Billy's Page #25

Fri. 24 Oct. 2003

Billy and Sparky (photo below)
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 its 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 do was inform you all about 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 you should be very worried". 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. This 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. 
What about the photo below, you ask. Well I just snapped that photo about an hour ago. Billy had just finished his homework (schoolwork), 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 past 14 months 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 (inactive) 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. 30,000 children in the State of Florida alone 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. Let's 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.

UPDATE

No sooner than I get Billy's Page updated, we received a phone call from the Director of CMS (Children's Medical Services) 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 of 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 a lot more people than "they" thought to 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::

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

The phone rang at 11:00 am, the voice on the other end asked, "Do you want to take Billy to the Bucs game today? I have 2 tickets on the 50-yard line almost on the field". It was Jack, Garrett's 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 Bucs are Billy's favorite team, as most of you know, and being that we live 30 minutes. 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. This wave bird 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. 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 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.

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 is the link you can visit:
National Marrow Donor Program

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 because, in reality, this can be the last trip Billy will ever take. We will be staying at the Hotel Royal Plaza, and as always, your "well wishes" 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.

CLICK HERE for page #26