History

Friday, May 4, 2007 7:30

I am unsure when it will be that I update this again. But I thought instead of the rumors spreading, I would take the time to set it straight.

As I mentioned in my last update Anthony unfortunetly took a turn for the worse Wed night. We tried to get his pain under control but did not succeed. He basically continued to be in alot of pain but was very sedated. His only response was a constant moan to let us know he was hurting badly. Thursday he barely said a few words, and the ones he did say clear enough for us to understand were that he was in "Pain". On Wed night Hospice came in and accessed his mediport and started the IV Pain medicine. Finally around 5 AM Friday he stopped moaning, but continued to be in somewhat of discomfort. What we believed happened was that his body finally relaxed, and just went with the pain except for when he moves. Friday afternoon Hospice came in again and highered his Meds and he nows seems more comfortable.
Because of this Anthony will no longer be getting platelets or transfusions. He is very lathargic and for the most part is just asleep and cannot be wakened. He does sometimes respond, but only for a second.

We have been told that our Good-bye's were best to be done now as he will drift more and more into a heavier sleep.
This is something we have been dreading for the past month, and although we have been given this extra time with him, we really did not believe it was going to happen this quickly either.

We continue to pray for the last Minute Miracle. And know in our hearts that if it is God's Will that he lives, God will save him. But in the case that THIS is his destiny,We know we have so much to be grateful for and We truly are so proud of him for the strength he continued to show us each and every day. His faith never failed him, and we know he will be with Christ our Savior.
Anthony is going to the Better place, and although we know he will be More than happy to be there,
We will MISS HIM TERRIBLY.

It is our grief that Anthony has fought so hard to avoid. He has never been afraid for himself, he was afraid to leave us all behind grieving his loss. Letting go of him is the hardest thing we will ever do in our lives.
And we know it was because of all of your faithful prayers that Anthony was given this past month to finish all he needed to. Including being baptised, going to church and being able to thank everyone in person, and as he said "Throwing his seeds" . This was very important to him for everyone to know just how much he loved "Our Lord" and how much he wanted everyone to know he was saved and that he was going home to heaven. He loved ALL of US so much that he made sure he spread the word so that all of us would have what he has. Peace in knowing he would be with God.

We want to take this opportunity to Thank All of you for everything you have done for us and our families. Thank you all for your continued prayers for Anthony. We love all of you, and there is just No words to say it all...Just Thank YOU all for everything...We will be forever grateful to Everyone...

With love
Susan

Psalm 118:17
I will not die but live, and will proclaim what the lord has done.

Thursday May 3, 2007 1:32 AM

HI
I thought I would let you all know that Anthony continues to be fighting off hallucinations...Although we thought they were getting better, they seem to keep coming back..Hospice doctors told us it could be a few days before he stops having them.(caused by the high doses of pain med's this weekend)
When he woke up Wed morning at 5 am he wanted me to make him some home made iced tea. That of course seemed normal to me, so I went to do so, but when I returned to his room, I realized he was running a temperature and quickly realized he was not himself. He kept repeating anything I was saying. Including how he wanted home made ice tea, over and over. The temp was hard to get rid of, not one of his typical fevers. But finally after adding Motrin to the mix, it broke, and he seemed to snap out of it. He had also experienced pain while having the temp, and I had to add some of his pain med's .. Thankfully when the temp broke, the pain also left.

He was able to enjoy a nice afternoon with Pastor Makin and with a good friend from church Artie. For the most part he seemed to be ok and not in pain during their visit.

Unfortunately by dinner, just in time for him to be getting ready for Bible study, his fever returned along with his pain. He refused to stay home, and had to leave early because of feeling so miserable. But as you all know Anthony can be quite stubborn at times, and he insisted on not missing bible study..
Just as soon as he came home around 9 PM we started giving him Pain med's but nothing seems to be helping.

It is now 1 AM and we are still trying to get him comfortable. His pain is for the most part very intense. It is not in the shoulder , but in his groin. Which is making it very difficult for him to position himself in bed. His fever came down for a few, but returned very quickly again. I have been on the phone with hospice twice since 9 PM when Anthony had come home. He just received a larger dose and I am hoping this one will help him sleep. If not I will continue to call them until we are able to control it.

I am asking please to say some extra prayers for Anthony. His pain seems to becoming more frequent and more intense. The one thing we have said from the beginning is that we insist that he is made comfortable. So far we just are not able to get the right combo of med's to do that without effecting him with his mental thoughts while awake...

We continue to hope we do not have to put him on an IV pain med just yet. If we do that , it will limit Anthony to not being able to leave the house anymore. Or at least we believe that will be the case. As of right now, when Anthony feels half way decent he is able to go to church or bible study. We are hoping that it is possible to manage this pain without him having to give up the little that he can do..
If I have not made sense I apologize, (kind of late) !!
I did want to update everyone, especially those that continue to call and get the happy Anthony who tells all his callers " Hey I am doing good, feel great "...This is not the case, and he seems to wake up just to answer the phone that does not leave his hand all day and night...

Also, the blood work that we were waiting for did not come back yet. The doctor says possibly by the end of this week. But.....Sadly his regular blood work that he has done 2 x a week has come back that his leukemia is now showing up with what they call "Blasts"...Meaning that the leukemia is circulating rapidly in his bloodstream.. The blasts are clusters of bad cells (leukemia cells). Up until last week none were present, and it was only in the bone marrow.

To Ms. Shannon...(dont know your married name) sorry !!!
As you know Anthony has not been eating..Well I would like to say the only thing I have been able to get Anthony to eat was your Pistachio Pie....He loved it !!! Thank you so much for thinking of him....

I am including a bible verse that seems to fit My Anthony and I am asking If everyone could read it and pray it by replacing the word "ME" with Anthony's name.
IF not "OUR" miracle, then at least for him to be comfortable..

Thank you all....
With love
Susan

Psalm 6:2
Lord, have mercy on me because I am weak. Heal me, Lord, because my bones ache.

Monday, April 30, 2007 10:34 PM

Hi everyone

I was going to wait until tomorrow to update, since Anthony has another appointment for platelets and to see his doctor. But i decided to just bring everyone up to date as to how Anthony has been the last couple of days.

He started having a better week last Tuesday and Wed, but by Thursday he started getting pain again, and refused to take his "Breakthrough" pain meds. We usually base his pain on a scale of 1-10 ten being the worse pain ever, 1 being very little...He kept telling me his pain was only like a 3 or 4, but didnt want to take anything..Unfortunatly because he waited his pain did get worse and hard to manage again. We had gone through this last weekend also..
.
As the pain worsened(if that is a real word) it became harder to walk and sit comfortably. He had a hard time standing for more than a minute or so.His legs were much weaker and he ended up taking a bad fall on friday night. Thankfully he was ok.

He spent the entire weekend in a lot of pain, and he was on an increased dose of both pain meds he takes. Methadone, which i had explained takes a while to kick in and then dilordid which is very strong...He was taking the higher doses prescribed to him Friday every hour all weekend long.

Somehow, with God's strength Anthony woke up Sunday morning and insisted we all get up for church...I was quite amazed to see him use his walker to get around, even though i had no idea how he was able to..His body was so weak, and so tired from all the drugs, I really could not believe he went on to stand before our church to read his thank you to them. This was important to him, and he really wanted to make sure he did it in person.

Of course by the time we got home , he was exhausted and slept most the day. He got up only a few times to use the bathroom and to take more pain med....Thankfully today (Monday) the higher dose of methadone kicked in, and his pain finally left..I was able to stop giving him the breakthrough med (dilordid) but he still slept all day. So much that i was having a hard time waking him. When he would wake, it was for a brief minute and he was making plans to go out for dinner with one of his teachers..Of course when I would remind him about it, he would forget..Then when he would wake again, he would try to make the plans again...It was funny, but very scary at the same time, so I decided to call hospice and they sent a nurse over to check on him. Long story short, we have cut back on the higher dose of methadone, and they are hoping that he just needs some time to get the rest of the meds out of his system. He had taken so much over the weekend and it was actually causing him to have a tremor while sleeping, and alot of hallucinating.

He is not eating, and hardly drinking, so we are hoping that will get better also...All his vitals were for the most part ok..So they really felt it was all coming from the high doses of meds..

I will update you tomorrow night if there is any new News to report after seeing his doctor. We are hoping the results of the special blood test is back finally and Hopefully with some good news for a change...

Thankyou all again for continuing to support us. And for all of your prayers...
Love to all
Susan

Mr. M
Again, I am so sorry for all the confusion with his phone calls today about dinner...lol

Tuesday, April 24, 2007

Hi everyone

I figured I should bring this journal up to date. I wish I had some terrific news to share, but unfortunately nothing has changed for the best...Anthony's counts continue to drop as low as they can be. He spent the entire weekend in pain and was on ALOT of pain medicine. Thankfully the extra dose of methadone that they added finally kicked in on Monday and he was able to stop the other pain meds.

Monday he spent the day sleeping and i did not expect him to be getting up thinking to go out..But to our surprise he insisted he was going to college bible study. God gave him the strength to do something he felt was so important.
Tuesday (today) he went and received platelets . His doctor informed me later in the day that his blood work is gradually declining, and that at any time he can become extremely ill. His platelets also are a major problem because they are not lasting as long as they had hoped. It is Critical when platelets drop below 10, Anthony's wont budge over 5. When the platelets are this low, there is fear of internal bleeding anywhere in the body. He cannot have the transfusions more than twice a week for them.
Because of the situation and the direction things are going, we are having a hospice doctor coming this week to familiarize himself with Anthony. He/She will help us with managing any pain that Anthony will eventually start to have that cannot be managed through the meds we are using now.

Before I go into the next part I want to let everyone know that there is a decision that Anthony is still playing with, and it is one that Joe and I do not want to make for him. We believe strongly that regardless of Anthony's decision on this, if God's will is for Anthony to stay with us for another 90 years it will happen regardless of the choice made.
As I had stated a few journals back, Chemo is an extreme risk. It is really a matter of quanity verses quality. It can go either way. He could receive the chemo and we could loose him immediately, or he could receive it and have more time, but spend it in the hospital, with possibility of heart failure, infection etc... Either way his body is really to weak to handle it. But as they say "We can still try" with a 5hance of remission. Cure rate is less than 1 ... Or Anthony can choose to do what he is doing and stay at home with us. Either way neither of the answers are good. We do not want to watch him suffer anymore than he has already. Although if you ask Anthony he will tell you that he has not suffered at all..We of course would like him to stay with us indefinately, but neither of the choices are offering us that...And so this is where we know that God is the one and only that knows how all of this will play out.
We ask especially over these next few days that everyone pray for Anthony to make the choice that he feels best with. And of course that a MIRACLE will take place in his body...

I will try as best as i can to keep up to date as things progress, and when he decides what to do..
For those that still would like to see him, Please understand his emotions, and how he is physically feeling is hour to hour. His personality again is taking a turn, and we are unsure if it is the meds or if it is from disease progressing. Please excuse him if he is short when speaking to. He really does not even realize he is doing it. Feel free to call if you would like to visit, late afternoons are usually better and or after dinner hour...
Those are usually his more awake times..
But as most of you know,This to can all change...Anthony has been known to POP out of it, and Spring back quickly...Something I am hoping once again to happen...Love to prove the Doctors and blood work wrong...

Thanks again everyone for your amazing kindness..To all of the teachers, Thankyou so much for continuing to support him and for calling, stopping by, and sending over food...
To our church family at Wantagh Baptist, Pastor Ed, Pastor Greg and all of the prayer groups , Thankyou for everything that you continue to do for our family. We truly are blessed to have such an amazing support team. Anthony loves all of you and is so apprecitive of all the prayers and cards that he continues to receive...(He plans on attending church again this Sunday)

God Bless All...
Love
Susan

One of Anthony's favorites...

Psalm 23:1-4
The Lord is my shepherd, I have everything I need.(2)He lets me rest in green pastures. He leads me to calm water. (3)He gives me new strength. He leads me on paths that are right for the good of his name. (4) Even if I walk through a very dark valley, I will not be afraid,because you are with me. Your rod and your walking stick comfort me.

Thursday, April 19, 2007

Just wanted to let everyone know how Anthony is doing...He had his platelets on Tuesday and had some blood work done..His blood work did not come back as good as we would have liked. We were actually looking forward to seeing some good numbers but they all were actually critically low..He will be receiving blood transfusions tomorrow (Friday) and probably more platelets Saturday. His white count again took a dive down to 1.2 .

On Wednesday Anthony went out for lunch with one of his favorite Aunts (Danielle) and her family. He felt fine to go and enjoyed himself. Wed night he even attended a college bible study which his friend Justin leads. He had some of his friends attend with them and they had a nice night. Unfortunately by the end of the night Anthony had run himself very tired, and had a fever and alot of pain. Although the fever has been for over a week now, the pain has been absent until last night. Honestly we thought that the pain was just from him being over tired. But it continued through the night and all day today (Thursday). He has been taking heavy doses of pain med's throughout today, on a shedule now (tonite)of every hour. His doctor who we called is unsure of where the pain is coming from and why all of a sudden, but bone and joint pain is not uncommon for Leukemia patients. He will see him tomorrow when he is in for the blood transfusions, and is hoping that maybe his counts will reveal something..
I am just hoping that the pain goes away as fast it came. It kills me to see him hurting so badly again.

Anthony was able to visit with some of his teachers that dropped by today, which he was very happy about..He just wishes he was at his best as he has been for the past week or so.

I forgot to add that on Tuesday the Dr. ordered a special test to see if the Donor cells that Anthony received during the bone marrow have multiplied. Last checked Anthony had half of his own cells and half of the donors. They are hoping that the donor cells have multiplied. If they have the doctor would like Anthony to reconsider trying more chemo. This test will take approx a week, but they will try to put a rush on it. Anthony has not decided either way what he wants to do. We do know that there is not much of a chance of anything if the test comes back that the cells have declined..

What we do find amazing is how they are even considering still treating him. Our guess is that they are amazed that Anthony continues to do well and is maintaining his strength and determination to continue this fight..Especially when he has come as far as he has in the past few weeks..

Lets just pray that all continues to improve including his pain that he is having. Pray that there continues to be chances and more chances to do something for him.
And that the Doctors find other options for him to do. As long as he wants to fight, and has the strength to do so, We dont want to give up ...

God Bless
Love
Susan

Monday, April 16, 2007 6:20 PM

Hi Everyone

Thought I would drop a note to tell you how Anthony is doing these past few days�As I updated Anthony decided and received platelets last Thursday. During the week he had experienced some groin and knee pain, but for the most part really did feel well. Both types of pain have disappeared and he has been pain free. He has been running a fever for the past week, but so far the blood cultures they took on Thursday have been negative for infection. One of the symptoms of leukemia is fever, so it is only our guess, but that is what we are thinking it is coming from.

Anthony has been enjoying going out for dinner with his Uncle Billy and his cousins Bill and Crystal. We obviously have thrown all the rules out as far as eating sushi !!! He absolutely loves the stuff�He also had a great clam dinner cooked for him by one of his favorites �Aunt Kathy�..So as you can see he is enjoying food..Only recently has he started to see a decline in his appetite, and starts to feel full after just a few bites, but thankfully that was not the case last week when having dinner out..

Some exciting news to share is, Anthony was feeling well enough to attend the baptism this Sunday. We give thanks to God for allowing Anthony to feel well enough to take part in the baptism at our church. It was an awesome feeling to witness him be a part of such a beautiful event. For those that were able to make it, I am sure you will agree that it was a miracle to see Anthony stand strong and give his testimony. It touched our hearts deeply to be a part of his special day and have all of you share this blessed event with us. Anthony felt incredible and was so thankful he was strong enough to take part in something so special. We would like to thank all of you that were a part of the ceremony that made it possible for Anthony to do this with ease. Thank you for putting extra effort into arranging everything so that Anthony was comfortable and able to take part.

Pastor Ed , I hope that you are reading this because I would like to take this opportunity to thank you personally for everything that you continue to do for Anthony and our family. You told him to have faith that he would be well enough to make it to the baptism and he did. You continue to spiritually guide him through some of his darkest days. We thank God for giving you the gift to speak to our son and keep him faithful in prayer and in God�s word. We thank you for taking the time to explain just what it means to be baptized of our own free will. It made it that more special to know that everyone attending understood what it was that our son was taking part of and doing. We feel blessed to know that our son is safe with the Lord and that he felt the desire to tell everyone of how he is committed to him.

To every one of our friends and family that continue to pray for our son to be healed we thank you from the bottom of our hearts. Many miracles have been taking place and although to some they are unseen. We have seen them and noticed many changes in Anthony�s health. Only God could be doing these remarkable things. And we are praying that he continues to work with Anthony. Each day that we have with him is a miracle and we feel truly blessed that God is allowing us this extra time with him�

Anthony will be going Tuesday for blood work and Dr�s appointment, possibly platelets or blood. To our surprise, there is an excitement now each time we go for blood work. Knowing that at any time another miracle can take place. We have not given up and will continue to pray for that miracle when his blood work comes back perfect and free of leukemia cells�

Until then we ask each of you to continue to pray that he is cured. And that he continues to feel well enough to continue to enjoy this life here with us.

I want to share a verse with you that says just what I am trying to say about asking for healing..

Matthew 7: 7-8
(7)�Ask and God will give to you. Search, and you will find. Knock, and the door will open for you. (8) Yes, everyone who asks will receive. Everyone who searches will find. And everyone who knocks will have the door opened.�

Thanks and love to all
Susan and family

Monday, April 16, 2007 6:20 PM

Tuesday, April 10, 2007 10:41 PM

To All,

I hope everyone had a beautiful easter...Anthony and our entire family w/ friends celebrated Easter at one of the Fire houses so that we would all be able to sit at one table for a sit down table. Anthony had a great day and was feeling well.
We cannot express just how thankful we are to all those who volunteered their time to help us with cooking and serving and cleaning up...Craig you did an amazing job with the prime rib !!!! To Lisa and Jeff, Steve, Mary and all the others who worked their butts off, We thankyou from the bottom of our hearts for spending your holiday helping us out... I know there were many behind the scene and I want to thank all of you also....

As for an update on OUR boy.....Anthony has been doing so amazing that he decided that he needed to hear it from the doctors that there was nothing else that he could do...Today (Tuesday) we went to see Dr.Devoe to discuss options. While there they did a quick blood count to see just where his numbers were...Thankfully his white, and Red recovered ok , still LOW but not critical. Although his platelets are critical, he chose to wait until thursday to be transfused (if he decides to at all )....
I will try to explain all of this as simple as possible, and I ask everyone to please pray about the decison Anthony is trying to make regarding his treatment if any..

1st let me explain to all of you that thankfully Anthony recovered from his infections, and is still receiving his antibiotics at home through his mediport IV...As of last week, they did not feel Anthony would make it more than a week.
Because they did not think his body was strong enough to fight its way back. They truly felt that he would not be able to fight the infections.
As of today, Anthony is feeling well. He is walking around again, he is back to singing, his appetite is as always "Wonderful" and he is no longer sleeping more than staying awake..Most of all, Anthony has no PAIN, and is not taking any extra pain meds..He continues to take just his methadone as he was doing weeks ago....As his mom I would love to believe that he is going to be ok, and these are all wonderful signs that he is improving. Unfortunately they are not....
But the awesome news as you have read above, he is MUCH MUCH better than what he was last week, and I truly believe that God is allowing him more time to spend with his family and friends. As i have told Anthony, each day that he wakes up without pain is a blessing from God. Something a week ago we did not believe he would have.

As for our doctors app. and his options.
There are 4 to choose from, and although many will think it is easy to choose which one to go with, it honestly is not that easy. Each one of them comes with good and bad and of course the unknown..
Here they are

1....Do nothing at all, stay at home, stay comfortable with pain meds as needed. And trust that when it is his time he will peacefully go..

2....Refuse chemo, but stay under Doctors care, receive platelets and blood transfusions 2-3 times weekly depending how critical they become..By doing this, it may keep him more comfortable, and give him possibly a little extra time...this will not cure him, nor treat the leukemia that will grow quickly insidde of him, and will not protect him from getting another infection. His other counts will continue to change and the leukemia will take over which will eventually lead to his death.

3...Do a round of chemo as an inpatient at the hospital. A chemo that none of North Shores doctors have ever used. It is approved and there have been studies done on it but they are not successful.
Using this chemo there is about a 30 percent chance of his body RESPONDING to it. It is less than 10 percent hat it will put Anthony into a REMISSION. There is less than 2 percent for CURE...If able to get into remission, he will only last in remission for possibly 2-3 months...The side effects from this chemo (to name a few) are his counts dropping critically low again, fluid in the lungs/legs (congestive heart), High uncontrolled fevers, very sick, possibly being put into ICU and a low percentage have suffered death ....
And.....before starting this chemo Anthony would have to have a spinal tap to see if the leukemia is in the fluid...If in the fluid of the spine, and Anthony still wants to have the chemo listed above he would have a mediport/shunt surgically placed in his brain to receive chemo treatments twice a day as treatment..

4th.....Cornell has a program that is experimental...Obviously there are no studies that are performed on humans unless you agree...If Anthony chose to he could allow them to experiment new drugs not yet researched to see if they have any effect on treating or curing his leukemia..Because it is experimental there are no KNOWN side effects, nor do they know what proper doses to use...(We for the most part are not even considering this)...

So although things seem a little better than the outcome they gave us last week, it is still not wonderful news..If Anthony decides to be transfused every week, his doctor feels he may have a few weeks..If he chooses to do nothing, it still will be only a few weeks...It is a matter of possibly 5 or 6 weeks v/ 3 or 4 weeks..Anthony needs to decide just how he would like to spend his remaining time....We truly still believe that at our last second God possibly will step in and perform our miracle..But if it is not his will, we know he will bless us with the time we have left with him....Just this past weekend was a small miracle being able to spend Easter with him while he was feeling well. Well enough to leave the house and spend it with approx 70 of our closest friends and family...

He continues to amaze all of us, and each and every day that he awakes in our home, and starts the day off with " Mom, its a beautiful day out" or sings to me "you are so beautiful" I am blessed ... I am blessed to have such an amazing son, who loves life so much that he refuses to let even this get him down. I am blessed every moment that I have with him to hold him in my arms as he tells me " He is not going anywhere, causes he loves me to much ".....We all are blessed to be having this time with him to say our good-bye's and I love you's.....Not alot of people have the chance to do so....

Please continue to stop by or call...Please just follow the visiting times left on the last journal, and respect those who would like to have alone time with him....

Want to share with you something typical of Anthony to say, to show those who do not get to see him just how he has not lost his quick witted humor....

All this time Anthony has refused to pray for himself..He says he feels selfish asking God to help him...And has accepted everyone else praying for him...
So.....When he got the bad news last week, someone said to him "Anthony, you really should start praying for yourself, so that God hears you and heals you...In his sly voice with the eyes that pop out, he looked up and said
"Yeah I guess I should be getting to that real soon"....

Thank you all for your continued prayers and support....
I will update just as soon as Anthony decides on what option he will choose...Please pray for him while he makes this decision....

One more thing...Anthony has asked our Pastor to baptize him. At first we did not think it would be possible for him to make it to our church to be included . But if all goes well, and Anthony continues to feel well, he will take part of the baptismal at Wantagh Baptist this Sunday....I will let you all know for sure at the end of the week..If anyone would like to come and watch I will leave info on the time...Please say an extra special prayer for Anthony to be strong enough to take part it in the baptismal, as he really feels strongly that this is something he would like to do...

Susan

"Everything is possible for him who believes "
Mark 9:23

Sunday, April 8, 2007

Happy Easter to all....

I am sorry for the loss of communication the last week...Joey the youngest was away with his friend and we were afraid of him reading the updates while he was away. We knew we needed to tell him in person as to what was going on.

It started on Tuesday when he was scheduled for a bone marrow test. Unfortunately a couple of days prior he became short of breath and was very tired and his rib pain had started up again. By tuesday morning he was running a temp of 102. When we got to his doctors his blood pressure was 90 over 50 , his heart rate was up to 150, his oxygen level was down to 79 and his temp had elevated with tylenol in him upto 103... His blood counts were extremely dangerous and he was considered septic..They called an ambulance and rushed him over and admitted him into the hosptial. As it turns out he had 2 infections one staff and he also had pnemonia. When his vitals were better the next day they continued with the bone marrow test while in the hospital and we had the results very quickly. The chemo he had just received the past month had done nothing to stop the leukemia from rapidly growing. It was through out the bone marrow. There is no easy way to say this, but at this point remission is very unlikely and a CURE is less than 5 percent. Obviously medicine and doctors are not the end. We truly believe in the power of prayer and there are so many wonderful people praying for him that we have not completely given up. We know that God is the only one that has the final word in this and it is he that has written Anthony's book of life....
In the meantime they allowed Anthony to come home with us on Friday with the assistance of Hospice. He is still receiving anti biotics for the infection which are given through IV.
He had a little bit of a rough day on Friday but with NO pain. (Thank God)
Today he actually seemed quite good considering. ANd Again had no pain all day. These are the little things that continue to keep all of us positive that God will step in and heal him completely. Please understand we are not in denial of what the doctors are saying. But ....we do not feel it is time to give up completely as we know that God is a healer of the sick....If it is not his time, God will heal him. But in the case that it is time for Anthony to go home to Our heavenly father, Anthony and I want all of you to know that he is not afraid to die. He does not want to leave us, and he feels he will miss everyone. Mostly he is worried for us being left behind. He feels terrible that anyone will hurt because of him.....I personally am so proud of the fight he has fought for the past 2 years. The strength that I got from him each and every day. He is an amazing child that has touched so many people. Even when he does become upset he still finds a way to lighten the moment by a short and quick witted joke....He loves to make people smile....One of his biggest losses he feels is not being able to experience marriage or having his own children...Both of these things were so important to him. But he is also aware that even at his young age he experienced what he knows as true love and feels blessed that he had it.
Anthony has one more decision to make ...And that will be if he wants to attempt any other treatments even though the chances are very very slim..The doctor cannot help us make the decision . All he can do is tell us what will happen without treatment and explain to us how low the chances are by having the extra treatment. We have tried to explain to anthony it is his choice. He may stay at home and let Life continue for as long as God allows him to stay here with us or go back into the hospital and have spinal taps, more chemo and stay as an in patient with no known history of it helping...We honestly feel that anthony must be comfortable with the decision on this...We dont want to see him go through anything more than he has experienced already the past 2 years. But we also want to make sure we have used up every option available to us. Obviously if it has spread to the spinal fluid , there is nothing to even attempt giving, but again the spinal tap is yet another invasive procedure that is uncomfortable to go through...

So....I have caught you up to date . I hope I have explained it where everyone understands. I cannot and will not put a time period on here as i truly feel the doctor is not God and it is only God that knows just when it will be Anthony's time....We are blessed even with this terrible illness , we truly feel blessed ...Anthony has overcome so many battles with this and he has had God's comfort throughout. It is God that has given him the strength to continue this fight as long as he has....He has given Anthony these past 2 years which for the most part gave Anthony the opportunity to live a full life....and we are very grateful for him....

Please feel free to stop by, but please try to make it afternoon or after dinner...If people are in the room with him please wait in the living room and allow those with him some time alone....and please try to limit the amount of people at once to 4.....If everyone could do this and realize that there is someone waiting to speak to him then everyone would have quality time together with him....He wants to see you all, but it really is impossible for him to have conversations with 20 different people that are piled up in his room...Obviously feel free to stay longer if know one is waiting.....I have to put some hours in for the fact that Anthony needs time to rest and we also would like to have private time with him...

So these will be the times for visiting....between 1 and 4pm and then 7 :30 and 10 pm......Please pass this along ....thanks for understanding ...

My love and appreciation to all of you...We are a very blessed family to have such wonderful people supporting us through out this....WE thank you in advance for your continued prayers for us. Especially for a decision that needs to be made by the end of this weekend.......

God bless everyone and have a truly amazing and blessed Easter....
A new beginning to life.....

Love to all of you
susan

"Everything is possible for him who believes "
Mark 9:23

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Sunday, April 8, 2007

Tuesday, March 21st 2007

Hi All

Just wanted to let you all know that Anthony is doing ok..He is on some great pain medicine which is keeping him comfortable through out the day. Here and there he has some pain in his ribs, but not like it was. He only has to take this pain med twice a day and it controls the pain steadily (if that is a word).

He continues to do chemo and as of today they actually switched him over to a longer acting one that is suppose to work better. He has had it before but didnt stay on it because it had made him almost lethargic back in Novemeber. But the doctor wants to try it again, hoping that he does not have the same reaction this time. He will be getting 3-4 more treatments of (chemo) med's and then on April 3rd he will repeat the bone marrow test.

He continues to find the positive in everything and is simply so enjoyable to be around. Yes it is true Anthony is a changed man. He has found a new love for life and for his family, and truly is cherishing every moment of life. He continues to look forward to lots of company.

This past week on thursday Anthony's cousin Phil and wife Kristen visited from Florida. What was suppose to be a day trip turned into a great weekend with them. As Anthony tells it, he is the one that prayed for flights to be cancelled so that they could not get home...And Anthony's prayers were answered they stayed with us until Sunday afternoon.
Words cannot describe just how much Anthony enjoyed them and the rest of the family and some friends being here every night.

So please don't be shy, give Anthony a call and if he is up to a visit he will be very happy to see you all..

As i said earlier, the new chemo last time made him very tired, so that is the only thing I do worry about. I am praying he does not have the same reaction as he did back in November.

I also would like to take this opportunity and thank the families at Wantagh Baptist for helping us out with meals. I cannot express to all of you just how helpful it has been for me. Besides being delicious. Thank you all for your continued support, prayers, cards and meals.

A quick thank you to Cindy for those delicious brownies that I devoured and the cannoli's that also did not make it to the desert table...

To all of you...I truly thank you all !!! Each and eveyone of you help each of us get through some of our roughest days. Whether it be a phone call, an email, card, food , prayers or visits. Each and every thing helps so much, and more than you will ever know. Thank you from the bottom of my heart for being such wonderful family and friends.

As soon as I know anything different I will update the page. Until then Please just continue to keep My Boy in your prayers.. He can be that one miracle we are all waiting to witness...

With lots of love and Thanks
Susan

Sunday, March 11, 2007

Just a quick update to let you all know that Anthony is home. He came home Friday night.
He is still on IV antibiotics, which he is getting at home.
He continues to have alot of pain, but thankfully they have found a great combination of drugs to keep him comfortable.

I will repost more information when I am not so tired, but being that I am loosing an hour sleep tonite, I am jumping at the chance at going to sleep now !!! I really just wanted to let everyone know that he is home...

Please know that Anthony loves the company..Please just call to make sure we are at home before coming..He does have chemo (Sunday) and again on Tuesday...I am unsure of the rest of his schedule right now...

I will update just as soon as i know
Thank you again EVERYONE...You all have been such a blessing to all of us..

Susan

Tuesday, March 6, 2007

Hi Everyone

I figured I should at least update you all to let you know what has been going on since my last journal.
Anthony was admitted to the hospital on Sunday as planned. So far 3 of the 4 blood cultures taken have come back positive for Infection in the blood. As of today we still do not know what type of bacteria growth there is, just that it is positive . They are treating it with antibiotics through the IV..
Anthony's pain has become worse, and is taking alot of pain medicines. The pain in his ribs is from the Leukemia. They are hoping to start him on Methadone starting tomorrow to help with managing the pain until they can kill off some of the leukemia cells. They will be starting some type of proticol tomorrow that should start to decrease the lukemia cells (We hope). Hopefully if the medicines work, the cells will decrease and his pain will lessen. They have also been dropping down the amount of anti rejection meds. Originally they were being used to avoid Anthony getting GVHD (graph verses host disease). Now it is kind of a catch 22 but they want him to get it. If the graph takes off rapidly, they think there is a very small chance that the New bone marrow will fight off the lukemia cells which have already taken over more than 50 percent of his cells. With the small chance of that happening Anthony has a chance of living. Of course this to comes with a price which will be the side effects of it happening which could be liver failure, More intestinal problems and other problems. But it is Our only chance. Obviously Anthony is willing to do anything his doctor feels gives him a better chance.
As we all know , miracles do happen, and that is what we are praying for. We need a miracle !!!!

Anthony should be able to come home on Friday. And he will continue antibiotics at home. He will continue the other stuff as an outpatient so that he does not have to be in the hospital where they actually feel he has a better chance of getting another infection. I say stuff because although I would like to say it is chemo they will be giving him his doctor claims it really is not chemo but more a group of medicines that are used to lower the amounts of certain cells. In this case we are hoping it is going to lower the bad cells in Anthony marrow. These medicines will also compromise his immune system therefore making him at high risk for infection. Infection seems to be the key to this. We need to be even more careful than before of infections.

Anthonys spirits as usual are uplifting and truly amazing. He sings and tries to dance with the nurses, and flirts his butt off with every female nurse/doctor and even my friends. His attitude towards this is as usual very stubborn. "He will fight this one to the end" and "Refuses to let the lukemia win"....He expresses although he is not afraid to die, he does not plan on leaving here because he has so many things he still would like to do and alot of unfinished business. His biggest thing he would like to accomplish is to find the right one , get married and have children of his own. And as we all know Anthony would make an incredible dad. So...This is where Praying for that miracle to happen is so important.
I ask all of you to just keep praying and ask anyone and everyone you know to pray for him also. I truly believe in the power of prayer.
Thank you everyone for all of your support. IT really means so much to us.
Love
The Daniele Family

Just as soon as I hear anything new I will update...

Sunday, March 4, 2007 1:28 AM

This is a very hard message to leave. I will try as best to give you as much information as I can.. This really is not easy to do at all, and no easy way of saying it. So here it goes...

Anthony had a bone marrow test on Friday and the results are back already. His leukemia is back. No it is not good news at all.
We would not have found out about the bad results until Monday, if it were not for the fact that Anthony had run a fever on and off on Friday while we were at the doctors for his bonemarrow test. Because he was running the fever on and off while we were there, they decided to do some blood cultures and send them out. Friday night Anthony ended up running a high temp most of the night, but by 4 a.m it dropped very low down to 95.0 . It stayed low throughout the morning, and I called the doctor on call to see if it was ok for it to be that low. While waiting to see if he was going to warm up, I got another call from a doctor at the hospital telling me that his culture from yesterday had come back Positive for a blood infection. And that he needed to be admitted into the hospital today (saturday). Unfortunately there were no rooms available on the leukemia floor and Anthony refused to go to another floor. The doctor on call decided to call Dr.Devoe (anthony's main doctor) and he called me. I thought he was just calling to stress to me how important it was to get Anthony into the hospital to start the anti biotics for the infection, and before I got to speak he broke the news that the leukemia was present in his new bone marrow....The rest of the day continued to get worse as they could not get him a room on the 7th floor, but are working on it for hopefully Sunday. They have started him on an antibiotic at home for the meantime. Hopefully he will get a room on Sunday and they will get him on IV antibiotics which are stronger and work faster. He has started back on steroids which will help with his Rib pain and the fevers and the diarhea. He will be in the hospital hopefully only a week maybe shorter. And they will start chemo treatment during that time, and he will do the rest as an outpatient.
The outcome is Very unknown.

We are still waiting for the results of his colonoscopy biopsys which should be back sometime this week.

Anthony and the rest of us truly need all the prayers we can get...Obviously I cannot write everything in this journal, so if there are any questions Most of the family knows the answers except for a few such as Jo-Jo, Grandma and of course Anthony. I'd rather Anthony ask me questions about this journal than read it here himself. So what I have written is what he knows. Nothing more. All I can say is We are So DESPERATE for a miracle, so please Pray ...
Thank you for getting us through this

God bless All of Us....

***Our favorite Nurse Fran...When You read this Please call me at home 785-2321..*** How dear you take off on a Saturday Night !!!!*****lol

Saturday, February 24, 2007

Hi All,

Just wanted to let you know that Anthony is home again...They let him come home Friday night. Everything is still the same, but there was not much they could do for him that can't be done at home.

His colonoscopy and endoscopy came back good (so far). All that the pictures showed (we got to see them)_ was inflammation in patches in certain areas of both the stomach and the colon. They took alot of biopsy's of the area's and we should get the results some time this week. As of right now they still cannot pinpoint why he has such bad diarehea. One thing we did find out is that he is not digesting his medicines. His colon had 2 of his medicines in whole pieces that he had taken earlier that morning. So they still need to look into that. Possibly with a different test of the stomach. They have now put him on Opium which is a last resort to control diarehea. Today he actually did great..Lets hope it continues to work.

They put him on 3 different inhalers for his cough and for the inflamation in his chest..(Inflamation seems to be the key to all his problems)..

Unfortunately today Anthony started with a 102.6 fever. We are suppose to bring him to the hospital whenever he has a temp. But we chose not to and will wait until Sunday to see how things go. With tylenol the temp came down. So we will just wait it out, as Anthony wants NOTHING to do with going back in, especially having to go through the ER to be admitted. If the temp was lower we could contribute it to having 2 blood transfusions yesterday, but the fact that it is above 101. and being 24 hours not 12 leads us to believe something else is going on again. Obviously if it peaks higher tonight or I am unable to get it to break we will FORCE him to go. But i am trying to let him have some control over his body for once...

I will let you all know any new news as I get it. Oh very Important. They have sent out a special test this week to see if Anthony's blood now matches the donors blood. They are looking to see if Anthony continues to have any of his own left in his body,which they are hoping NOT...We are hoping that Anthonys blood only consists of the donors blood match...We should get the results of that also this week. This will give us the definate answer as to if he is totally engrafted and if it completely took...

Again we thank all of you for the prayers..All I say is Thankyou , Thank you over and over for helping us get through this every day...

Love
Susan

Thursday, February 22, 2007 11:03 AM CST

Hi everyone..

I just wanted to update everyone on Anthony..He is in the hospital as I write this. He was admitted on Tuesday because of the diaahea ..We were very lucky last week and he did get a 3-4 day break from it. But when it came back it was worse than before. He continues to loose weight which of course he is happy about. He has lost a total of 60 pounds..

While in the hospital they are running differnt tests. They have did an xray and catscan of his chest because of his cough (he caught from me) while I had the flu. BOth of them show that he has inflamation on his lungs. Totally different than fluid or bronchitis ..A pulmonary specialist is going to come in to check him out. I only understand it as it is INFLAMATION on his lungs. As soon as they clear this up for me I will let you know..
He will also be having a colonoscopy and endoscopy this afternoon to take a biopsy from the colon and the stomach. Hopefully they will figure out what is causing this so they can treat it.

Tomorrow they will be doing a MRI of his spine to see if they can figure out what is causing the pain he is having in his back..Still trying to figure out why his ribs hurt also...

So as you can see Anthony unfortunately is going through yet more stuff..We just keep praying that things start to get a little more normal for him..He continues to be so patient with his illness. And amazingly still does not complain...God truly is carrying him over all of this bumps..

Please continue to pray for Anthony, that all the tests go well and that we finally find an answer to why he is having these problems. And that there is something they can do to finally stop it.

Feel free to call him or stop by, he enjoys the company..He is in Room # 705 the very first room he had when he was admitted back in may of 2005...

Thanks in advance for all of your continued prayers.

Thursday, February 15, 2007

WOW...I am so sorry for it taking all of this time to update the page...I didnt know it was that long ago that I had updated..

To start...Anthony's fluids have been fine and he has been holding down everything. As of last week, he was scheduled for a colonoscopy and endoscopy on the 13th/14th because of the diarhea and throwing up. But it suddenly stopped so they allowed us to postpone it as long as it stays away. So far so good. And Thankfully he did not have to go in on the 13th because "Princess Bella" gave birth to 4 beautiful puppies that day. So everything worked out well.

He is up and about walking well without any help. Since the diarhea stopped his strength has improved greatly. He still has pain but thankfully for the most part Anthony will tell you he is feeling good...His blood counts seem to be recovering beautifully and his doctor is very happy.. They have started to cut back on some of his medicines cutting doses in halves..

WE continue to pray that the stomach thing stays away so that he does not have to go back into the hospital for the procedures. And also that he continues to recover well. WE really are hoping that Anthony will be ONE of the VERY FEW that does not get that GRAPH verses HOST...So far if he has had it, it has been so mild that they never pinpointed it to be just that...I keep trying to figure it all out, and each time i think i have a clue as to what they are saying it changes again..So all i can say, is that so far nothing was 100 % positive that it was or wasnt GVHD with diarhea or rash etc etc...We just will continue to wait it out...

So it took me long enough to fill you all in that he is doing better (THANK GOD) !!! He continues to see the doctor twice a week and have his blood checked...We could use some extra prayers this week, as I have the flu and everyone in the house seems to have something...WE are trying so hard to keep Anthony from getting sick...They have started him on Tamrflu as a profolactic which I am on to hopefully cut the duration of it in half...So please keep him in your prayers..It is so important that he does not catch it..I have no clue where I caught it from, and we are worried for him...

Thanks as always to all of you who have continued to write him and send him cards...I especially thank eveyone at Wantagh Baptist for the support and prayers...
We love all of you
Sue,Joe and family

Friday, February 2, 2007 9:51 PM CST

Hi Everyone...

Sorry it took me forever to update...I honestly am having a hard time finding the time to keep up with this...Anthony continues to need alot of assistance in walking and such. He stays in his room at all times even when he eats. He becomes so tired after trying to eat a meal that he immediately needs to lie down after he gets full..

He has not been feeling well at all the past few days. The diarrehea and sick stomach pretty much knocked him out. He ended up being dehydrated and almost ended up back in the hospital today. He went to his regular dr. appointment and his dr. really tried to admit him back in, but Anthony just kept refusing. So instead they set him up in the treatment room and administered more anti-biotics, fluids, pain meds and Nausea medicine. Within 30 minutes he began to come alive again..It is amazing just what happens to the body from not having enough fluids in it..Hopefully the stomach problems will get better and we wont end up in the hospital over the weekend..

He continues to be cold all of the time, so we have now decided to use a heating blanket, as my house is like a sauna especially in the upstairs bedrooms. I myself have kept all 3 windows in our room open, just so we can breathe.
They really dont know why he is always cold, but on and off he does run a temperture.
Thankfully his mediport blood cultures have come back negative for infection..I believe they just need to wait for one more to come back. But so far it looks like it is ok to keep in.

As far as the rash, it does not seem to be getting any worse, nor is it spreading anymore. So all they want to do is continue to monitor it. His blood counts look good , his weight continues to come down, and his vitals have been all in normal range. So right now we just need for the diarehea to clear up, and regain some of the strength back in his legs and back..

We continue to be amazed at how he just keeps pushing on.
We thank all of you for your prayers and thoughts during this time..We feel so blessed to have all of you continuing your prayers for his recovery/healing/cure..

Please feel free to drop by to see him. Short visits are good for him.. Makes his days go by faster, and less time for him to think of the "what if's"....

Love to all of you - I promise I will write Tuesday night after his next appointment..

Susan

Saturday, January 27, 2007 2:25 PM CST

Hi Everyone

Sorry about not writing sooner...Everything is going good.Anthony is feeling well. He is tired and weak but that is normal, and he will be that way for a while they say..He had his first re-check yesterday. Blood work was good and the Dr. said he was doing just as expected. He continues to drop all the weight that he had gained from the heavy steroids he was on. And because his stomach still has not healed completely from the radiation, he really cant eat much without getting full very quickly.

He started with a rash 2 days ago, but the Dr. wants to wait to see. It could be the start of "graph verses host" but even if it is, they would not treat it at this point. So we just need to keep an eye on it. And then they will decide on Tuesday if it continues to spread whether to biopsy it or not..This is the only true way to determine if indeed it is graph verses host..

If you would like to come by to see him, please just call ahead of time to make sure he is awake. If he does not answer the phone u can call me ..He looks forward to visitors but is limited to only 2 at a time...

I will update on Tuesday after his next doctors app..Thanks again everyone..

Susan

Monday, January 22nd 2007 12:57 AM

Well the day is finally here....Anthony gets to come home today... :)
We got a little worried on Friday into Saturday as he started running a temperture. But he had 2 blood transfusions on Friday, so we believe that the fever came from them. And then On Saturday he had a platelet transfusion so again, they are hoping it was a reaction to the transfusion... Saturday night fever was gone, and Sunday his temp stayed normal...

This morning (Monday) we will wait for the blood tests and results of labs while running the fever and as long as the cultures that they did come back negative for any infection he is free to go home finally...7 weeks went by very fast although I am sure way to slow for Anthony. We are just happy that this chapter is finally over and now we can move onto the next...Hopefully as we move forward things will continue to go well for Anthony...He looks great, got rid of all the water weight. He will just have to work on regaining his strength. He lost all of his muscle tone, and is very weak and shaky while trying to walk. He will be given a walker to use until he regains muscle strength in his legs. He continues to have a reaction to his "anti rejection / anti graph v/ host medicine" ...His hands shake very badly. They shake so bad, that it is very difficult just to put butter on a piece of bread. But as always he deals with it and does not complain . His face/lips continue to also have the shakes but that seems to be only sometimes, where as his hands is constant. The medicine also makes (most of the time ) just one side of his face burnt red, and is actually is extremely hot to the touch. But although its terrible to have the reaction, we are Praying that by having this med to take, he will possibly be ONE of the RARE people that dont get the disease...

Once again I need to Thank those who stayed by Anthony's side through out this. I have said it to him Repeatedly that it is times like these that YOU find out who are your REAL FRIENDS. He is blessed to have those that have remained so faithful to him through all of this..And the same goes for our families...We are blessed to have been able to depend on you.

And I cannot forget to thank an incredible family that through out this has blessed us with spending the holidays with us, visiting daily, sleep overs, meals cooked, numerous phone calls to pray with Anthony.
Anthony depended on knowing he could call the Ellis house and someone in the Ellis family would pray with him to calm his fears. He knew all he had to do is say he had a craving for Chicken Taco's and Robin would have cooked it for him. Justin and Nicole always found time to visit and pray with him. Kailey (his beautiful girl) knew just what to say to make him smile :)And left inspiring messages for him..Lenny always knew just what to say or pray about to keep Anthonys faith strong. Anthony continues to find great comfort when Lenny would lead us all in prayer.Corey spent a couple of overnighters with him to keep him company..Hang out and watch TV and talk..(Even though we knew it really was to see Fran)(the hot nurse) lol
This truly is an amazing family that got ME and Anthony through these past weeks and YES even since this all started. Robin even spent this entire week with me cleaning my ENTIRE house just so it was GERM free for Anthony to come home...She even washed my ceilings...lol
Honestly I thank You all from the bottom of my heart..I could not have done this without you..

THANK YOU ALL...YOU ALL IN SOME WAY HELPED US GET THROUGH THIS REALLY TOUGH TIME....and I will continue to mention names each time, as I am so grateful !!! It might take a few years to list each and every one ..hahahaa

JUST AS SOON AS IT IS A DEFINATE THAT HE IS HOME...I WILL UPDATE THE PAGE....

God Bless all of you...

Last but not least....

To Our Precious Lord ~
Thank you for continuing to get us through this and listening to our prayers...You have comforted us and gave us the strength to make it through these past weeks...
Thank you for healing our boy and never leaving his side...Please continue to stay by his side and continue to heal his body.
In your precious name we pray...
Amen

Thursday, January 18, 2007 11:42 PM CST

Hi Everyone

As of my last posting I said that Anthony would probably come home Friday. Well things have changed a little. He will be coming home Monday instead. It gives me a little more time to work on this house..Thanks to my best friend Robin and sister inlaw Doris my kitchen is immaculate...I am hoping that the LivingRoom will go alot quicker.

There is no specific reason as to why they changed the date to Monday, but in a way it is a good thing. Anthony seems to be going through a depression and some anxiety about coming home. His doctor explained to me tonight that this is normal. As did his favorite Nurse Fran explain to me, that most patients leaving "the nest" feel this way. The patients are basically in a little cocoon for so many weeks and made to feel that they are in a safe spot. Now its time to go home and he is apprehensive. He has some fears of "God forbid he falls", or has alot of pain etc..
His nurses are just a call away, and his pain med goes through him immediately through an IV..When he comes home, Yes I will be right there for him, but his pain med will be of pill form, and wont take effect right away. So we need to get past this latest hurdle of anxiety.

He is doing well. His blood counts are good, and he has had no fevers. He does have the pain, but it has shifted to his back more than his knee. He is having a hard time walking again, because his back goes into spasm when he does. So we are going to be real careful when he comes home.
He continues to have a very bad shaking in his hands, which he had a little before the transplant. It got worse after they started him on that medicine for the "Graph versus Host". Well now it seems to be effecting his face, mostly his mouth. Hopefully before he comes home they will lower the dose so the side effect is not so annoying for him. He says it feels like a constant twitch .

I am really looking forward to him coming home. Especially since this week I really have not been with him as much because of the cleaning. It will be great to have him back home where he will eventually realize is much nicer than being cooped up in a hospital bed.

I think I have brought you all up to date with his progress, as of today. We continue to be so grateful that things have gone as well as they have so far. We of course continue to pray that he will continue to heal and be cured.

Just to give you a look ahead of what is next...
Anthony has 2 more spinal taps with chemo to go through. During the spinal they will examine the fluid that they take to make sure no leukemia cells were left behind. They will then inject the same chemo's that they have used before, just to cover and risk of " a cell" left behind. More as a precautionary ... They will repeat this procedure twice. He will also have a bone marrow test in about a month or so. Again just to be on the safe side to be sure there are no "bad cells" still hanging around.. And of course we will be sitting patiently "PRAYING" that the graph verses Host never appears and if it does that he only gets a very very very mild effect from it, as it can be very dangerous for him...And the obvious which is keeping him away from any germs/colds/flu ...

With all of that said, Once again I want to thank everyone for your prayers for Anthony. Thank you all for letting him know that you have not forgotten that he is not completely out of the woods yet. We thank God that we have such wonderful loving friends and family that has continued to pray for all of us during this time. All of you mean so much to us, and we are blessed to have you in our lives.
Each of you have helped us out in one way or another. From cooked meals, visits to the hospital, cards, letters,phone calls, postings to his website and even helping me clean my house.
And most importantly keeping him in your prayers..Thank you , Thank you...Thank you !!!

I'll write just as soon as I have any new info...
Please feel free to come up and visit over the weekend..It will be good for him, and hopefullly keep his mind off of his fears...

God bless all of you,
With love
Susan

Sunday, January 14 2007 12:42 AM

Hi everyone

Anthony's bone marrow is offically 1 month old as of Saturday...He really is doing so much better than last week..He is down about 40 + pounds !! He is walking better, breathing better and is starting to eat at least one full meal a day...He unfortunately still has alot of pain in his legs, which he had before the transplant. We are hoping to have the orthopedic come in this week to tell us what he will be able to do for the constant pain. If you remember I told you before the transplant, that the MRI he had showed that his knee bone had deteriorated..So hopefully there will be something they can do for him, so he can stop the pain medicines..He does continue to have off and on pain in some of his joints, but the main pain is the knee's.

Up until last night, he was fever free. He did start last night with throwing up, which we thought was from what he ate being to heavy on his stomach. But this morning before eating anything, he also had a bout of nausea and throwing up bile. He had a fever on and off again today..They are checking for infection again, and are saying they possibly will have to remove his Mediport . If they do that, he will have to have it surgically removed, and while removing it, they will put another one in that is a temporary IV line rather a permanant one like the mediport he has..

We all so pleased how well he is doing. And we are so Thankful that things continue to be OK..Obviously it would be even better if he had no fever. Hopefully we will find out soon what is causing it...

As long as he is fever free, infection free, and does not start with the "Graph Versus Host" , they think they might allow him to come home for a while possibly at the end of the week. Obviously we need to get past this the fever etc. but if all goes well, he will come home and be aloud to stay home until the graph versus host appears. He will be confined to the house except for going in and out for blood work 3 times a week. But at least he will be home in his own bed...He is a little afraid to leave, and I am too. Alot of adjustments need to be made before he comes home, including our little dogs having to leave..Early spring cleaning has to be done before he enters the house..Anyone up to washing walls ? Let me know !! lol

We thank God that we have made it through these past 6 weeks. He truly has blessed Anthony with healing, comfort, wonderful doctors and nurses and some remarkable friends and family who have continued to pray for him through out this time. Even people who have never met him have been praying for him, sending cards and leaving encouraging messages of hope and faith. We thank all of you for continued love and support.We will be forever grateful to all of you for your kindness.

I will update just as soon as I hear any new news..Anyone that can come up to visit, it would be deeply appreciated as this week is going to be crazy with trying to get the house immaculate for Anthony...And obviously he loves the company...

God bless all of you..

Love
Susan

Tuesday, January 9, 2007 11:53 PM

Hi
Anthony had another good day !!! He had to get platelets and a blood transfusion just to bring the counts up a little . He also had his triple line removed from his neck as they feel it was causing the blood infection. He will now be switched over to taking most meds by mouth as he only has a single port (line) to have meds through the IV.
We spoke to the cardiologist finally. The way they explain it is .....Because of the high amount of fluids that Anthony has been retaining, fluid was in the lungs and around the heart. This is considered a Congestive heart. As in Congestive heart failure. BUT......Because Anthony's fluid came from the fluid he was retaining because of the chemo's, and all of the fluid he was receiving while he was not eating, it is not as bad as an elder person or someone else with a heart problems getting it..So although he does have a congestive heart, it is not failing because they are removing the fluids quickly. He is actually starting to look so much better and has taken off since last week about 25 pounds just in fluid. He will continue to get medicines to help him flush out the rest,as he is still swollen in his ankles and feet. But alot better than what he was. The Cardiologists have also started him on another medicine which he will take 3 times a day. Because of the fluids his heart is not pumping enough blood.These medicines will make his heart muscle pump faster. This explains Anthony's shortness of breathe and feeling sometimes as if he could not breathe. Same symptoms as someone with Congestive heart Failure. The doctors feel that once the fluid is gone, he should be ok. As for now he will be watched carefully and they will redo the test next week to make sure all the fluid is gone from around the heart. They saw no damage to the muscle from the Mild heart attack he had. Thank God !!! And they continue to give him medicine to keep his heart beat regular. They explained that everything he has gone through takes a toll on the heart, but all in all, his heart has held up well...

Other than all of this, he continues to be in a great mood, and allowed me to come home tonight because his favorite nurse Fran is working....

Feel free to call him or visit...

I will keep you posted just as soon as we hear anything else

We thank God as he continues to care and heal our boy..Day by day, he is starting to get better, and it is because of all of your continued faith and prayers..
Thank you to all of my prayer warriors here and in every state...I keep telling Anthony, there are just so many people all over praying for his recovery. We are very blessed !!!
Thank you
Susan

Monday, January 8, 2007 10:12

Hi Everyone

I just want to give everyone a quick update, and some good news... Anthony as of yesterday started to ask for food...Yes that might sound funny to some, but it is a good sign. He had one meal Sunday and today he had a half of a sandwich. He gets full quickly followed by bad heartburn, but at least his appetite is coming back.

He also has been taken off his pain pump and the pain patch and is back to just asking for pain med's when needed. Therefore from what I was told by the nurses today, he was pretty much more awake today, talking more and talking clearer, he got up for a walk with his physcial therapist and mentally was more clearer. Although tonight he did some hallucinating , but only after having pain meds'...

Unfortunately from coming off such high doses of pain meds he seems to be having a withdrawal reaction . He is becoming axious, which should pass.

There is still no results back on his heart sono. Hopefully tomorrow morning, as i missed his doctor today.

So we seem to be moving in the right direction. He will be easier to talk to now on the phone, NO more MUMBLING...hahaha

Again thank you all so much for your continued support and Prayers...God is Most definately listening to us...

Love
Susan

Saturday, January 06th 12:22 am

Hi Everyone

It has been a very busy week for Anthony. We have had some up's and some down's. But I think we are still going in the right direction.

As I last wrote Anthony's counts had been moving up and were great. They stopped the Nuprigen which was help boost them. Usually after stopping the shots, the white count plumets and then eventually recovers on its own with out the help of anything. In this case, Anthony's counts continued to go up. I believe normal for us is between 10-15 thousand, and Anthonys actually at one point were at 18 thousand. When our white count elevates like that it means we have an infection somewhere in our body. (cold, flu etc) Well as it turns out that is what is happening for Anthony. He is fighting a blood infection, and fever and possibly pneumonia. The pneumonia is not from a cold it is from to much fluid in his body. I say possibly because at first they thought for sure it was because xray and catscan shows fluid in the lungs, but now just to be sure they did a sonogram of the heart to make sure that it is just that and not where Anthony is running into congestive heart failure.
Trust me when I say I am just as confused as all of you right now reading this. But because fluid in the lungs could mean either, they must rule out all before stating definate. And because Anthony continues to hold on to about 20-25 pounds of fluid (ankles,feet,face,hands,legs swollen) they must look at all possiblilites. They continue to give him medicines to help him get rid of the fluids but it is only helping alittle. The kidneys are not functioning 100ecause of the radiation,chemo and transplant, so this is something that happens in a BMT patient. The fevers they are trying to narrow down to one of his ports or his main mediport, or possibly from the engraftment or from the possible pneumonia.
He continues to have diarrhea and body pain is very tired and weak. He has started physcial therapy this week to help him become strong enough to walk again. He made it about 8 steps on Thursday which took about 10minutes to do. He uses a walker in front as 2 aids assist him to make sure he does not fall. He continues to have no interest in food. He did however have a bake clam on NYEve and some soup on NYday but other than that just juices. I started making him shakes with protein powder yesterday as they have told me he needs to start getting protein into his diet to rebuild muscle that has been damaged. So it has been about a month now that my boy has actually had a meal.

Thursday night one of Anthony's fears came true when he started off with a bloody nose that was pouring out of his nose from 5:15pm until 9 pm when the ENT came in and packed the nostril with close to 25ft of gauze. OUCH !!! Sounds like alot but it is amazing what a little vasaline, tweezers can do up a nostril to make it stop bleeding. It was extremely painful for him to go through, but once again he amazes me with his courage, and how he allows whoever to do whatever they have to in order to help him. It was a real rough night for him especially since it was the first night in a very long time that he had so much company. He just wanted to see everyone that came up and thankfully everyone waited in the waiting room to see him when he was finally bandaged up..

Please remember Anthony truly does not know half of the things going on. We continue to only give him the info he needs to know, so he does not get caught up worrying about everything. Its bad enough us having to hear this or that without a definate answer of what the outcome is. We do not want to stress him with anything unless we know for sure the definate answers. As for now, unless the antibiotics clear up the blood infection, his main mediport will have to be removed, which would have to be surgically removed while he was under. We are hoping that does not have to happen, since his main one has been such a blessing for the past 2 years. And they really dont want to have to touch the triple one that is not permanant because he has to much fluid in his body for them to be able to access a vein. And they need at least 3 accesses to use for IV fluids..So please pray that this blood infection clears up with the use of the new antibiotics that they have changed over to.

I cannot stress enough how important it is for Anthony to see familiar faces. Although he does snooze alot, he does wake to see his company. And it really helps him mentally. He has been in this room now for a month with only one visit to the small hallway. He continues to hold his phone next to him at all times waiting to make plans..lol I have to remind him he cant go out !!! ( He hallucinates quite a bit about making plans to go out to a club) He is very entertaining to listen to as half the stuff he says makes no sense...lol
So please if you have the time, stop up to see him, or give him a call..This is a time he really needs his friends and family to continue to show him support.

I will definately post the outcome of his test results just as soon as i get them from the cardiologist.
And of course any other changes that come up.
One more concern that I really need everyone to continue to pray about are his counts. Although it is great that the white count has come up and we are hoping it is up because it is doing its job to fight off an infection, We need to make sure it does not continue to come up...So please continue to keep Anthony in your prayers.....

I hope I have not confused everyone to much. It is alot easier to write all of this than to try to explain it over and over on the phone. I love you all and continue to feel so blessed to have all of you helping us through this.
Thankyou for your prayers, God Bless!!
Love Susan

Monday, January 1, 2007 2:35 AM

HAPPY NEW YEAR ...EVERYONE

Hope everyone had a wonderful New Years Eve!!!!

Joe, Joey and I spent it with Anthony at the hospital. Our friends Robin and Lenny hung out with us to watch the ball drop, and Anthony decided he needed his favorite nurse Fran to be the one to hold his hand and be the first to wish him his Happy New Year w/a kiss...lol

Ellen and Tony spent the afternoon with him as he made some phone calls to his great aunts. Some of his other friends came up through out the day, which made his day a good one.
His white count also jumped up to 3.1 today, so they are hoping to discontinue that Nuprigen shot that is causing all the pain in his bones either tomorrow or the next day.

Anthony has been very blessed by having such awesome nurses who care so much for him. They go out of their way to make him comfortable and are just amazing with him.

I cant express to all of you enough how important it is for Anthony to see everyone. So If you have the time, please feel free to drop by and see him. Although he is very sleepy, he enjoys the company and really tries to stay awake. He misses everyone alot !! So as long as you are not sick please stop by and see him. He is not so great on the phone, since he mumbles alot and falls asleep when people are talking. (If you are one of the friends he has done this to, you know what I am talking about)lol

Again, I just want to wish everyone a very Healthy, Happy New Year...I pray that for 2007 Anthony is given back his life to be lived like a normal 20 year old, and that everyone around us has a wonderful, happy New Year also...
God Bless everyone with peace, love and good health...
Love Susan

Saturday, December 30, 2006

Hey Everyone

I just wanted to take this chance to wish everyone a very Happy New Year !! Be safe and have lots of fun...

We have some good news to share for the New Year !!! Anthony's white counts moved from a 0.1 to 0.3 Friday . Although the Dr's were not sure they felt that it might be the start of his marrow graphing. Last night he was in a great deal of pain the entire night. His body, knees, elbows, spine were killing him. By morning he was running a temperture. We got his white blood count back and sure enough it came up to 1.6 .....What does all of this mean ? Yes the bone marrow is taking/graphing.

So as each day passes, his numbers should start to come up. He will continue to get Nuprigen shots, which help boost his white counts quicker, until they are normal. In the meantime, Anthony will have to endure the pain as the body re-adjusts to the counts multiplying. Bone pain is a common side effect from the Nuprigen shots causing the white blood count to multiply. Sorry if I am confusing everyone. It is hard to explain how this stuff works. But it is a good thing and it means He will now continue on to part 2 of the transplant which is called "Graphing" .

In Anthony's case he will not escape something called "Graft-vs.-host disease "

This is something he will get because of having an unrelated donor. We just do not know how severe he will get it. I am including a link for anyone that would like to know more about it. Basically the best way to describe it is that the donor's cells are stronger and they will not recognize Anthony as something good, therefore they (graph) will try to attack his body (host). The Dr's will continue to give him anti-rejection medicines to help with this process that will happen. Below is the website that I feel covers it all. Just copy and paste it into your search engine..

http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/graft-vs-host_disease.jsp

Other than the wonderful news that has a catch to it. His spirits continue to be great. We continue to thank all of you for your continued support and prayers. We feel very blessed that God has allowed Anthony the peace, rest and healing we have all been praying for.
As we enter the 2nd part of this, please continue to keep him in your prayers that he is able to escape this next part with mild side effects that clear up quickly.

Thank you all...Happy New Year !!!
Love
Susan

Monday, December 25, 2006

*** Special Update about Blood***

Because of the transplant, Anthony can no longer receive his type blood or platelets. Things are a little different as before Anthony could have any type platelet and only O or A blood. Because his donor was not the same blood type , Anthony now can only have O blood and A or AB type platelets.
If you can help out with either of these we would truly appreciate it. You can call the blood donor room at 516-562-4204 to make an appointment. Obviously even if you are not either of these the hospital can always use donations, so please feel free to come up and donate your type blood...
Anthony will continue to need blood and platelets for at least another month if not longer..Thank you all who have donated.

Merry Christmas Everyone...

I hope everyone had a wonderful Christmas !!! We actually had a very nice relaxing one here at the hospital. Although Anthony was out of it pretty much of the day, he had alot of visitors which was real nice. We really appreciate everyone taking time to stop by and visit with him, and he was aware of everyone's presence even though he was asleep.

Unfortunately he needed blood and platelet transfusions today, so on top of his regular tiredness he was even more knocked out because of the pre-meds they give him before the transfusions. But we still got to enjoy some humor as he talks quite a bit in his sleep.

Anthony continues to be in a lot of pain. The sores in his mouth have become very painful as they are roar and bleed. They also travel down his throat and lining of his stomach. So at times he can get a drink to be ok in the mouth but as it starts to enter his stomach it burns real bad .. So basically he is not drinking more than he has to just to take medicines that are still be given by mouth.

They started him on the push direct pain med's and have kept him with the pain patch, which seems to be helping. Every day the pain management comes in, evaluates how often he is trying to use it, and they adjust his dose accordinginly. So far they have increased it 3 times, and it has continued to keep Anthony for the most part comfortable. Thank God !!

Saturday night Anthony ran into one of his old problems with his heart rate speeding up, so they called in a cardiologist and did a EKG. Thankfully it was still a little irregular but lowered to a safe number. Unfortunately while looking at the newer EKG the cardiologist realized that from his last one, this one changed. Not knowing Anthony's anxiety he came in to speak to us and announced that somewhere between his last EKG and this one, Anthony suffered a mild heart attack, and possibly has a blockage. Obviously this woke anthony up immediately. The Dr. feels it could have happened for numerous reasons, and we will just have to continue to monitor him. If he was not so sick they would immediately send him for a stress test or the catheter test but neither are ones he can do right now because of his condition. So they will be just keeping a close eye and repeating the ekg's , blood pressure and heart rate and have changed his heart medicine that he was on.

The burns on his legs have spread to his arms , back and butt. We are hopeful that no more will come out on his body as he is in alot of pain from the burns.

This wednesday will be 14 days since the transplant, and the Dr's say that anytime after the 14th day his blood counts could start to come up. It is more likely for them to come up between 21-28 days but can start as early as this week. Once they start to come up his body should start healing on its own and we will then start the next chapter of his bone marrow graphing...

I will continue to keep you updated as he continues on this journey that he is truly amazingly holding up so well with. I have no idea how he stays as strong as he does, but truly feel he is helping all of us be able to handle watching him go through such a painful ordeal.

Thank you all for continued support, christmas cards, christmas prayers, phone calls, gifts and letters etc...Thank you Danielle for all of your wonderful cooking and baking you did for us for Christmas Eve and Christmas !! You are one of my guardian angels and we are blessed to have you. To all of our family and friends , Thank you for helping us get through a pretty rough holiday, Our Christmas turned out to be a very blessed one because all of you were a part of it with anthony and us...We will never forget this
Christmas ever !!!

May God bless everyone with peace, love, happiness and perfect health. Merry Christmas !!

Love
Susan

Wednesday, December 20, 2006

Hi All

I thought I should update this since it has been a few days. Anthony has been doing as good as expected. His sores have become very painful and at times it is hard for him to swallow and speak. Pain Management was in today to see him and will be hooking him up to a direct pump that will allow him to give himself pain meds himself. It is regulated by allowing him a limit of a certain amount for each hour. They will also allow him to continue using the pain patch that works constant for 3 days at a time. This way he will become more comfortable. Although there is no way of completely getting rid of all the pain related to these sores.

His arms and legs have started to discolor from the radiation. He says it feels like chaffing, but also a real bad sun burn. And it is very uncomfortable moving around in bed with the covers rubbing against his skin.

They continue to try to monitor the extra 15 pounds that he is carrying of water retension by giving him stuff to make his body produce urine. The hard part is that although he has the urge to go, the pain meds interfere with allowing him to. So yet just another thing to be bothersome. We did find out today that he does have an infection in the urine, so they will be starting yet another anitbiotic for that.

Yesterday we were informed that the department of Infectious Disease was coming in to speak to us about an infection that they found in Anthony's blood. It turns out that he has got a staff infection. They are unable to tell us where it came from, but they now need to watch the new central lines they put into his neck to make sure it is not coming from them. If his body does not respond to the antibiotics that they will treat him with then they will have to take the lines out, and new ones will have to be surgically placed somewher else again. They then will test the ends of each line to see if that is where the infection started. We of course hoping that it clears up with the meds so that he does not have to worry about re-doing them.

These next 7-10 days will be the roughest for Anthony the mucus gets thicker and the sores spread. He has to sleep in an upright position so that he does not choke on the mucous that the body is producing everywhere within. It is amazing that they have something for everything to do with all of these terrible side effects. In this case he has a suction tube like they use in the dental office that helps him suck it out of his throat to make it easier to breathe. Especially since his platelets are low and by trying to cough it up over and over he was making his throat bleed.

Ok, so I have filled you in on everything Anthony is experiencing so far. Unfortunately I am told on a daily basis that this will continue to get worse for as long as he has no white counts to help him fight off infections. He is prone to everything in the air.
It should be in about 14 days that we start to see his white count start to re juvinate itself. It is at that time that all his sores and infections will begin to finally heal..

Would just like to thank everyone that continues to pray and support our family. For all of you that have sent cards and have been keeping in touch with Anthony, He loves hearing from everyone...
Please feel free to stop up to see him as he loves to see new faces..Mine does get kind of boring to look at every day!!!!

If I dont have anything new to report within the next few days, I would like to take this opportunity to say to all of you God Bless and Have a very Merry Christmas and a Happy, Healthy New Year !!! Feel free to drop by , we will be spending Christmas with Anthony in his beautifully decorated room :)

Thanks again
Love
Susan

Friday, December 16th 2006 12:42 PM

Hi All
I just wanted to try to give everyone a quick update(if that is possible) of how Anthony is doing.

The only way I can descibe it, is that he is tough...I am amazed how well he is handling all of this. His body is going through such terrible things, but as long as we explain to him that all of these things are "normal" after having radiation, chemo and a transplant he just accepts it. He does not complain. My heart is a wreck watching him go through this. And yet he greets anyone that walks into his room with a "thanks for coming to see me" and "how are you".

His body is developing sores, something called oral mucositis. Anywhere your body makes mucus the sores can develop. They can only be described as open flesh wounds. As you can imagine they are extremely painful. Thankfully he has only a few at this time. And we are PRAYING that somehow he will be spared and more. One of the problems with these besides being painful is that patients usually stop eating and drinking because they are so painful. They sometimes will refuse to talk. Although it would be ok for Anthony to loose some of the weight he has gained from treatment , it is not ok if he nutrition becomes an issue. Everything at this point is so important as the body starts to recover and God willing the marrow becomes his own. Everything needs to stay just so or problems start to snowball. So while i am giving you a medical lesson on this, what I am really trying to get accross is that I am begging for everyone to pray for some real specific things. This being one of them.

His other problem is his breathing. He is on an oxygen mask that forces him to breathe. His oxygen level without using it drops to 75-80 % ..Normal range is 100% . He gets short of breathe just lying here sleeping. So now it is mandatory that he keep it on most of the time.
His pain continues to feel like he has been hit by a HUGE TRUCK as he puts it. Therefore they have him pretty sedated pretty much of the time. So it is hard for him to talk on the phone. Either the person on the other end cant understand what he is saying because of his mumbling or he falls asleep on them as they are talking. He tries to wake for visitors, but really has a hard time staying awake. But let me make this clear. He enjoys everyone coming to see him, he just feels bad that he cant entertain, and apoligizes repeatedly for falling asleep on them.

So with that said, I believe i have covered what was most important and on my mind tonight. I cant say it enough how grateful we are for the continued support and prayers. I just ask that you continue until this nightmare is over. We feel so blessed that we are told things could have been worse, therefore We know, although he is suffering, God is getting him through this and is sparing him the worst of it. Lets just pray that God continues to watch over him and heal him quickly and somehow let him escape the worse of things ahead. Although they tell us, it will continue to get worse before it gets better over the next few days, I am holding on to my faith that God is going to see him through this with ease and comfort.

As always I just ask to hold Anthony up to God and ask him to stay by his side throughout this. And let Anthony feel his presence, peace and comfort beside him always. Help us pray that Anthony continues to know God is watching over him and that he continues to put his faith in God's plan.

Thank you everyone, I truly thankyou from the bottom of my heart. I just know in my heart God is listening to everyone in every state praying for our boy...

God Bless all of you, for all of you have given us the gift of love, support and friendship.

With Love
The Daniele's

"Take Courage...For the Lord has the power to help you heal and grow."

Wednesday, December 13, 2006 11:05 PM

Hi Everyone

We just got home from the hospital. Anthony really wanted me to stay tonite, but after he settled in he was ok with me leaving.

What started off to a great start ended up not being so great for him tonite. I had wrote a few family members saying how well he did today with the transplant. I felt as soon as i emailed it out, Anthony got sick. It started with very bad flushing in the face, which he felt his face was on fire. His chest got very tight , oxygen level dropped. So he had to do the nebualizer to open up his chest, and oxygen to help him breathe. Just as that was settled his pain got pretty intense and then he got sick to his stomach. Got a little intense as he threw up blood instead of vomit. As you can imagine Anthony was quite scard. Thank God I remembered them saying something about if his platelets were low and he coughed alot or was gagging he could rupture blood vessels in the throat and or stomach. Sure enough they had to give him platelets.
He continued to have severe burning in his chest, which they feel is either sores forming in the stomach or severe heartburn..

Needless to say within 2 hours he went from one thing to another feeling ill. Thank God he has the most amazing nurses taking care of him. Extremely friendly and very helpful with all of his needs.
Thank God each of his concerns were able to be addressed and each symptom releived by some type of medicine. By the time we left he was feeling much better and ready to hopefully fall asleep for the night.

I really just want to thank everyone so much for the phone calls, cards and prayers...All of you are helping us get through this and we could not do it without you all..

I will try to keep this up to date..Please leave Anthony comments, words of encouragements or just friendly hello's...I know he will love to hear from all of you..
He has a long road ahead of him. And Unfortunately it will get worse before it gets better...We just need to let him know he can make it through this, even if it is a struggle for a while...

Thank you all again And God bless !!!

"DO not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will gueard your hearts and your minds in Christ Jesus." Philippians 4:6-7.

(Thanks Jen..
It was the verse I was looking for)

Love
Susan

Saturday, December 9, 2006 5:53 pm

Hi everyone

Thought I would touch base here to let you all know how Anthony made out for the week.
As usual the nurses here are fantastic, and make his stay that much easier.

He had his radiation all week, and did well with it. He felt sick to his stomach only a few times, but was quickly relieved with medications. He had his normal pain in his leg which he was given his pain meds for. Other than that he really had an ok week. Thank God he slept well and got through the week with no major problems. We hope that somehow he is going to sail through this week with ease also. His doctor and nurses have explained that starting sunday/monday he will start feeling the effects of the radiation and chemo...Obviously we are praying for a miracle.

He started his chemo's today and will have them again sunday. He also started on a anti rejection medicine today which believe it or not has side effects of its own, so he is premedicated for that every 4 hours as it needs to run through his body for approximately 18 hours. So between chemo and premeds he has for the most part pretty knocked out today..Although he was able to stay up to hang out with some of his friends during the afternoon.

I truly believe in the power of prayer, and I also believe one of the reasons he had such a good week considering, is because so many are praying for him. Thank you so much ...

I will keep you up to date as we go through this next phase.. Wednesday is the transplant, and so far everything is on schedule...

Keep the prayers coming his way , He definately needs them this week....

Thanks so much
Susan

Monday, December 4, 2006 1.01 a.m

Hi Everyone

Anthony was admitted tonite to the bone marrow unit. He will start radiation first thing in the morning. Followed by a procedure to put 3 more lines in for IV's. The one permanant port that is in his chest is not enough for him to get all the chemo's and medicines and fluids, so they will be putting in another one that has 3 lines to it.

He will receive Full body Radiation 2x a day for 5 days. He will also be getting chemo.

This will kill both good and bad cells in his body and destroy his immune system completely. After the 5 days he will be given medicines to boost everything back up. He will have the immune system worse than a newborn baby born premature.

This procedure is not PAIN FREE, therefor he will be given pain med's around the clock to keep him comfortable. I cant express to all of you how critical this time is going to be for him. As happy as we are about finding a match for him, giving him the chance to survive. There are also alot fears and concerns regarding this. It is a very high risk procedure with many unpleasant side effects. It is also very dangerous. If he is to come in contact with any type of virus, cold, infection it ultimately could take his life. He also will be at risk for heart problems , kidney failure, liver problems and also brain damage. The radiation and chemo together both are very strong in killing every cell in his body, which ultimately will also be breaking his body down.
..
As risky as this is..It is Anthony's only other option to survive .

I have and I continue to be completely AMAZED in how strong he has been through all of this. He has complete faith in God and is trusting him to take care of him during all of this. He continues to keep me strong through the peace he seems to have about all of this. He has never displayed through any of this any self pity. (Except of course when he wanted us to give in to something ) lol.
All of us could learn something from him, especially when I see him think of others instead of himself. I am amazed that someone else could have a minor thing wrong, and yet he makes the time to check in on them, or to worry about them and want them to be alright. Finding time to comfort them..He blows me away, to be faced with such a life threatening disease, yet still finds in his heart to comfort someone else.

Ok sorry about that,I got off cue....

Anyways,once he has finished chemo and radiation , he will then start to receive medicines to continue to help his body fight against any type of infection. Then on Tues or Wed (12th or 13th) he will receive the transplant. Which might I add is not an operation as many have seemed to think. The process is quite simple for him. He will receive the NEW BONE MARROW through an IV. He will also at that time be started on anti rejection medicines and others to help his body adjust to the new bone marrow. Hopefully by a month later we will see his blood counts come back up. When they do that will be when we knew the marrow transplant has taken, and that is growing and becoming a part of Anthony.
During that time, it is critical that any visitors that come up to see Anthony know that he MUST NOT HAVE ANYONE that is the slightest bit under the weather/sick/family member sick etc. etc..come to see him.

He is aloud 2-3 visitors at a time. The room is completely different than any of the rooms he has been in before. It is on the same floor past the nurses station. (next to the tv room). When you enter the section of 4 room hall . You will have to wear a gown, gloves and mask. You will be asked to wash your hands and then take the gloves off before entering his room. Visiting hours are more enforced and are asked to be out by 10 pm.

I am going to try as hard as i can to update this as often as possible with his progress.

I also wanted to add that especially now during the holiday season if everyone could drop him a note of encouragement , it truly would be appreciated. Even if you leave it right here on the site. He is going to need to be reminded often as things get tough for him, to keep fighting the fight and not to give up...He will endure hell during the next few weeks and if we need to remind him every minute of every day why it is important for him to keep fighting than that is what we will do..Just please, keep everything positive !!!Positive attitude is the most important encouragement we can give him...Obviously we cant make light of what his body and mind will be going through, but he just needs to know from all of us, that although it is tough what he is going through, we need him to hold on and keep fighting so that ultimately there will be a happy ending to this nightmare.

I promise this will be the last time I get off topic..The rest of the journals will be strictly on facts, not add on's...lol

ALL I CAN SAY IS THANK YOU TO EVERYONE OF YOU THAT HAS CONTINUED TO STAY BY OUR SIDE THROUGH OUT ALL OF THIS. WE TRULY KNOW WHO OUR TRUE FRIENDS ARE. YOUR LOVE AND SUPPORT AND PRAYERS AND CONTINUED PHONE CALLS AND CARDS HAVE KEPT US AND ANTHONY FEELING VERY CARED FOR. WE THANK YOU FROM THE BOTTOM OF OUR HEARTS..

We also would like to thank all of you that helped us make our early Christmas Eve a night that Anthony will cherish for ever. From what I was told....At one time during the night more than 80 people were flowing through our house. I have no clue how we all fit, but it made Anthony so happy to see everyone of your faces...

See what happens when I dont write for a month...Have I lost anyone yet?? lol

Thank you again ...
Keep our Anthony in your prayers as he starts this next phase monday morning...

God Bless !!!
Sue and Joe

Saturday, November 11, 2006

I know it has been over a month and I am sorry for not keeping this page up to date. But there has been no news up until this week..

Anthony has continued doing his chemo and will continue to receive it up until the week of Thanksgiving...That Friday should be his last dose..He will receive a bonemarrow test on either the 17th or the 20th to see if this chemo has worked and put him into remission. If all is well then he will be given off the week after thanksgiving and be admitted into the hospital on Dec 3rd (sunday)..

He will then have the body radiation and chemo for the first week and the transplant the following week..

We are happy that they changed the regimen of chemo the last 2 weeks, as he is not the way he was with that first dose that knocked him out completely for a week..It was scary but thank God it was the chemo that caused it and not that it had spread..

Let me take this time to clear that up, just in case anyone got caught in the rumor that it had spread to his brain..It did not ..They were doing tests MRI's And Catscans and a spinal tap to make sure of that.,But thankfully all of the tests came back negative. His brain is fine...

I will update this as soon as we get the results of his bonemarrow test..

Thanks again
Susan

Friday, October 6, 2006

As most of you have read already, Anthony's marrow transplant has been put off.,.,.
We are hoping that by the end of this year it will happen. We just need to get him into remission..
He started taking some of the chemo's last night, and will start treatments as an outpatient on monday...

It is a major setback, but we all are determined to get through this..Anthony will fight this !!!! We are not going to accept anything less....

Please continue praying for his body to healed/cured...

I will keep you updated as I receive more info..
Thanks
Susan

Wednesday, October 4, 2006

Just in case anyone is missing their Christmas stuff from last year, The DUMMIES took a picture of themselves..
lol

Yes that is my darling Anthony and his friends...Of course their explanation was that someone was throwing it out...
"yeah Right" !!

Hi Everyone

We finally have a date......Anthony will be going in on October 22nd...It is a Sunday, but he does not have to be there until the evening...(why that matters, I dont know) I just figured i would tell you...lol

Anyway....On Monday (October 23rd) they will be starting with full body radiation. He will be getting the radiation twice a day every day for the week. He will also be receiving an extremely high doses of chemo.. This is a very intense process, but they need to basically KILL all of his blood, including his good stuff so that his body is ready to receive the bone marrow transplant..The transplant is given through his IV after his finished the week long process of killing all of his cells..He will receive treatment for a full 5 days..He will have 2 days of rest, and then on that 8th day he will receive the transplant..

I am trying to explain this as best as I can so that everyone can understand the process...It is going to be a very long process and we will not know for approximately a month if the transplant has taken. His blood counts at that time should start to recover but even then they will recover slowly. They are hoping that Anthony will respond well and if all goes well he will be aloud to come home hopefully 6-8 weeks after the transplant....There are some very important things that we need to watch for, one of them is called "Graph verses Host" What this means is the graph is what he has received and He is the host...Graph will try to take over which we want it to, but if it tries to destroy the host (he) there can be complications...It is a very common thing, but we are hoping for the least amount of it possible...This happens because he is receiving the marrow from someone not blood related...Everyone has some reaction, but we need to truly PRAY that it is minimal..I mention this only because it can happen anytime after his body starts to accept it and it starts growing as part of Anthony's cells..So as we become excited that it has taken we then will be watching carefully just how his body reacts to it...

Ok...So i gave you a little of the run down for the first 6-8 weeks..Now I will tell you that when he is finally able to come home, he will still be unable to do alot of things.His body will still be very weak, and will need assistance with basically everything he needs to do.. They say that hopefully within the first year he will re gain most of his strength back, but sometimes it take even longer. He will not be aloud take out food of any type or bakery items for a full year, and even then they will let us know at that time if it is safe for him to do...
I will be getting rid of my dogs for a few months..He is not aloud to be near any pets..Not because of the hair or dander but because of any microscopic things they can bring in from outside.. Even plants, grass, flowers same thing applies..Veggies and fruit are another thing that he is suppose to stay away from...We will be turning our den (aunt alice's old room) back into a bedroom for him...His new rooom basically is aloud only a few things...Because of dust, mold and anything else that grows in our houses. We think nothing of it, but it is dangerous for Anthony to breath in...Curtains, carpets, bedding all must be new or treated before he comes home...

So as you can see things will be quite different for a quite a long time...

This is where I am asking all of you to be dedicated to praying for him and our family..This is going to be a long process with a lot of changes..We really need your prayers in helping us get through all of this...Especially for Anthony who is about to undergo a very difficult time of his life....

Thank God for pain medicines as he will be living on a constant drip while in the hospital..We do not know yet how we will be working the visiting since he will be out of it most of the time...This will help him alot !!! But when he is able to have visitors it is a MUST that no one come up while even having the slightest sniffle...His life depends on the sterile enviroment that he will be in...Visitors will be required to wear gowns/gloves and masks the entire time entering his little area...The bone marrow unit is a small area on the same floor he is always on, but is much different. It has its own filteration system, and is considered sterile..The walls and ceiling actually come down in between each patient, and the vents and filters are changed...ITs a pretty cool thing how they do it. And we are thankful that they are all so wonderful there...

Alright so I have given all of you quite a bit of information. I did this so that everyone kind of knows what is about to happen, and this way when we start this, I will only have to update on the important happenings, as you are now all aware of what he will be going through for the most part....

He has another spinal tap w/chemo this friday...We are praying that the bone marrow test they did today will come back good....
For the next two weeks he will be meeting with the radiologist for mapping of what parts of the body each time they will be doing...And he will be having regular blood work...He is also battling with a bad cold/cough right now, and patiently waiting for it to go away.....

Sorry this was so long everyone........I just thought it was the perfect time to fill ya's in on as much as i could....I wish for anthony's sake it was a simple process but it is not...WE just need to all keep praying over and over...
We are blessed that he has a 10/10 match, and blessed that we truly have faith in his doctors and hospital...Now we just need to have faith that all is going to go well.....

Thank you everyone.....
Love
Sue

Sunday, September 24, 2006 12:38 AM

Hi
I know it has been a while....Sorry but I figured I would wait unti I had some new info...

We went to his doctor on Friday and this is what is new so far. They have an exact 10/10 match for Anthony to do the transplant. We only know that he is a male and that he is 44 yrs old. We do not know where he is from. We will not find any other info until a year after the transplant. This is just the way they do this type of stuff.

Anthony had some special blood work done on Friday in preparation of the transplant. He will be starting some treatments this week, starting with a spinal tap. They will take fluid to test, and then inject him with chemo. He will have 2 before the transplant and then 2 the week before while in the hospital. The week before the actual transplant he will go through heavy doses of chemo (extreme amounts)he will also have full body radiation throughout the week. This will prepare his body for the new bone marrow. He will have 2 days of rest after the treatments before receiving the transplant. The doctors best guess for a time for this to take place is about the 3rd week of October. It takes time for the donor and Anthony to finish blood work and results. Anthony also needs to have another bone marrow test before starting the prep stuff.

Now on another note, We are also looking into a second and possibly 3rd opinion. We got the numbers/names of different hospitals to go to. Originally we were taking him to Colombia in NYC but his doctors suggested us taking him out of state and possibly going to one in Seatle Washington or one that is in Boston. Monday (tomorrow) I will be checking out both of them. We feel we need to make sure we are doing the right treatment plan for him at this point. Whatever will make this outcome more positive is the route we need to go. So we ask everyone to pray that if a better option/plan is out there we are led in the right direction.
Although we would prefer obviously to have him treated right here in NY , if it means giving him a higher cure rate we will go wherever we need to go..

Other than that Anthony has been doing great. He actually decided to go back to work at the funeral home..As he says he is "hanging out with the dead" . It is giving him some spending money (which he goes through like water) lol
he has even been back in his favorite hang outs, and feeling well. Thank God!!!

Please continue to keep him in his prayers as we start this next chapter. Especially pray for us to be led in the right direction as far as his treatment plan.
And of course that he does well for this spinal tap on Friday..

Thank you everyone....
Just as soon as we have any new info I will update...

Sunday, September 17, 2006 1:17 AM CDT

MY WISH.....
by the RascalFlatts
To Anthony,
I could not have written this any better myself. This song is YOU,....I love you !!!!

I hope the days come easy and the moments pass slow,
and each road leads you where you want to go,
and if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
and if one door opens to another door closed,
I hope you keep on walkin' 'til you find the window,
if it's cold outside,
show the world the warmth of your smile,
but more than anything, more than anything,

My wish, for you, is that this life becomes all that you want it to,
your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
and while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
all the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
and you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
and you always give more then you take.

But more than anything, Yeah, and more than anything,

My wish, for you, is that this life becomes all that you want it,
to your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
and while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

My wish, for you, is that this life becomes all that you want it,
to your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
and while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
this is my wish
i hope you know somebody loves you
may all your dreams stay big

Wednesday, September 13, 2006 2:25 PM CDT

Hi

I thought by now I would have some extra news to tell you but everything is still the same.....

We have an orientation on this Friday at the hospital to learn what is to be expected during and after the bone marrow transplant...We are hoping that we find out something more than...

I just want to thank everyone that came for the bone marrow drive on Saturday. It really meant alot to Anthony and our family to see so many people come and be tested to help Anthony...Also would like to thank all those that helped with hanging flyers, making phone calls, and organizing the event....A special thanks to Robin, Danielle, Mike Antinucci and Craig and everyone else that worked to put this together....

Thank you all for your continued support and prayers. It is a great feeling when people come up and say that they heard Anthony's name mentioned during service at Wantagh Baptist, or at mass at St.Frances... Thank you for continuing to keep Anthony in your prayers...It is the prayers of everyone that is and will continue to get all of us through this,.,,.

by the way...Anthony is feeling good..Besides being tired here and there, he looks good, and feels ok!!!

Thanks again everyone....
God Bless !!
Love
Susan

Saturday, September 9, 2:38 AM

Just a REMINDER today is the BONE MARROW DRIVE AT WFD CHIEFS OFFICE On Jerusalem Ave in Wantagh...They will be there from 10 am until 3 pm.

Also Anthony's bone marrow test that he had done on Tuesday came back good so far...They are still waiting for some of the slides that were taken, but so far the results that they recieved are good. And his doctor believes that the rest should come back good also...

What does this all mean???? As long as Anthony is in remission and we find a bone marrow donor , Anthony will be good to do that transplant....He cannot of the transplant until he is in remission, and since his marrow test has come back good, it appears that the leukemia is in remission again...THANK GOD !!!!

Have a great weekend , and as soon as i hear any NEW news i will update to let you all know...Keep the prayers coming his way....We truly appreciate them....

Love
Susan

**** This pic was taken over the holidays...It is a little family and a little of friends...

Monday, September 4, 2006 1:11 AM CDT

Hi Everyone,

We just would like to thank everyone for making the effort to come on Saturday..It was real bad out, and still we had a great turn out...It was so nice to see everyone !!!
Anthony had a great time which of course was the intention.
I hope all of you had as much fun as we did !!!!

In case Anyone picked up a camera by mistake thinking it was theirs please let me know...It was a good friends of ours and it is No where to be found in the firehouse...It is a digital camera not one of the disposables...Please ask around....

Also I wanted to wait to let everyone know, but word has got out about a match for Anthony...
Here is the deal.....
They have found 2 matches....One is a female, she has not been fully tested yet, the other is a 44 yr old male who has had the rest of the blood work done...I was not told how long ago they did this extra work on, just that he was processed evidently for someone else that they thought he would have matched....Anyways, we are just waiting 1..to see if he is still available..2.. to be tested to be cleared of AIDS, hepatitis, etc etc etc...3...If all checks out ok, we need to find out when HE is Available to do it...
So I did not say anything because we still have other answers to get...
The bone marrow drive is still going to be September 9th, at the Chiefs office on Jerusalem Ave, in Wantagh from 10-3
We still need a back up plan just in case, and there are still so many others looking for a marrow just like Anthony..So please do not let this update change your mind if you were thinking to be tested...
Thanks...

I am enclosing a link to webshots, where I posted pictures last year...They are some of the pictures that I have got so far from Saturday nights party. Again, Thank you all for coming and for the unexpected wonderful gifts you gave to Anthony...This is a memory He and the rest of us will have forever......

Anthony has his bone marrow test tomorrow (tuesday) to see if this last chemo he had put him back into remission....I will let you all know just as soon as we find out....

Love
Susan

Please copy and paste this link into your search engine to view pictures...

http://community.webshots.com/user/lovemyboyafd

OR USE LINK below

Saturday, September 2, 2006 10:21 AM

To bad the weather is not as nice as it is in this picture....As you see Anthony loves all kids... This is our Little Carly.....

Good Morning everyone,
Weather is pretty sucky today , don't ya think??
I just wanted to let everyone know everything is GOOD for tonight...Thank God Anthony survived the week without getting sick!!!

For those that need directions....From Southern State, to Wantagh Parkway to exit 27 East (sunrise Highway) take to traffic light make left..Past McDonalds make 1st right on Park Ave..Go a past 7-11 on right side commuter parking lot... Park in there please...fire house is right there...

7:30 and dont forget your pictures or memories for anthony's memory book we are making...thanks

See ya's then....
Susan

Tuesday, August 29, 2006 12:37 AM

To all the ladies,
Now you know where Anthony learned to move his hips !!!!His Aunt Doris patiently taught him....Aww isn't he so adorable :)

Hi everyone,

I thought I would just let everyone know the progress on the match for Anthony.. I seemed to have given everyone the wrong Info about all of this. I suppose it is because I misunderstood what the Dr's have been telling me..So here it goes....

1st...I filled out paperwork that the hospital gave me. It was for a grant for Anthony

2nd I thought we were waiting for the results of the possible two to come back..(I was wrong) they have not even been tested yet. What we were waiting for is the results of the grant that I applied for..

3. The grant is for help from the State bone marrow transplant system to help cover cost of bone marrow searches. So today I was informed that they will grant Anthony enough money to search for 3 matches ..

I was thinking to myself hmmm pretty cheap of them, but hey it is that much less that we have to think about.
Well here is the big suprise..., Each TEST ON A POSSIBLE MATCH IS NOT 600.00 BUT 2,500 DOLLARS..Is that unbelievable?? I could not believe my ears when i heard that. The amount that i kept hearing was 600.00 well that is the co-payment we will pay when the grant picks up the rest...

4. I am telling you this because I feel so blessed. I cant even imagine what someone that has nothing would do.

We have had so many wonderful people donate to Anthony's fund to help us with these costs and We THANK you all...
Thank you all for being so kind ..Because of all of you , you have made it much easier and have taken one of our worries away..
I also feel that keeping everyone a part of this is making that many more people aware of how this medical system works..
Obviously whatever the cost~ is well worth it, but i repeat again, my heart aches for those less fortunate..

So long story short, We still have no idea if either of the 2 will be a match. The woman explained to me today, that she will be contacting the 2 hopefull's this week and will be hopefully making appointments for them to come in this week or next to be tested further. SO we have much more waiting to do...

Anthony is doing great... Going out a little to much, but hey I am just the "worrying Mom" .. He says he is fine !!

We look forward to seeing everyone Saturday Night..Don't forget your photos or words of encouragement..

Love
Susan

Satuday, August 26th, 2006 12:39 PM

ONCE UP0N ANTHONY WAS JUST A TEENAGER.....THIS IS A PIC OF HIM HOLDING LITTLE JAKE....JAKE IS NOW 4 SO THAT WOULD MAKE ANTHONY ONLY 16...WOW, TIME FLIES!!!!!

Anthony has been doing great !!! He has not been home much, out doing what ever he can while he can.... Just praying that he listens to his body and when gets tired...
But he is feeling good, and enjoying being able to drive his car and listening to his system...

No News still on the bone marrow match, we are waiting patiently.. We are going forward with the bonemarrow drive on September 9th at the WFD Chiefs office on Jerusalem Ave, in Wantagh. For anyone that is interested in being tested they will be there from 10-3 ...Please spread the word to friends. There are many others like Anthony in need of a transplant going through the same thing as he...

ANTHONY'S Party is just a week away..It kind of snuck up on me, therefore I apoligize for late invitations..Time flew by while Anthony was in the hospital, and I was late getting them all out on time..I still am in search of addresses, but hope that word of mouth,email and this site everyone knows about it... PLEASE PLEASE PLEASE let me know if you will be coming...by SUNDAY of this week...
IF in doubt, please know ...THAT YES YOU ARE INVITED !!!!!!
Lets just pray Anthony does not over do it this week, so that everything goes smooth for him for his party..Looking forward to seeing everyone there ...

If anything should change with any of the details I will post here..Please remember to check in as things change quickly around here....

Thanks again everyone for your continued support, prayers and words of encouragement for Anthony....

TO Jen and Bobby (in Florida), Anthony loved everything you sent him...All the superman stuff was right up his alley....lol

See you all Next Saturday at 7:30 ..
Love
Susan

Thursday, August 24, 2006 7:11 AM

Well he finally came home yesterday...

They let him out and he was thrilled.. He does not have to see his doctor until next week. His counts are all coming back up and he is finally feeling much better.

We finally figured out why he was completely out of it every day...The idiots at the hospital were giving 2 of his medicines that he usually takes before bedtime to him in the morning...Therefore he was out of it everyday and at night wide awake....Discussion on that will be done very soon with his main doctor....

Other than that we took him to OUTBACK for dinner and then he stayed in to watch a dvd with his friend...

HE's HOME and we are so happy that he is feeling better!!!

Still waiting for results of a match for him, and no word yet as to when the transplant will take place,,,

Keep the prayers coming his way...

Love
Sue

P/S please send your responses for anthonys party...really need a head count .....

Tuesday, August 22nd 12:06 am

UPDATE FROM PREVIOUS JOURNAL ABOUT COMING HOME TODAY....
HE WAS NOT ALOUD TO COME HOME ...HE MUST FINISH OUT HIS ANTIBIOTICS FOR THE INFECTION HE HAD WHEN HE WAS ADMITTED. THE ANTIBIOTIC CAN ONLY BE GIVEN THROUGH IV..NEEDLESS TO SAY HE WAS IN A PRETTY BAD MOOD.....HOPEFULLY TOMORROW (WENDNESDAY) HE WILL BE ABLE TO..

AMAZING GOOD NEWS:
Anthony is coming home tomorrow, !!!
Got word today (monday) that his doctor is allowing him to come home on Tuesday. His count went up to 1.6 , I have no idea why he is allowing him, but he is..Anthony is very happy to be getting out of the hospital.
Joe and I are going to go up early in the morning to speak to the doctor to find out under what conditions it is that he is allowing him to come home. I am going to guess that he is not going to be able to do much, being his count is still so low.. But we will find out, and I am most interested in why he is letting him leave...I must admit it does concern us...

He had his normal type of day with his pain,other than that nothing else to report...

I will update everyone Tuesday night as to what is hext on the schedule for Anthony, and if we find out anything about the possible 2 matches they were looking into for him,.

Keep the prayers going for our boy..
Thanks
Sue

I stole this picture from someones myspace... I love the way Rich is hugging my boy !!!!

Sunday, August 20, 2006

Anthony has survived a week of being in the hospital.
Of course he is bored out of his mind, and cant wait until he can get out of the place...
Today was not one of his greatest days again. Besides his normal pain that he has been having all week he got a migrane in the middle of the afternoon. Thankfully they got him his medicine early enough so that it didnt peak.
His doctors also have up'd his dose on pain medicine and are giving it more often now. Until he comes off the Nuprigen shots the pain will continue and as each day goes by , the pain is becoming more intense. They are just waiting for his white count to start recovering and then he will be able to stop it.
His white count was 0.1 for the past week , today it finally moved a little to 0.3 .. Now for your lesson on white blood counts...In order for him to actually come home , it has to be at least 4.0 and even then that is considered as being at high risk for infection.
But we will get there, hopefully by the end of this week he will be somewhat in the Normal range to come home.

Feel free to visit as long as you are not sick. He loves the company..(after all tv and talking to us are not as fun). Danielle and Jess and Aunt Danielle(and his boys, Jake and Matthew) have been our saving grace with the visits...It gives me a chance to keep the house somewhat normal knowing that they keep him company and entertained...THANKYOU!!
Just to show you dedication... Jess comes straight from work when she gets off at 10:30 PM- she stays until Danielle gets there at 4;30 A.M (danielle is a bartender). Danielle stays until Joe and I get there usually around 12:00. As you can see the two of them have been wonderful company to him....And have somehow been able to survive his snoring...!!!!hahahaa
Well thats it for now...Please continue to keep in touch with anthony, it really helps his day go by quicker!!!

I'm including the info from previous journal about the bone marrow drive...Also if any one has any questions about the Party on the 2nd of September, please let me know!!!

Again, thank you everyone for your prayers.
Love
Ant's Mom

We will be holding a Bone Marrow Drive on September 9th at the Wantagh Fire Dept.Chiefs office at 2995 Jerusalm Ave in Wantagh. It is located West of Wantagh Ave just past the Wantagh Parkway.

Hours: 10:00 - 3:00

Friday, August 18, 2006 7:38 PM CDT

Hi All

I have some information for those that are looking to be tested for a bone marrow match...

We will be holding a Bone Marrow Drive on September 9th at the Wantagh Fire Dept.Chiefs office at 2995 Jerusalm Ave in Wantagh. It is located West of Wantagh Ave just past the Wantagh Parkway.

Hours: 10:00 - 3:00

Now for my Anthony.... He still is not feeling all that great. He has alot of pain in his bones. He is extremely tired which the dr's are saying is because his blood counts are still very low. We are hoping that they are going to start coming back up with in the next few days.

We just want to thank everyone that has been coming up to the hosptial to donate blood and platelets. Anthony feels much better knowing that comes from people that he knows...

If any more info comes in about the bone marrow drive I will post it here...

Please make sure everyone is keeping the 2nd open for Anthony's party... Invitations will be going out over the
next few days..If you dont get one, it is not because your not invited, it probably is because i am having a hard time locating your address..lol
So if you think i need it send it to me...Anthony wants everyone there...email me at sdm34@aol.com if you have any questions..

Note for Anthony's friends: Since he did the inviting, you will not be getting invitations. But I need you to know that i am collecting any pictures you have taken with him anywhere, house parties, beach, Dublins etc... If you dont have any, then please try to write on 4x6 index card a fun memory,story or just write down some words of encouragement. We will be making a scrapbook for him to have while in the hospital for his transplant....

Thanks all,Please continue with the prayers...It is the only thing that is getting us through this..

Susan

Friday, August 18, 2006 7:38 PM CDT

Thursday, August 17, 2006

Just an update to let you know Anthony's fever is gone.
He ended up having viral infection which he is now on antibiotics for.

He is feeling good except for the pain he has throughout his body, bones and joints from the Nupregen shots he gets every day that helps boost his white count. It is a normal side effect from the shot, and they give him pain medicine to help him manage the pain.

So far no word on a bone marrow match..They have a special person that takes care of that for us. She also takes care of the paper work(Thank God). Right now she is applying for a grant to help cover some of the expenses of doing the search. It costs $600.00 per search that they do, only on the ones that might be a match. Thank God they dont charge for each person in the registry...

Other than that everything is the same. We are still waiting for his blood counts to recover, and until then he will be in the hosptial. Hopefully by next week some time he will be able to come home.

He has been receiving blood and platelets the last couple of days and looks good.

Please feel free to visit as long as you feel good..

Keep Praying,Our answer and Miracle is just a prayer away!!!!

Monday, August 14, 2006

INFO UPDATE :

ANTHONY IS IN SEARCH OF A BONE MARROW MATCH..JESS AND JOEY CANNOT BE USED...

SORRY..,....SORRY ....SORRY....

I gave the wrong information out about being tested to be a match.
In order for anyone to be tested you will either have to find a bone marrow drive around you that is taking place or wait until WE put one together with the help of NYC blood bank.
Some friends of ours are working on putting it together. Just as soon as we have the info of what it involves, where and time I will leave the information here...Sorry for any confusion this might have caused..AND THANKYOU TO ALL OF YOU THAT WANT TO HELP...

ALSO FOR THOSE WHO WOULD LIKE TO DONATE BLOOD OR PLATELETS..
If you have any questions you can call the Blood donor service at 516-562-4204.

You will need an appointment so please call ahead.
Monday through Friday 8:30 -4:30 and
Saturdays between 8:30 - 3:00.

Please be sure to mention that you are donating to Anthony's bank.

Anthony was admitted back to the hospital Sunday night for a high fever. He has been put on a few more antibiotics to cover infection. He also received platelets and will be in need of blood. He has pain from the shots to boost his white count, which by the way is 0.
He will be most likely be staying in the hospital this time until his blood counts fully recover. Hopefully by next week.

If you want to visit he is in room 703 monte. Visitors cannot kiss, or shake hands or hug as he has no immune system to fight even the slightest sniffle...

Please continue to keep him in your prayers...We really need God's help...
Thanks
Susan

Saturday, August 12, 2006 11:42

Just a quick update to let you know Anthony is doing well.
He went for blood work on Friday and although his white count is 0 his other blood work was not to bad. He will need platelets on Monday, and by thursday will be needing platelets and blood transfusions. The white count being so low he is restricted from everything. Although his doctor gave him permission to go to his cousin Nicole's wedding today as long as he kept his mask and gloves on and sit in the back of the church. He was happy he got to see her take her vows.

There is still no answer as to Jess or Joey being a match. The doctor again explained to us that it does sometimes take this long to get an answer. We of course are just praying that the answer will be good news.

OK so about the party...It is on for September 2nd which is a Saturday. It will be at the firehouse on Park Ave . I will be getting invitations out asap. But for now please set the date aside and spread the news.
We really want this to be a very special night for Anthony, and really would like everyone to come and join us have a great time.....
If anyone needs any info asap before i get the invite's out call me 785-2321

Please continue to pray for that perfect match for his bone marrow transplant, and of course for God to help him get through these next few months...

Susan

Tuesday, August 8, 2006 9:49 PM CDT

Hi All

Some good news for a change....Anthony's Doctor is allowing him to come home tomorrow (Wednesday). Anthony will have to act as if he is in the hospital. No Going out for anything except his checkup's and blood work. So please continue to stop by and visit with him. He will have to have blood work 2-3 times a week to see if and when he needs platelets and blood. His doctor thinks by the end of this week he will need them. But he can get both as an outpatient. We will have to watch for fevers and any sign of an infection. If either occur he will have to be re-admitted into the hospital. WE are all praying that he is able to stay out of the hospial for as long as he can.

When I spoke to the doctor this morning he still had no results concerning Jessicca and Joey's blood test for marrow match. We really are hoping that they come back by this weekend. He said it is normal for them to take as long as they are taking. So we just need to be patient.

If all goes well, Anthony's counts will drop between this week and next being the worse. After that they will start to come back up. The following week which is the last week of August he will have the bone marrow test to see if this chemo put him back into remission..(PRAY) If in remission at that time he will admit him back into the hosptial the week of Sept. 11th and start radiation and chemo's to get rid of anything else that might be hidden.. He will have 5 days of intense chemo and radiation covering all areas. He will have 2 days to rest and recover and then on the 3rd day he will receive the marrow transplant.

It is expected that he will be in the hosptial anywhere from 6 weeks to 3 months following the transplant. So as you can see this is why his doctor feels it is important for him to be at home as much as he can now.

Anthony has no idea, But we are thinking of having a huge party before the start of re-admit to the hospital. Just as soon as we can predict a date we will let everyone know. We are going to have it big, so that he can have some fun before going through this last hurdle..We have to make sure his counts are up so that he can be comfortable being around alot of people.

We truly feel that having this huge Party for him will give him even MORE THE REASON to FIGHT and not get discouraged during this setback....

EVERYONE and we Mean EVERYONE is welcome to come. We are going to talk to the doctor tomorrow for an idea as to when we can do this and try to get the fire house hall to hold it at. So make sure you check back here for details...EVEN those of YOU that live OUT of STATE or Not so close, please plan on coming....

Hahaha, Blonde moment again...Anthony is probably reading this, so I guess it wont be a suprise !!! lol
So Anthony start spreading the news we are having a party for YOU......

Please continue to stop by to see Anthony...It can get just as boring at home as it is in the hospital....

As always I continue to ask everyone to pray for Anthony. Pray that God continues to give him the strength to fight this. Pray that God continues to put the right doctors and the right chemo's and med's to cure him. That Jess or Joe is a match, and if they are not that it will be easy to find the perfect match for him quickly. And of course for the obvious ~ That God continues to heal Anthony and allow his body to be CURED FOREVER..
Love
Susan

Lord, make me a channel of thy peace,
that where there is hatred, I may bring love;
that where there is wrong, I may bring the spirit of forgiveness;
that where there is discord, I may bring harmony;
that where there is error, I may bring truth;
that where there is doubt, I may bring faith;
that where there is despair, I may bring hope;
that where there are shadows, I may bring light;
that where there is sadness, I may bring joy.

Lord, grant that I may seek rather to comfort than to be comforted;
to understand, than to be understood;
to love, than to be loved.
For it is by self-forgetting that one finds.
It is by forgiving that one is forgiven.

Monday, August 7, 2006

I have been trying to post since Friday, but something has been wrong with the site.

Anthony is doing ok, Thank God!! He had a rough day on Friday from a different chemo that they gave him.Thank God he only had to get it that one time, as he had a terrible allergic reaction to it.
It was quite scary to watch and it totally freaked Anthony out, waiting for it to pass.

His counts are starting to come down, so He is prone to infection. Please be careful not to come up and visit him if you think you have any type of cold or stomach flu

We are still waiting to hear if Jessicca or Joey is match for his bone marrow, but as of today we have heard nothing. Hopefully some time this week we will get an answer.

He will be needing blood and platelets starting some time this week, so please if you are able to, make an appointment to donate. The info is on the last journal written.

I will update this just as soon as i hear any news to do with his treatments or test results.

Thankyou ALL for your continued prayers and thoughts...

Susan
PS - How stupid am I???? I guess you could say i have been having a blonde moment. I have been typing in WHITE therefore that is why the page was empty .....LOL>.. but as you can see if you look at journal history, My postings have been going through....I will try not to be so blonde in the future. Hey at least I have figured out my problem....lol

Saturday, August 5, 2006 12:13 pm

Hi all

Sorry I am not keeping in touch as i should be..I really will try harder!!lol

Anthony has been doing ok..He has been receiving chemo in the morning and besides being a little tired and cranky, he is doing well.
On Friday they introduced a new chemo that he ended up having an allergic reaction to. It was scary for all of us to watch, but he made it through, and we are thank ful he does not have to take that particular chemo again.

He had a low body temp, which caused him to shiver uncontrollably. He actually looked like he was having a seizure. His body was spazzing out and shivering trying to warm up. They had to give him quite a few doses of demoral and hydrocotisone to calm the body down. Soon after he became very sick and when that passed he shot up to 102.0 fever. It was not an easy hour and half for him. Once it all passed he was able to rest comfortably..

He ran a fever most of the night last night, but they think it was still a reaction from the chemo.
Within a few days His blood counts will be dropping. So please , as last year, if you feel like you are coming down with a cold or the sniffles, please talk to him over the phone instead of seeing him. His body will not be able to fight off even a runny nose. An infection of any type will delay his treatments.

We have not heard anything about the bone marrow test that Jessicca and Joey did the other day. We are hoping to hear something by the beginning of this week. Just as soon as we do hear, I will include it here on the web page...

Again anyone that can donate blood or platelets, we would truly appreciate it...You can find the info for blood lab on previous journal...

Thanks again everyone, as always because of you , we are able to get through this just a little easier...

God Bless
Susan

Saturday, August 5, 2006 1:31 a.m

Will update Saturday morning..

Wednesday, August 2, 2006 6:35 pm

Hey everyone,

Anthony started his chemo today. It is a higher dose than last year and they have added other chemo's to the cocktail to kick this stuff out of him quickly.

He actually will only be having 5 days of chemo from what it looks like on the schedule that they gave us to go by.
I will know more in the morning when I speak to his doctor.

I did speak to his doctor by phone today after Anthony saw him. We will be testing Jessicca and Joey Thursday to see if their DNA matches well to Anthony. It is tested by a simple blood test done at a lab.

We ask that you pray that one of them will be a good enough match for him so that the search ends there. It will also be better if Anthony can receive a bone marrow from a sibling.

Just as soon as they are able to get Anthony back into remission and we have a match for his bone marrow they will allow Anthony to come home for a week or two and will then re-admit him to start the process for the transplant.

Anthony will be in need of blood and platelets in about 7 days. For anyone that can donate his blood type is A and can also use O blood.
ANYONE can donate for PlATELETS.

If you have any questions you can call the Blood donor service at 516-562-4204.

You will need an appointment so please call ahead.
Monday through Friday 8:30 -4:30 and
Saturdays between 8:30 - 3:00.

Please be sure to mention that you are donating to Anthony's bank.

For those who have been trying to contact Anthony by the hospital phone, We apoligize for not being able to get through. He has his lap top hooked up through the phone line as he cannot pick up through a router..

As always please continue to keep Anthony in your prayers for a full recovery and a special request for either Jess or Joey to be a match for him..
Thank you..
Susan

Wednesday, August 2, 2006 6:35 pm

Tuesday, August 1, 2006 10:15

Dear Family and Friends

I truly had hoped that I would not have to be doing this ever again. We really were not expecting the news that Anthony had relapsed. There is no reason as to why this has happened, we just know that it will be treated aggressively as it was a year ago.

He was admitted late today, therefore no treatments will start until probably tomorrow. He had the usual tests such as x-rays and Ekg and blood work. We are hoping that he will at least get a good night sleep tonight.

Please feel free to leave him POSITIVE messages and encouraging words to get him through this once again.
Through prayers and all the love that is felt for him, I know in my heart that Anthony is going to get through this and be even stronger and wiser because of it.

I will update this page as often as i can. I will especially now try to drop a few lines each night to let you know his progress.

Again We all thank you for your continued support and prayers for Anthony and for all of us..

Anthony and "US" will get over this bump in the road again..
We won't accept anything else !!

God bless and Thank you

Sue Joe

Friday, March 10, 2006

So it has been a very LONG time....

Just in case anyone still checks this web page, I thought it was about time to update it.

Anthony is doing great.. He has started the lighter of the chemo's and will be on them until the summer of 2007. So far so good. He looks great and is back to work part time. He started going back to the gym to get his strength back and to loose some of the weight he gained during chemo. Tough thing is ..he still needs to take steroids every month for one week. So he complains about the extra weight he adds on each time, but it has been coming right off ..

Thank you ALL again for everything you have done for Anthony and our family. We could not have gotten through it without all of your prayers and help,.

I will attempt to update this from time to time... But NO news is Good news...

God Bless
The Daniele's

Wednesday, December 14, 2005 10:26 PM CST

I'm Sorry it has been so long since i Updated this page..
I guess you can then assume things have been ok with Anthony. We did have some delays in his treatments due to his white counts being to low..But his counts came up finally and he had his first treatment a week and half ago. He will go in on Monday the 19th for his second treatment and will again be in for 3 days...Things are going smoothly..Thank God!!!

On a very sad Note...Tore has passed away just this week.
Although he had the bone marrow transplant in the summer, he continued to have many complications and never fully recovered..As time went on they found that he had leukemia in the spine that hidden during all the treatments before the transplant..
It is unfortunate but at the point there was nothing more they could do for him. Other complications followed by a few falls, and he had a bleeder in the brain..
Tore passed away at home this past tuesday with his Mom and brother and girlfriend who he was suppose to ask to marry him just this Christmas..
Tore was just 24 in September. He was an awesome kid who was so positive in all of his thinking. He gave Anthony so much hope and great advice in these past 6 months..He fought this Leukemia till the very end..
Please pray for his family during this difficult time
Thanks
Sue

Saturday, November 12, 2005

Once again I completely forgot to update...Anthony came home on Wednesday. His fever is gone and his cold for the most part has cleared up.

He has one more chemo treatment this wednesday for this round. After that he will have a weeek off for Thanksgiving and then he has to finish the last of the INTENSE chemo... It is the repeat of round 3 which is 3 spinal taps with chemo...Which he will be admitted for each one for 2 or 3 days each time. And then we start Maintenance which hopefully go by real quick for him...18 months of it, but he should be able to go to school or go back to work 2 or 3 months into it.

I am happy to say all his counts have recovered. He had quite a few transfusions with this last one.. But he is doing so well that he actually went out tonight with his ol' friend Jack and some "ladies" to to Bogatz which is a club where hopefully he will blow off some of the bottled up energy by dancing...Of course keeping my fingers crossed that No one is sick there...Haha what are the chances of that???

Thankyou all for your prayers, and again please keep Tori in your thoughts and prayers as he goes through yet another hurdle...

Monday Early AM 1:30

Anthony is back in the hospital...
He had the fever Friday night, but convinced us to hold out and not go back into the hospital. His dr. called Saturday morning and had Anthony promise that if he got a fever again that he would go into the hospital. Why Anthony is not taking this serious is a mystery to us. We have tried to explain how serious this can be !!! Well we ended back up at the hospital by 9 pm and finally was admitted to a room by 2:30 am. It was a long night. Before Joe and I came home they had already started him on IV antibiotics, and were preping him for platelet transfusion.
This morning he also received another blood transfusion. We are hoping this will have caught him up to where he should be. He will be receiving more chemo on Tuesday.
As of tonight when we saw him he had a slight temperture.
But when i just spoke to him 1:00 am he seemed to think he was spiking again.
I will have to wait until the morning to find out if his temp went up again.We are hoping not!!! So that he can come home. He is miserable there...If anyone has time to go visit, please do!!! ONLY HEALTHY Visitors PLEASE...... We are hoping that Anthony will now learn the lesson of not hanging out with people that have a cold and cough as he has for the past 2 weeks.... I will continue to keep you posted as soon as i know when he will be out...I am leaving Fridays journal below for anyone that didnt get a chance to read it....
Please pray Anthony continues to need all of everyone's support and prayers...Thanks
Anthony's Rm is 701 - he also has his laptop with him , so leave him a message.......

Friday's journal

Yes I know I am getting real bad with this...Sorry everyone for not being more on top of this web page....

As most of you already Anthony was able to come home last Friday from the hospital. He had a good weekend and felt pretty good for the most part. He started with a sinus infection on Saturday but was put on antibiotics and was able to use Pain killers when he needed them. He is not aloud to use asprin or advil products. And tylenol did not help at all.

Monday he got out with Carly and Taylor (next door neigbors) and went trick or treating with them for Halloween...
The rest of the week went pretty smoothe spending time with his friends..Although each day he became paler and his lips were white as snow, he seemed to be feeling pretty good.

On Thursday morning he had a routine office visit and blood work and was told he needed to have a transfusion of blood and platelets. (Little did we know by today, his blood counts would drop even more)He went on with his usual way the rest of the day trying to avoid the fact that he was also at 0 = ZERO on his white count...By thursday night he was told HE COULD NOT GO OUT!!! and that he was taking to big of a risk...

Unfortunately by Thursday night Someone ruffled his feathers and "The good ol' Italian temper" got out and he was only moments away from hitting his fist through some glass....Thankfully somehow he did not!!!!!!!!!! One of the biggest reasons ~ is that his platelets were at a CRITICAL low in which , had he busted the window with his fist and he cut his hand, His doctor informed us he could have bled to death before anyone could have gotten him help...HMMMM do you think a Guardian Angel was looking out for him? Thank God YES!!! When your platelets are low, you cannot clot to stop bleeding. In Anthony's case today they were the lowest they have been yet...
So today Friday he went to the hospital and received platelets through an infusion and also got 2 units of blood. He was also CRITICALLY anemic!!! Yes that is what was causing him to be so White...

When we got to the hospital he was running a slight fever in which his doctor informed him he wanted to admit him. But as always because of Anthony's personal life, he pleaded with his dr. not to admit him today. And promised that if he ran a fever he would come back in.
As a pre-med he was given tylenol, benedryl and hydrocotizone so that he would not get any reaction to the transfusions. So the tylenol brought his temp down and he was allowed to leave after all of his transfusions ~ which in total took 7 and half hours..Long Long day!!!

So Here is Friday night and I am praying for the best.. If he runs the fever tonite he will be admitted back in to the hospital. Ahhh forgetting one thing.. One of the reasons they think he is running a fever is because He obviously caught someone's cold that he hung out with all week. Since now he does not just have a sinus infection but also a cough. So the dr. has also prescribed yet another (4th one) antibiotic to help fix the problem before it gets worse.
So now we need to all pray that we dont run into another problem with the c-diff again...(from all of the antibiotics)

So I think i have caught you up on Anthony's past week.
For next week, he has to go in Monday for possibly another transfusion. Then on Tuesday he will start back up with chemo...He has 3 more chemo's for this phase. And then we are onto the last of the heavy stuff...

Thank you all that continue to keep him in your prayers. It means so much to us to know that we are not alone...
God Bless and please continue to pray for Anthony's health, spirit and mind.....

Thankyou :)

Wednesday, October 26, 2005

Sorry once again for not updating on time..Things have been crazy as usual in the Daniele home...

After a bad week of stomach problems, Anthony finally started to feel better this past Saturday. They believe that he had C-Diff which is from to many anti biotics which ruin the good bacteria in the intestines.
He finally had a normal couple of days before going back into the hospital Yesterday (Tuesday) . His blood work from Monday still was low, but higher enough for them to finally get him back on track with his chemo schedule...

He had a spinal tap (hurt him real bad this time)which once again they gave him STRONG chemo through followed by a couple of other chemo'given through the IV. He slept for about 2 hours after the spinal and as soon as he woke up, he became violently ill for the next 4 hours straight. This one was worse than any of the others he has had. They gave him about 4 different types of medicines to help stop it, but nothing seemed to be working.
He had a very rough night that finally stopped about midnight..THANK GOD!!! When i spoke to him this morning he told us that he felt much better..

He will have strong chemo for 3 days straight. Today is day 2..We hope to have him home by Friday as long as we don't run into anymore problems. The chemo's he is getting this time have the side effect of fevers. So if he starts to run them, he will have to stay. Or if he comes home and gets one he will have to go back in....
After this he has some lighter chemo through the next few weeks and then we are finally over with Round 5....ONE MORE TO GO AFTER THIS ~ THEN MAINTANCE !!!!
Please continue to pray for him as he finishes up this strong stuff...
Thanks again everyone!!!!

Note: As of tonite Anthony had an ok day. He was not sick all day ThankGod!! Tonight he felt ok except for a headache and a start of a fever.

October 19th 2005

Sorry again everyone for taking so long to update this. Anthony is doing ok. He still is having some stomach problems, but is surviving.
I waited to update because we really didnt know when he would be going back in to the hospital.
Anthony's counts were down last week when we went so they postponed his chemo for this week.
We had to re-do his blood work yesterday (Tuesday) and we found out today it came back better than last week, but is still low.
Therefore they will re-do blood again on Monday(next week) and if all is good he will be admitted on Tuesday the 22nd.
Of course he is trilled because he wanted to be home for Homecoming this weekend.....Wantagh verses Bethpage..
Good luck Warriors!!!!!!
Well that is all the news..I will let you know for sure if he goes in next tuesday..
Thanks again everyone for your cards that continue to come in the mail ..
And for all of your prayers...
God Bless!!

Tuesday, October 4, 2005 11:00 P.M

Anthony is HOME... :)
He came home late this afternoon. He is feeling MUCH BETTER...He had his last chemo yesterday for this round..Everything came back fine with the catscans and the MRI. His blood counts finally came up as of today. His white count which helps with infection is still a little low but safe enough for him to finally be at home.

He is very tired and is sleeping alot but that is from the chemo and should pass within a day or two. Next week he should be starting the next round of chemo... I felt like this one took forever to end, and here he goes starting all over again. They are unsure if they are going to do another bone marrow test on the 10th, we will find out on Friday . Otherwise by next wed or thurs he will start round 5..ThankGod he is almost finished!!!

He is right now being treated for high cholestrol and high trigliceroids (? spelling). They believe both may be high due to some of the chemo's and it possibly is temporary, but they have to treat them both regardless, to be sure we dont run into problems with the pancreas. He is also has been monitored all week for LOW blood sugar. Which would be Hypoglycemic..Again all his blood could be screwed up from the chemo's... They will continue to monitor his blood sugar, and if need be they will also add medicines for it..

Thats all i have for now, I just wanted to let you all know he is home and feeling better..Thanks for all of your help and your prayers...God Bless!!!!

Wednesday September 28th 2005

I figured I would keep everyone up to date with Anthony..His stomach is feeling better but still not 100 %. He has been running fevers, and they are not sure as to why. At first they thought it was to do with the nuprigen shots, but he has been off them a few days and he is still spiking fevers at night. The extreme thirst i was talking about in my last update, has now caused him to swell up in his ankles/legs arms and face.. He seems to be getting rid of all the fluid so they dont know why he is retaining. The explanation that they give to us is that it could be the chemo doing it to him. He shaved his head and face yesterday because most of it started to come out again in clumps.. Although he went through this once before it is devasting him again.
Anthony will be having a MRI today of his brain and neck. Besides his slurring, he has no memory of last week and even things that just happened the day before. They believe it is coming from one of the drugs they have been using, but as a precautionary they are doing the MRI to rule anything out. He was also told that if his stomach does not 100% improve by the time the fevers brake that they highly recommend that he does not refuse the catscan of his abdomen..
He has more chemo Thursday and then again on Monday...Thank God this round is almost over...
Please pray for him..Pray for his mental state as he faces once again new challenges and fears and for complete healing of his body...My poor boy continues to feel like @#@#$..I am leaving Mondays journal below for those who have not read it yet...
DONT FORGET ABOUT THE CAR WASH THIS SUNDAY....DETAILS BELOW

THANK YOU AGAIN EVERYONE, ESPECIALLY UNCLE BILLY WHO CONTINUES TO MAKE MY BOY VERY HAPPY EVERYTIME HE COMES TO VISIT....

MONDAY SEPTEMBER 26TH 2005
Anthony is better thank God!!! His stomach problems for the most part are not bothering him as much... He still has been running a temperature but they believe that is coming from the nuprigen shots, and they also believe the terrible pain that he is having in legs and groin is also coming from the nuprigen. They had to keep him on it though because of his white count being so low.

If you have spoken to him early morning or late night i am sure you have noticed that he is slurring his words... No he is not drunk!!! They believe that is coming from a new drug they are using, it is a possible side effect and they are keeping an eye on it.
Other than the pain and the slurring Anthony is doing ok...He is extremely thirsty drinking gallons of gatorade (they do not know why) .He simply is a mystery these days..
His stomach problems they believe was just a side effect from the chemo, they could not find anything wrong with any of the cultures they did to say it was viral or bacterial..We are just happy it is finally going away!!! It was very painful for him.

We have no idea when he is coming home, we think maybe at the end of this week or beginning of next...He still has more chemo to finish this week..We will let you know just as soon as we find out more..I know they are waiting for the fevers to be done with and for his counts to recover..He also will be back on the steroids this week, so please try to be patient with his lovely mood swings that he gets.... :)

The car wash fund raiser is this weekend Oct 2nd so please try to stop by..If anyone can help out selling raffles with Matt and Danielle please give danielle a call @ 804-0452 or email me @ sdm34@aol.com and i will pass on the word..Details to car wash below...

Thank you all that have taken time out to donate blood and platelets!!!
Please continue to pray for Anthony ..
after this round we have 2 more to get through until he starts maintance..... :) His next bone marrow test will be October 10th....
FYI....Anthony's room number is 703 Monte

AGAIN....IF ANYONE CAN DONATE PLATELETS OR BLOOD , PLEASE CONTACT NORTH SHORE AND MAKE AN APPOINTMENT....THANKS!!!

I just wanted to let everyone know that COACH PIC AND HIS Mepham High School Football team is holding a HUGE car wash OCTOBER 2nd All day from 8AM to 6PM..
I think it is pretty amazing that this is the 3rd fundraiser that Mepham High school will be involved with for Anthony..We thank all of you at Mepham for being so supportive and doing so much to help out...
It is being held at
THE CLEAN MACHINE CAR WASH @ 1199 NEWBRIDGE RD, IN NORTH BELLMORE.....
JETS MERCHANDISE, TICKET RAFFLES, BAKED GOODS, FOOD AND BALLOONS FOR THE KIDS..
FOR 24 HOUR INFORMATION CALL 516-221-6100 OR VISIT THEIR WEB PAGE @ WWW.CLEANMACHINECARWASH.COM

ALL PROCEEDS will TO GO TO The LUPUS FOUNDATION OF AMERICA AND to ANTHONY...

RAIN DATE: SUNDAY OCTOBER 9TH

Wed September 14th 2005

Just a quick update......

Anthony is doing well so far with the chemo..He is in the hospital, Rm 709 Window..The steroids are making him a little edgey and his stomach is bothering him a little but other than that so far so good..He has his laptop with him so feel free to leave him a message since he can now check it while he is there. Visitors are welcome at anytime as his blood counts so far are holding ...

The 5 k went really well this weekend, and just as soon as i have the chance i will post the pictures..Thank you Mr. Muzio and all of the club memebers who put so much time and effort into making it such a huge success, and of course to all of you that were there and participated..

On my way up to see Anthony, so I will update and add everything later tonite. I just wanted to at least fill you all in on how he is doing so far...
Thanks everyone for your continued prayers for him....

Anthony will be in need of blood and platelets starting the end of next week. Platelets take 3-5 days to process to make available to use and are only good for 5 days.

I am listing the phone number again for the blood bank at North Shore..Anyone that can donate please do so..You need to make an appointment first. Please be sure to mention Anthony's name when doing so for platelets and blood. Again he is A+ but can also use O..And for platelets it can be any type..Thank you
FYI THE PHONE # TO GIVE BLOOD OR PLATELETS IS (516)562-4204

Feel free to visit the WEBSITE of the Pictures taken at diffrent Fund Raisers ...link is below...

http://community.webshots.com/user/lovemyboyafd

Saturday, July 2, 2005 7:03 PM CDT

GREAT NEWS *****
Anthony's blood work came back Negative for Leukemia cells.
There was a concern that leukemia cells had entered the blood stream again, but after a special test that they did, we found out that it was from those stupid Nuprigen shots. An overflow of White blood cells spilling over. THANK GOD!!!! and thank you all for your prayers for him ...

Anthony is still not feeling himself. He is dealing with stomach problems and not holding down his food all of the time. He is very tired, which is normal . Hopefully by Monday he will get some energy back again. On Tuesday he has one last chemo for this round, then he is off until July 12th for the bone marrow..

We found out that a couple of days after the bone marrow he will start the next phase which he will be admitted into the hospital for. He will have 3 spinal taps (1 every other week) For each one they will be admitting him for 2-3 days as these are more intense and are suppose to be the most intense compared to the last 2 rounds of chemo. We are unsure as to what it is that is diffrent, details we will get this week. All we know for now is that it wont just be the one spinal tap chemo, but 3 all together.
SO PLEASE KEEP HIM IN YOUR PRAYERS..
THANK YOU ALL - YOUR PRAYERS FOR HIM CONTINUE TO GET US THROUGH THIS...
Hope everyone has a safe, Happy 4th of JULY!!!!

Hope to see everyone next week at the Fire Dept on July 10th.. We are hoping Anthony is going to be able to join us...
Thanks again , God bless!!!
Sue

Wednesday, June 29, 2005 9:37 PM CDT

Hi
Anthony came home from the hospital late this afternoon. It was a long week with alot of unanswered questions. We still are unsure of why he had the fevers but they lasted up until Tuesday morning. They believe originally he caught a virus and then the Nuprigen shots that he gets everyday possibly could have also caused them. Nuprigen is what he takes to boost his white blood cells after having chemo. Anyway after a few blood transfusions and platelets, his counts have for the most part recovered.
He is happy to be home, but still is not feeling 100% yet.
He is being treated for asthma, supposingly this is why he has been coughing for 2 months now. Hopefully now we will get the cough under control.
Thanks everyone for your continued prayers and donations of blood and platelets.
He has 2 more treatments to get through before the next bone marrow test on July 12th.
We are awaiting on a special blood test that will come back on Friday so please continue to pray for Anthony, and that everything comes back PERFECT in the results..
Thanks
Mom

**** July 10th FUND RAISER AT WANTAGH FIRE DEPT. OPEN TO ALL******SPREAD THE WORD!!!!
D.J - FOOD- DOOR PRIZES ETC...

Friday, June 24, 2005 2:49 PM CDT

Hi everyone, its Aunt Danielle, just wanted to update everyone and let you know Anthony is unfortunately back in the hospital. He was admitted yesterday (Thursday 6/23), he was running a high fever. His white blood cell count is dangerously low as well as his platlets although as I type my son was just on the phone with Aunt Susie at the hospital and she told him Anthony was sleeping while he received platlets so hopefully that went well. We will keep everyone updated when we know more, but for now he is in the hospital until he is fever free for a few days and his white blood cell count is much higher.
Thanks for caring and keep praying. Have a good weekend.

Sunday June 19th 2005

Anthony had a nice birthday thanks to everyone that called, sent cards, and came by..
This week anthony is off from Chemo. Instead he has blood work which will determine if he needs platelets or blood.
We will have to watch again to make sure he does not catch anything as he will have a low resistance ( i think i spelled that right..hahaha) Anyway please keep the prayers coming his way as we go through the week.
By the way I am now "HIS NURSE" giving the Nuprigen shots at home..He is not that happy with me being the one that gives it to him, but it beats having to go back and forth to the hospital for them...
Chemo starts back up again next week after his blood counts come back up again
Thanks again everyone for making his birthday a nice one...

And a BIG THANK YOU TO ALL THAT GAVE THEIR TIME FOR THE CAR WASH FUND RAISER TODAY....
God bless !!!

Saturday , June 18th 2005

HAPPY BIRTHDAY ANTHONY!!!!!!
ANTHONY IS 19 TODAY :)
ANYONE THAT WOULD LIKE TO STOP BY TONIGHT AT 7:30 FOR CAKE IS WELCOME!!
ANOTHER WEEK DOWN, THANKS FOR ALL OF THE PRAYERS-
HOPE TO SEE YA :)

Tuesday, June 14, 2005 10:56 PM CDT

Hi everyone
WE GOT THE CONFIRMATION TODAY THAT ANTHONY IS IN REMISSION!!!!!!!! :)
We got the happy news this morning before starting his second phase of chemo.... Thank YOU all for your PRAYERS....I truly believe in the power of prayer and it is evident in Anthony's results that God is listening to all of us....
We had a pretty rough day.(10 hours at the hospital) Actually Anthony had the rough day, we only sat by his side as he went through all of it !!
He had about 6 hours of a couple new chemo's given through the IV..He is so thankful he got the mediport put in. It worked out real well. Then about 3 pm he was taken to xray where they did the spinal tap test. They took the fluid to test for any hidden leukemia ( no results yet). Then they gave him chemo through the spinal tap, which made him extremely sick. That lasted about 3 hours, and by the time he was done we figured he threw up everything and anything that he has eaten in the last month.(My poor boy).He finally fell asleep and we hoped for the best..
Lenny and Justin came by to pray with him just as he awoke and to our amazement he felt much better. We were so happy that the bout of puking was over. He tried to eat a little but his stomach was still a little uneasy. By the end of this evening he was convinced he could eat a toasted cheese sandwich and guess what??? YOU GOT IT..It only got to visit a short time in his belly before he violantly expelled it!!!!Maybe next time my boy will listen to mommy and try just crackers :)
So here it is 12:30 a.m. and we have just cleared 10 minutes of NOT throwing up, hoping for the best for the rest of the night. We have to be back at the hospital at 9a.m tomorrow for more chemo. Thank God the worse of them were today. We are praying the rest of the week goes easier for him. We are amazed at the strength and courage Anthony has to go through all of this and still find time to tell his nurse how to get rid of poison ivy, or take the time to tell his "little Merissa" how beautiful she is..We are proud of our boy and are so happy that we are on the road to success....
Thank you everyone for your prayers !!!!!
Thank You God for answering our prayers....

Anthony turns 19 this Saturday..June 18th- we are hoping he will feel up to celebrating at least with a cake...I will keep you posted, anyone that wants to come by...

Friday, June 10, 2005 8:34 PM CDT

Well Everyone we have jumped yet another hurdle.
Anthony did GREAT today. He had his mediport put in and also had his second bone marrow test. Of course there was much anticipation as to IF the Dr. was going to be able to knock Anthony out..His biggest fear was waking up as they were doing the surgery. But they succeeded wonderfully. He does not remember a thing..THANK GOD!!!
He even was so out of it, that he invited all the Dr's to a Bar-B-Q at the end when they were trying to wake him up.
We will get the results of the bone marrow test Tuesday when he starts up his next round of Chemo. Please continue your prayers. We are hoping for the best results.
For those of you who got to see Anthony this week, I am sure you will all agree he LOOKED great and was happy to be doing some normal things..(like driving his car)..The little things that we take for granted. We are so happy that he got a break from feeling crappy, and got a taste of what it is that he is fighting for..LIFE!!!!!
Thanks to all of you for your continued support. I will let you know Tuesday night the results of the bone marrow from today..Please keep him in your prayers, as we have Tuesday's new chemo to get through...
Thanks
Sue

Tuesday, June 7, 2005 8:24 PM CDT

Hi Everyone
Just wanted to let you know that Anthony has had a wonderful 2 days. He slept away his weekend because of Friday's chemo, but Monday and Today he was able to get out and do some of the things that he has wanted to do. He got his car registered and today got to drive it. Although he is only suppose to be driving local, He and his love Merissa and friend "Coop" (Brian) and Jessicca took a ride to the beach.It was a short ride, and he got to breathe in some of the salt air. They stayed only for a while, but enough for him to feel like he was doing something fun..
He is feeling good and is enjoying his break from the Chemo.
Please feel free to call him, or stop by this week while he is up and awake.
We continue to need your prayers as we head into the next phase of his chemo, which starts Tuesday of next week. He also has the bone marrow aspiration and mediport this friday. Please pray that this first round of chemo has put him into remission, and that this next round of chemo goes well.
Thanks in advance to everyone praying and leaving messages for him.
Love
Ant's Mom

Sunday, June 5, 2005 8:53 PM CDT

To All of you
I don't know where to begin to THANK you all for your generous support and donations at Anthony's Bowling Fund Raiser. Julie ( My very 1st Best friend ) did an awesome job of organizing it. Thank you so much Julie !!!! and of course thanks to all of you, Caroline,Doris, Michael,Jenny and little Caroline - MaryBeth, and the rest of the McDonald's crew that helped out with selling the raffles. (sorry for those I don't know by name). I also want to thank all of you - neighbors and friends that donated the raffle prizes.
For those that were there- You got to see "MY BOY" we were so happy that he was able to come and eat his favorite craving of the week "HERO". He only got to stay for a while, but was happy to be out of the house even if it was only for an hour.
I can't tell you how BLESSED he feels to have all of you by his side. We ALL are amazed At just how LUCKY we are to have you as our friends.
I really wish there was another word besides Thank you to tell you just how much we really appreciate everything and all that has been done for Anthony and our family. It is the most Warmest feeling to know that so many people care so deeply. Thankyou just does not cover the complete JOY that all of you have given to us.
I will post some of the pictures tomorrow of the Bowling event. Please use link on bottom of page to view photos ( under Hospital info) It really was alot of fun - Thanks to all of you that were able to spend the day with us..
Susan

Saturday, June 4, 2005 11:04 AM CDT

Dear Family and Friends
I just want to ask all of you for your continued prayers. Anthony is having a difficult time being at home. REALITY has hit, and has hit hard. He has lost all of his hair and although we thought he was prepared for it, It still upset him a great deal. He is becoming depressed and I am sure most of you have noticed, he keeps his phone turned off.
We are trying to find ways to get him to come out of his bedroom so that at least then if someone was to drop by he would visit with them. I AM HAVING ZERO SUCCESS. I even used the excuse that I would CLEAN his room!!!!
He had his last round of the 1st phase of Chemo yesterday (friday)and gave us a real hard time of even going for it. It was a fight even as they were inserting the IV into him.
His mental state and physical being is taking a toll on him. Besides being tired all of the time, he can't stop coughing. They did another chest x-ray yesterday, and Thank God it was normal. His body continues to hurt. The past couple of days, he has had constant stomach pain, and headaches. All of course normal for having Chemo.
On a good note, The Dr's. feel that his bone marrow will be good Next Friday the 10th. They have also scheduled for him to have his mediport put in the same day. He will be knocked out for the mediport to be inserted and then while still out they will do the bone marrow aspiration. The 14th which is the following Tuesday Anthony will start round 2 of his Chemo which will last approx- 6 months. This round of chemo will include numerous spinal taps in which they insert the chemo directly into the spine so that they can be sure to reach any Leukemia hiding in the spine and brain through the spinal fluid.
Please continue to pray for Anthony as we move into phase 2 of the treatment. He has a long road ahead of him. Although WE are at home, his days still consist of going to the hospital 3-4 times a week for 4-5 hours a day.
His life as he knew it has changed so drastically and he is truly in need of your prayers for his heart, mind and body.
I can't thank you enough for your continued support.
Susan

Wednesday, June 1, 2005 7:21 PM CDT

Hi everyone
Anthony had another round of chemo yesterday (Monday) and unfortunately is still real tired. Of course this is to be expected. He is missing seeing everyone, but can't stay awake long enough for visits. I try to read the messages to him or have him get onto the computer to see them all, but most of the time is spent sleeping or eating. Today's craving was for shrimp. The steroids will be ending again (thank God) tomorrow Thursday. And we hope after that he will be more himself again. They truly do a number on him and he does not like taking them.
We just want to thank all of you, friends, family, church family,neighbors and everyone at the Wantagh Schools and Wantagh Fire District for all of your prayers and support. We cannot even put into words just how much it has meant to us having you help us through this.
We just ask that you continue your prayers as we have some rough couple of months coming up as we start this next phase of chemo.
I will continue to keep you updated on his progress. Hopefully after this Friday he will have a couple of days that he will not have chemo, and will be able to have visitors stop by or talk with. For all of you that know Anthony you will understand when i say the hardest part for him is getting through being so tired all the time. He is not use to Not doing anything.
Please continue your prayers We all truly need them.
Thanks again everyone
The Daniele's

Monday, May 30, 2005 8:03 PM CDT

Hi Everyone
Just an update on Anthony's first full day at home.
He slept well last night in his own bed. It was nice for him not to be woken by nurses all night taking his vitals.
Today was a little rough. Anthony was expecting to be wide awake and full of energy for his Welcome Home Party but was only able to stay awake for short periods of time. He was happy to see everyone, and Totally ENJOYED eating his cold cut hero that he has been craving for weeks.

Anthony will be finishing the rest of the first phase of chemo this week, and will have another Bone Marrow test Next friday the 10th to see how his body has responded to the treatment. We truly appreciate your continue prayers for Anthony.

Our Neighbor Julie is holding a fund raiser Sunday June 5th at the Wantagh Lanes from 12 to 4. Door prizes and 50/50 raffle. It should be a fun time so please try to join us. Adults $20.00 and children $10.00 includes 2 games w/free shoe rental.

Thanks to all of you for your continued support and prayers. We truly are blessed to have all of you a part of our lives.

Susan and Joe and family

Sunday, May 29, 2005 1:08 PM CDT

Hey everyone its Anthony, and I am finally home. I just wanted to let you all know, that I am very thankful you all have been keeping my in your prayers, and have kept me in your thoughts constantly. I am feeling good right now, just a little tired. It was good to come home and see all the balloons, and signs outside my house. I walked right in my front door, and went upstairs and laid in my bed, it felt so good. I am going to keep this short, because I have a lot going on today. Thank you all once again, I will try to update asap. Love you all!!

-Anthony
#52

Friday, May 27, 2005 8:28 PM CDT

Hi everyone, Its Aunt Danielle. i just got off the phone with Susan and we're happy to report Anthony had a great day today. He is on round the clock Zanax and painkillers, therefore he was very happy, his moods were stable andhe was quite calm. He is back on the steroids and his appetite is also back. He had a nose bleed and neededto receive platlets. Anthony for the first time in three weeks was able to go outside and enjoy this beautiful day.
Now for the news we've all been waiting for, it sounds like Anthony will be coming home on Sunday. His whiteblood cell count has tripled since he has been receiving nuprogen shots, its still not normal, but the doctors feel it is high enough to send him home. We are all so excited for him, he can't wait to sleep in his own bed.
Finally, once again, we thank everyone for all the wonderful thoughts and prayers you have sent Anthony and his family, you truly do not know how much he appreciates it and how he wishes he could thank each and every one of you.
Have a good night everyone and I hope more good news is reported tomorrow. Enjoy the Holiday weekend.

Thursday, May 26, 2005 10:09 PM CDT

Hey everyone, its Merissa I am going to give you an update on Anthony so far.

I got to the hospital around 11, he was doing good. Robin brought Ant up chicken taco's that were quite delicious, and Aunt Danielle made him a pasta dish (not sure how to spell it, lol) he ate it all. He complained all day of discomfort in his ear and throat, so a ear/throat specialist came in to check him out and said nothing was wrong the pain was coming from the soars in his throat. Then at 6:30 Anthony got a cat scan, and finally got to eat his dinner. In the middle of all of this Anthony went through quite a few mood swings, things were just bit of a mess. The one thing that had calmed him down from his first attack was the visit from Pastor Ed, he prayed with Anthony, and Anthony relaxed a bit after that. After the Catscan Ant had another bloody nose, and he was given platlets.

Im not sure how tomorrow looks for visitors, it still stands that calls are the first step to see how Anthony is feeling. And its very tough to determine how he is going to feel, being as his moods/feelings change. Thanks again everyone for the support =)

keep up with the prayers.

Wednesday, May 25, 2005 10:58 AM CDT

Hi Everyone
We just want to thank everyone for your continued support. Anthony had a great day yesterday. He felt so good that he allowed me to go home and spend the night with Joe, Jessicca and JoJo. His love Merissa spent the night on my COMFORTABLE pull out to keep him company.
As of this morning Anthony again needs another blood transfusion and will be having a cat scan of his abdomen. His blood counts are very low (expected) so again i cannot stress how important it is that anyone with the slightest sniffle wait to see him. He is missing everyone, and is feeling very cooped in. He has of course warned us many times that he is "Just gonna leave" .. As all of you know Anthony can be impatient at times..lol
Please keep the prayers coming, and continue to call him or leave him an away message for him to read on AIM. He checks it almost every night before going to sleep. He also reads this website everyday when we print the page for him. Thank you all for everything.
We feel so blessed to have all of you supporting our entire family at this time.
Thank all of you for the dinners, prayers, blood, and platelets, phone calls, visits and cards and all of you leaving him words of encouragement. Thank you -Thank you-THANK YOU!!!!! We feel so lost for words for everything all of you are doing..
Love
Susan Daniele & family

Tuesday, May 24, 2005 7:39 AM CDT

Hello - as of last night Anthony was doing great. He had some mood swings during the day, but last nite seemed to be pretty good. Anthony got his head shaved, and it looks alright. =) His cravings have lessened, finally. He has his taste buds bad so he can now taste what hes eating, and drinking. Things seem to be all working out, as the doctors had planned.

thanks again for everyone's support...keep praying.

Sunday, May 22, 2005 9:19 PM CDT

Hi everyone, we just got home from the beautiful prayer service at Anthonys church, they did a great job and we thank everyone that was able to attend, all your support is really appreciated.

Anthony did not have such a great day today. He is extremely agitated, which is due to the stopping of a steroid givento him last week. As of this evening he has begun to run a fever. This is going to be a very tough week for Anthony to get through due to his very low blood count, therefore, we are requesting everyone to call before visiting and please, please do not come up with any signs of a cold or other illness.

One high point of the day was listening to Anthony place his dinner order of a cheeseburger, mozzerella cheese fries with gravy on the side from the lighthouse diner, glad to see he still has an appetite.

Finally, please don't forget to make your appointment to donate blood or platlets. He can use both.
Thanks again for all your support and have a good night.

Saturday, May 21, 2005 7:14 PM CDT

Hi everyone,sorry you have not heard from us in a awhile.Anthony had a good day yesterday(Friday).Today,however was not such a great day. He had 2 blood transfusions and also needed platelets. He did not have much of an appetite and was quite aggitated. He did request no visitors for this evening.
Tomorrow night Anthony is requesting all of you to try to attend the mass at The Wantagh Baptist Church at 7:00pm.
Again Thank you for all the prayers and we hope to see as many of you as possible tomorrow night.

Thursday, May 19, 2005 2:28 PM CDT

Hi Everyone
I was able to sneak away from the hospital for a few to catch one of JoJo's b/b games. Joe and I just want to thank all of you for your love, support and prayers. We can't tell you just how much it means to us to have such a wonderful support system for Anthony as well as for us. We truly realize that we are blessed because of all of you.

Anthony's day started off with HUNGER for chinese chicken and broccli. The steroids that he takes twice a day has turned him into a craving pregnant person..lol
The down side to them is that he has mood changes and gets very agitated at times. His frustration level of being cooped up in the hospital is at a high today.

Tomorrow will be another round of Chemo - which is the one that knocked him out on Monday. So i am asking that everyone respect No Visitors for the day. He enjoys everyone's company so much, yet he finds himself apoligizing over and over for falling asleep while visitors are there. And feels bad that everyone has driven so far to come see him and all he does is sleep.
Please just continue to keep him in your prayers and leave him notes. He loves having them be read to him.

Just a NOTE to those new to the site. Above there is a link to REVIEW JOURNAL HISTORY. If you click there you will be able to read past journals/days since Anthony's chemo started.

Again, THANK YOU ALL for your support,wonderful dinners, but most of all your PRAYERS...We have faith that God will see us all through this..
Love to all of you
Sue and Joe Daniele and family

****Prayer Service for Anthony****
Sunday, May 22nd @ Wantagh Baptist Church @ 7 p.m located on Wantagh Ave, just past Burger king. Everyone is welcome to come...

Wednesday, May 18, 2005 10:20 PM CDT

Anthony had an alright night. I couldnt get up there to see him but I chatted with some people who saw him. He had a nose bleed, which caused his platelets to drop - so he was given platlets through his IV, and as a reaction to the platlets broke out in little patches of hives. The doctors gave him some benadryl that knocked him out -

keep upp with the comments, and the prayers.

"There�d be no good days, if there weren�t any bad ones. The sky wouldn�t be blue, if it were never black. And sometimes you need to fall halfway down the mountain to find a new trail that will take you straight to the top."

Wednesday, May 18, 2005 11:30 AM CDT

As of this morning Anthony is doing really well! - he feels great.

**tonites visitations: (friends) RULES ARE AS FOLLOWED:
1. **Please call ahead first
2. Visits are limited to 15 minutes
3. Only 3 ppl allowed in the room at once
4. No visitors past 9:00 p.m.
5. No one with a hint of any cold, etc may
come
6. Please follow the rules, it makes
everything a lot better.

Tuesday, May 17, 2005 9:51 PM CDT

Day 5 of Anthony's treatment. He basically slept the day away again, which is a good thing. Hes on a new steroid type chemo which makes him extremely tired. Anthony's friend Coop, and I (merissa) brought Ant, yet another delicioius round of Taco Bell. He enjoyed it =)

The night went pretty well, Anthony was some what out of it. But him sleeping the days away = a sooner return home for Anthony. The Doctors said Ant is right on time with everything...and everythings working out.

Continue posting notes to Ant, and praying for our boy.

Worse comes to worst
I'll get along
I don't know how, but sometimes
I can be strong
-Billy Joel
"Worse Comes to Worst"

Tuesday, May 17, 2005 3:27 PM CDT

**No Visitors Allowed to See Anthony Tonite**

Anthony has been on a new chemo, that makes him very tired and groggy. please still keep commenting on this website, Anthony does get to read it. Thanks =)

Monday, May 16, 2005 9:58 PM CDT

Anthony had a good day today. I believe he slept till 3:00 p.m. - he had a blood transfusion, and a shot that will boost his cells in his blood up. The evening was real good for Anthony, his mom made an exception allowing Uncle Michael to bring Ant some Taco Bell. And for those of you who really know Anthony, Taco Bell is a soft spot =)

Lots of family were visiting this evening. Anthony's cousin Nicole posted a countdown on Anthony's wall - so he can see how much more hes got.

Keep up the prayers, and thoughts of our Anthony <3

**starting next week, only family members are allowed to see Anthony..so please try to get your visits in this week (friends..) but make sure to call first to see how our boy is feeling...

>> The greater the difficulty, the more glory in succumbing it <<

Monday, May 16, 2005 11:04 AM CDT

FYI THE PHONE # TO GIVE BLOOD OR PLATELETS IS (516)562-4204

Sunday, May 15, 2005 9:23 PM CDT

Anthony's third day was not as good as the second, but it was still alright in away. He got up moved around, visited his old roomate in 716, took a nice walk around the floor and hung out. A lot of family came up to visit Anthony tonite which was good =) Anthony was in and out of nausea attacks, but he ate donuts all day.

Funny thing, whenever someone would call Anthony and ask them what to bring - his response of the day was "Lots of fruit punch, and...some...DONUTS!" It kept everyone smiling. Anthony lovely Anthony quote was after Anthony got frustrated about something, he was apologizing to his female night nurse and said "Im really sorry for what I said, I know its not lady like for me to say something so disrespectful.." gotta love him.

Mom is staying over with him tonight - through till tomorrow. Tomorrow will be one week since Ant's been in the hospital. We just keep reassuring him, that the countdown has begun till he can finally come home.

Just keep him in your prayers - another important piece of information: The Wantagh Baptist Church is holding a "Special Prayer Time - For Anthony Daniele" it is on Sunday, May 22nd 7:00 pm-8:30 pm on the Campus of the Wantagh Baptist Church. We encourage everyone to go, infact it will be videotaped and shown to Anthony shortly after. =)

Well for tonight, keep up with the encouragement, and strength.

"Consider it pur joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature to complete, not lacking anthing." (James 1:2-4)

Saturday, May 14, 2005 9:54 PM CDT

hey everyone. Anthony's second day of chemo went a lot better then the first. He slept most of the day away, was dreary and slept through his treatments. He woke up around 7:00 p.m. and began singing and dancing away. He got up and took a walk around the floor, ate some dinner, and relaxed. He carried his good mood through the entire night, got up once more to try to catch some of the yankee game, had some visitors, and watched Grumpy Old Men. Uncle Matt stayed the night, and gave Susan time to relax. Tomorrow he should be receiving the same treatments as he did today so he may be more apt to visitors. so everyone keep anthony in your prayers, and in your hearts.

-another piece of info, please try to not call his cell phone, or his room number after 10:00 p.m. - unless he says too. =)

**You gain strength, courage, and confidence by every great experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror, I can take the next thing that comes along."...You must do the thing you think you cannot do. - Eleanor Roosevelt**

Saturday, May 14, 2005 10:49 AM CDT

anthony had his first chemotherepy on friday @ 4pm it was not a great night he had 104.5 fever, thank god the fever finally broke his wonderful mom was with him the entire night to comfort him, please keep the prayers coming as we will need them now and in the future, we have a long road ahead of us .

Saturday, May 14, 2005 10:28 AM CDT

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