Billy's Page# 34



Welcome back to Billy's Page #34, There have been  This counter provided for free from HTMLcounter.com!  visits to this page !

bpbullit Tues. 10 Feb. 2004 sunshine
Welcome back to Billy's Page. I hope you found your way here without any obstacle's in your way. As I mentioned in the previous page #33, I have changed a few things around as to the look and feel of Billy's Page. I wanted to put forward a more subtle look, and feel, kind of "tranquil" if you know what I mean*wink*. I feel this update is a bit easier on the eyes, and less cluttered. At the top of the page you can find a JS menu to a few of the most frequently visited pages of this web site, and toward the bottom of the page you'll find a new "Image Map" that will help you navigate Billy's Page. Simply click on the "text" of the page you'd like to visit and "poof" off 'ya go ! It's that simple. I will continue to incorporate all of the icons I've used on previous pages, and i hope you all can get comfortable with the "New Look" of Billy's Page. As always, Billy's Page is fabricated to be best viewed on the MSIEŽ web browser, version 3 or better, in 800x600 screen resolution. Although I try to satisfy all visitors to Billy's Page, Billy's site counter shows that 98% of the visitors are using Internet ExplorerŽ to view Billy's Page. As usual, you can send me your comments via the "feed back" form located by clicking the link below. Thanks again for your continued support, thoughts, Love, and prayers.
bpbullit Wed. 11 Feb. 2004 partly sunny
Hello, and welcome back to Billy's Page. Well, I didn't get any "negative" feedback on the "new look" of Billy's Page, so, I guess I have your approval as well *wink*, Thanks !

Billy's visit to the Hospital today included a platelet transfusion, and some blood work besides the usual CBC, which was : ANC @ 1900, WBC @ 3.0, RBC @ 3.38, Hemoglobin @ 9.4, and platelets were down to 26., hence, the transfusion. Billy's medi port was accessed today for the transfusion, and he will remain accessed for at least a week in case he needs to have more blood work done besides the normal CBC 2 times per week. Billy also had a pulmonary function test done today to get a baseline reading for his lung capacity. This will be monitored throughout the BMT process. Billy was happy to know that his fluid intake can be reduced as of today, back to more "normal" levels. He had to consume at least 96 oz of fluids per day until his kidney levels were reduced, and now that they are, he can cut back to 50 oz or so. Billy's potassium levels are still a bit low, so the daily banana will be on the menu *wink*.

Please welcome Our new Friend Dustin to Billy's Prayer List (CLICK HERE). Dustin was diagnosed with Ewings Sarcoma in the right hip in Oct. 2003. Dustin is 12 years old, Please Pray for him and his Family.
bpbullit Fri. 13 Feb. 2004 partly sunny 82°
Hello, and welcome back to Billy's Page.This update finds Billy in good spirits. I would like to announce the newest Arrival to our Family, with the Birth of a Daughter last night to Alicia's Brother (Billy's Uncle) Juani, and his Wife Guaydia. A Beautiful Girl named Adriana Sofia, Born: Feb 12, Time: 8:02pm, Length: 18 inches, Weight: 6.47 pounds, and a head Full of hair! (CLICK HERE) CONGRATULATIONS ! Today's blood CBC was : ANC 1700., WBC @ 2.9, RBC @ 3.16, Hemoglobin @ 8.9, and platelets were @ 69. By the looks of it, Billy will most likely need a transfusion (red blood) on Monday, we'll see *wink*.

Billy wants to thank the McLeod Family (Michigan), and Mrs. Cartier (Billy's former Teacher), for the Cards he received today, Thank You !!
bpbullit Sat. 14 Feb. 2004 Sun and rain "Happy Valentines Day"
Hello, and welcome back to Billy's Page. I hope this update finds you all in good spirits. Billy is doing just fine, although his leg has been a bit bothersome lately, he won't let it slow him down. Billy sends his Love. We went out for dinner to one of Billy's favorite places, Sonny's Bar-B-Que. Billy just loves the ribs and pulled pork, and today was "all you can eat day", and we did! What a mess, finger lick'en good !!*wink*!! I want to say thank you to Ama, for the card and Gift Billy received today in the mail, Thank You, Billy say's "I Love You Ama"!

Alicia and I are catching up on some much needed rest, as Billy spends some time at home without the pumps, and interruptions. Sleeping through the 'nite is a real pleasure, one we are sure not to get too used to, as Billy will be admitted to ACH in about 2 weeks. There has been no sign of the fever since the prosthesis was removed, so with a little "Luck", we should be able to remain at Home till the 23rd. Thank you all, once again, for your Thoughts, Love, and Prayers.
bpbullit Mon. 16 Feb. 2004 partly sunny
Hello, and welcome back to Billy's page. This update finds Billy in good spirits. A visit to the Hospital this afternoon shows Billy's counts at : ANC @ 1200, WBC @ 2.1, RBC @ 2.91, Hemoglobin @ 8.0, and platelets are @ 42.. Once again I'll point to the "NORMAL" levels, which are :
WBC : 4.0 - 10.5
RBC : 4.20 - 5.60
Hemoglobin : 12.5 - 16.1
Platelets : 150. - 450.
Billy and Alicia are on a shopping spree as I update Billy's Page *wink*. Billy received a "gift card" to Toy's R Us, and K-Bee toys, and he is out making use of them, Thank you, You know who you are *wink* !! Billy has an appointment with a Child Psychologist tomorrow for a 3 hour evaluation (9am-12pm). His mental state will be closely monitored, along with his physical state during the transplant process. Alicia and I will have a conference with Dr. Petrovic, and the transplant team on this Wednesday. At this time we will be asked to give our consent to Billy's bone marrow transplant. We will once again be given all the information as to what we can look forward to with a successful transplant, as well as the possible out come with a transplant that is not a success. As of today, Billy will be admitted on Monday the 23rd, and there will be "no turning back", from that day forward. Please continue to Pray for Billy.........
bpbullit Wed. 18 Feb. 2004 sunshine
Hello, and welcome back to Billy's Page. Things are really starting to get very serious in Billy's Journey. We met with a psychologist for 3 hours yesterday. Well, Billy spent most of the time with her for an evaluation. She was very impressed with Billy in all aspects of the evaluation. She was most impressed by Billy's knowledge, and attitude, as to what has gone on in his life over the past 17 months. His aptitude is well beyond an 11 year old child, and his intelligence overwhelmed her *wink*. She commended Alicia and I for the way we included Billy in all of our Dr. consultations. Billy will be seen on a regular basis by the psychologist, Dr. Anderson, while he is undergoing the BMT, and beyond, and Billy is looking forward to their meetings.

This morning we met with the surgeon who will be implanting the Broviac catheter in Billy's chest. He went over the procedure with us, as well as the possible complications that may arise. We had the same discussion when Billy's medi-port was placed in his chest on Sept. 2002. Billy's medi-port will not be used for the transplant procedure, which is why the Broviac will be placed. It will have 2 IV lines for the infusion of the Chemo drugs, as well as the bone marrow, meds, and anything else Billy will be needing. The Broviac will be removed after the BMT process is complete, and the medi-port will then resume it's roll as the main access point for Billy's medications.

Billy had his counts checked this morning as well, and were : ANC @ 800, WBC @ 2.2, RBC @ 3.13, Hemoglobin @ 8.8, and platelets were down to 39.. Billy's medi-port was de-accessed this morning as well because he didn't require any transfusions. Dr. Petrovic met with us briefly today to remind us of tomorrow's conference and asked us not to bring Billy. Are you thinking what I'm thinking? Don't bring Billy.......................
Billy really didn't want to hear that he was to be left out of this meeting. Billy has been part of all of our meetings with his Doctors, and has never been left out. We talked to Billy, and he understands that we'll be honest with him in our explanation of the contents of the meeting. In this meeting, Alicia and I will give our consent to the BMT, and most likely hear all about the "percentages" and "prognosis", a day I have truly not looked forward to. Billy will be admitted to ACH on Sunday evening the 22nd, which means, we actually have 4 more days with Billy, as the Billy we all have come to know and Love. Billy's BMT will take him from us, and hopefully return him to us with a new, stronger immune system, on his way to remission and cancer free............or it will just take him from us. These last 4 days can be just that, our last 4 days with Billy. Please Pray for Billy, as you've never Prayed before. Please Pray that we have the strength to overcome whatever is dealt us, PLEASE PRAY...............
bpbullit Thur. 19 Feb. 2004 sunshine
Welcome back to Billy's Page. Alicia and I hope that you, Billy's Friends, can embrace this update as you have embraced Billy throughout the past 17 months. Please understand, as we know you will, that we are closing in on what can very well be the end of a long, hard fought battle against Childhood cancer. There is no easy way to put into words what a parent feels, as their Child is given a 25% chance he will survive the next 6 months. Knowing for some time this day would come, it hit like a ton of bricks when Dr. Petrovic did what she has done so many times before, tell the parents of a sick child, that their child has only one hope for survival, and that hope comes in the form of a successful bone marrow transplant. Billy's donor is a strong, young 25 year old male, who is as close a perfect match as you can hope for, yet 25% is all we can hope for. Billy's MDS has affected 2 chromosome's (genes), which puts Billy in the upper most critical cases, and this is the worst possible scenario. Alicia and I were presented with a large stack of "papers" which contained the protocol that will be followed, as well as the consent forms outlining the "single" advantage, and "numerous" risks involved in the BMT process. The "single" advantage, LIFE, far outweighs the "numerous" risks that can take Billy from us, so signing the papers is the easy choice, and quite frankly.............the only choice. Billy will NOT live if he does not receive a bone marrow transplant, and since MDS is a disease "usually" found in older adults (60yrs. +), the statistics are vague, and Billy will be another "case study".

I will continue this update this evening, I have to take a break for a while, I'm not feeling very well at this time.
bpbullit Fri. 20 Feb. 2004 partly sunny
Hello, and welcome back to Billy's Page. I'm really sorry I never returned last evening to further update you, I was truly too upset to do so. We visited ACH this morning, after Billy's studies, to have his counts checked and to meet with the transplant team. Billy's counts were : ANC @ 900, WBC @ 1.8, RBC @ 2.81, Hemoglobin @ 7.9, and platelets are down to 28.. As I update you, Billy is receiving a transfusion of red blood because his RBC are so low. Billy talked with his good Friend Dyami last evening, and will be visiting him for a few hours at his new home after the transfusion is through later this afternoon. Everything is still on track for Billy's admission to ACH on Sunday evening for the surgery to place the Broviac catheter in Billy's chest. Dr. Petrovic may allow Billy to come home for the 2 days prior to the start of the preparation treatments (chemo, and radiation). The new calendar (schedule) shows :
TBI (total body radiation)> Feb. 26, 27, 28 {2 35 min. sessions per day}
Cytoxan (chemotherapy)/ ATG (antithymocyte globulin)> Feb. 29, Mar. 1st
ATG (antithymocyte globulin)> Mar. 2
Donor bone marrow harvested Mar. 3, delivered to ACH (evening)
Transplant Day Mar. 4th {day 0 , *Billy's new Birthday*}
There was a slight discrepancy in Billy's pulmonary function testing that was done last week, and this may cause the transplant team to forgo the radiation, for another method of treatment which will include another chemotherapy drug called Busulfan. This drug will be given over 4 days, instead of the 3 days for radiation. Therefore, 1 more day will be added to the treatment calendar, and Billy will start 1 day earlier.
Drugs to be used, and possible side effects :

Cyclophosphamide : An antineoplastic agent that has also been used as an immunosuppressive agent in organ transplantation.Trade name is Cytoxan. Heart inflammation, anorexia, nausea, vomiting, thrombocytopenia (decreased number of blood platelets), and leukopenia (lower than normal number of white blood cells). Use of phenobarbital, rifampin, or allopurinol at the same time may increase toxicity. Cardiotoxicity may be additive with other cardiotoxic agents such as doxorubicin. Treatment with cyclophosphamide may decrease antibody response to live virus vaccines and increase the risk of adverse reactions.

Busulfan: Busulfan has been used in very high doses and in combination with other drugs to destroy the bone marrow in preparation for a bone marrow transplant. This medication is used to treat chronic myelogenous leukemia, and can cause a decrease in the number of blood cells in your bone marrow, thinned or brittle hair, darkened and dry skin, loss of appetite or weight, diarrhea, tiredness, mouth blistering, fatigue.

Antithymocyte globulin (ATG) : A protein used to reduce the risk of or to treat graft-versus-host disease in bone marrow transplant patients.

Cyclosporin: Cyclosporine is a medication designed to suppress the immune system. It is very effective in psoriasis and many other conditions. It works fairly quickly. Though powerful, it causes very few serious reactions when used for short periods of time (days, weeks, or a few months). It is considered a short-term treatment for psoriasis and is safest when given for less than one year. Problems with kidney function, including kidney failure, and hypertension can occur in cases where the drug is used for over one year. Short-term side effects of cyclosporine may include headache, nausea, tingling in the fingers and toes, aches in joints, growth of hair where it is not desired, and swelling of the gums. While these side effects sound awful, most people do not experience them at lower dosages. The medication need not be stopped in the case of these side effects, and they many go away with continued use of the medication. Short-term use of cyclosporine can also cause elevation of the blood pressure, decrease in kidney function, as well as elevation of cholesterol and triglycerides. These functions must be monitored and the dosage lowered if they occur. Sometimes the drug must be stopped at least for a while.

Mycophenylate Mofetil (MMF, Cellcept): common adverse effects are limited and mainly related to gastrointestinal problems including nausea and diarrhea, low white blood counts, anemia and skin rash. Mycophenolate mofetil slightly reduces resistance to infection. Mycophenolate mofetil suppresses the immune system and reduces the production of antibodies attacking the receptor sites of the neuromuscular junction.

Methotrexate: First developed to treat certain types of cancer, methotrexate is routinely used at higher doses as a cancer therapy and is now used at much lower doses to treat rheumatic diseases, like rheumatoid arthritis. Methotrexate has been studied for over 20 years in the treatment of rheumatoid arthritis, and in 1988 was approved for this use in adults by the U.S. Food and Drug Administration (FDA). The most common side effects include upset stomach, nausea, vomiting, loss of appetite, diarrhea, or mouth sores. A decrease in the platelet count or red blood cell count may also occur, which could lead to bruising, bleeding, or fatigue. Factors that increase the possibility for these blood cell changes with methotrexate include pre-existing kidney disease, low levels of folic acid, certain infections, and the use of certain medications, including an antibiotic called trimethoprim. Rarely, lung damage occurs with this drug. Methotrexate may also cause liver damage.

Methylprednisolone : Methylprednisolone is in a class of drugs called steroids. Methylprednisolone reduces swelling and decreases the body's immune response. Methylprednisolone is used to treat many different conditions. It is used to treat endocrine (hormonal) disorders when the body does not produce enough of its own steroids. It is also used to treat many immune and allergic disorders. Side effects include Insomnia; nausea, vomiting, or stomach upset; fatigue or dizziness; muscle weakness or joint pain; problems with diabetes control; or increased hunger or thirst.

Zenapax (Daclizumab): This product is a "humanized" antibody (a blood protein) which is 90% human, and 10% mouse. It blocks the activation of T-cells, white blood cells, which are involved in graft versus host disease (GVHD). Side effects are uncommon, less than 1%. Possible side effects are diarrhea, fever, vomiting, aggravated hypertension, pruritis, abdominal pain, constipation, and infections of the upper respiratory and urinary tracts.
These are just a few of the drugs that will be used in Billy's BMT process. I will be updating you as to any adverse reactions Billy may experience, as well as the positive. I hope you will understand the depth of this procedure, and all that is involved. I am overwhelmed with the information I have acquired, and the facts I've learned. I hope you can appreciate what I've gathered for you here on Billy's Page.
Please Pray for Billy................


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