Welcome back to Billy's Page #31 {there have been  This counter provided for free from HTMLcounter.com!  visits to this page}

     Mon. 19 Jan. 2004 sun and rain

    Hello, glad you found your way over here, *wink*. I want to take a second to acknowledge the recent entries in Billy's Guest book. Thank you guy's for the encouragement, kindness, thoughts, and Prayers. We truly draw strength from them (you). Billy had a good day today, and his fever has been held at or below 99°. He is a bit more "up beat", and spent the majority of the day with his game cube ! Dr. Grana visited with us today and informed us that Billy will have an MRI of his leg done tomorrow, and await the results and consultation with Dr. Letson before anything is decided on the next steps to be taken. One good thing is that, the blood cultures are not showing any bacterial infection growing. Alicia and I couldn't hide our emotions from Billy, and we were honest with him and told him what we know. Yes, he was a bit upset, but he said, "as long as we do everything to save my leg, I'll be happy". He knows he may lose it, but also knows there are options before that step is taken. I'll explain those options as they come to be.
    Billy's bone marrow aspiration was put off once again, and we hope to get it done in the morning. Billy also has an appointment with the dentist in the afternoon to get some work done while he is on antibiotics, and before his BMT. It will be impossible to get anything done for the next 9-12 months while he is recovering from his BMT. We were also informed by Mati (bone marrow transplant coordinator) that they should have the results from the 3rd possible bone marrow donor tomorrow, then they can make a decision as to which of the 3 donor's will be the one for Billy. Then, after they decide which donor will be the best "match", we have to pray that the donor will agree to go through with the donation. By The Way...........Saturday was the 1 year anniversary of Billy's surgery, *wink*. ..Pray for Billy"
     Wed. 21 Jan. 2004 sunshine
    Hello, and welcome back to Billy's Page. Billy is in good spirits, and is looking forward to "possibly" coming home today. Billy's visit with the dentist yesterday went well, with no concerns as to his oral health. Billy had his MRI done late last nite, and we are awaiting Dr. Letson's interpretation. Billy will also have the bone marrow aspiration done around noon today, it was put off due to Billy's fever. We will continue to administer Billy's antibiotics while he is at home, for at least the next week or so, maybe longer. I will update you further when Billy gets home this afternoon.

    .:: 7:00 pm ::.  Home !
    Hello again. Billy is home from the Hospital, and resting in his own bed *wink*. Billy's bone marrow aspiration went very well, and we should have the results in a few days (fingers crossed). We also brought home all the supplies for administering the antibiotics for the next week or so (Click Here). As you can see by the photo, there is alot involved, but it beats being in the Hospital *wink*. We were also informed that the third donor results are in and to everyone's amazement, it too was a 8/10 match. We were "floored" over this news. Dr. Petovic will be contacting the 25 year old male to request he be the donor, lets pray that he will agree to donate the stem cells Billy so desperately needs to survive.
    There was a great big extravaganza today at the Hospital to introduce to the public the new plans for the "New" All Childrens Hospital. A few weeks ago, Billy was asked by the staff of the Hospital to take part in the new design features of the new hospital. He was asked to draw what he would like the Hospital, and the rooms to look like. I am proud to say that his drawings were chosen to represent the opinions of the patients (Children) who will be staying at ACH in the future. All of the local news stations were on hand to cover the Party that was held, and it was all broadcast on tonight's evening News. Billy's drawing, along with 2 other entries were center stage for all to see !! The new Hospital, complete with ALL private rooms, will cost 270 million dollars, and will be complete by 2007. It will be located about 3 blocks north of it's present location.

    Billy's blood counts today were : WBC @ 1.72, RBC @ 3.20, Hemoglobin @ 9.8, and platelets are down to 44.. His temp. has been at around 99° for the past couple days, and his leg feels much better. We still are awaiting Dr. Letsons' interpretation of the MRI to see where we stand. Billy will return to ACH on Friday to have his counts checked again.

    updated
    We were in touch with Dr. Letson (Billy's surgeon) late last 'nite, and he laid out for us what we are up against as far as the prognosis if Billy's infection is not controlled, or controllable.
      What we know :
    • The current regimen of IV antibiotics does the job, and keeps the infection under control through the BMT process, and he will then be kept on oral antibiotics. Billy keeps his leg, recovers fully, and puts this mess behind him.
    • The current regimen of IV antibiotics can not control the spread of infection, and the prosthesis must be removed, and replaced with an "antibiotic spacer" until Billy's BMT is done and has been successful. At which time his prosthesis will be re-installed, and we'll be faced with another year of rehabilitation.
    • The fact that Billy's suppressed immune system will render his body defenseless on it's own during the BMT process, and the infection can not be controlled even after an antibiotic spacer is installed, Billy will lose his leg, but will survive if the infection is controlled.
    • The infection can become so invasive, that Billy's defenseless body and all the antibiotics in the world can't save him, and we lose him.
    As you can see, we were presented with everything that can happen to Billy as we proceed with the "healing process". We will be facing some very difficult decisions if things don't go well. Please, PLEASE, continue sending your thoughts, and Prayers for Billy; we promise to be strong in the battles ahead.
     Thur. 22 Jan. 2004 sunshine
    Hello, and welcome back to Billy's page. We had a very stressful day today. During Billy's 2pm antibiotic infusion he had a terrible reaction. Billy was in the middle of his tele-class and began to experience terrible itching, and burning sensation all over his upper torso, and head. It was so unbearable that he couldn't control his actions. We disrupted his lessons, and called the Hospital for advice, to which I was told to bring him in immediately, we were there in 10 minutes. Alicia was on her way to the airport to pick up her Mom so she had no idea. Alicia and her Mom (Ama) are heading down to Miami tomorrow afternoon for Juani and Guaydia's " SURPRISE" baby shower, and will be gone until Monday. Alicia got all upset, as any Mom would, and stopped at the Hospital on her way back, Billy was fine by then. Billy was given about 15 cc's of benadryl, which not only put him to sleep, it acted quickly to relieve the symptoms he was having. Billy will be admitted to the Hospital over nite for observation. This reaction is typical to the antibiotics Billy is taking, it just took some time to show itself *wink*. When Billy is released tomorrow, we will be giving him 5 cc's of benadryl before each of the infusions from now on. Boy, I'll tell 'ya, Billy was really scared *wink*...................me too !
     Fri. 23 Jan. 2004  ( 727-898-7451 Room # 261 bed B )
    Hello, and welcome back to Billy's Page. Today has been filled with up's and down's, as well as twist's and turn's *wink*. This update finds Billy is good spirits. It is 7:30 pm, and I just finished what was a very long day at the Hospital. Billy will be kept in the hospital for the weekend (until Monday) so the staff can keep a close watch on how well he handles the additional antibiotics that were added to his regimen. They want to monitor the first few days to avoid any future reactions, so he may continue at home. Dr. Petrovic, Dr. Letson, Dr. Barbosa, Dr. Grana, and the infectious disease Dr., will meet with Alicia, Billy, and I on Tuesday to discuss the path we will follow through the transplant process regarding Billy's leg. I will let you all know as soon as possible. Things are looking fairly hopeful that the antibiotic regimen will keep things under control.............for now *wink*. Billy's bone marrow results are back as well. There has been an increase of blasts (abnormal cells) in Billy's bone marrow. The count is up to 6%, from 3% last month, which is why we are proceeding more quickly with the transplant process. We are looking at the 10th of February for the Transplant to be done. Billy will remain on the high doses of antibiotics throughout this process, 2-4 months.

    How 'bout some "ups" ! We learned late this afternoon that the donor that was chosen for Billy's transplant turned out to be a 10/10 match, as close to perfect as you can get ! And if that wasn't enough, the 2nd donor on the list of 4 was also a 10/10 match, both were 8/10 a week ago! The whole cancer ward (2SW) let out a sigh of relief. Lets hope and Pray that the donor will now complete the process, and donate the stem cells Billy so desperately needs.

    Of course, Alicia was so very happy to hear such GREAT news, and was sorry she wasn't here to witness it. She really hates to be away from Billy, we had to almost force her to take some time off and enjoy her time in Miami with her Family, and the Baby shower. I know the next two days will seem like a lifetime to her, but Billy gave here a "Big Hug" over the phone, and told her that this is a "guy's only" weekend !! As a Friend said, "alot of belching, and butt scratching!"...............a guy thing!!.............Pray for Billy................
     Sat. 24 Jan. 2004 sunshine
    Billy (1-24-2004) Hello, and welcome back to Billy's page. Billy was up bright and early this morning, and in good spirits, besides missing "Mommy" terribly *wink*. Billy is handling his antibiotics quite well, with no adverse reactions. Billy and I spent the whole day with the play station II, with a stroll down the hall's every once in a while . The photo here is as Billy was battling the "Dragon Ball Z" video game. I always have the digital camera with me at the Hospital just in case I catch a moment like this !! Check out the look on his face ! Click on the photo to see a larger version of the photo.

    Dr. Barbosa ( the head of the Oncology Dept.) came up this morning to see Billy, and was so very excited for him that such a GREAT donor match has been located and activated. Dr. B was also happy to see that Billy is regaining some strength in his leg, the fever is down, and there is no pain. These are all GOOD signs that the antibiotics are working as hoped. We should hopefully be able to go home on Monday, and continue the treatments there.

    I want to thank those of you who have sent in your "feed back" to me via the "new" form below. It is very important to me (us) to know how you feel about "Billy's Page". Don't forget, this is very therapeutic for me, and was intended to be so, at the same time keeping all of you informed as to "Billy's Journey". I will leave the form up for a few more weeks, and will appear on the next few pages, so please let us know how you feel about what you read, and don't forget the Guest book and Forum are also great ways to keep in touch *wink*. On the Forum, you can also reply to other entries as you see fit..........Pray For Billy............
     Mon. 26 Jan. 2004 sunshine Home !
    Hello, and welcome back to Billy's Page. Billy was released this afternoon, and we are HOME ! Billy has handled the Vancomycin, and zosyn with no further difficulties. We will pre-medicate Billy with 25mg of Benadryl before his vancomycin is administered.

      medication schedule :
    • zosyn will run over 1 hour IV @ 1pm, 9pm, and 5am
    • vancomycin will run over 2 hours IV @ 2pm, 10pm, and 6am
    • Benadryl 25mg will be administered @ 1:45pm, 9:45pm, and 5:45am
    ...Calling Dr. Bill, calling Dr. Alicia.......*wink*
    We have an appointment with the transplant staff tomorrow afternoon to finalize the procedure, and make sure everyone is on the "Same Page". Billy has to return to the Hospital on Wed. for blood counts, and possibly another blood transfusion. On Thursday Billy will be having a hearing test, as well as a test to record his lung capacity. On Friday it is back to the Hospital for another blood test, and possibly a platelet transfusion, and to have his catheter replaced. What a schedule, don't 'ya think ,*wink*.
    Alicia should be home some time later this evening as well, Billy really misses her. Again, thank you all who have taken the time to "tell me what you think" buy taking part in the feed back form below. I plan to place a few of the responses on a separate page for all to see what Billy's visitors have to say about Billy's Page. We should have the word from the donor sometime tomorrow as to if he is willing to proceed with the harvest of the stem cells. Please pray for him and Billy.
     "This Just In"......Here is a photo I took of Billy and I in ACH just before we got ourselves ready to head HOME !!
     Wed. 28 Jan. 2004  ( 727-898-7451 Room # 269 B)
    Hello, and welcome back to Billy's Page. Today started with a phone call from Dr. Letson, Billy's surgeon at 9am. Alicia answered the phone, and began to cry. What can possibly be wrong now, haven't we cried enough? Dr. Letson informed us that the infection in Billy's leg has gotten worse, and that he wants us to go to the Hospital. What do we tell Billy? We were getting ready for tele-class, But told Billy that he wouldn't be attending class today. Alicia was so very upset that she couldn't stand to tell Billy what had to be told, she can't stand to see Billy hurt. I began to explain to Billy what is about to happen, and he wept. It is getting so hard each time I (we) have to explain to Billy that something has to be done, and not to worry. Billy is such a bright and intelligent Child, that he knows, before we even have the chance to say. He is so scared, and our hearts ache. It took a good 4 hours before Billy calmed down enough to catch his breath. Billy's Hemoglobin was at 5.1, he was as pale as a ghost, his energy level was non-existent, I've never seen him so sad. He reached for me a few times during the day, and huged me tight. I had to leave the room a number of times because I couldn't control my emotions. Alicia was as strong as she could possibly be. She had to leave and get her injection today, which just compounded the situation. Billy draws so much strength from her, and hurts when she hurts. Billy was visited by our Priest this afternoon as well, and was blessed with the oils, and Prayed over.
    Dr. Petrovic was able to converse with Dr. Letson, and agree that Billy will receive large quantities of platelets, and a few units of blood tonight, and a few more tomorrow morning before the surgery is done to remove the infected prosthesis in Billy's leg. Billy's artificial femur and knee will be removed and replaced with an antibiotic "spacer". This was one of the options open to us regarding a successful BMT. The chances of success were greatly diminished by the infection in Billy's leg, and this is the only option now open to us, everyone agreed. This spacer will replace the prosthesis until the bone marrow transplant has grafted, and is successful. The spacer will help to remove any infection that is in Billy's leg, it is impregnated with antibiotics. Billy will receive a new prosthesis when he is strong enough to go through another major operation. We don't know as of yet, what time tomorrow the surgery will be, but as always, I'll do my best to keep you all informed. The phone number to the Hospital is located above, if you'd like to call.

    Today's heart breaking news did come with some good, or should I say "Great" news. Billy's donor has agreed to the bone marrow harvest, and Billy's bone marrow transplant is now scheduled for February 24th.
    PLEASE Pray for Billy..................

    updated Billy's surgery will be at 11:00 am tomorrow 1-29-2004

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