Welcome to Billy's Page # 26  {there have been   This counter provided for free from HTMLcounter.com!   visits to this page}

     Tues. 11 Nov. 2003 {Did you shake the hand of a Veteran today ? ... I did}

    Billy at Sea World 11-8-2003Welcome back to Billy's Page . Yes , you can click on the photo if you'd like to see a larger version . Let me say that we took a ton of photo's while at Sea World , Downtown Disney , and EPCOT this past weekend and I'll add some to Billy's Page as time allows , but for now , this one is what I feel is one of the best I hope you like it *wink* . Although we took alot of photo's , I found it harder and harder to do as the time passed . It was difficult to look through the lens at Billy in the wheel chair and not think of what might happen to Him if we are unable to find a bone marrow match in the near future .

    Billy did have a wonderful time this past weekend especially at Benihana's Restaurant where he had his favorite dinner , "filet mignon" (thanks Uncle Juani) . We also surprised Billy by stopping at "Ripley's Believe It or Not" on Monday before we headed home . He was really surprised , and couldn't believe it !! Alicia was amazing throughout the weekend , in that she managed to walk both Sea World and EPCOT . Her legs felt like lead weights after Sea World on Saturday , but she was undaunted by the vastness of EPCOT . I LOVE YOU SWEETHEART , thank you !

    Billy will have his blood counts checked again tomorrow , and we should have some idea as to what we are going to do to defeat MDS . Pray for Billy .

    LATE UPDATE'S !

     Click on the camera image to view the photo's , and click on the "back" button to return here !

     click for a Photo of Billy , Mom , and Dad at Sea World .

     click for a great photo of Billy and a Dolphin at Sea World .

     click for a photo of Billy and Mom with Shamu statue at Sea World .

     click for a Nice photo of Billy and Me .

     click for a Photo of Alicia and I at Sea World .
     Fri. 14 Nov. 2003
    Hello , and welcome back to Billy's Page . What a wonderful day we had today . Billy , Alicia , and I were invited to a day of fantastic fishing and fun at the Steve Yerrid Kid's Fishing Derby held at the Renaissance Vinoy Resort Marina Basin in downtown St. Pete. The derby is held in conjunction with the Chuck LaMar Mercury Grand Slam Celebrity Fishing Tournament , and is staged for the Pediatric Cancer Patients and their Families in the Tampa Bay area . This was the 5th year that this event was held at the Beautiful Vinoy , and all of the kids and their Families had a wonderful day . We were all treated to Lunch , Fishing , and a special visit from the "Mouse" himself ! Yep , Mickey even showed up !! Click here -> . All of the kids were the center of attention , and deservingly so . Billy caught one of the biggest fish of the day , and by the look on his face , he was very proud of it !! The day also included some hands on action in the fish tank . Billy had a very special fishing buddy for the day as well ! Thank you Mr. Russo !! He is the one holding the fish for Billy in the previous photo .

    After the event , we had to rush to the Hospital to make Billy's appointment to have his counts checked *wink* , we just made it !! Although Billy's ANC was at 1000 , his platelets were once again lower . Dr. Grana talked with us about Billy's latest bone marrow aspirate , and said that there was no noticeable change since the last test over a month ago . She informed us that even though Billy is in a pre-leukemic stage (MDS) , it hasn't accelerated as they thought it would have . If there can be a "good thing" , I guess this would be considered one . This gives us more time to find a possible bone marrow donor , and begin Billy's treatment . We are to return to ACH on Tuesday for another count check and a blood and platelet transfusion . Billy is also scheduled for another MRI of his right leg , a CT scan , and an EKG . So..........next week will be a busy one for Billy *wink* . We also had some very good news , Billy's final grade came in for the marking period , he managed to boost that "B" to and "A" , and received STRAIGHT A's in his studies ....(4 A's). It is so amazing that after all Billy has gone through over the past 14 months , that he has not missed a beat in his studies . We are so very Proud of Him .
     Tues. 18 Nov. 2003
    "The search is on " Today Billy was officially added to the data bank for bone marrow transplant patients . His HLA sequence is complete down to the genetic level , and now we must hope and pray we are able to find a match as close as possible to Billy's tissue type . Of course my tests came back as only 1/2 matched to Billy's , as was Alicia's . Since Billy's blood contain's only 1% blasts , he is not going to be given any chemotherapy or radiation at this time . We are hoping that within 6 weeks we are able to begin the transplant process providing a match is found . PLEASE consider being a bone marrow donor ; If not for Billy , then for another person in need of this "life saving" procedure . If you are already on the registry , then please be sure your information is up to date . If you are local , here in the St. Petersburg area , and would like to be tested for compatibility and possible match with Billy Please contact :

    Mati Vizcaino , RN {transplant coordinator All Childrens Hospital}
    801 6th St. South
    St.Petersburg , FL., 33701
    ph: 727-892-8298
    1-800-456-4543 ext. 8387
    fax: 727-897-4803
    e-mail: vizcainm@allkids.org


    If you are not local , Please consider having your blood tested for possible match , and the results sent to the person above , as well as being added to the National Bone Marrow registry . There is a small fee of around $40.00 to have your HLA checked , but if you volunteer to donate blood , and or platelets the fee is waived . The typing takes about 2 weeks before your HLA results are known . Pray for Billy .
     Fri. 21 Nov. 2003
    Billy's day started a bit early today . We were up at 5 am , and at ACH by 6:45 am . Billy had another MRI done of his lower right leg (tibia / fibula), as well as a chest x-ray . Billy's Dr. informed us that this is mandatory for persons awaiting a stem cell transplant , We have to be certain that Billy's ewings sarcoma is truly GONE before the transplant can take place , and for it to be as effective as possible . Billy is also scheduled for a CT scan and an EKG on Monday . Billy also had his counts done again this afternoon , and is now receiving a transfusion of platelets . His ANC has climbed to 2100 from 400 a few days ago , but his platelets continued to decline and are now at 14. , so it was time for a transfusion .

    Billy is beginning to get his features back . He has gained some weight , and is up to 80 lbs , where he was when this whole mess started 14 months ago , and his hair has filled in nicely although very fine . I can almost say that , "I think he has even grown an inch or so " ! I'll have to get out the tape measure *wink* . Please Pray for Billy

    .....THIS JUST IN

    Alicia and Billy just returned home from ACH , and Billy's transfusion . They both had puzzled look's on their faces as they asked me to sit down , my heart sank . Alicia asked Billy to tell me , and Billy proceeded to tell me that Dr. Grana was informed by Mati the transplant coordinator , that after only 3 days in the registry , 6 matches have been found that match at least 6 of 6 antigen's in Billy's tissue type , and 1 match with 8 !! I don't know if I am putting the "cart before the horse" when I tell you this GREAT news , but we all need some GREAT news . I can't for the life of me , think of any better news than this . Alicia , Billy and I gave each other a great big hug , shed a tear , and let out a great big "sigh". I truly feel this news is the beginning of the end to all of the terrible things Billy has gone through in his short life . PLEASE channel all of your thoughts and prayers to Billy in hopes that this is truly what we need to end this Journey , and begin anew .
     Sun. 23 Nov. 2003
    Hello , and welcome back . Ama and Apa arrived last evening . They will be spending a week or so with us on their way to Miami . Billy was happy to see them , as were they happy to see Him . For those of you who are new to Billy's Page , Ama and Apa are Alicia's Parents , Billy's Grandparents . They were very happy to see Billy looking as good as he does ; with some hair , and a few extra pounds . The last time they saw Billy was in PR at Juani's Wedding in August .

    Excuse me while I settle in for some "football".................
     Wed. 26 Nov. 2003   " HAPPY THANKSGIVING " 
    Hello , and welcome back to Billy's Page . Billy had his counts checked again this afternoon , his platelets rose to 24 (from 14) , but his red blood counts were lower . His ANC also dropped to 500 (from 2100). We will be going back again on Monday , and Billy will most likely get a transfusion of both platelets and red blood . Being that Billy will be getting a BMT (bone marrow transplant), they really don't want to transfuse him alot for fear of rejection .
    We also saw Dr. Letson , Billy's surgeon . It seems that Billy's Hemo/Onc Dr.s were concerned about what they saw on Billy's MRI that was done on Friday (We found out about their concern the day before yesterday). So, the past couple days have been a bit tense , to say the least , thus the lack of updates *wink*. Dr. Letson assured us that the MRI was "clear" of any tumor , and that what they saw was fluid around the rod (prosthesis) in Billy's tibia . This is a normal healing process , just slowed down by Billy's condition .

    For those of you who celebrate the Holiday , I would like to wish you all a very Happy Thanksgiving , from Our Family to Yours .



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