Wed. 25 Sept. 2002
ello to All our Friends . Thank you for turning the page on our Journey with Billy , this is Page # 2 in Billy's Journal .
Please forgive me if I tend to " ramble " a bit , but it is late and we've been at the Hospital for about 14 hours .
I had to come home for a bit to wind down some , Alicia is still at the Hospital with Billy .
Let me try to bring you up to date . First , some Great news . Billy's CT scan ( cat scan ) Did show that his Cancer has NOT spread beyond his leg ,"grin"
Now , please ; if you do not want to hear what the Prognosis is , and the course of action that will be taken to CURE Our Son , please stop reading at this point .
It was hard to hear what the Dr. had to say , and just as hard to write it . First of all , the Dr. that will be Performing the needed surgery on Billy
is one of only 4 Dr.'s in the southeast that performs this type of surgery on Children , and Specializes in Cancer cases , and re-constructive surgery . Note : I will probably reword this after I get my head on straight ,
but I wanted to get this posted and update you all .
Well.......... Billy was admitted to All Childrens Hospital at 8:00 am . He was prepared for surgery about noon , and was operated on at 1:00 pm . A biopsy was
performed on his right thigh ( femur ) by an insision where he could access the Bone and soft tissue . A 1/8 th inch hole was drilled into Billy's femur ,and a sample was removed , as was some tissue .
at the same time , a chest port was installed in his upper right chest area to accept his medication and Chemotherapy treatments . After about an hour into the surgery , Dr. L-- came to the family waiting room to meet with Alicia and I .
He was very cordial in his explanation that :
He will MOST LIKELY start Billy on 2 1/2 months of Chemotherapy , followed by the removal of Billy's right hip , including two thirds of his right femur .
He also brought to our attention that he found another " possible " tumor just above his knee of the same leg . Upon results of the biopsy tomorrow ( as to which type of the 2 Cancers it is ), Dr. L-- will decide wheather he would remove the entire femur , including the knee .
In either case , Billy's hip and at least two thirds of his femur will be removed , and replaced with an artificial hip and prosthetic ( expandable ) femur , with additional surgery as needed for growth . Dr. L-- also informed us that Billy will need at least 1 year of Chemotherapy , and physical therapy .
Because some of the soft tissue and muscle will be removed , Billy will probably always walk with a limp , and have some weakness in that leg . He already knows that he won't be the next Quarter back for the Buccaneers ! ( Our local Pro Football Team ) *wink* .
We also learned that this case IS a rare one , in that only 1000 cases are diagnosed per year , compared to 250,000 cases of breast cancer . This CAN be curable , and for this we Pray .
Billy is in room # 276 in All Childrens Hospital in St . Petersburg , Florida 33705 . I don't know how long he will be in This room , or the hospital ; so if you like to send a " Get Well " message via snail mail ( regular mail ), you can send it to :
Billy c/o 4013 Bluefish Dr. S.E.
St. Petersburg , FL. 33705
Thank you all so much for your Prayers . Good night .
Thurs. 26 Sept. 2002
Hello again . Let me say on behalf of Billy's Mom and I , thank you all so very much for the love , Prayers and support you've showed since this journey began one week ago today .
Let me spend some time on some good news for this update , which will be a short one due to the lack of a " Definite " Diagnosis which was due this afternoon . Billy is still un-aware of the " C " word .
Alicia and I were going to explain his complete situation to him today as well , but held off for the same reason as above .
Billy ate very well today . He was able to relieve himself as well . The Hospital staff installed his Play Station for him in his room so that he can play with it . He had many visitors today , and was a bit overwhelmed by the crowd
and " voiced his opinion " . His classmates sent cards along with Billy's Teacher who visited him as well , ( Thank you for coming it ment alot to us )
. As I said earlier , this update would be a short one . I had focused all of my energy on the fact that we would have a " beginning , middle and end " today , and will now have to wait till tomorrow . I am totally wiped out . I will , along with Alicia , regain some strength
and face the facts tomorrow morning . Please say your Prayers , and guide the Dr.'s words to us so that we can be strong for Billy . Good night .
Sat. Sept. 28 2002
Goodmorning All . I could not access this site last night , which is why I hadn't updated you as to Billy's progress in his Journey to a Cure .
Yesterday was a very busy day , and quite emotional . We were brought up to date as to the complete Diagnosis . Billy had another MRI ( magnetic resonance imagining )
done on the lower end of his femur ( above his knee ) to get a better image of the second tumor . Billy also went through a thourough bone scan to see if the Cancer had
spread beyond the leg . A bone marrow aspiration and biopsy was also done . Billy was sedated , a large needle was inserted into each of his hip bones ( right and left ), from the back . A sample of his bone marrow was taken for biopsy .
More blood was drawn as well .
Final Diagnosis : Billy has Ewings Sarcoma , the second most common childhood bone cancer . the cancer has invaded two thirds of his femur in two locations .
The cancer in ONLY found in his leg , and has NOT been found in his Bone marrow , or any other organ . The Dr.'s who are handling Billy's case agreed as to what SHOULD be done . They confronted Alicia and I after review of the final results of yesterdays tests .
Alicia and I were in total agreement that no chances were to be taken as to the cancer being left in Billy's leg . Chemotherapy will be started today , or tomorrow . After 2 to 3 months of treatment , Billy will have an extensive operation to remove , and replace the entire femur of his right . This , the largest bone in the body , will be replaced by an artificial ( expandable ) Bone . This will include his hip joint and upper knee joint . I will go into more detail in the coming days .
Following the operation , Billy will need another 10 months or so , of chemotherapy . As he grows , the new femur will be lengthened by a simple operation in which a couple screws will be turned on the artificial femur bone causing it to expand .
Because some muscle will also be removed in the clearing of the cancer , Billy will also need extensive physical therapy over the next year .
Alicia and I had a long talk with Billy after the Dr.'s Diagnosis , and informed him that his tumor was in fact malignant . We included the " C " word ( cancer ) in our conversation for the first time . We told him that he was now a very special Boy , in that he will be a " Cancer Survivor ". He understood ( as we knew he would ) why we didn't say anything until we had the Final words from the Dr.
He now knows that even though his GrandMother ( my Mother ) passed away from Cancer , not everyone will . Which leads me to say , " We are not invincible , we are just Lucky ". Any of us , for any reason , on any day , will fail to wake up . We are just lucky that everything works in tune to keep our bodys alive , to keep that car from hitting us ; or that plane from crashing . We are Lucky to have our hearts beat for a liftime , nomatter how long it is . We are also lucky to have the knowledge we do in order to save the lives of those we love even though it is financially out of reach .
We are Lucky to be Loved for , cared for , and prayed for . It could have been you , it could have been me , and it still might . Till now , we have just been Lucky , not invincible . Bye for now .
Quick update :
Billy's Dr. agreed that it would be great for Billy to Go Home for the weekend , so we came home . It is nice to have him Home if only for a couple days . We have to be back at the Hospital at 1:00 pm on Monday . We are going to start our Chemotherapy Monday afternoon . We will have to be in the Hospital another 4 - 7 days depending on how Billy tolerates the Drugs . he know what to expect ,
and is anxious to start his recovery process .
He came to the computer to read the remarks in his guestbook , and Thanks you all from the bottom of his heart , and hopes you all will follow him on this Journey .
Sun.29 Sept. 2002
Billy truly enjoyed his weekend at Home . A few of his Friends came to spend some time with him . Billy asked if we could go to the Photo Studio and have a Family photo taken
before he loses his hair , So we went this afternoon to have a few Photo's done . I will try and post them here for you to see when we receive them . Billy has to be at the Hospital at noon tomorrow , he is going to start his first session of Chemotherapy .
We were told that he should be in the Hospital at least 3 days , maybe longer depending on how well he tolerates the Drugs . Thank you all again for your prayers , and Thank you Ms. Stang for the Lazagna !! Billy , Alicia and I Loved it !! Plenty more for Tomorrow as well !
Good Night .
Mon. 30 Sept. 2002
Welcome back *wink* . Billy enjoyed yet another day at home . The Dr. informed us that he could take advantage of the day........so we did ! We are due at the Hospital at 9:00 am to continue Our Journey .
Billy had a friend over till 10 pm last night , and has another friend over as we speak . Here he is with Billy , His name is Dyami Wilson . We're Glad he can take advantage of this Special Time . His Tampa Bay Buccaneers Won yesterday in a Big way , and it put the icing on his cake !
They are 3 - 1 so far this season .
Billy has been in good spirits while home , and is eating well . He is up to the task at hand , and is looking forward to getting on with it . He spent some time on the computer today , and is quite amazed at the
amount of Love there is out there , and where it's coming from . To tell 'ya the truth so am I , It makes having to write about it alot easier . I don't know what I would do if it were'nt for all of you , and your prayers .
It is truly uplifting . Thank you .
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