Welcome Back to Billy's page # 25

     Fri. 24 Oct. 2003

    Billy and Sparky.....click for larger photo {click photo for larger version} Please forgive me for keeping you all in the dark regarding Billy , I assure you it was not an intentional act of selfishness . You all have been by Billy's side for the better part of 14 months , and saw him battle and defeat his "cancer monster" known as ewings sarcoma . Yes , I can say defeat because his Dr. truly believes that his ewings sarcoma will not show it's ugly face again . I have had no truly substantial information about Billy's new "Monster" other than what I had posted explaining what we've learned about it . All I could really do was inform you all on what we are about to face . I hope you'll bare with me (us) as we too , learn what's ahead of us .

    Billy visited the Hospital today to have his counts checked . As we expected , his counts were low . His ANC was 500 , and his platelets were at a low 51. . Dr. B pulled no punches when he told us that he was "very concerned" about what he is seeing . I asked if we should be worried , and he said "YES" . Billy will have a second bone marrow biopsy and aspiration done on Nov. 7th , at which time the results will tell us what course of action we will be taking , a BMT (bone marrow transplant) is in the near future . Which brings me to the point where I must ask...............no, beg any of you who are willing to be a possible donor to please contact us by any means possible , and let us know of your intentions . I will pass on all pertinent information to you when it is known by us . You can find all of our demographics on Billy's info. page {CLICK HERE}, or click on the little envelope below and e-mail me .

    What about the photo above , you ask . Well I just snapped that photo about an hour ago . Billy had just finished his homework (school work), and he just "dozed" off . I could have stood there for hours and stared at him . Good-nite .
     Wed. 29 Oct. 2003
    Hello , and welcome back to Billy's Page . Please forgive me if I "explode" in your face with today's update . We are just about at our wits end with all that has transpired over the past couple of weeks . Not only did we find out that Billy's cancer treatment over the paste 14 month's could have possibly given him MDS , but a week after that dreadful new's we were informed that Billy NO LONGER qualifies for his Medical Insurance , and his coverage will expire on the 31st of this month , yes , in 2 days . You see , My disability pmts. have started ,and combined with Alicia's we now make "too much" money . Can you stomach that ? We are both on disability , and make "too much" money to qualify for Billy's medical coverage . Alicia and I don't need funds for medical coverage...............BILLY DOES. So , after 14 months of treatments , Billy is shoved out of the picture and into the bowels of Florida's "Kid Care" program which is a Joke all to itself . CLICK HERE to read all about what a local St. Pete. Times columnist had to say about this terrible situation after he met with us the other day in our home . We are not alone in this , not by any stretch of the imagination . There are 30,000 children in the State of Florida alone who are in dire need of medical care , and find themselves on a "waiting list" . These kids don't have colds , they have cancer and other life threatening conditions . These children are our "FUTURE" , and something needs to be done NOW , or we'll have no future . On the link above there is a place to e-mail your comments , it is located just below the photo of the author . This is about 30,000 children.....................not just Our Son , please understand that . Lets do something about this atrocity . Even if you don't live in Florida , this could be the case in your State as well . PLEASE HELP our children .


    No sooner than I get Billy's Page updated , we received a phone call from the Director of CMS (Children's Medical Service's) in Our State Capitol . We were informed that Billy's medical care would NOT be interrupted in any way . Was it because we kicked up the dirt over the past couple weeks regarding "the system" ? Was it the fact that we got the News Media involved in this outrageous situation regarding the children of Florida ? Was it the fact that alot more people than "they" thought care about the future of our children ? You better believe it was , and this is only the beginning . How many other Parents will get the same phone call we received , saying that their child will have the medical coverage they deserve , and need ? If we can help , every one of the 30,000 children will have the very same chance at life as we did . Not only the children of Florida , but every child in this Great Country of Our's .
    :: Thank you All for your Support on this one ::

    Please use Billy's "FORUM" below to voice your opinion's , and or vent your frustration's .

    Click here ->"These children need health care" to read an article in today's (10/30/03) St. Pete. Times in response to the Child Health care situation in Florida . This is the voice of one of Billy's Teacher's . Thank you Ms. M.
     Sun. 2 Nov. 2003
    click for larger photo {click photo to view larger}The phone rang at 11:00 am , the voice on the other end asked , "do you want to take Billy to the Buc's game today ? I have 2 tickets on the 50 yard line almost on the field". It was Jack , Garretts Grandfather on the other end ! Garrett is one of Billy's Buddies from ACH . Garrett is also a cancer Kid . I asked Billy if he'd like to go , and he screamed !! YES , OF COURSE !! The Buc's are Billy's favorite team , as most of you know , and being that we live 30 mins. from the Stadium , we were on our way ! It was our 1st time at a Buc's Game , and it was very exciting to say the least ! It was also brutally HOT ! We had a Great time at the game although the home team lost a close one 17-14 .

    Thank you Jack for the tickets , Billy and I had a wonderful time .
     Wed. 5 Nov. 2003
    Let me first say "Thank you" to the Lee Family (especially Taylor and Cody) for the gift Billy received today {click the photo to see a larger one !}. This wavebird wireless game cube controller was on the top of Billy's Christmas list !! and as you can see he is wasting no time breaking it in !! I can honestly say that this gift came at the most opportune time . We received the written results , and verbal explanation as to Billy's condition {click here} . Our Family is devastated to say the least , and we can only hope that we will find a bone marrow donor with a match . We have already started the process , and any and ALL help with this search is urgently needed . We will graciously accept ALL offers from possible donor's , and if you are currently on the bone marrow registry , please let us know . Things are going to be happening very quickly , and I hope to be able to keep you all informed as to our progress . Please forgive me if the updates are slow to come , this is very hard for Alicia and I .

     Click to see a "Smile" you'll not soon forget .

    If you are on the bone marrow registry PLEASE be sure your info. is up to date . If you are not on the bone marrow registry , PLEASE consider it . Here are a couple of links you can visit :
     National Bone Marrow Transplant Link
     Blood and Marrow Transplant Info. Network
     National Marrow Donor Program
     Aplastic Anemia & MDS International Foundation , Inc.
     Thurs. 6 Nov. 2003
    Billy had his counts checked again today and Billy's counts continue to drop . His ANC has dropped to 400 , and his platelets are now at 26 . Billy will be receiving a transfusion of platelets this afternoon to try and boost his counts a bit .

    Alicia and I are taking Billy to Disney (Epcot) , and Sea World for the weekend . Billy's Dr. said it would be OK , and highly recommended . We will be staying at the Hotel Royal Plaza , and as always , your "well wish's" are welcome .

    Although Billy's mind isn't overwhelmed with possible circumstances that go with his new diagnosis , I find myself lost in all that is about to hit us "head on" , BUT , We will enjoy ourselves this weekend , take some photo's , and cherish every waking moment .
    We'll see you when we get home . Pray for Billy .

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