHICH WILL GO FOR 2 AND HALF WEEKS MONDAY THROUGH FRIDAYS. JUSTIN WILL HAVE HIS FIRST RADIATION TREATMENT ON MONDAY. JUSTIN WILL HAVE TO HAVE HIS RADIATION OVER AT CHRISTIANA HOSPITAL ABOUT 15 MINUTES AWAY. THEY WILL TAKE HIM BY AMBULANCE BACK AND FORTH. THE DAY AFTER THE RADIATION IS ALL DONE HE WILL START ONE OF THE ORAL CHEMO'S. THE CHEMO'S ALTERNATE EVERY 3 WEEKS. JUSTIN HAD ANOTHER MRI TODAY ON HIS SPINE TO MAKE SURE THERE AREN'T ANY TUMORS ON HIS SPINE THAT MIGHT NEED TO BE RADIATED ALSO. HOPE WE DON'T KNOW BUT MAYBE THIS WILL CURE HIM, MAYBE WE COULD GET OUR MIRACLE WITH THIS REGIMENT AND THE RADIATION, NO ONE KNOWS AND RIGHT NOW WE ARE GOING TO PRAY THAT IT WILL. WE KNOW THE DOCTORS SAID IT IS VERY UNLIKELY BFULLY TONIGHT WE WILL FIND OUT THOSE RESULTS. BUT WE HAVE TO HOPE AND PRAY THAT IT DOES. IN THE MEAN TIME I'M GOING TO LOVE HIM, HOLD HIM, KISS HIM, AND ENJOY AND TREASURE EVERY SINGLE MOMENT WITH HIM AND SPOIL HIM ROTTEN. WE ARE GOING TO DO HIS MAKE-A-WISH AND MANY OTHER THINGS. CHUCK AND I ARE SO BROKEN UP OVER THIS AND MY HEART ACHES EVERY SECOND. I NEVER THOUGHT I WOULD EVER HAVE TO WRITE SOMETHING LIKE THIS AND THIS IS VERY, VERY HARD. THE PAIN AND HEART ACHE ARE TO MUCH TO BARE. CHUCK HEADED HOME AROUND 5:30PM TONIGHT AND SHOULD ARRIVE HOME AROUND 9:00-9:30PM. THEN HE WILL RETURN ON SUNDAY NIGHT TO GO TO THE FIRST RADIATION TREATMENT ON MONDAY WITH JUSTIN AND I. THEN HE WILL HAVE TO HEAD HOME AGAIN ON MONDAY NIGHT LATE BECAUSE HE WILL HAVE TO GO TO WORK ON TUESDAY. THIS IS SO HARD ON HIM BEING AWAY AND HIS TIME IS USED UP TO TAKE OFF FOR HIS WORK SO HE IS FEELING TORN BETWEEN WORK AND JUSTIN. HE IS AFRAID HE WILL GET HIS WORK UPSET AND DOESN'T WANT THAT BECAUSE HE LIKES HIS JOB AND THE PEOPLE HE WORKS WITH. PLUS ALL THE TRAVELING BACK AND FORTH. THIS IS SO DRAINING FOR BOTH OF US. I MISS AND WORRY ABOUT THE OTHER KIDS AT HOME AND IF THEY ARE OK. MY HEART ACHES FOR THEM TOO BECAUSE THIS HAS TORN THEM UP INSIDE ALSO. HOPEFULLY AFTER RADIATION AND A FEW DAYS ON THE ORAL CHEMOS WE WILL BE ABLE TO GO HOME. THAT WILL BE IN ABOUT 3 WEEKS. JUSTIN WILL ENJOY BEING HOME SO MUCH AS I WILL ALSO. HOPEFFULLY NEXT WEEK THEY WILL HAVE HIM OFF HIS TPN AND ALL OF HIS ANTIBIOTICS. UPDATE: 9-04-02 PM TODAY HAS BEEN THE HARDEST DAY! THE MRI WAS DONE AND IT CAME BACK SHOWING THAT WHERE HIS OPERATION WAS IS SWOLLEN OR SOMETHING, BUT ALSO THERE IS ANOTHER SPOT ON THE OTHER SIDE (THE RIGHT SIDE) OF HIS BRAIN. JUSTIN IS LOOSING THE MOVEMENT IN HIS RIGHT ARM AND LEG AGAIN. HIS AFP CAME BACK AND IT IS QUITE A BIT HIGHER AGAIN. THEY THINK WHAT IS ON HIS BRAIN IS TUMOR. CHUCK WILL BE ON HIS WAY DOWN IN THE MORNING. WE HAVE A MEETING WITH THE DOCTORS TOMORROW. JUSTIN HAS BEEN IN A LOT OF PAIN TODAY AND CAN'T GET COMFORTABLE. I HAVE CRIED, CRIED, AND CRIED TODAY, MY HEART IS ACHING SO MUCH AND I FEEL LIKE THE WORLD HAS COLLAPSED AROUND ME. IF WE EVER NEED A MIRACLE IT WOULD BE NOW. I FEEL SO HELPLESS, DRAINED, AND A HUNDRED OTHER EMOTIONS. SAY A PRAYER FOR OUR LITTLE BOY TONIGHT. UPDATE: 9-03-02 WE STILL HAVEN'T GOTTEN THE FINAL REPORT BACK YET. THEY SAID MAYBE BY FRIDAY. THEY DON'T THINK IT'S THE FUNGUS SINCE NOTHING HAS GROWN YET FROM THE CULTURES, SO THEY HAVE STOPPED THE MEDICINE FOR THAT AND TOMORROW I THINK THEY ARE GOING TO STOP THE OTHER ANTIBIOTICS HE IS ON. THEY THINK THEY MIGHT KNOW WHAT IT IS BUT CAN'T SAY DEFINETLEY UNTIL THE FINAL REPORT COMES BACK. THEY HAVE SENT IT OFF TO JEFERSON TO HAVE PATHOLOGISTS THERE LOOK AT IT. THE NEWS EITHER WAY ISN'T GOOD. I REALLY WANT TO START THE BOSTON PROTOCOL IF WE STILL CAN AS SOON AS POSSIBLE. HOPEFULLY BY FRIDAY WE WILL KNOW MORE AND NOT HAVE TO WAIT OVER THE WEEKEND. THIS WAITING IS AWFUL. EATING AND SENDS ME TO MCDONALDS IN THE MORNING FOR EGGS, PANCAKES, AND SAUSAGE, HE IS ALSO EATING PUDDING AND HOTDOGS. HIS UNCLE MARK CAME TO VISIT AND STAY WITH HIM ON MONDAY AFTERNOON AND BROUGHT HIM COOKIES, POTATOES, CARROTS, PEACHES, AND BANANAS. JUSTIN DID EAT A HALF OF A PEACH ALSO. HE HAS BEEN PUTTING WEIGHT ON HIS RIGHT LEG AND TOOK A FEW STEPS. HE HAS ALSO BEEN MOVING HIS RIGHT ARM AND FINGERS. HE CAN REACH HIS ARM UP BY HIS HEAD NOW ALSO. HE IS STILL ON OXYGEN AND A CONSTANT DRIP OF NEUBANE THAT HE CAN ALSO PUSH A BUTTON TO GET MORE PAIN MEDICINE WHEN NEEDED. HE PUSHES THAT QUITE OFTEN STILL. HE GETS HIS BREATHING TREATMENTS 4 TIMES A DAY AND IS BREATHING A LITTLE BETTER WITH THAT. NOW THAT HE IS STARTING TO EAT THEY ARE GOING TO CUT BACK ON THE TPN. I WOULD LIKE TO WORK AT GETTING THAT UNHOOKED BY FRIDAY, MONDAY AT THE VERY LATEST IF POSSIBLE. HIS LIVER ENZYMES ARE GETTING QUITE HIGH AGAIN. HIS PLATELET COUNT HAS BEEN DROPPING AND IS LOW, HIS HEMAGLOBIN CAME UP A LITTLE BIT BUT HIS WHITE COUNT DROPPED AGAIN. TOMORROW THEY DRAW HIS AFP LEVEL AGAIN. THIS WILL TELL US IF ANY TUMOR IS GROWING OR NOT. LAST WEEK IT WENT DOWN TO 997 WHICH WAS GREAT. I WILL ANXIOUS ALL DAY TOMORROW UNTIL IT COMES BACK TO SEE WHAT IT IS. JUSTIN'S UNCLE MARK STAYED WITH HIM UNTIL ABOUT 3AM WHEN HE HAD TO LEAVE FOR WORK. I STAYED AT THE MCDONALD HOUSE UNTIL THAT TIME TO GET SOME REST. ERIC AND KAITLIN WENT TO THE LABOR DAY FAIR WITH THEIR GRANDPA BRYCE. THEY WENT ON RIDES AND PLAYED SOME GAMES. AT NIGHT THEY WENT TO WATCH FIREWORKS WITH CHUCK. THE TOOK POPCORN, DRINKS AND A BLANKET TO SIT ON. THEY LIKE THE FIREWORKS. THEY HAD A GOOD TIME. TODAY WHILE TALKING TO THEM ON THE PHONE I HELPED THEM GET THEIR BACKPACKS READY AND PACKED FOR SCHOOL. THEN THEY GOT WHAT THEY WERE GOING TO WEAR FOR THEIR FIRST DAY. THEY ARE GOING TO GET UP EARLY SO THEY HAVE ENOUGH TIME TO PACK THEIR SCHOOL LUNCHES. HAVE A GREAT FIRST DAY OF SCHOOL ERIC AND KAITLIN!!!! TODAY THEY WENT TO THEIR GRANDMA CUMMINGS HOUSE TO SWIM ONE LAST TIME BEFORE SCHOOL. SOON IT WILL BE TO COLD TO SWIM. JUSTIN IS STILL ON TWO BLOOD PRESSURE MEDICINES. HIS TEMP. HAS BEEN GOOD BUT HIS BLOOD PRESSURE JUMPS UP AND DOWN QUITE A BIT. HIS HEART RATE GOES UP AND DOWN WITH HIS PAIN. JUSTIN RECEIVED HIS HOODED TOWEL HE WON IN AUGUST FROM LIN. IT HAS FISH ON IT. A WOMAN WHO IS A CANCER SURVIVOR ALSO SENT HIM A T-SHIRT WITH TURTLES ON IT THAT SHE MADE. I WILL HAVE TO GET A PICTURE OF HIM IN BOTH AND SEND THEM OFF TO LIN. JUSTIN HAS RECIEVED MANY E-MAILS FROM PEOPLE FROM TURTLE HOMES THAT HAVE SENT THEM PICTURES OF THEIR TURTLES AND TORTOISES. HE JUST LOVES TO LOOK AT THEM ALL. HIS TORTOISE BRAVE HAS A HEART ON HIS SHELL. IT IS SO AMAZING. BRAVE IS SUCH A BEAUTIFUL TORTOISE, HIS COLORS ARE SO NICE AND PRETTY. THE HEART ON BRAVES SHELL IS JUSTIN'S LOVE FOR HIM FOREVER. UPDATE: 8-30-02 WELL TODAY JUSTIN HAD AN ECHO CARDIOGRAM TO MAKE SURE THERE WASN'T ANY BACTERIA OR FUNGUS GROWING THERE. IT SHOWED IT WAS OKAY. THEY GOT A NEW MEDICINE THAT WAS JUST APPROVED FROM THE FDA IN, CALLED VORICONAZOLE THAT IS SUPPOSED TO HELP KILL THE ASPERGILLUS FUNGUS. THERE IS STILL ISN'T ANY WORD YET IF THIS IS WHAT IT IS BUT THEY ARE GOING TO STILL TREAT IT FOR IT. WHEN HE WAKES HE IS VERY UPSET AND WORKED UP. HE CRIES AND YELLS AND IS VERY, VERY UPSET. IT TAKES A LOT TO TRY AND CALM HIM DOWN. TONIGHT AROUND 4:00PM THEY MOVED HIM OUT OF ICU UP TO HIS ROOM ON 3A. HE WAS STILL WORKED UP AND ALL UPSET SO THEY STARTED HIM ON A CONTINUOUS DRIP OF NEUBANE NOW. HE IS VERY UPSET THAT HE STILL CAN'T USE HIS RIGHT ARM AND HIS RIGHT LEG IS STILL VERY, VERY WEAK. SOMETIMES HE STILL HAS SOME SLURRED SPEECH. IT IS SO UPSETTING TO SEE HIM LIKE THIS AND SO UPSET WHEN HE IS AWAKE. IT IS SO EXHAUSTING!! CHUCK AND KAITLIN WENT HOME TODAY. KAITLIN HAD STAYED WITH ME AND STAYED FOR AN EXTRA WEEK. CHUCK, MY PARENTS, MY BROTHER DEAN AND MARY CAME, AND MY OTHER BROTHER MARK ALL CAME DOWN LATE TUESDAY NIGHT BEFORE THE SURGERY. ERIC STAYED WITH CHUCK PARENTS AT HOME. WE CALLED THEM AND KEPT THEM INFORMED OF EVERYTHING. CHUCK AND KAITLIN LEFT AROUND 5:30PM TO HEAD HOME. THEY GOT HOME AROUND 9:00-9:30PM. ERIC WAS VERY HAPPY TO HAVE THEM HOME, HE MISSED THEM A LOT!! ERIC AND KAITLIN ARE VERY UPSET WE WON'T BE HOME FOR THEM TO START SCHOOL. THEY WANTED ME TO BE THERE AND ARE SCARED BUT HAPPY THAT SCHOOL IS STARTING. I WISH I COULD BE THERE FOR THEM TOO!! HOPEFULLY WE WILL BE HOME SOMEDAY SOON. NEVER THOUGHT I WOULD MISS HOME SO MUCH. WE HAVE BEEN HERE FOR 7 MONTHS SOON TO BE 8 MONTHS AND IT IS REALLY STARTING TO BE DEPRESSING. THE KIDS AND CHUCK HAVE TO TRAVEL ALL THE TIME AND THAT IS WEARING HIM OUT AND THE KIDS AND A LOT OF TIMES I DON'T GET TO SEE THEM. WE HAVE SO MANY THINGS THAT CHUCK IS TRYING TO KEEP UP WITH AT WORK AND HOME. I JUST WANT OUR NORMAL LIVES BACK AND JUSTIN TO BE WELL AND CURED!! DON'T EVER TAKE YOUR LIVES FOR GRANTED OR SAY YOU LIVE A BORING LIFE BECAUSE IT'S NOT. WE LEARNED THAT AND JUST WANT OUR BORING LIVES BACK AGAIN. ENJOY AND CHERISH EVERYDAY!!!!! WELL BETTER TRY AND GET SOME REST NOW THAT I'M DONE VENTING. I KNOW I'VE SAID THIS BEFORE BUT THANK YOU ALL SO MUCH FOR ALL OF YOUR SUPPORT. IT TRULY MEANS A LOT TO US ALL. THERE ARE SO MANY PEOPLE THAT HAVE DONE SO MANY WONDERFUL THINGS AND WE WILL NEVER BE ABLE TO THANK EVERY SINGLE PERSON FOR WHAT THEY'VE DONE. THANK YOU ALL!!!!!!! UPDATE: 08-29-02 WELL JUSTIN GOT OUT OF SURGERY AROUND 7:00PM LAST NIGHT. HE DID VERY WELL THROUGH THE SURGERY. THEY REMOVED ALL OF THE MATTER THAT WAS ON THE BRAIN. THEN HE WAS TAKEN TO ICU. HIS BLOOD PRESSURE WAS REALLY HIGH. THEY FINALLY GOT THAT UNDER CONTROL AND THEN HIS HEART RATE WAS HIGH AND HIS RESPIRATIONS AND HIS TEMP. WAS AROUND 100.8. THEY FINALLY GOT HIM SETTLED AND COMFORTABLE AROUND 1:00-1:30AM AND HE RESTED OK THROUGH THE NIGHT. TODAY HE IS DOING OK. HIS BLOOD PRESSURE WAS A LITTLE HIGH BUT IS UNDER CONTROL NOW. HIS HEART RATE, RESPIRATIONS, AND TEMP. ARE UNDER CONTROL. HE HAS A LITTLE MOVEMENT IN HIS RIGHT LEG BUT IT IS VERY LIMITED, HARDLY ANY MOVEMENT IN HIS RIGHT ARM AND HIS SPEECH IS SLURRED. THEY SAID IT SHOULD GET A LITTLE BETTER AFTER THE SWELLING IN HIS BRAIN GOES DOWN. WELL TODAY THE INFECTION CONTROL DOCTOR CAME IN AND TALKED WITH US. THEY HAVEN'T GOTTEN A REPORT YET BUT IT COULD BE THE ASPERGILLUS FUNGUS. WE WON'T KNOW FOR ABOUT 3-4 DAYS FOR SURE. A STAPH ONFECTION HAS ALREADY STARTED TO GROW FROM THE CULTURES, BUT THAT COULD BE FROM THE SURGERY IT SELF. THEY ARE TREATING HIM STILL AS IF HE HAD THE ASPERGILLUS FUNGUS. THEY ARE ALSO GOING TO TRY AND CONTACT AND GET SOME NEW MEDICATION THAT WAS JUST APPROVED TO HELP TREAT THIS ASPERGILLUS FUNGUS AND SHOULD WORK BETTER THAN AMPHOTERICIN. RIGHT NOW THEY SAID THE ODDS LOOK MORE TOWARDS THE ASPERGILLUS BUT WON'T KNOW DEFINITELY UNTIL 3-4 DAYS AND SEE IF THE CULTURES GROW ANYTHING. THE FINAL REPORT FOR THIS ASPERGILLUS WILL TAKE ABOUT 2 WEEKS. HOPEFULLY IT ISN'T BECUASE IT IS VERY HARD TO CURE. MAYBE LATER TONIGHT OR TOMORROW THEY WILL MOVE HIM TO HIS ROOM ON 3A BECAUSE HE IS VERY VERY AGITATED IN THE ICU AND THEY THINK HE MIGHT DO A LITTLE BETTER BEING ON THE UNIT THAN BEING IN THE ICU. SAY A PRAYER FOR JUSTIN THAT THIS ISN'T THE ASPERGILLUS. UPDATE: 08-28-02 Later THEY TOOK JUSTIN IN TO SURGERY AT 2:15PM. NOW WE WILL HAVE TO WAIT UNTIL THEY COME OUT AND LET US KNOW HOW THINGS ARE GOING. HE WAS VERY SCARED BUT WAS OK. THEY GAVE HIM SOMETHING BEFORE GOING IN TO CALM HIM. IT WILL BE A WHILE BEFORE WE KNOW ANY MORE. HOPEFULLY HE WILL COME OUT OF THIS OK. UPDATE: 8-28-02 TODAY IS A HORRIBLE DAY!! JUSTIN IS VERY, VERY SICK!! ALL THE FEVERS HE'S BEEN GETTING AND NOT FEELING WELL IS BECAUSE OF A FUNGUS THAT HAS BEEN GROWING ON HIS BRAIN. THEY HAVE TO GO IN AND DO BRAIN SURGERY TODAY AND TRY AND GET THIS FUNGUS OUT. THEY ARE GOING TO BIOPSY IT AND MAKE SURE IT ISN'T TUMOR ALSO. I DON'T HAVE MUCH TO SAY EXCEPT FOR I'M SCARED AND A HUNDRED OTHER EMOTIONS. HE IS GOING THROUGH A LOT TODAY. SAY A PRAYER. He had a good friend Zack who passed away in June from this same fungus on his brain. Justin does not know what is wrong with him. He only knows he will have surgery today. UPDATE: 8-13-02 WELL JUSTIN IS GOING TO BE SCHEDULED FOR SURGERY ON FRIDAY TO HAVE THE TUMOR REMOVED ON THE RIGHT LUNG. THEY WILL HAVE TO DO A THORACONOMY INSTEAD OF A THORASCOPY. WHICH MEANS THEY WILL HAVE TO OPEN UP HIS SIDE AGAIN. HOPEFULLY HE WILL COME OUT OF THIS SURGERY A LITTLE BETTER THAN THE LAST ONE AND NOT HAVE SUCH A ROUGH TIME. WE AREN'T SURE IF THE SURGERY IS GOING TO BE IN THE MORNING OR THE AFTERNOON. WE SHOULD FIND OUT TOMORROW. HE DOESN'T HAVE VERY GOOD LUNG FUNCTION BUT THEY THINK HE WILL BE ABLE TO GO THROUGH WITH THE SURGERY. HE WILL NEVER HAVE NORMAL LUNG FUNCTION AGAIN. THE CT SCAN SHOWED THAT THEIR WASN'T REALLY ANY CHANGE FROM THE LAST CT SCAN. THAT WAS GOOD NEWS. HE IS STARTING TO HAVE SOME PANCREAS PROBLEMS SO THEY ARE GOING TO ALSO TAKE SOME FLUID FROM THE PANCREAS AT THE SAME TIME AS THE SURGERY AND CHECK THAT TO SEE WHAT AND HOW MUCH OF MEDICINE TO PUT HIM ON FOR THAT. THEY MIGHT ALSO REMOVE HIS WARTS ON HIS FEET AT THE SAME TIME. AFTER SURGERY AND HE IS DOING BETTER WE MIGHT USE A NEW PROTOCOL THAT THE DOCTORS GOT FROM BOSTON INSTEAD OF CHEMO SINCE HIS KIDNEYS ARE SHOWING SOME SLIGHT PROBLEMS FROM ALL THE CHEMO HE HAS ALREADY RECIEVED. THE PROTOCOL HAS SOME CHEMO IN IT BUT NOT QUITE AS TOXIC AND DAMAGING. JUSTIN'S COUNTS DROPPED A LITTLE BIT TODAY. HIS WHITE COUNT DROPPED ONE POINT ALONG WITH HIS HEMAGLOBIN AND PLATELETS. HIS LIVER ENZYMES ARE COMING DOWN AND LOOKING MUCH BETTER. THAT IS GREAT. JUSTIN DID GREAT TODAY!!! HE DRANK ONE CHOCOLATE BOOST AND I BIG BOTTLE OF BLUE GATORADE. HE ATE SOME PEANUTS, HAM, CUCUMBER, AND A COUPLE BITES OF A BANANA. FOR DINNER HE WANTED CHICKEN WINGS. WE GOT 20 AND HE ATE 3 AND ONE PIECE WENT UP HIS NOSE WHEN HE COUGHED AND THEN HE GOT SICK TO HIS STOMACH. WHEN HE FELT BETTER AFTER HE ATE 3 MORE AND ENJOYED THEM VERY MUCH. HE WILL WORK ON SOME MORE LATER. HE SAID HE BROKE A RECORD, THAT HE IS PROBABLLY THE ONLY BOY TO HAVE CHICKEN WINGS UP HIS NOSE BEFORE. I AGREED WITH HIM. HE IS SO FUNNY. HE WAS UP WALKING AROUND ALL DAY. HE WENT TO THE PLAY ROOM AND THE CHILD LIFE GIRL GAVE HIM A REMOTE CONTOL WALKING BIG BUG AND A HESS TRUCK. HE PLAYED IN THE HALL FOR QUITE A WHILE AND ALSO PLAYED WITH HIS GAMEBOY. HE HAS FELT GOOD ALL DAY AND IS DOING VERY WELL TODAY. HE IS NOW WORKING ON HIS SECOND CAN OF BOOST BREEZE. HE IS SUCH A TROOPER!!!!! MY GOOD, GOOD FRIEND JILL (ZACK'S MOM) IS COMING TO STAY WITH US FOR A FEW DAYS ON MONDAY NEXT WEEK. WE ARE SO EXCITED AND CAN'T WAIT TILL SHE ARRIVES!!! WE HAVE MISSED HER SO MUCH!!! ADDED: 8-07-02 Hi, My name is Mary B., and my son Justin is 10 Years Old and has liver cancer. Justin had a liver transplant in Feb 2002, and many problems right after for quite some time. He has been receiving chemo now for numerous tumors in his lungs that have spread there. He has had 3 lung surgeries and is and is going to have another one again soon. I'm asking for as many prayers as possible right now and we truly need a miracle. Thank you for praying for Justin. Mary NOTE: Previous updates are available at: http://www.caringbridge.org/ny/justinbryce/history.htm