Wed. 25 Sept. 2002
Hello 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 U.S. 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 leg. This, the largest bone in the body, will be replaced by an artificial (expandable) prodthesis. This will include his hip joint, his femur 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 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 knows 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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