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Tuesday, March 18, 2008 11:30 PM CDT
I know it has been awhile since I updated. We have been so busy living the normal life that I forget to update. Anthony is doing great. He is all signed up for kindergarten. I can't believe it, I remember way back when his oncologist saying she was going to see him off to kindergarten. I couldn't even think that far in advance and here we are getting ready. Anthony has grown into such a great little boy. He has a wonderful sense of humor and is always making me laugh. I think he is going to give us a run for our money when he gets a little older. I couldn't be prouder of him though.
I can't believe we are getting ready to leave for Disneyworld. We leave on March 28th..Anthony's birthday. The make a wish volunteers are coming out tomorrow night to give us our package for the trip. It will have our tickets and everything we need to go. We are so excited. We have a calandar on the fridge that Anthony marks everyday so he can see how close it is getting. I get butterflies every time I think about this trip. It doesn't seem real. Then again neither did Anthony having cancer. This definatly feels better.
I will definatly post again when we get back. Thanks for checking in on us....
Maria
Thursday, January 17, 2008 8:48 PM CST
I know it has been a while since my last update. Alot has happened. Anthony is great. He is three years off treatment. He just had new molds made for his hearing aids. He is doing much better with his speech. He is not perfect and still talks some patience hearing what he is saying. He will be going for an ekg and echocardiogram on Tuesday. This is just routine. It will be done every two years. I also found out at our last visit in November that Anthony is at risk for Leukemia. Obviously the further out we get the better his chances for not developing that cancer. I am confident that this will not happen. I am sure I was told way back when that this was a possibility but I probably forgot. I am going to look back in my notes to see if I find it there...
On to the good news....Anthony was granted a wish from the Make a wish foundation. He wants to go to Mickey Mouses house..we are going to Disney on his birthday...The Limo will pick us up at 9:30 on the morning of his birthday. We are all very excited. We will be staying at Give Kids the World village in Kissemme...gktw.org check out the website it is really amazing.
I will try to update after his tests on tuesday...Thanks for checking in on us...
Maria
Sunday, May 20, 2007 11:16 AM CDT
Anthony had his tonsils and adenoids out on Friday and new tubes put in. He did great with the surgery and has been eating and drinking like a champ. The first night in the hospital he didn't get much sleep because the little girl in his room kept waking up crying. Last night I think he was having nightmares( which they say is normal after surgery and a night in the hospital.)Plus I think his throat was dry...We just hooked up the humidifier for tonight. That should help. I know I need to get some sleep...I am a little cranky..but will do whatever it takes to get Anthony better. He is amazing how he is running around and playing. I thought for sure with the pain med he would be sleeping or at least laying around,,,,not Anthony he has more energy then ever...We have to watch for bleeding, but the way he is drinking I don't think it will happen, It is usually when the scabs fall off and the mouth is dry that they bleed. I keep pushing the fluids so I think he will be fine,,,plus I think I will be the one to pass out if it happens...Thanks for checking in on us...I will post more later.
Maria
Wednesday, May 9, 2007 5:40 AM CDT
Here is the update on my little daredevil. We went to the circus last week and Anthony really enjoyed it. Thanks Sally for treating us. Anthony kept telling me that he wanted to do all the crazy stuff that they were doing. The flying trapeze, hanging about fifty feet in the air on a little pole and being shot out of the cannon. He is my crazy child that would do all these things.
On to his health he continues to do great. His AFP this week is 2.11. All his other labs and xrays looked good as well. So now we don't go back for three months. YEAH!!!!!!!!!!!! Next Friday the 18th of May he will go and have his tonsils and adnoids out and new tubes put in his ears. We are scheduled for an overnight visit, but if he is eating and drinking will get to go home the same day. I am actually hoping for the overnight, because I feel safer knowing we are there in case of complications. (bleeding is a big one for this surgery).I am so glad we are getting this done now, because he doesn't understand what is going on and will most luckily sail right through it. I will post an update as soon as I can after surgery.
Keep praying for all our little caringbridge friends.....Thanks for checking in on us..
Maria
Monday, April 16, 2007 5:46 AM CDT
Sorry for lack of update. Anthony is doing great. His last AFP was 2.6. So all looks good. We will go back in May for chest x-ray and AFP. I will keep you all posted.
We also saw his ENT doctor and needs his tubes replaced. How wonderful it has been since we have had them put in over two years ago. He hasn't had an ear infection since. Unfortunately
one is out and the other is on it's way out and his ears are starting to fill up with junk again. He also needs to have his tonsils and adenoids out. She has been watching them for two years they are huge. I saw them and they are really big...Anyway it causes his snoring and later in life can cause sleep apnea. (not sure of spelling). She said sometimes kids grow into them when they are so huge, but his haven't changed in two years...growing with him instead of him growing into them. She said it is just a matter of time and since he will heal easier at this age we decided to just do it now. That will also be the end of May. They scheduled us for an overnight but there is a good chance we will get to go home the same day. As long as he is eating and drinking. I am not opposed to staying though. It makes me feel a little safer being there in case anything happens.
Anthony is doing great. He is talking so much better. His speech therapist is great. I am really happy with her. He has shown so much improvement since he started seeing her. There are still times that I can't understand him, but that is to be expected. Yesterday he went to a birthday party for one of his friends and had such a great time.
Thanks for checking in on us. Please say a pray for one of our caringbridge friends Matty who earned his angel wings. He also battled Hepatoblastoma...
Maria
Thursday, February 22, 2007 9:47 PM CST
We went on Monday for ct scan. The spot was still there but still extremely small. Still not sure weather it is cancer or not we left with the Dr. contacting a surgeon and another oncologist. I got a phone call later in the afternoon with the results of the afp....it is down to 2.8. and the other oncologist felt that with the afp so low and that it has been over two years that it most likely nothing. We are going to continue to test the afp monthly and a chest xray in three months...
Thanks so much for all your prayers...and don't stop BELIEVING.
and keep praying...
Maria
Thursday, February 1, 2007 11:17 PM CST
Ok here goes...Today was not a good day for me. Anthony had his AFP drawn on Tuesday and it is up a little bit again. It is 3.75. It is still within the normal range, but it is trending up. Dr. Stern doesn't think I should be panicking at this time, but it is not her baby. He is scheduled to be scanned on the 19th and she suggested that we could move it up, but I would only be able to maybe move it up by a week and we decided to just leave it as planned. It is not like one week is going to make a difference. This is so much scarrier than it was the first time. I guess what they say is true...ignorance is bliss....I didn't really know anything the first time, now I do and I know that relapse is not a good thing and the prognosis is even worse. I am trying really hard to stay positive, but it is really hard.
Anthony is doing great...lucky for him he has no idea what is going on. He does freak out a bit when we go in for blood work and that is the other part that bothers me. The first time he went through this he didn't understand what was going on, now he will be able to tell me that he is hurting and that just breaks my heart. Please I am begging everyone to say an extra prayer for Anthony today. Thanks for checking in on us. Please Pray for Anthony.
Tuesday, January 2, 2007 5:18 PM CST
Happy New Year. I am hoping that ours will be a good one. We were faced with some devistating news back in Nov. Nothing has been confirmed yet and the waiting just plain sucks. Anthony had a CT scan in Nov. and the radiologist reading the scan thinks he saw something on the lower right lung. I was told that it is probably nothing but lets scan in three months. Sal and I were not comfortable waiting three months so we went on Dec 26 for and AFP (tumor marker number) I got the results on Wed evening. It came back 2.4. A great number, but we have to find out if the spot is indeed cancer. We will go back in a month for another AFP and two months for a CT Scan. Dr. Stern feels good that it may be nothing. She said that when it is a lung met it is usually much bigger. His is 1mm. It could have been a cold that settled in his lugs. He was very nasally the day we had it done. It could also have been from being sedated. I have to say that I just want to know. It is frustrating knowing that it may be back but we can't seem to find it. I have to have faith that the test being run are accurate. The AFP is very sensitive and would have risen had it been something. I guess we will just have to wait. Please pray that it was nothing or if it is something that they find it quickly. Thanks for checking in on us....
Maria
Thursday, October 5, 2006 9:51 PM CDT
I sadly want to let you all know that Jake Owen Raborn received his angels wings earlier today. Please pray for the Raborn family...
www.caringbridge.org/la/jakeowen
Maria
Friday, September 15, 2006 6:13 AM CDT
We are now 22 months off treatment. Anthony went to clinic on Tuesday and yes another clean bill of health...YEAH!!!! He is such an amazing little boy. I wish I could videotape him getting his x-ray...He practically does all the work. He knows how to pull the machine down,,put the film in and out. where to stand and to put the protective cover over himself. The techs get a kick out of him. They are soo nice.
Ant is doing great with his hearing aids. And I am hoping that with his speech therapy he will be speaking more clearly soon.
November will be our two year anniversary. I can't believe it. We will go to three months then. So he will be scanned ever six months instead of every four.. With chest x-rays in between.
Please pray for our little friend Jake. he has just undergone yet another procedure. He is such an amazing little boy. You can visit his site at
www.caringbridge.org/la/jakeowen
Please say lots of prayers for Jake and his amazing family....
Thanks for checking in on us...
Maria
Tuesday, August 22, 2006 8:30 PM CDT
I saw this on our new friend Mary's site - and it made me cry - so now it is your turn! :)
The Chosen Mothers
by Erma Bombeck
Most women become a mother by accident, some by choice
and a few by habit. Did you ever wonder how mother's of
children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over earth
selecting His instruments for progagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger.......
"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, partron saint Greard."
Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."
"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel,
"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."
"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."
"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance,
cruelty, prejudice....and allow her to rise above them."
"And what about her patron saint" asks the angel, his pen poised in mid-air.
God smiles and says..."A mirror will suffice."
Tuesday, August 15, 2006 1:42 PM CDT
Anthony is doing well with his hearing aids. Finally I updated new pictures. If you look close you can see he is wearing his aids.
----------------------------------------------------------
Anthony got his hearing aids today. He did really well so far. The hearing tests showed improvement. It is not something that is going to happen overnight. It is going to take time to teach him the sounds that he is not used to hearing. Nadia also explaned that the sounds he now hears is not what someone without any hearing loss hears. He is going to have to be trained by his speech therapist. They are off until after Labor day. So he will start with speech then. We will go back at the end of September for hearing aid check. We also will head back to clinic in September. That visit will be for a chest x-ray then in November another ct scan. That will also be his two year anniversary off treatment.
Sal and Anthony have been having a great summer. Spending lots of time at the pool. They are like two little fish. We are also getting ready for our annual trip to Myrtle Beach. We are very excited about going.
Please continue to pray for Jake, Matty and AnnaJane. They are all suffering with this aweful monster. All have relasped. It is so sad what these kids are going through.
I will post more later.......
Maria
Tuesday, August 8, 2006 5:01 PM CDT
Anthony got his hearing aids today. He did really well so far. The hearing tests showed improvement. It is not something that is going to happen overnight. It is going to take time to teach him the sounds that he is not used to hearing. Nadia also explaned that the sounds he now hears is not what someone without any hearing loss hears. He is going to have to be trained by his speech therapist. They are off until after Labor day. So he will start with speech then. We will go back at the end of September for hearing aid check. We also will head back to clinic in September. That visit will be for a chest x-ray then in November another ct scan. That will also be his two year anniversary off treatment.
Sal and Anthony have been having a great summer. Spending lots of time at the pool. They are like two little fish. We are also getting ready for our annual trip to Myrtle Beach. We are very excited about going.
Please continue to pray for Jake, Matty and AnnaJane. They are all suffering with this aweful monster. All have relasped. It is so sad what these kids are going through.
I will post more later.......
Maria
Tuesday, July 4, 2006 10:22 PM CDT
Happy 4th to everyone. We had a good one and even better July 3rd. Anthony had a ct scan yesterday. He is doing great. The scan came back clean. YEAH!!!!!!!!! AFP is 1.31 I was starting to feel paniky on Sunday. The old feelings coming back. I don't know what I would do if it came back. We don't have to think about that for another two months. We go back in September. Anthony is doing great. He is talking up a storm. We are still waiting on the hearing aids. I think he will talk even more once we get them.
Please pray for a little boy. His name is Jake Owen Raborn. www.caringbridge.org/la/jakeowen
Thanks for stopping in to check on us. I will update when I get the hearing aids.
Maria
Tuesday, May 2, 2006 2:59 PM CDT
We went to clinic today. Anthony had blood drawn and chest x-ray. Everything looks good. I am waiting for the results of his afp. I should have that tomorrow. He is doing really well. We are waiting for his hearing aids at this point.We will go next week for a hearing test. Hopefully that will get the ball rolling for his hearing aids. I will update as soon as I know more....
Please pray for another little boy fighting this monster his name is Jake. His website is....
www.caringbridge.org/la/jakeowen
Thanks so much...
Maria
Monday, March 27, 2006 8:57 PM CST
HAPPY BIRTHDAY ANTHONY!!!!!!!!!!!!
It is hard to believe my baby is 3 years old....I am so happy now. It has been two years since the diagnosis...He is doing amazing. We are still waiting on the hearing aids..We don't go back to clinic until May. Stop by the guest book and wish Anthony a happy birthday. His big party is this weekend. I am very excited. It will be great to celebrate with everyone...
Thanks for stopping by..
maria
Tuesday, March 7, 2006 12:26 AM CST
UPDATE......AFP is 1.9 perfect....
We just got home from clinic. Anthony
had a ct scan. It came out great. We are now 16 months off treatment. We have also advanced to being checked every two months. I have to tell you that this is a little weird for me. Clinic has been part of my life for the last two years. I am not complaining it is just strange. Anthony will now have ct scans every four months. I must say that it is comforting to go every month. For those of you that have never had to deal with this I know it sounds weird. I will try to explain. It is comforting having him checked and know that everything is ok. I feel like skipping a month if it was to come back it would be further along then going every month. I can't explain it. At the same time I am so happy that Anthony is getting to live a semi normal life. Deep down I am scared to death that this ugly monster is going to return. I am sorry i try not to think this way, but it is reality.
On to better things......My baby is going to be three soon....I can't believe it. This is going to be a very happy day for all of us. We are waiting on his hearing aids. There is so much red tape involved in getting them approved and ordered. He is talking so much. I will find out next week where he will be going for speech once he turns three. His teacher and therapist will no longer come to the house. He will go to them. I am very sad because Anthony loves them and once he is three.....that is it he will no longer see them.
Thanks for checking in on us....I will keep you posted on the hearing aids....
maria
Wednesday, January 18, 2006 9:56 PM CST
Anthony is doing great. We went to clinic last week. He had his monthly bloodwork and x-ray. He is so amazing, he sat for his blood draw all by himself. Everything came back clean. AFP is 1.73. I couldn't ask for a better number. He was sick right after new years. He had a little bit of bronchitis. The x-ray actually showed a little pnomenia. He is doing good now. I am very excited that we get a month off. We go back to clinic in March for a ct scan. Our regular oncologist is still on maternity leave. The doc we saw told me that we should be able to schedule out longer now. She felt that if it was going to come back it would have come back by now. I am trying not to get overly confident by that. I know that the only guarantee is time.
Monday night I gave Anthony a really cute haircut, I then started to cut Sal's hair and before I knew it he grabbed my scissors and cit a chunck right out of the front of his head. He is now sporting a nice short buzz cut. I was so upset. He now looks like he did way back when he was having his treatments. It is a good thing that he is sooo cute.
Thanks for checking in on us. Please continue praying for all the kids out there fighting this dreaded disease.
Maria
Tuesday, January 3, 2006 12:47 AM CST
I hope everyone had a great christmas. I know we did. I had both of my sisters home and it was wonderful. This picture is of Anthony getting kisses from Aunt Teri's dog Sadie. Anthony just loved the dog.
Anthony goes back to clinic Monday. He is doing well. We have all had that cough and cold that is going around. I will update more later....
Maria
Friday, December 16, 2005 8:49 PM CST
I hope everyone is enjoying the holiday season.
Anthony was at clinc last monday. He had a ct scan and bloodwork. His scan was clean and AFP is 2.5. Needless to say we received an early Christmas gift. We are now 13 months off treatment. Anthony is great. He will be fitted for his hearing aids next month. He is definatly talking more.
I still do not have a Christmas picture of the boys. I am hoping to get one over the weekend. I am just going to take it, because Anthony will not sit to get it done.
We did try to get him to sit on Santa's lap at the mall. He screamed. I didn't make him get it done. His brother was very happy, he didn't have to sit on his lap either. He is a big shot ten year old and it just isn't cool anymore.
I wish everyone a Merry Chistmas and a Happy New Year....
Maria
Sunday, November 27, 2005 7:50 PM CST
I got the new picture up...hope you like it....
I forgot to update after our last
visit. Anthony is one YEAR off treatment. I can't believe it. He is doing great. His AFP was 3.7. perfect.... We are still waiting for an appointment with the audiologist to be fitted for hearing aids. I want to update pictures, but my scanner isn't working. I am going to have to do it from somewhere else. I will as soon as I can.
We started to decorate for Christmas today. I am so excited this year. I think Anthony is going to really enjoy it this year.
Not much more to update. Please keep in your prayers a family that just lost their little boy. I don't know them personally, but I have been keeping up with them through their website. He was a beautiful little boy.
www.caringbridge.org/co/elijahkurtz
Anthony will go in for a CT scan on Dec 14. Pray for clean results....
Thanks for stopping by...
Maria
Sunday, November 6, 2005 8:39 PM CST
I know it has been awhile since my last update. Anthony is doing great...His AFP last month was 2.8. I think that is the losest that it has been. He had another hearing test. He has definate permanant high frequency loss. It is worse in the right ear than the left. He had molds taken of his ears and we are waiting for them to come in...He will then get a loner aid for the right ear. I have to vent a little here...I have been thinking so much about this. I am greatful that the only thing that Anthony has a problem with now is his hearing...It could have been so much worse. What scares me is that he is going to get teased in school. I know how cruel kids can be and that is my only fear now.
We will go back to clinic on the 14th of this month. He will have a ct scan, bloodwork and also a echocardiogram and an EKG, it has been a year since he had these tests.
I have a couple prayer requests. One of my clients has been diagnosed with terminal cancer. Her name is Elaine. Please pray for her and her family. I had asked for prayers for her husband earlier this year he spent the first half of the year in the hospital. He is doing much better, but the family can use your prayers....Also another of my clients Carol has been diagnosed with breast cancer. Please keep them in your prayers....
Thanks so much...
I will update pictures soon...
maria
Sunday, November 6, 2005 8:39 PM CST
I know it has been awhile since my last update. Anthony is doing great...His AFP last month was 2.8. I think that is the losest that it has been. He had another hearing test. He has definate permanant high frequency loss. It is worse in the right ear than the left. He had molds taken of his ears and we are waiting for them to come in...He will then get a loner aid for the right ear. I have to vent a little here...I have been thinking so much about this. I am greatful that the only thing that Anthony has a problem with now is his hearing...It could have been so much worse. What scares me is that he is going to get teased in school. I know how cruel kids can be and that is my only fear now.
We will go back to clinic on the 14th of this month. He will have a ct scan, bloodwork and also a echocardiogram and an EKG, it has been a year since he had these tests.
I have a couple prayer requests. One of my clients has been diagnosed with terminal cancer. Her name is Elaine. Please pray for her and her family. I had asked for prayers for her husband earlier this year he spent the first half of the year in the hospital. He is doing much better, but the family can use your prayers....Also another of my clients Carol has been diagnosed with breast cancer. Please keep them in your prayers....
Thanks so much...
I will update pictures soon...
maria
Wednesday, October 5, 2005 9:48 PM CDT
Well we are here in our new house. We love it. Anthony and Sal each have their own room. For those of you who know Sal was sleeping in our room and he is now sleeping in his own room. He is doing great in his new school. He is also making new friends here in the neighborhood.
Anthony is getting a new speech therapist on Tuesday. He has two appointments this month. October 17 he goes to clinic and October 18 he will have the other hearing test. I am assuming that he will be fitted for hearing aids at that point. I will update again soon....His AFP this month was 4.69. Sorry I forgot to update.
Thanks for checking in on us....Keep praying...
Maria
Tuesday, September 20, 2005 4:10 PM CDT
Anthony is doing great. His ct scan came back clean yesterday. His bloodwork was all good as well. We are still waiting for the AFP. He is talking so much more. He is still seen by a teacher and speech therapist once a week. He will go for a hearing test Oct. 18. and probably be fitted for hearing aids after that appointment.
We are getting ready to move. Ten days to go...We are very excited.
Please keep in your prayers a client of mine by the name of Carol. She was just recently diagnosed with breast cancer.
Thanks for checking in on us...I will update when I get the AFP...
Maria
Tuesday, September 6, 2005 10:11 PM CDT
The prayers worked again. We sold our house the day before we left for vacation. It was a hectic day filling out papers and getting everything in order before we left. We are now home and my house looks like a warehouse. Boxes everywhere some filled most emptied. We will be moving to Pottstown, pa on Sept. 30. We are very excited.
Anthony is doing great. He loved the ocean and the pools. We had a really good vacation. The weather was perfect. Ant will have a ct scan on Monday Sept. 19. Pray that it is clean. He will have the hearing test on Oct.18. I am thinking he will be fitted for the hearing aids after that.
He is just a bundle of energy. I wish I had just a little bit of it. He just never stops. I will post some new pictures as soon as get the film developed. Hopefully I will get it done soon.
Please pray for a clean scan. Remember Sept is national childhood cancer awareness month. Build a bear has a really cute bear it is Nikki's bear III. I bought her on vaca. She has her very own Livestrong bracelet and money was donated to the Lance Armstrong foundation. It is a great cause and a great bear.
Thanks for checking in on us....
Maria
Wednesday, August 17, 2005 10:06 PM CDT
Anthony had two appointments yesterday. He had a hearing test that showed that he has high frequency hearing loss. This is something that we were told would probably happen from one of the chemo drugs that he received. He will be fitted for hearing aids. I am not sure what kind at this point. He needs to have one more test done. He will need to be sedated for that test. We are getting ready to go on vacation next week so it will have to wait until we get back. We are really looking forward to getting away this year. I can't believe that it has been almost a year since surgery.
We also saw Dr. Stern for his monthly oncology visit. Everything is good. AFP 2.69. Chest exray is clear. We are now at nine months clean. Please continue to pray that this montster doesn't come back.
On a selfish note...say a prayer that our house sells. We found a new one, but we have to sell this one first.
Happy Labor Day....
Thanks for checking in on us.
Maria
Sunday, August 7, 2005 9:19 PM CDT
Well it has been crazy here since my last post. Anthony learned how to climb out of his crib. Not fun. I am having a hard time getting him to go to sleep at night. He screams, shouts kicks the door, everything but go to sleep. We are also trying to sell our house and looking for a new one. Anthony decided the night before the realator was coming to climb out of his crib. Here is another good story....the day the realator was coming to take pictures, I was trying to get everything in order. Anthony was taking a nap. (or at least I thought he was)...I went upstairs to do something and smelled a not so pleasant odor coming from Anthony's room. Now it is 30 mins till the realator will be here for photos. I open the door and Anthony is laying on the floor without a diaper and poop all over him and the floor. I was freaking out...not wanting to wake him up, but I didn't have a choice. I had to put him in the bathtub and scrub the carpets...luckily the rug shampooer was right there and I was able to do his room real fast. Luckily I got done with a few minutes to spare. I wasn't laughing then, but now I think it is pretty funny.
Anthony is amazing. He is so full of energy. We go back to clinic on the 16th he also has a hearing test that day. Please pray that everything goes well...
Thanks for checking in on us...
maria
Tuesday, July 19, 2005 8:49 PM CDT
Update...Tuesday Evening
Anthony's AFP is 2.68 EXCELLENT
We went to clinic today. We saw Pattianne the nurse pratitioner first. She said everything looked good. Then she brought in Dr. Julie to feel Anthony's belly. She said something like are feeling the same thing. Yes my heart dropped. But they were just feeling the scar tissues. I was just a little panicked...to say the least. Well everything is fine. His chest x-ray was clear. I will find out the afp tomorrow. I will update when I know and let you all know. Thanks so much for checking in on us and praying for us. We are now eight months out. Pattianne asked me today when I was going to relax. I told her in five years. It is so hard to explain. I just pray everyday that he continues to be cancer free. I know that it is very possible that it could come back. I also know that it will be much worse if it does. I have heard from alot of people that I shouldn't worry about it, but it is much easier said than done. Anyway please continue to pray.
Maria
Monday, July 11, 2005 1:42 PM CDT
We just got back from a visit to the Doctor...ENT...Anthony's clogged tube is unclogged, but still a little fluid. We have a RX for a new drop. He also had a hearing test and seems as if Anthony has some high frequency loss. We will go back in a month to have it re-tested. He will go to clinic next week. Chest x-ray and blood work. Pray for clean results.
I have another prayer request. My sister Roseann is undergoing radiation for cancer of the cervix. Please pray for minimal side effects and a speedy recovery. My heart is breaking for her as she is going through this alone. She is in Vegas without her family close by to help her get through this. Rosie I love you and I wish I could be there for you.
Thanks for checking in on us...I will update next week and let you know how things go at clinic.....
Keep praying.
Maria
Saturday, June 25, 2005 10:54 PM CDT
Sorry it took me so long to update. Anthony had his appointment on Tuesday for a CT scan. It came back clean....YEAH!!!!! We are now at seven months clean. His AFP (tumor marker) is 3.68. We were very relieved once again. I did ask about the time frame when cancer could return. I should have known that she couldn't answer me. We really need to take it one day at a time. It gives new meaning to living every day to the fullest. She then asked me if I ever think about it. Yes I think about it all the time. It is always in the back of mind. I try not to dwell on it, but it is always there. I know that if it comes back it is going to be really hard on Anthony. I just pray that that is a bridge we never have to cross.
Sal took off on Tuesday to go with us. It was so nice to have him there. Especially since Anthony woke up early from his sedation and was not happy. We did all that we could to get him to go back to sleep. It didn't happen,,,but we did get to go home. He has been very clingy to me since. He gets very upset if I leave the room....I don't know why.
Monday we will go to the ENT to check on his ears. He will probably have a hearing test. I am hoping that they will be able to tell this time if there is any hearing loss. His ears have been so blocked that none of the previous tests were conclusive. On Tuesday he will go back to the pediatrition to get completely cought up on his immunizations.
I will update as soon as I have info on the hearing test. Thanks for checking in on us.....Keep praying...
Maria
Sunday, June 12, 2005 6:24 PM CDT
We finally got the pictures of Anthony. He is doing great. Talking so much more. He has many doctor appointments in the next few weeks. He will go to clinic on the 21st for a ct scan. Please pray that it is clean. He will also be going back to Dr. Elden to check his ears. He will most likely have a hearing test that day. Please pray that the if he has any loss that it is mimimal. I know I am asking alot, but he has been through so much already. I am hoping that any loss he does have can be corrected with aids.
Sal is done school already. We are so proud of him. He did incredible this year. I can't believe hs is going to be ten next month. Happy Fathers Day to all the dads out there. Keep praying for Anthony to remain in remission....Thanks for checking in on us...
Maria
Wednesday, May 25, 2005 9:17 PM CDT
Anthony went to see Dr. Michaelson yesterday, he got three of the five shots he needs to get him up to date on his immunizations. He did great. He is gaining weight and getting taller. She was so happy to see him so healthy.
On a sadder note....Dr. Rosenblum's granddaughter Sarah lost her battle on Saturday night. I feel so aweful. Please say a prayer for their family.
Anthony goes back to clinic on June 21. He will have a CT scan. Big brother will get to go with us and see Anthony get his giggle juice....before they sedate him. He loves to see him giggle. Please pray the they don't find anything...
Anthony is also talking more. I will keep you all updated....
Keep praying...
Maria
Friday, May 20, 2005 7:48 PM CDT
Anthony got his tubes today...He is doing great. We can't believe that something so small can be such a help. We were amazed when they showed us the tubes, they are soooo tiny. It was very quick. I don't think we had a chance to get comfortable when he was done. Much better than the last surgery. We will go back to see the ENT in six weeks. He will be having a hearing test, I am not sure when I need to call on Monday and ask her when to schedule the test. On Tuesday he is going to see Dr. Michaelson to get up to date on his immunizations. I can't believe it has been six months since chemo. Please continue to pray for no recurrance.
Thanks for checking in on us.....
Maria
Wednesday, May 18, 2005 10:19 PM CDT
We went to clinic yesterday. Anthony's counts are great...his AFP 3.75 and his chest x-ray is good...no signs of recurrance...Thank God....Anthony is going on Friday to get his tubes...Please pray that this solves the hearing issue. He will have a hearing test in two weeks. I am looking forward to finding out if he has any hearing loss at this point. We haven't been able to get a true reading because of all the junk in his ears. High frequency is usually what is lost. And luckily that is easily aided. I will keep you all updated. Also on Tuesday he will go back to the pediatrition and get caught up on his immunizations. It will be nice to be able to say yes he is up to date on them.....
I will update again on friday...Pray for an easy go on this....
Thanks,
Maria
Tuesday, May 10, 2005 5:07 PM CDT
Update on the tubes. I got a call today and they will be doing the tubes on Friday May 20 at CHOP. Because of all that Anthony has been through they don't want to do the surgery at the Surgery center in Exton. They feel more comfortable being at the main hospital. I guess we do too...
Keep praying...
Maria
Monday, May 9, 2005 5:32 PM CDT
Anthony had his appointment today with Dr. Elden. She is and ENT. Yes his ears are full of fluid and junk. He is going to have tubes put in May 24. She will drain all the junk out first. This should be the last of ear infections. And hopefully the begining of him hearing well and talking better. He is trying so hard. He also gained a little bit of weight. That is a good sign. He will also have a hearing test two weeks after the tubes go in. I feel like he is finally going to get some relief with his ears and his hearing.
Everything else is good. Anthony is a very active two year old. I think he is making up for lost time....
Keep praying
Maria
Monday, May 2, 2005 6:08 PM CDT
Anthony is doing good....We are trying to get him to gain weight...a problem I wish I had....I am just trying to get him to eat anything and everything.
We have an appointment next week with the ENT. I am hoping for some answers about his ears. Then hopefully we can get an accurate hearing test.
I am anxiously waiting to get the pictures that were taken at daycare. I can't wait to post it. I haven't been able to get Anthony to sit for a picture in a long time. I will post it as soon as I get it. Thanks for checking in on us and keep praying for all the kids and their families that are suffering with any type of illness. When I read their websites I realize how lucky we are.
Maria
Thursday, April 21, 2005 7:55 AM CDT
I got the rusults from Anthony's tests yesterday. His chest x-ray came back good. And the AFP is 3.3. Excellent. No need for worry. One more month down....YEAH!!!! Now if we can just get these ear infections taken care of.
Anthony is talking much more. I should say babbling and every once in a while you can make out a word or two. Thanks for checking in and keep praying....
Maria
Wednesday, April 20, 2005 7:11 AM CDT
We went to clinic yesterday. Guess what....Anthony has another ear infection....yup...both ears. He is such a trooper. He had his bloodwork done and didn't even cry. Then we went to get his x-ray. He knew exactly what to do. They were amazed at him...pretty sad that at two years old you know where and how to stand to get a chest x-ray done. I will find out the results of the tests today. Everything else looked good. We go back in a month. I will update later when I find out the results of the AFP and chest x-ray...
Keep praying,
Maria
Monday, April 18, 2005 4:17 PM CDT
Anthony has another fever....I don't know why he is always sick. It is very scary. I can't help but think is this a sign that the cancer is back???? I know it sounds crazy, but I can't help it. He goes to clinic tomorrow. Chest x-ray and blood work. Please pray that everything is fine. I get so nervous right before a visit. We are coming up on six months since the last chemo. It doesn't seem possible. I will update tomorrow and let you all know what is going on....Thanks for checking in on us...
Maria
Tuesday, April 12, 2005 11:39 AM CDT
We went to see Dr. Michaelson today. She just re-checked his ears to make sure the infection cleared up. She said they looked great and she was so happy to see Anthony looking so good. He is doing really well. He is so active. I forgot what it was like to have a two year old.
I have a major prayer request. I found out while at the Drs office that Dr. Rosenblum's granddaughter is not doing too good. She needs lots of prayers. It is not looking too good for her. There may not be much more time left for her. Please pray that she doesn't suffer too much. My heart is very heavy today. I found out yesterday that a little girl from Sal's school earned her Angel's wings on Sunday. She was battling Leukemia. Please pray for her family. They are going to need lots of strength to get through this. It is days like this that make me realize how lucky we are. Anthony did so well with everything. Love your healthy kids and when you feel really frustrated with them think of these families. It could be so much worse than it really is.
Please keep praying...
Maria
Tuesday, April 5, 2005 11:22 AM CDT
Anthony finally stopped vomiting....I called the Doctor yesterday and they told me it was a GI bug. It seems to be going around. Now I am trying to get him to eat again. It is very difficult especially since he is such a fussy eater. I am sure that is the results of chemo. I know it has been awile, but it can affect the tastebuds....He is getting very tall. I put his pants on and they are fine around the waist, but they are floods. A problem I have never had. He is going to be my tall lanky kid I guess...Not that I am complaining...I guess I am just jealous...
Anthony added another word today...Elmo....aka..memo...Miss Barb will be back on Thursday to work with Anthony. She hasn't been here for a few weeks due to illness and meetings...I can't wait to tell her Anthony's new words. Hopefully he will say them for her.
I will update again soon....Thanks for checking in on us. Stop by the guest book and let us know you were here...
Keep praying...
Maria
Sunday, April 3, 2005 11:11 AM CDT
Anthony had a good birthday. Thanks to all that signed the guestbook. He was feeling better by Tuesday, then his brother got it...fever, ear infection, but he is feeling better now too..Never a dull moment. Now Anthony has an upset stomach. He has been vomiting,..i am hoping that this passes real quick. REAL QUCICK....it is no fun...
Anthony goes back to the doctor next week to re-check his ears. Then April 19 we will return to clinic. More bloodwork and a chest x-ray. He has just added a new word to his vocab....baby...he keeps saying it and laughing. He has such a great personality. He is so proud of himself.
Thanks for checking in on Anthony...Keep praying...I will update soon.
Maria
Monday, March 28, 2005 6:25 AM CST
Hi this is Anthony,,,,my mom is typing for me...Today is my birthday and I am so happy that I am not in the hospital this year. I still feel a little yucky from my latest ear infection. I had fun yesterday. The Easter Bunny came and left me lots of good stuff. My Aunt RORO came in from Las Vegas to see me. I was so happy to see her. Although she wouldn't wipe my nose, she kept making my mom do it. CHICKEN,,
Then we went to see Mom Mom and Pop Pop and had the cutest bunny birthday cake...I didn't eat it because I was very tired and cranky.
Stop by the guest book and say hi to me. I like when my mommy reads them to me. I am going to enjoy my day now....IT IS MY BIRTHDAY....did you see me on the news?????? They wished me a happy birthday...YEAH I was on TV....My Mommy taped it so that I can have it forever...She will print out any birthday messages here too...so don't forget to leave one. Thanks for checking in on me...and saying lots of prayers that helped me get better and to keep me healthy...
I Love You All.....
Anthony
Thursday, March 24, 2005 8:31 AM CST
Can you believe that it was one year ago that this nightmare began. I am very nervous because Anthony is not feeling well and we are back to the pediatrition today. It is like daja-vo.(spelling?). It was very hard making the phone call. I feel like it is starting over again. I know that he is just sick, but I can't help it. He has had a fever since Tuesday. I thought it would break last night and when it didn't I thought he better get seen. He may have another ear infection.
Other than being sick, he is doing great. We are getting ready for Easter. I can't believe that it is this weekend. It is so early. And Anthony will be two on Monday. Make sure you tune into CBS between 5-7am to hear them wish Anthony a happy birthday.
We would like to wish everyone a Happy Easter. Keep praying....Thanks for checking in on my little man...
Maria
Thursday, March 17, 2005 9:15 PM CST
We got the results of Anthony's AFP today. It is 1.48 YEAH!!!!! It was very nerve racking waiting for the results. When I got home from work last night night I asked Sal if Dr. Stern called. He said no...later I checked the caller id and saw that someone from CHOP had called. Well there was no message on the machine, so I assumed that it was bad news. After biting off all my nails I finally got to talk to her around 2pm today. It is Thursday and she is not in KOP she is down at CHOP and doesn't get there until the afternoon....She assured me that if it was bad news she wouldn't stop calling until she got us on the phone...Now she tells me...oh welll....it was good news so I am very relieved..The countdown is on....eleven days until the second b-day...I can't believe it...make sure you all tune into channel 3 (CBS) on Monday March 28th in the AM to see them wish Anthony a happy birthday....
For those that may be wondering...we have decided to keep the birthday low key. I think I am still a little crazy about having to spend the first birthday in the hospital. I am afraid that it may happen again...I know call me crazy, but I can't help it.
Thanks for checking in on us...keep the prayers coming...not just for Anthony, but all the kids suffering from this dreaded monster...
Maria
Tuesday, March 15, 2005 12:34 AM CST
We just got home from clinic. Anthony is doing great. Another month down...I am very happy. We are waiting for the AFP. We should have that tomorrow. His CT scan was good and so are all of his counts. I do need to make an appointment to see an ENT to have his ears checked. We are just concerned that with the amount of ear infections Anthony has had, he may need tubes. He probably would have gotten them a year ago, but the cancer took over. Now that we are off treatment and he doesn't get the anti biotics that he used to get, he has had two ear infections. The fluid in the ear may be causing him to not hear as well. We are going to see what they say, then maybe do another hearing test. Although with the fluid in his ears they can't get an accurate test.
I can't believe that Anthony is going to be two in just thirteen days...It has been almost a year since this nightmare started...It seems like it has been forever. What a long year...
Keep praying...and remember of all the kids out there battling this monster...
I will keep you all updated....Thanks for checking in..
Maria
Tuesday, March 1, 2005 11:50 AM CST
Anthony is doing good. He has had two ear infections since coming off treatment. It was nice to be able to call the pediatrition instead of the oncologist this time. I think we have all had a little of what is going around. Finally I think we are all past it...Anthony will go back to clinic on March 15th...CT scan...please pray it is clean...
I can't believe my baby is going to be two this month. It will be a much happier day than last year. We will not be in the hospital this year.....YEAH!!!! And it will be a true celebration of life. Please keep praying that this monster stays away....Everyday is a true blessing. And one day closer to being able to say that Anthony is cured...I can't wait for that day...
Thursday, February 17, 2005 9:20 PM CST
Dr.Stern called yesterday to let us know that Anthony's AFP is 2.4...EXCELLENT!!!!!!!We are very happy. Liver function is normal and counts were good. He is doing great. His teacher still comes every week to help him with his speech. He is doing good. He is babbling much more. He says a few more words too....Thanks for stoping by to visit my little man. Keep praying...
Maria
Tuesday, February 15, 2005 9:22 PM CST
We went to clinic today. While driving there I got knots in my stomach. Going there always make me realize that this nightmare is not completely over. It is so hard to explain. Every little thing that Anthony does make me think....is it back???? He had a little cold last week and every once in a while he would touch his belly like it hurt. My heart dropped every time he did it.. All I could think was oh no...is there something there. I wish I could explain it better. Just enjoy your kids, and when you feel like you are at the end of your rope,,,think of all the kids that are suffering and be happy that yours are normal healthy kids. While Anthony was going through treatment I just thought he was such a good baby....Now I know that he just wasn't feeling good. He is a typical two year old. When I get frustrated and feel like I can't do it anymore I just take a deep breath and thank God that he is here and is able to be a kid.
I know you are probably thinking what the heck is she babling about....well one of our caring bridge friends lost his battle to this monster on Sunday morning. It was the day before his fourth birthday. My heart is very heavy for this little man and his family. Also another little boy that my friend Maureen knows lost his battle on his eleventh birthday. It just made me realize how lucky we are that Anthony is doing so well. It has also tought me not to take this part of the journey for granted.
On to the update on my little man...He did great today. His chest x-ray was clean...YEAH!!!! When Dr. Julie was examining Anthony I was watching her face....I told her I was watching, because I didn't want to see her smile disapear....well it didn't...She didn't feel anything....She said that he looks great...I will have his AFP tomorrow.....
Please pray for the families of those that have lost their angels....Pray that they will find peace. I can't even imagine the pain they are feeling....
I will update when I find out what the AFP is....
Happy Valentines Day...
Maria
Monday, February 7, 2005 5:46 PM CST
Not much to update. We are recovering our loss last night. We are very proud of our Eagles. They fought hard.
Anthony is doing well. We return to the clinic next week. More bloodwork and chest X-ray. Pray all is well....Anthony is a healthy almost two year old at this point.....very active...and sooo cute..I will update after our appointment next week...
Keep praying for all the kids affecting by this monster...
Maria
Tuesday, February 1, 2005 10:39 PM CST
Anthony is doing great. He is very happy. And feeling much better. Our next clinic appointment is Feb 15. I am still trying to get used to going monthly. It is a big change from going weekly sometimes two or three times a week.
We are all really looking forward to the super bowl on sunday. Anthony does the E-A-G-L-E-S chant. He is just too cute. We are really enjoying life right now.
I hope everyone enjoys the game on Sunday and cheer the eagles to victory......FLY EAGLES FLY......
Thursday, January 27, 2005 1:40 AM CST
We got great news today. Anthony's x-ray was clean and his AFP (tumor marker) is 1.64. I can't ask for anything lower. He is feeling much better from his ear infection. We will go back on Feb. 15,
I have a couple of prayer requests...Aunt Dolores had a hip replacement yesterday she is doing good. Please pray for a speedy recovery.
Also for a friend's husband who has been hospitalized since before the holidays. He is in ICU, He has a staph infection and gout....his name is Carl and he needs your prayers....
Thanks so much...
Maria
Tuesday, January 25, 2005 9:13 PM CST
We went to clinic today. Anthony is doing well. His counts all looked good. Both of his ears are infected. He had a fever, but the meds seem to be helping. He was more like himself tonight. He is now resting comfortably. Hopefully for the entire night.
He also had a chest x-ray today I will find out the results later this week. Along with his AFP. I will update as soon as I get that information.
We go back to clinic on Feb. 15th......Keep praying that this monster doesn't come back...
Maria
Thursday, January 13, 2005 8:19 AM CST
Yesterday Anthony had his port removed...YEAH!!!! I can't even tell you how happy we are about that...It is like the final step to ending this nightmare. He did great. It was a quick sugery. He doesn't seem to be in any pain. He is playing and acting like himself.
We go back to clinic on Jan. 25. I am still not used to not going every week. I feel like I am forgetting to do something.
Keep praying that this never comes back....
Maria
Wednesday, January 5, 2005 12:32 AM CST
I hope everyone has a Happy and Healthy New Year. I know this one has to be better than the last year. Anthony is doing great. He will get his port out next Wednesday. Then back to clinic at the end of the month. His speech classes are going well. Miss Barbara will be here again tomorrow. He is starting to vocalize more. I will update again soon. Please say an extra prayer for all the kids out there that are suffering.....
Thanks....Happy New Year
Maria
Tuesday, December 28, 2004 9:32 PM CST
I hope everyone had a very Merry Christmas. Ours was wonderful. Yesterday we went to clinic and Anthony had a CT scan. The emotions that I hadn't felt since last month came rushing back. Worrying that they were going to find something. Luckily they didn't the scan was clean and the AFP is 5.2. I couldn't be happier. Today we went for GFR. It is a test that tests the functioning of the kidneys. That was fine also. We are so happy. On January 12 Anthony will have his central line removed. We are now on a monthly schedule for clinic. He will have bloodwork done and a chest x-ray. They do the x-ray, because he had the spots on his lungs. Then every three months he will have a CT scan.
Thank you all for your love and support through all this. I know I keep saying it, but I can't even begin to imagine going through this alone.
I wish you all a very HAPPY AND HEALTHY NEW YEAR.
Maria
Wednesday, December 22, 2004 9:47 PM CST
I had to cancel Anthony's visit with Barb tomorrow. I am so far behind and running out of time. I found out yesterday that my "boss" is closing the salon. That was my Christmas bonus this year. Yes it has been a little stressful. I have so my phone calls to make. On top of trying to finish shopping and wrapping and cleaning...need I go on. It has just snuck up on me this year. Anthony is doing wonderful. Monday he is going to have a CT scan and Tuesday the GFR test. Hopefully we will be able to schedule to have his port out soon after that.
I really want to wish you all a very MERRY CHRISTMAS AND A HAPPY AND HEALTHY NEW YEAR!!!
I will keep you updated on the results of the CT Scan...lets pray for a clean scan...
Maria
Friday, December 17, 2004 12:41 AM CST
Miss Barbara came out yesterday to work with Anthony. the first visit went well. Most of it was paperwork, then some playtime with Anthony. She is very good. She is going to use different techniques to get Anthony to communicate better. She is going to teach him some sign language. I am looking forward to that. She will be back next Thursday.
Anthony is doing great. It was great to be able to take him out last week. We had a family party to go to. It was the first time since March we were able to bring him around alot of people. It was nice for us to be able to be out as a family. Then on Tuesday we went to a Holiday party at the clinic. We all had a great time. It was nice to be there for fun this time. Santa came and all the kids got presents. Anthony got a Tonka truck that he is having so much fun with. Sal got a motorcycle. It was so nice. I am really looking forward to Christmas...I hope you all have a wonderful holiday.
Maria
Sunday, December 12, 2004 6:22 AM CST
Anthony is going to begin his speech therapy on Thursday morning. I am very excited to get this started. He babbles so much that I know he is trying to tell us something I just don't know what it is. He is doing great and today we are going to our first family party together. This is the first time since March that we have been able to take functions like this. We are very excited. It is nice to go as a whole family. I finally got the christmas decorations out of the attic. It might actually start to LOOK like chistmas here soon. I will update Thursday and let you all know how speech went....Have a great week. keep praying
Maria
Wednesday, December 1, 2004 8:59 PM CST
Anthony had an Echo and EKG yesterday. Everything looked good. His counts are excellent. We even found out his AFP 5.0. We are very happy. He is doing great. We don't have to go back until Dec.27 he will have a GFR test. That tests the kidney functions. Then on the 28th he will have a CT scan. I can't believe I don't have to go back for a month.
The boys are definatly looking forward to Santa. They are having a holiday party at the clinic and Santa will be there. YEAH...we don't have to go stand in line at the mall.
I hope you all have a wonderful holiday season. I know we will....
Maria
Friday, November 26, 2004 7:19 PM CST
I hope everyone had a great Thanksgiving. We did. We have so much to be thankful for. Anthony had a good day. He is so full of energy. On Monday I took a ride over to my mom's house. (Dad and Sal were bowling) My mom and I couldn't get the stuff away from Anthony fast enough. He was like a crazy baby going from one thing to another. I guess he was sicker than we thought. That is why he was so calm. I am not complaining. I am happy that he is so active. He keeps us on our toes.
On Tuesday he is going to have an EKG and an Echocardiogram. He will also have bloodwork done. Then we won't have to go back until after Christmas. It was really weird last week not having to go to the clinic. It will be really weird not going for a month. This has been my life for the last eight months.
Keep praying...
Maria
Say an extra prayer for a little girl from Sal's school that is going through a bone marrow transplant. Her name is Lizette. Thanks
Monday, November 22, 2004 4:49 PM CST
We had the poeple from Easter Seals here today. They evaluated Anthony's speech and cognitive skills. As far as his speech goes he is at about the level of a fourteen month old. We will be working with a speech therapist. We were very happy with the evaluation. He is above his age level with the cognitive skills. The evaluation reported exactly what we thought. We were concerned with his speech. I am sure that all he has been through this year is the reason. But this is available so we are taking advantage of it. We feel that it will only help Anthony in the long run.
I want to wish everyone a very Happy Thanksgiving. I know it is a very special holiday for my family this year. There were times in this past year that we didn't know where we would be now. It has been a very difficult year for us. We couldn't have gotton through it without all the support of our family and friends. We have met some wonderful people through this journey. We also found out how many people really care. I can't even begin to express how touched we have been. This has been a year of emotion, education, realization and appreciation. We received an education that I am not sure we needed. We have felt emotions that we never thought we would have to face in our lifetime. We now realize how precious each and everyday really is. Life is so precious. We learned to appreciate the little things that we used to take for granted. I feel that we are different people because of this journey. We are closer than ever and for that I am thankful. This holiday has always been a favorite of mine and now it has new meaning. We are looking forward to having a "normal" life. Anthony will always be my hero. He is so amazing. This holiday is for both of my children. Anthony suffered physically, but Sal suffered emotionally. He has been the best big brother to Anthony, and the best son to Sal and I. This is something that effects the entire family. It is really weird not having a clinic appointment until next week.
Now that you all know what I am thankful for this year from our family to yours may you all have a very HAPPY THANKSGIVING....WE LOVE YOU ALL....
Maria
Monday, November 15, 2004 2:02 PM CST
We went to clinic today. Anthony's counts were good. No blood needed. YEAH!!!!More good news..Anthony is now considered OFF treatment. I am soooo happy. I never thought we would get to this day. We will go back in two weeks for counts and AFP. It will be nice not to have to worry about that until after Thanksgiving. After that appointment we will go to monthly visits. We are planning to do another scan around Dec. 28th.
I hope everyone has a great Thanksgiving. I know we have alot to be thankful for this year.
Maria
Friday, November 12, 2004 1:16 PM CST
We just got home from clinic. Anthony's AFP is 6.9. YEAH it is lower. He got his platlets and is doing well.His ANC is low. That is what helps him to fight off infection. He has to go back on Monday for counts again. Until then we will have to keep him away from anyone that could get him sick. I am hoping that he doesn't need a transfusion. His liver functions are back down. We are going ahead with the plan to scan right before Christmas. Then he will have his port removed.
Keep praying,,,
Maria
Thursday, November 11, 2004 4:22 PM CST
We went to the clinic today. Anthony's platlets are low. We have to go tomorrow to get platlets. It was too late in the day today to get them. He is doing really well. Dr. Olthoff came over to see him. She took a look at his last CT scan and said his liver is back to full size. I am amazed that it grew back so fast.
I also went over to the onco floor to visit the nurses. It is amazing how different the hospital looks. They have done so much work since we were there last. Everyone was so excited to see Tony. They all commented on how well he looks.
I can't wait to find out what his AFP is this week. The roller coaster number. I am praying that it is down again. One thing I did talk to Dr. Olthoff about was if the tumor was to come back could he have another resection? The answer NO. Please pray that it doesn't come back. I will post the AFP as soon as I find out.
Maria
Tuesday, November 9, 2004 9:29 PM CST
Hi I just wanted to update everyone and let you know that Anthony's appointment for tomorrow has been changed until Thursday. We will be going down to CHOP. Dr. Olthoff (surgeon) wants to see Anthony. She hasn't seen him in a while so it is time. It makes more sense to make one trip down there rather than go to King of Prussia on Wed and down to chop on Thursday. It will make it easier if he needs any blood or platlets also. It is there and easier to get than waiting a day for it to arrive in KOP. He is doing well.
Also, I have changed my email address. We decided to go back to comcast. Doing what I can to save a few bucks. I will update when I get home on Thursday...
Maria
Tuesday, November 9, 2004 7:51 AM CST
It was a pretty quiet weekend. Anthony has a runny nose, but other than that he is doing good. The girl came yesterday to get the early intervention started. I am waiting to hear from someone from Easter Seals. They will come out for about two hours and evaluate him. I am looking forward to getting him talking better. Now he mainly grunts and it can really wear on your nerves by the end of the day. Tomorrow we go to clinic for counts. Unfortunatly I won't know the AFP until Friday. I really hate this waiting game.
Yesterday was spent on the phone between Drs offices and the insurance company. The claims for the testing my brother had done are being denied. I am hoping that yesterdays calls get them taken care of. I really can't afford to pay them all...It is very stressful...sorry to vent, but yesterday was a bad day for me.
Keep praying that the numbers come down this week. And for all the other kids suffering from this dreaded disease.
Maria
Friday, November 5, 2004 2:11 PM CST
I feel like I am on an emotional rollercoaster. I just got a call from Dr. Stern, Anthony's AFP is 14. Also his liver functions are up. She said I shouldn't worry about it as the afp has been fluctuating. It is easy for her to say she isn't MOM....I feel like the wind has been knocked out of me. Sal also thinks we shouldn't worry. How can I not worry this is my baby we are talking about. I know I shouldn't worry, but tell my heart that...It is very heavy right now. I am so scared of a relasp. I am trying really hard not to let this get to me. I guess I just have to wait until next week when we do the test again. Please keep praying for my baby.....
Maria
Thursday, November 4, 2004 7:06 AM CST
We went to clinic yesterday. Anthony counts were excellent. We don't have to go back until next Wednesday. Anthony is going to have a CT scan, hearing test, EKG and Echocardiogram all right before Christmas. Then he will have his port removed since he doesn't need anymore chemo. I can't believe we are nearing the end. It has been such a long year. Thanksgiving will have new meaning this year. It feels good to breathe a sigh of relief. This has been the worst year of my life. When I look back I don't know how we got through did it. I pray everyday for all the other kids and their parents that we have met. It is very sad to see how many kids are suffering from this dreadful disease. Please pray that Anthony's cancer doesn't return. And for all the other kids that are suffering. Thank you all for your love and support this past year. It was overwhelming at times. I really appreciate everything, the messages in the guestbook, the visits to the hospital, cards, gifts and most of all your prayers.
Anthony is doing great. Now it is time to start enjoying life. We are going to have him evaluated by the Intermediate unit for delayed development. He is not talking as much as he should be. It may be his hearing at this point, we are not sure. It is hard to get a true hearing test at this age.
I will update the site as things happen at this point. I will try to do it at least weekly. Thanks for stopping by. Keep praying,
Maria
Sunday, October 31, 2004 2:44 PM CST
We are still excited about Anthony's latest AFP. 1.9. We actually got him to put his halloween costume on last night. He looks so cute in it. The picture of his is the best we got. Dad did the coloring of it so you can't see him. Sal is in the photo album. And Daddy and Tony watching the EAGLES.....Anthony is doing great. He is full of energy and very strong willed. When he wants something he doesn't stop until he gets it. He is sooo cute though.
Hopefully he will let us dress him up tonight to go trick or treating. Happy Halloween.
Friday, October 29, 2004 7:49 PM CDT
We have great news...Anthony's AFP is 1.9...We are so excited. It doesn't get much lower than that. Anthony is doing well. He is eating a little better tonight. He didn't eat much today.
I never thought I would see the day that his AFP was soo low. I can't even describe how happy I am right now. Thanks to everyone for all the love, support and prayers.
Friday, October 29, 2004 6:40 AM CDT
Anthony had a pretty good day yesterday. We spent the afternoon at Mom Mom's and he ate most of the day. I was shocked, because usually after chemo he doesn't eat much. I was very happy. He didn't eat much after that...
I am going to attempt to get his picture done again on Tuesday. Sal is off from school and I am hoping I can get one of the two of them...Sal is such a good big brother. He is so good with Anthony, when he isn't teasing him anyway. He is very protective. He said to me the day, Mom, I hope Anthony's cancer doesn't come back. It just broke my heart to hear him say it. He doesn't usually say much. He loves his brother more than anything. And Anthony loves him too...one of his first words..Salby...Yes even before mommy and Sal loves when he says it. He grins from ear to ear.
I am hoping to get some pictures of the boys in their halloween costumes. I don't know if Anthony is going to let me put his on him....I am hoping. I will post them when I get them...Have a happy halloween...
Keep praying..
Maria
Wednesday, October 27, 2004 10:02 PM CDT
We went to clinic today. I was shocked at how much Anthony's counts had come up. He was able to get his chemo. We are waiting to find out what his AFP is and hopefully this will be the LAST chemo. It all depends on what that number is. That is the tumor marker. He did really well today. He is amazing. Hopefully he will recover easily to this chemo. I know the more chemo that you have the harder it is on your body. Anthony has had alot...This is round nine. Yes it is alot of chemo for his little body. Keep praying that this is the end.....
Thanks so much,
Maria
Sunday, October 24, 2004 9:06 PM CDT
It was a good weekend. Anthony is back to himself. Happy and energenic. He is such a cutie. He wore his Eagles jersey today and cheered on the birds. He just looked so cute. We have to go back to clinic on Wednesday. If his counts are good he will have what I am hoping is his last round of chemo. I can't believe we are finally here. It has been a long road. Please keep him in your prayers. I am so scared of having this cancer return. I know that there is always the possiblity of recurrance. I try not to think that way, but I have to be realistic. Everyday is a blessing. I know that better now than ever before. Keep all the children fighting this awful disease in you prayers.
Thanks so much,
Maria
Friday, October 22, 2004 11:34 AM CDT
We went to clinic today to have Anthony's counts checked. He is doing good. His platlets are coming up. They are still too low for chemo. We are going to check again on Wednesday. If they are high enough he will have chemo. If they are not we will go back on Friday. I think I am going to have to give him the GCSF shots with this round. I am not looking forward to that. I can't wait to wake up from this nightmare...
Anthony is doing good today. He had a really bad day yesterday. He had diarrea all day and was just miserable. Today he seems like his old self. He was giving kisses to all the nurses today...he is such a flirt...
Wednesday, October 20, 2004 2:37 PM CDT
We just got home from the clinic...it was a longggg day. Anthony had his CT Scan..and the results are very good. It came back clean, no signs of cancer anywhere. He also had a blood transfusion. It is very hard trying to keep him still. He has to be sedated for the ct scan and the effects of the meds last a while. It makes him very unstable on his feet. He looks like he is drunk. Sounds funny, but trying to keep him occupied is very hard. He screams at the top of his lungs, which at home I can deal with. At the clinic there are other kids trying to rest so I try not to let him scream. It doesn't work very well. I couldn't wait to get out of there.
His AFP is 8.8. We have to go back on Friday for counts again. We are keeping an eye on his platlets. They are low, but not low enough for a transfusion. We he is freaking out so I have to go....
Monday, October 18, 2004 11:46 AM CDT
We went to clinic today...Anthony's counts are down...He is going to need a transfusion on Wednesday, he may also need to get platlets...And also the CT scan. It is going to be a long day... He is doing good. He is a little cranky, but that is due to the low blood.
We need to be careful the next two days until he gets the blood. With the counts down he is much more likely to get sick. So we will be hanging at home the next few days.
I walked on Sat for the Leukemia and Lymphoma society. It was cold and yucky out...THANKS SO MUCH FOR ALL OF YOU THAT SPONSORED ME.... I really appreciate it and hopefully they will find a cure soon...
Keep praying...
Maria
Thursday, October 14, 2004 10:00 PM CDT
I am sorry that I haven't had a chance to update in a few days. It has been another crazy week. I am really looking forward to everything being done. Monday was clinic. Tuesday I went and stood in line for almost two hours for a flu shot.....didn't get one, because Anthony was getting tired and couldn't handle waiting anymore. since I was number 74 and they were only on 15 I figured it would be a couple of hours before they got to me. Well the boys got their shots....Wednesday was to the doctor for Sal to get his shot....Today back to CHOP for counts...In between calling Insurance companies to find out why the testing they did on my brother was not being paid. Then calling back and forth to the hospital to tell them what I was told. Then on to making calls to try to get referrals. I hate referrals.....But the new doc that I chose is really nice and gave me what I needed....This is for our secondary insurance that covers anything that our primary insurance doesn't cover. Tomorrow I get to stay home and catch up on housework until I have to go to work at 5pm....
Saturday is my walk...Thank you to all of you that helped me out. With all of your support I raised over $1200. My goal was $1000....So I am very happy. THANKS SO MUCH.....
Ok so onto the update on Anthony....he is doing well...his counts have dropped a little since Monday. Not enough to need a transfusion. I go back on Monday for counts and then Wednesday for a CT scan. Yes another week of appointments...Do I sound a little frustrated????Sorry...
Have a good weekend...and
GO EAGLES.....
Anthony got his fall Eagles outfit tonight.....
Monday, October 11, 2004 4:17 PM CDT
We went to clinic today. Anthony's counts are great. We have to go back on Thursday and then again on Monday. The chemo he received can cause his counts to drop at anytime. He is doing great. He received his flu shot today. I am hoping he doesn't get sick from it.
Other than that he is wonderful. He is full of energy. And very strong willed....HMMM!!! a typical 18 month old.
He has a scan next Wednesday. Please pray that they don't find anything.
Friday, October 8, 2004 9:36 PM CDT
In my last entry I said that Anthony's AFP was 8.9.....I lied it was 8.4...oops...
Sorry about that...
Anthony is doing great...I have been trying to get some new pictures of Anthony, this is the best one. When he sees the camera, he wants to grab it....check out the other pictures that I posted...
Keep praying that the numbers remain low and the scans doesn't show anything.
Thanks
Friday, October 8, 2004 9:18 PM CDT
In my last entry I said that Anthony's AFP was 8.9.....I lied it was 8.4...oops...
Sorry about that...
Anthony is doing great...I have been trying to get some new pictures of Anthony, this is the best one. When he sees the camera, he wants to grab it....
Keep praying that the numbers remain low and the scans doesn't show anything.
Thanks...
Thursday, October 7, 2004 7:44 AM CDT
We got some really good news last night. Anthony's AFP is down to 8.9...YEAH!!!!!!!!! That is the lowest it has been. He is doing really well. He is tolorating the chemo so far. He had a good day yesterday. He is such a happy baby...and devilish....He knows just when he is doing something he shouldn't he just gives you that look like....I know I am not supposed to be doing this...
He is scheduled for a ct scan on the 20th.....If that doesn't show anything and his afp remains low...He will only need one more cycle of chemo...I can't imagine that scan will show anything, but you never know with these little monsters...Keep praying..
Thanks to everyone that has helped me so far by sponsoring me for the Light the Night Walk that I will be doing on Oct. 16. I really appreciate it. I will include the info for those that are still interested. This is a great cause. For those of you that don't know why this is so important to me, I lost my sister to Lymphoma ten years ago. The money raised will help them find a cure.
Keep praying for a cure...
Maria
http://www.active.com/donations/fundraise_public.cfm?key=ltnMNucifo
or you can mail your check to me, made out to the leukemia and lymphoma society.
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Tuesday, October 5, 2004 9:58 PM CDT
Anthony had his EKG and Echo today. They are fine...He also had chemo. We are hoping that the AFP (tumor marker) will stabilize. Also he will have a CT scan in a couple weeks. If they are good he will only need one more cycle of chemo. He is such a trooper. We had to be there at 9am and he was so good all today. Until the last hour he was so tired. Then he had just had enough. It was 1pm at that time and of course he was hooked up receiving his chemo. So we had to be creative in keeping him occupied. The nice thing about being in King of Prussia is there are not a lot of kids there.When we got home he slept for three hours... He is doing really well. He is still eating and gaining wieght. He hasn't been sick yet....Thank goodness for Zofran. I don't what we would do without it.
Thanks to everyone that has helped me so far by sponsoring me for the Light the Night Walk that I will be doing on Oct. 16. I really appreciate it. I will include the info for those that are still interested. This is a great cause.
Keep praying for a cure...
Maria
http://www.active.com/donations/fundraise_public.cfm?key=ltnMNucifo
or you can mail your check to me, made out to the leukemia and lymphoma society.
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Monday, October 4, 2004 10:41 AM CDT
Anthony goes tomorrow for an EKG and an Echocardiogram. After that he will have his counts done and if all goes well he will get chemo. This is the second of possibly four cycles. He had a good weekend. Yesterday he spent the day at MomMom's. Sal and I went out to watch the EAGLES...He had so much fun, swinging on the swing. He also learned how to open the door and walk out on the deck. He enjoyed just sitting out there. And throwing his toys over and making big brother go get them.
I hope that he tolorates this chemo ok....He is such a trooper. Keep praying for Anthony and all the children that are suffering. I have met so many wonderful people and realize as aweful as this is there are others out there that are worse off....keep them in your prayers. Thanks,
Maria
Also,,,,I am begging....those that haven't sponsored me for my walk yet...You still have time....The walk is Oct. 16. Thanks so much...Just contact me and I will let you know how to get the money to me....
Friday, October 1, 2004 12:21 AM CDT
Anthony is doing really well. He had his hearing test yesterday. It went ok. They don't feel that there is any significant loss at this point. We need to keep monitoring him. He is supposed to get chemo on Monday. I just hope he tollorates it ok. The more your body gets the harder it is to handle. He has been such a trooper so far. I noticed today that he is losing some hair. It just started to come back. I am trying to get some pictures of him before he loses it again. I will post them as soon as I get a good one.
Keep up the prayers....
Maria
Tuesday, September 28, 2004 10:18 PM CDT
We had a quiet day today...And lots of rain tonight...I hope everyone is safe. It was terrible out. I had to take Sal to CCD I didn't think I was going to make it home. Anyway Anthony had a good day. We didn't do anything too exciting.
I wanted to remind you all of my walk for the Leukemia and Lymphoma society. Thanks to all that sponsored me, You are helping reach my goal....for those that didn't you can do it right on line,,,I will provide the like. If you would rather send me a check Please make it out to The Leukemia and Lymphoma Society. Thanks in advance.
Maria
http//www.active.com/donate/ltnPhilad/ltnMNucifo1
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Tuesday, September 28, 2004 6:55 AM CDT
We went to clinic yesterday. Anthony's counts are good. He will have chemo next Monday. He also has to have a hearing test on Thursday and an EKG and Echocardiogram on Monday before the chemo. He is most likely going to have more chemo than the two cycles we orginally thought. The Doc's are looking at maybe four cycles. UGH.....
He is doing awesome....very active and into everything..babbling constantly. Typical little boy...
Keep up the prayers...
Sunday, September 26, 2004 9:42 PM CDT
Anthony has had a pretty good few days. He got the drain out on Thursday and for the first time in a month I was able to put him in the bathtub. He smelled sooooo good. He really enjoyed playing in the tub. It was so much easier than trying to sponge bathe him. I feel like life is starting to get back to normal....It has been one month since surgery and six months since our original diagnosis. I don't know how we got this far, but we did. When I look back I don't know how I got through it, but here we are. Not that the journey is over yet. I just feel like we are almost there. We have to go tomorrow for blood work. The counts have started to drop I am just hoping that they stabilize so we don't have to transfuse him. Next week will be the final chemo treatment...YEAH!!!! I cannot even believe that I just said that. I never thought we would get to this point. Anthony is such an amazing little boy. Thank you to everyone that has supported us through this journey. Please keep praying....
Thursday, September 23, 2004 2:45 PM CDT
We just got home from clinic. Anthony finally got the drain OUT.....YEAH!!!!!!!Being the chicken that I am I ran out of the room when they did it. It took all of about two minutes. I am just so happy that it is out. I just hope that I can change the bandage this time. I had to make Sal do it the last time. The gauze go stuck and I couldn't get it off. His counts are stable. We are going to go back on Monday for a CBC. Hopefully the counts won't change much.
He is back to his happy little self. I am trying to get him to say more words...It is so hard to understand what he is saying...
Keep up the prayers...
Monday, September 20, 2004 5:10 PM CDT
We went to clinic today just for a CBC....Everything is going good. Counts are still up. Although they don't usually fall that fast. We go back on Thursday for another CBC and hopefully to get this drain out. I am so ready to have it out. Anthony dosn't fuss about it, but it has to be uncomfortable. I can't wait to find out what today's AFP is.
Anthony is back to himself..He is playing and eating and talking up a storm.
LET'S GO EAGLES!!!!!!!!!!!!!!!!
Thanks to everyone that has helped me so far by sponsoring me for the Light the Night Walk that I will be doing on Oct. 16. I really appreciate it. I will include the info for those that are still interested. This is a great cause.
Keep praying for a cure...
Maria
http://www.active.com/donations/fundraise_public.cfm?key=ltnMNucifo
or you can mail your check to me, made out to the leukemia and lymphoma society.
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Saturday, September 18, 2004 4:26 PM CDT
We got some good news yesterday. Anthony's AFP is down to 16.5. The normal range is under 10. That was the number before chemo. I can't wait to find out what it is now that he has had the chemo.
Yesterday was a tough day. Anthony was very cranky. He just wanted to be held all day. It doesn't sound that bad, but after awile it gets old. Today he seems better. I guess he has passed the hurdle of feeling yucky after chemo. Sometimes I just wish I knew what he was feeling.
Thanks to everyone that has helped me so far by sponsoring me for the Light the Night Walk that I will be doing on Oct. 16. I really appreciate it. I will include the info for those that are still interested. This is a great cause.
Keep praying for a cure...
Maria
http://www.active.com/donations/fundraise_public.cfm?key=ltnMNucifo
or you can mail your check to me, made out to the leukemia and lymphoma society.
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Friday, September 17, 2004 10:04 AM CDT
Anthony seemed to have tolorated the chemo pretty good. He is still eating like a champ. Usually after chemo he doesn't eat for a couple of days. He is playing like crazy. He is talking all the time, crazy baby talk....I wish I knew what he was saying. Sometimes he sounds so serious.
Thanks to everyone that has helped me so far by sponsoring me for the Light the Night Walk that I will be doing on Oct. 16. I really appreciate it. I will include the info for those that are still interested. This is a great cause.
Keep praying for a cure...
Maria
http://www.active.com/donations/fundraise_public.cfm?key=ltnMNucifo
or you can mail your check to me, made out to the leukemia and lymphoma society.
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Wednesday, September 15, 2004 9:43 PM CDT
We went to the clinic today for chemo. Anthony did really well. The nice part was that we went to King of Prussia, They just open the clinic there. It was so nice and close to home too. At one point we were the only ones there. It was really nice. More importantly, Anthony seems to be tolorating the chemo so far. He is eating like crazy. Usually he loses his appitite for a few days. We will see what tomorrow brings.
Thanks to everyone that has helped me so far by sponsoring me for the Light the Night Walk that I will be doing on Oct. 16. I really appreciate it. I will include the info for those that are still interested. This is a great cause.
Keep praying for a cure...
Maria
http://www.active.com/donations/fundraise_public.cfm?key=ltnMNucifo
or you can mail your check to me, made out to the leukemia and lymphoma society.
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Tuesday, September 14, 2004 4:16 PM CDT
We were back at CHOP today. Anthony had to have a test done. He also saw Dr. Olthoff(surgeon). The drain is still in....It will come out next Thursday. Anthony is going to have more chemo tomorrow. I am just hoping he doesn't get too sick. It is a different type of chemo that he will get.
Thanks to everyone that has helped me so far by sponsoring me. I really appreciate it. I will include the info for those that are still interested. This is a great cause.
Keep praying for a cure...
Maria
http://www.active.com/donations/fundraise_public.cfm?key=ltnMNucifo
or you can mail your check made out to the leukemia and lymphoma society.
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Sunday, September 12, 2004 6:15 PM CDT
We got more good news on Friday. The AFP is down to 43...That is the lowest it has been. We are hoping to get this drain out on Tuesday. We are scheduled for two other tests, then we can start chemo again. I am looking forward to getting all this treatment over with. It will not be over for five more years, but at least the visits will be minimal....
I don't like asking for anything, but this is very important to me....so here goes....
As many of you know 10 years ago I lost my sister to Non-Hodgkins Lymphoma. To honor her and also Anthony... I am going to walk in the Leukemia and Lymphoma society's Light the Night walk. I need sponsors. I have a web site set up that you can use to make your tax deductible donation. Or if you are more comfortable you can send it to me, make checks out to the Leukemia and Lymphoma society.
I would appreciate anything that you can do. This is a very good cause. And having a child with cancer I am trying to do whatever I can to help others, but I need you help. I am begging you to dig deep into your pockets and pull out whatever you can. Every dollar will help and will be appreciated. No amout is too little.
I will put the link to the website and my home address. I am walking on the 16th of October so I will need the donations by then. If you want you can make the donation in Anthony's name.
Thanks so much...
Maria
http://www.active.com/donate/ltnPhilad/ltnMNucifo
Maria Nucifora
124 Village Walk
Exton, Pa 19341
Thursday, September 9, 2004 7:26 PM CDT
Meet Anthony's new friends....We met them in the elevator. He wasn't even afraid of them. I think I was more excited than he was....
We got the pathology report back today. The margins are CLEAN.....yeah....surgery was a success...we are still waiting to get the drain out. It is still draining bile so we have to wait or it could cause more problems...We have to go back on Tuesday. Hopefully it will come out then. We need to have a hearing and kidney test done also. Then he will be able to get the chemo. It may be one or two cycles depending on what the AFP does.
I have a favor to ask of you all....Everyone keeps asking if there is anything you can do, well there is...I am giving two options you can choose which one if any you do...
September is National childhood cancer awareness month..If you could make a donation in Anthony's name to them it would be great. Here is the information on where to send it.
Donate by mail by sending check or money order to N.C.C.S. Attn: Donation Processing, 1015 Locust, Suite 600, St. Louis, MO 63101
Memorial and Honor Gifts
Many gifts to the N.C.C.S. are made in memory or in honor of a loved one or friend. A memorial gift may be given in memory of an individual who has passed away. An Honor gift acknowledges a special occasion such as birthdays, anniversaries, and other significant life events. Often family members, friends, coworkers or civic organizations participate in a group gift. Upon receipt of your gift, we will send a card to the family of the deceased or the honoree designated announcing your gift.
The other way you could help is I am going to walk in the Light the Night Walk for the Lukemia and Lymphoma society. The walk in October 16 at Kerr park in Downingtown. I am looking for people to walk with me as well as sponsors. If you are interested in walking with me let me know and I will give you the details. If you are interested in sponsoring me in the walk you can send your tax deductible check to me made out to the lukemia and lymphoma society.
My address is
124 Village Walk
Exton, Pa 19341
I will need your check before October 16. I really appreciate your help and support.
Thanks so much,
Maria
Tuesday, September 7, 2004 4:02 PM CDT
We finally made it home once again. We still don't know where the fever came from. The tests all came back negative. We were relieved actually. What they thought it might be would have required surgery. He seems to be doing much better. We will go back to the clinic on Thursday and hopefully have the drain taken out. I know Dr. Stern (oncologist) wants it out, so she can start the chemo. He can't have any as long as the drains remain.
Keep praying that the recovery will continue and the chemo will kill any cells that my be hiding.....
Thanks for your continued support...
Maria
Sunday, September 5, 2004 2:37 PM CDT
Well we went home Friday only to come back on Saturday. Anthony woke up with a fever. We had to come back to have him checked out. He had some x-rays, and a CT Scan. What a joy that was. It took them two and a half hours to get him sedated. Everyone was amazed at how much medicine it took to get him to go to sleep. They were concerned that he had an infection in his abdomen. Luckily they didn't find anything. I wasn't looking forward to more surgery. We are staying for observation to be sure that there isn't any problems. As long as he stays fever free today and tomorrow hopefully we will get to go home sometime tomorrow. If he does run a fever I don't know how long we will be here. He is probably going to need a transfusion today. His counts were pretty low. He seems to be doing a little better. He ate some lunch, but is still a little out of it from the sedation.
Hope you all have a great Labor Day....We will be here at hotel du Chop....haha....
Thanks for all the good wishes....
Friday, September 3, 2004 6:02 PM CDT
We finally made it home. With a JP drain in...YUK...it isn't that bad. Anthony seemed to perk up once we got home. He was walking more. We tried to get him to walk around the hospital, but he wanted no part of it. We will go back next Thursday and hopefully get the drain out. It has a little bile in it and they want to make sure that clears up before removing it. If it doesn't clear up they will have to go in surgically and fix it. I am hoping that doesn't happen and they don't feel that it will.
We got his AFP back today it is 94. That is a very good sign. We are still waiting the pathology report. It will take a little while.
Anthony will still need to have two cycles of chemo, but we can't do that until the drain comes out.
Wednesday, September 1, 2004 5:18 PM CDT
Well he finally did it...the great POOPY....yeah..we are now waiting for the doctors to approve food...He looks great and is getting better everyday. It is amazing how well he looks after the hugh surgery he had. I think any adult would still be lying around afraid to move, I know I would. He is jumping up reading to conquer the world.
We are also hoping that they take out both drains...they told us we may have to go home with one of them...I am hoping not..I don't think they really bother him they are just kind of gross..and sometimes they pop open and leak all over...I will have to tape it shut...
He is definatly more himself. Talking and playing...ready to just get the heck out of here....
Tuesday, August 31, 2004 4:39 PM CDT
We had another good day. We got the ok to start drinking...He is still very tired. He sleeps alot, but I guess I would too...He looks great. He was up earlier playing with his new cell phone...He really liked it...I think I got him to smile too...he was playing peek a boo with me too....he would bury his head in the pillow and peek up to see if I was still looking...it was really cute..
Monday, August 30, 2004 9:23 PM CDT
Anthony had a really good day...Almost all the tubes are out..YEAH!!!! Yes I am very squeemish and hated having them in him. He slept alot of today, hopefully he will sleep tonight. I actually got to come home and be with Sal tonight. He was so excited, we didn't tell him I was coming to get him. He had his first day of school today so he couldn't be at the hospital. This is the first night that Sal (dad) is staying at the hospital in the room with Anthony. I can't wait to hear how it goes...
We got moved late this afternoon out of the ICU onto the surgical floor. I can't believe how fast he is recovering. I am just hoping for a bowel movement so that he can start to eat again. The nurse seems to think they may start him tomorrow. I hope so. He must be starving, he hasn't had anything since Thursday eve.
I am going to enjoy a good nights sleep in my own bed...
Thanks for all the good wishes...
Maria
Monday, August 30, 2004 9:57 AM CDT
Anthony is doing amazingly well. I wasn't able to update yesterday, because everytime I tried someone was using the computer. There is only one computer for the parents to use on this floor. We had him out of bed yesterday. He was moving all over the place. I got to hold him last night. Today we will probably be moved down to the surgical floor. I will miss this floor and the constant care. The nurses up here are amazing. They never stop all day or night. We are hoping that things continue to go as planned. Then he will be able to start eating again.
We are on the road to recovery that is for sure....
Saturday, August 28, 2004 8:22 PM CDT
Anthony had a pretty good day. I think they finally got his pain under control. He is resting comfortably. They took out the catheter, now we just have to wait for the drain tube in the belly and the iv in the neck. He really looks good. His coloring is good. It is amazing with all he has gone through. I can't wait to just hold him again. That will be the best day.
Saturday, August 28, 2004 11:03 AM CDT
Anthony is doing great. It took a little while to get his pain under control. He is doing well now. They took out the IV in his hand and hopefully tomorrow they will take out the one in his neck. I hate that one. It just looks nasty. It doesn't help that I have a very weak stomach...He looks great all things considered. He is a real trooper. He is more of hero now than ever...I don't think I could handle all the stuff he has been through. Well here's to a speedy recovery...Thanks to everyone for all your prayers...
maria
Friday, August 27, 2004 5:57 PM CDT
Surgery is OVER...He did really well. They feel like they got all the tumor out. We are very happy. He is in the PICU. He will be here for a few days. They are giving him lots of pain meds to keep him comfortable. He is mostly sleeping. He moves a little and goes back to sleep. He looks good considering what he went through.
Thank you all for your love and support...And here is to a speedy recovery...
Friday, August 27, 2004 10:14 AM CDT
Well surgery has begun. We just got an update that they are in the process of taking out the tumor. That is very good news. We still have a ways to go before they are finished, but I will update again when we are finished. Please pray for a full recovery...I can't believe this day is finally here. We feel like a huge weight has been lifted off our shoulders...We will keep you all posted,,,
Maria and Sal
Thursday, August 26, 2004 2:47 PM CDT
SURGERY UPDATE,,,,,AT 12PM SURGERY WAS CANCELLED FOR TODAY,,,The team had an emergency transplant they had to do. We are going back tomorrow....yes this is just my luck...We are scheduled for 6:30am...Please pray for no more delays...
Thursday, August 26, 2004 5:05 AM CDT
UPDATE ON SURGERY.....We just got a call as we were heading out that surgery has been pushed back to noon...Just wanted you all to know....Thanks so much
Wednesday, August 25, 2004 8:12 PM CDT
Tomorrow is the big day. We have to be at the hospital at 7am...surgery should be around 8-8:30. I can't believe it is finally here.We are looking forward to it being over....I will update as soon as I can after surgery. Thanks again for all your love and support....Keep the prayers coming...
Maria and Sal
Monday, August 23, 2004 10:33 PM CDT
We went today and had blood work done. It was nice to go to king of prussia instead of all the down to chop. I think it took all of about fifteen minutes and out the door we went. I am not used to such quick visits. Well that is the last thing needed before the big day...We are three days away...Yes I am counting down. I cannot wait to get this monster out of my baby. Please continue to pray....I will know the time of surgery on Wed afternoon. I will post it when I find out. I will try to update as soon as I can after surgery. THANKS again for all your love, support and prayers....
Sunday, August 22, 2004 6:57 PM CDT
We are just four days away from the big day...We have to go get some blood work done tomorrow. Anthony is doing great.
We are looking forward to getting this monster out of his body. We are very confident that the surgeons will be able to do this. I am just praying for an easy recovery.
Please keep sending your prayers...
Thursday, August 19, 2004 9:18 PM CDT
We met with the surgeon today. His name is Dr. Shaked, he along with Dr. Olthoff will be doing the surgery next week. It is very hard to describe all that we discussed. I will say that we feel alot better after meeting him. I can tell that he is amazing in the OR. We just got that feeling. He went over the scans with us and explained exactly what he was going to do. I could tell that he is a perfectionist when he operates.
That said this is still a very tricky surgery. It is going to be very difficult. He said the first hour will be exploring to see exactley what they are dealing with. Scans only show so much.
Is there a chance that he will get in there and realize that he can't do the surgery, yes...then he would close him up and we would continue testing for the donor to do a transplant. Does he feel that he will have to go that root...no, but as he said there are no guareentees....We just have to hope and pray that he is able to do the surgery successful. I do feel that Anthony has the best surgeons. They are known internationally.
The surgery will probably take four to five hours. He will be in the PICU for about two or three days then moved to the surgical floor for the rest of the time. He thinks he will be there for about a week or so....It all depends on how Anthony responds to the surgery.
The good thing about this is that he just did one of these surgeries about two weeks ago. This is VERY rare, so there isn't alot of them being performed.
Please just keep praying....Thanks...
Maria
Monday, August 16, 2004 11:33 PM CDT
I spoke with Dr. Rosenblum today. She was Anthony's pediatritian before all this happened. She had called on of my doctors down at CHOP. She gave me some very good info on the surgeons that will be doing the surgery. Dr.Olthoff and Dr. Shaked are very well known around the world and do more of these surgeries then any of the other doctors whose names came up when thinking of a second opinion. Also she felt that they would not attempt it if they weren't 100% positive they could do it and get it all out. I felt very good after getting off the phone with her. Sal and I will meet with them on Thursday. Then we will know the specifics of the surgery.
Please just pray for a successful resection and easy recovery...Thanks so much
Sunday, August 15, 2004 7:19 PM CDT
It has been a quiet weekend. Anthony is very active and loves playing with his big brother.
We are trying to prepare ourselves for the surgery that will take place on the 26th. I still can't believe that it is finally happening.
I mentioned in my last entry about the soda tabs...you can send them to the Ronald McDonald house or get them to me and I will take them with me to the clinic. I can leave them there and they get them over to Ronald..Thanks so much,,,
Keep praying...
Thursday, August 12, 2004 10:37 PM CDT
We got some good news today. Dr. Olthoff along with another surgeon feel like at this point they can get the tumor out without having to do a transplant. They reviewed the scans together and feel very confident that they can do this. We have scheduled the surgery for August 26. We are just two weeks away from getting this monster out of my baby. He had a CT scan today and the lungs are still clear. Dr. Stern felt with the afp rising they may have returned.
We have decided to cancel the appointment in NY. We are much more comfortable being at CHOP. I was not looking forward to being that far away from home with such a major surgery. But I would have done it if I felt it the best option for Anthony. There is another family at CHOP whose child just had the same surgery by the same doctors. They are going to try to get us together so we can talk. I am feeling much better now that I have the surgery scheduled.
Please pray that the surgery is a success and that Anthony recovers with little complications.
For all you soda drinkers out there. You know that little tab that you pull back to open the can...When you are finished please pull the tab off and save them. They make alot of money to help the Ronald McDonald houses the huge success that they are. I also have to thank my nephew Steven, his camp had a lemonade stand today and raised $400 for cancer research at Chop. He was so excited to tell me all about it. Also to my brother Steve....How do I even begin to say Thanks for all you did to find out if you were a match....We are very grateful and thankful that we do not have to go down that path....
Thanks to everyone for all your love, support and prayers during the most difficult time in our lives...
Please keep praying....
Maria and Sal
Wednesday, August 11, 2004 1:30 PM CDT
Anthony's counts came back up and we finally got ot come home. It is amazing what a little bit of blood will do for you. He is doing much better. He will have his CT Scan tomorrow, and also meet with Dr.Stern.
On Tuesday we will be heading up to NY to meet with a surgeon at Sloan Kettering. Wish us luck,,,neither one of us has ever driven to or in NYC before. I at least have been there before. I am sure it will be fine once we get there.
Keep praying....and thanks for all your good wishes...
Maria
Monday, August 9, 2004 9:11 PM CDT
Well we are still here. Anthony's counts fell even lower today. He had a transfusion and seemed much better after. We are here until his counts stabilize. I am hoping between the transfusion and the anti-biotics they will be better tomorrow. I am not sure how fast they recover. I haven't encountered this yet. I was just shocked at how fast they dropped. All in all he had a pretty good day. He is such a trooper. I am just hoping that the AFP starts to fall. I just can't understand how the chemo is making his counts drop and his hair fall out, yet the AFP is going up. How is it working everywhere except where it should be. We will know better after the CT scan on Thursday. I am going to ask if we can do it while we are here. I am hoping to get it done asap. Keep up your prayers ....thanks so much...
Sunday, August 8, 2004 8:06 PM CDT
Anthony was sluggish most of the weekend. So on Sunday I called the hospital and they told me his counts may be dropping. I brought him in to check them and his ANC was very low. They began anti-biotics and told us we were staying. The ANC being low prevents his body from fighting infection. He also has a rash all over that they believe to be rosiola(spell??). After they gave him some fluids and began the anti-biotics he seemed to feel much better. He was more like himself. I am not sure how long they are going to keep him. I am hoping to go home tomorrow, but we have to wait and see where his counts are. Please keep praying...Thanks
Friday, August 6, 2004 1:37 PM CDT
We got the news we didn't want....AFP went up to 450. They are not sure why. We are scheduled for a CT scan on Thursday and that will tell us more. Dr. Stern is thinking the spots on the lungs may be coming back. We won't know until the scan is done. There are so many uncertainties right now. We don't know about the surgery or what the next step is yet.
Sal and I have decided to go up to Sloan Kettering in NY, We have an appointment on the 17th. We are meeting with a surgeon that specializes in these kind of tumors. I am just hoping that it all works out. I just can't believe that this is happening to our little baby. Please keep up your prayers....Thanks
Thursday, August 5, 2004 5:52 PM CDT
It has been an exciting couple of days. We had to go to the hospital on Wednesday for a fever. Yes the dreaded fever. It was 102.5 by the time we got to down there. We can't give any tylenol until they draw the culture to make sure he doesn't have an infection. The tylenol helped to bring it down. We saw the doctor today and the fever was gone. We don't have a definite answer about surgery yet. We have to wait to see if his AFP has come down. We also need to wait until my brother meets with the surgeon on Monday. We should have a definate answer by then. Otherwise Anthony is doing good.
Please keep praying....Thanks so much
Monday, August 2, 2004 7:39 PM CDT
We got some good news today. So far all the blood work for my brother has come back good. He is going on Wednesday to have some more tests done. I hope we get the same results from these as we did for the blood.
Please join me in saying a special prayer for Little Alex and her family. She lost her battle with cancer yesterday. She is the little girl that started the lemonade stands. She raised an incredible amount of money for children's cancer research.
Thanks so much...
Sunday, August 1, 2004 10:25 AM CDT
We have had an uneventful weekend. We did hear from the doc on Friday. AFP has com down to 264. It is not much, but Dr. Stern didn't think it would come down much the first week. Next week it should be down even more. That means this chemo is working.
Thanks to all you for your prayers they are working. Keep it up......
Thursday, July 29, 2004 8:59 PM CDT
We went to clinic today. It was a quick visit, because Anthony didn't need to have a tranfusion. YEAH!!!! We have to do the last four shots and then we are done with them. I can't wait. I hate doing them.
So far the results from my brother are good. Not all of the tests have come back yet. That is a big relief. Now we just have to wait until the rest of his tests come back and for Anthony's AFP, I am hoping that the number is lower this week. Then we can do the surgery sooner rather than later. I just can't wait to get this monster out of him.
We had a good night tonight. We went to the Kimberton fair. It was nice to get out and forget about things for a while.
Please keep praying that his AFP goes down...Thanks
Tuesday, July 27, 2004 8:56 PM CDT
It has been a quiet couple of days. Anthony is doing great. He is handling the shots so far. My brother went on Monday to begin the testing to see if he is a match. We haven't heard anything yet. The surgeon is supposed to come over to meet me in the clinic on Thursday. I am hoping that he will be ok, but the doctor thinks he is going to need a transfusion on Thursday. I am hoping that he doesn't. It is so hard to keep him occupied for two hours while he is receiving the blood. Thank you to all for all your prayers and warm wishes.
Sunday, July 25, 2004 6:59 PM CDT
We made it through the first two shots. Tonight we are on our own. Anthony is doing great. He seems to be tolorating this chemo very well. I am just praying that it is doing what it is supposed to be doing. My brother is going tomorrow to get tested to see if he is a match.
Please pray that this all works and the AFP comes down.
Thanks...
Friday, July 23, 2004 12:30 AM CDT
I just wanted to add to yesterday's update. Anthony doesn't need vessels, he needs part of a liver. I don't think I made myself clear. I was drained when I wrote that entry. They can take part of the donor's liver and transplant it into Anthony. The part that is taken from the donor will regenerate itself. There is also the chance that when they get in there they won't even need to do the transplant. She just wants to have that backup option.
The AFP is rising, it was down to 49 and is up to 274. Please pray that this chemo brings it back down. That number is the tumor marker and the fact that it is rising means there is the chance that the tumor is growing. I am trying really hard to stay positve here and hope that the next two weeks shows that is working. He will be scanned again in August, but if the AFP doesn't drop we will have to do another cycle of chemo.
We also have to start the shots today. We are waiting for them to arrive and also the nurse. She will help us today and tomorrow and then we are on our own. They will help to restore his counts a little faster. With all the chemo he has received it makes his immune system weaken, the shots will help to strenghten it. Sorry I am not a nurse or doctor so I am not explaining this stuff as well as I should.
PLEASE KEEP PRAYING FOR OUR LITTLE ANGEL...
Thursday, July 22, 2004 6:27 PM CDT
We just got home from the hospital. Anthony's counts were up so he was able to get his chemo. He is doing well. We met with the surgeon today. It looks as if the surgery is going to be very difficult. She was able to explain it very well. If they can get all the tumor they are going to have to take most of the major blood vessels, because of the location. She also would like to have a live donor ready and waiting in case it is needed. The problem is that after they get in there they may find that they can't leave Anthony with enough liver for him to survive on his own. Having a live donor waiting gives her the freedom to take what she needs. If we can't find one she will do the surgery and just not be as aggressive. There is a chance that if she wouldn't be able to leave enough for him to survive she would just close him up and not finish the surgery. This is all very scary for us. I hate asking for anything, but if anyone is or knows anyone that is 18-40 yrs old and is willing to get tested, please call me or have that person call me. My brother just told me that he is willing to get tested, but is it always good to have more than one volunteer. Sal and I would greatly appreciate anyone that is willing. We know it is a HUGH favor to ask of anyone, but we really don't have a choice. Please say an extra prayer for Anthony tonight. Thanks so much.
Wednesday, July 21, 2004 9:10 PM CDT
I am sorry that I haven't updated lately. There isn't much to tell. Thursday we are off to clinic. I hope Anthony's counts are up so he can receive the chemo. We are also meeting with the surgeons to talk about have the tumor removed. Please pray that it is able to be taken out. I also am scheduled to learn how to give Anthony the shots. At this point I feel like I should have gone to school for nursing. Pray that I am able to give them. I don't have the strongest stomach for these things. And God knows Sal isn't going to give them. He is even worse than me.
Anthony otherwise known as distructo baby...is doing just fine. The more stuff he can get into the better. I will update sometime Thursday evening....Keep the prayers coming.
Monday, July 19, 2004 0:51 AM CDT
We had a very busy weekend. Visiting with family and friends. Anthony just loves all the attention. He is such a little ham.
I am feeling better about the shots (not giving them) just what they are for and how they work. Thanks Brenda for taking the time to explain it to me. She was wonderful. She is an oncology nurse. So she was able to take the time to talk to me about how they are done and why. I will understand better on Thursday when they teach us about them. I am anxious to meet with the surgical team to find out about the surgery. I am also nervous about this new chemo. I am told it is not much worse than what he has already had. It is just that his little body has already had so much of the other stuff. That is why his counts are down a bit. Hopefully they will be better this week. He is definatley not lacking in the active department. Or the eating and drinking dept. On Saturday his cousin Steven was here. He was having a hotdog for lunch. He turned around and when he went back for the hotdog, Anthony had taken it and started eating it. It was pretty funny and very unexpected. Tonight he couldn't shove enough popcorn in his little mouth. Thanks Aunt Teri for the new popcorn popper. Anthony just loves it.
Please keep the prayers coming...Thanks
Friday, July 16, 2004 9:34 PM CDT
Well it looks like I am going to have to give Anthony shots starting next week. I will be taught how to do it on Thursday. I just can't wait...They said they could send someone out on Friday to help out. Isn't that nice of them? I am hoping that he won't need them.
He is walking much more. And still into everything. I will keep updating as I know more. Please keep praying...
Thursday, July 15, 2004 9:22 PM CDT
We went to clinic today, unfortunatly Anthony's counts were down so we couldn't get the chemo. We have to wait for them to come back up. We are hoping for next Thursday. This is something we knew could happen, we have just been lucky so far. I knew this was going to happen. I was just hoping it wouldn't. We didn't meet with the surgeons either. We were scheduled to meet with them around 3pm. We found out he wasn't getting chemo around 11:30. We really didn't want to hang out that long with nothing to do. We are going to meet next week.
Anthony is doing well. He is all over the place. Tonight he was sitting up on the desk watching Dad on the computer. It was really cute..A kodak moment, I was just too slow to get the picture. Keep up the prayers,,,Thanks
Wednesday, July 14, 2004 9:02 PM CDT
We are going to go ahead and have more chemo Thursday. We are going to meet with the surgeon while we are there. She is going to explain the surgery with us. It probably won't happen for a few weeks. Anthony needs to recover from the chemo he will receive tomorrow. He is feeling good and still very active...I am anxious to talk to the surgeon tomorrow. Keep the prayers coming...Thanks
Tuesday, July 13, 2004 12:20 AM CDT
Well I heard from the doctor today. The liver transplant team feel like they can get the tumor out. They are going to do it with a differt approach then they usually take. I am waiting to find out when they want to do it, or if we will do one more cycle of chemo before surgery. This is all very confusing. I don't have all the answers and I won't until I meet with the surgical team. I don't know when that will be. Hopefully tomorrow when I hear from the doc. Just keep praying...Thanks
Sunday, July 11, 2004 11:14 AM CDT
The benedryl worked after just two doses the hives are gone. Anthony had a good weekend. I still don't have any definite answers about surgery. The surgeon is going to meet with one of the transplant surgeons tomorrow. We are not looking at a transplant at this time. They are more expierenced in working around the vessels. If they don't meet tomorrow the entire team will meet on Friday to dicuss Anthony. We are going to have an echocardiogram and and ekg tomorrow. Just in case he needs to have more chemo. We are going to switch to a different type. We don't have to be hospitalized for this one. I will keep updated as I have info. Thanks and keep praying...
Thursday, July 8, 2004 10:03 PM CDT
Yesterday Anthony woke up from his afternoon nap with hives on his face. I called the doctor and they said to just keep an eye on it. When he woke up this morning it had spread to his arms and legs. I had an early appointment for a CT Scan so I figured I would just go down. The nurses were a little concerned, but we got the ok to do the test. When we went over to clinic I think he stumped everyone. It was definatley hives, but we can't figure out where they came from. He hasn't had anything new in the last few days. Well he got some benedryl and it seemed to almost disappear. We are going to keep up with the benedryl until tomorrow. As far as the CT scan goes...I still don't have any answers. The surgeon was in the OR all day. I am hoping to hear something tomorrow. If the tumor didn't pull away enough for surgery we are going to try a different chemo. We will not have to hospitalized for this one. I just have to go into the clinic and it will be given there. It takes six hours, but it is only one drug and one day. Not that I am looking forward to sitting in the clinic for six hours, but if that is what it takes I will do it. I have not given up hope yet that it is small enough to get out. I will pray all night. I hope the big guy hears me and hopefully will answer my prayers, as well as all of yours. Anthony seems to be feeling better. He still has the cough, but we all know how long that could last. I will update as soon as I hear something.
Thanks for all your support and prayers.
Monday, July 5, 2004 10:21 PM CDT
What a weekend.I hope you all had a happy fourth....Anthony was really sick. I called the hospital five times on Sunday. He was just laying around, coughing and sneezing...Finally the Doc gave me the ok to give him cold medicine. It helped a little. He was a little better today. He played a little and smiled even though you could see in his face that he just didn't feel good. I am hoping that he will be much better tomorrow.
He is having a CT Scan on Thursday than the final chemo for round five. I am not sure where we will be next week yet. I am hoping the tumor shrunk enough that he can have sugery, but I am not sure. We may have to begin round six on Monday. I will know more on Thursday. Please keep praying....Thanks..
Saturday, July 3, 2004 9:23 PM CDT
They let us come home Friday afternoon. We had to wait 24 hours after the culture was done to be sure there wasn't any infection. Luckily ther wasn't. Anthony is still not feeling well. He is coughing and has a runny nose. We are just trying to get lots of fluids in him. Luckily he is still drinking. He was pretty active today. We are staying low key this weekend to help get him better. Hope you all have a great fourth...Luckily we got to see some fireworks the were set of at the Phillies game on Thursday night from our hospital room. They were really pretty. Don't know if we will get out to see any tomorrow or not...Have a great weekend. Keep praying...
Thursday, July 1, 2004 8:38 PM CDT
Well it finally happened...after five rounds of chemo Anthony bought us an overnight stay at CHOP. He woke up Thursday with a fever. It was 101.1. We had an appointment for more chemo so we just came down at our arranged time. He some anti-biotics and I thought we were going to get to go home. The Dr. didn't like the way Anthony was looking so here we are. I am hoping we will get to go home in the morning. It all depends on how he looks and if the culture that was drawn comes back negative. They finally gave him tylenol and that seemed to help. He started to perk up a little bit. I am hoping this is just a 24 hour thing and he will be back to his happy self in the morning....Please keep praying...
Wednesday, June 30, 2004 10:40 PM CDT
Anthony is doing fine. We are off to clinic Thursday. He has such a good sense of humor. He love to chat on the phone...HMMMM....wonder where he gets that from...He looks so cute when he does it too....Hopefully I will have some more news tomorrow after meeting with his doctor....Keep the prayers coming...Thanks
Sunday, June 27, 2004 10:34 PM CDT
We had a really good weekend. Anthony is all over the place. He started to say Salby....big brother is very proud.
Just to clarify....His port didn't come out it was the needle that came out. His port is fine. I think part of the problem was that they had to use a larger needle, because of the swelling. The swelling has all gone down now. I am sure on Thursday when the access it He will be fine.
Please keep praying that the tumor pulls away from the vessels. Thanks so much.
Friday, June 25, 2004 9:41 AM CDT
We finally made it home. Anthony is such a trooper. While waiting for his chemo yesterday, his port came out again. They didn't feel comfortable re-accessing it and giving chemo through it. They had an iv put in his hand so he could get the chemo. I felt so bad. I couldn't handle holding him down again, so I let the nurses do it this time. I felt like such a wimp...I just couldn't stand there and listen to him scream. It is not that it hurts, he just hates being held down. Not like I could blame him. After they got done and hooked him up he fell asleep on me, until the chemo was done. This one takes about an hour. I never got him dressed and out of there so fast. I just couldn't wait to get home. He seemed so much calmer once we got home. He even took a bottle which he didn't do the entire time we were in the hospital.
We have a CT Scan on July 8th. I am praying that it has shrunk enough to get it out. The problem is it is right up against the major blood vessels that supply blood to the liver. We are hoping that it pulls away enough to get it out.
Keep praying,,,,thanks
Wednesday, June 23, 2004 9:19 PM CDT
Anthony responded pretty well to the chemo so far. He isn't drinking much so we are keeping him hydrated with iv fluids. He had a rough day. His port came out and it took three tries to get it back in. Then later in the day they were giving him is anti-nausea meds and the line became unhooked. Since it had hit the floor they had to take the port out again and re-access him. At least it only took one time. He also had a transfusion today. He is sound asleep now. I think before his head hit the pillow. Even through all the stuff today he was pleasant. He is just amazing. We are scheduled to have another CT Scan on July 8th.....Please pray that it shrunk enough to get the tumor out. Thanks again for all your support and prayers. We really appreciate everything.
Tuesday, June 22, 2004 3:17 PM CDT
We are here at the hospital and Anthony is receiving his chemo. He is very active,,,all over the place. He is taking more steps now. I know one of these days he is going to figure out that he can walk. I can't even imagine what that is going to be like. He is all over the place now. We don't really know anything else. They are hoping that this round will shrink it enough that it can be removed. Please keep praying..Say a few extra for him. Thanks so much.
Monday, June 21, 2004 5:39 PM CDT
I talked to the doctor. At this time it is not able to be removed. We will be admitted tomorrow for more chemo. He will have a scan at the end of this round and hopefully it will be able to be removed at that time. Anthony is doing fine, he is playing and getting into everything.
Please keep praying...
Monday, June 21, 2004 12:27 AM CDT
I just wanted to let you all know that we still don't know anything. We are waiting for the surgeon to call and let us know if they feel it is able to be removed. I will update the website as soon as I hear something.
Anthony is doing fine. He had a good weekend. Please keep praying....
Thursday, June 17, 2004 10:20 PM CDT
We went to the hospital today. Anthony had his CT scan and final chemo for round four. He also had a hearing test. He had to be sedated for the ct scan. They first gave him something to relax him. The nurse told him it was giggle juice. It was soooo cute, because he just started giggling. We just looked at him and he would giggle.
The hearing test was really good. The tech didn't feel he has had any loss at this point.
I couldn't wait to see the results of the ct scan. The tumor did shrink some more, but it is right in the middle of the liver. The surgeon is going to meet with other surgeons tomorrow (friday) to see if they think it can be removed. We also need to go back on Monday to check counts to see if he needs a transfusion. He was at 8.2. The doctor would like to see it closer to 10. Especially if he is ready for surgery. I am on pins and needles right now. I don't like this waiting. Everything was going so smoothly I was positive surgery would take place next week. IF the surgeons don't feel that it can be safely removed we will be admitted on Monday to begin another round. I will not let the phone out of my sight tomorrow. I can't wait to hear from them. I feel like we are starting all over now. I am really trying to keep positive, but I am having a really hard time......PLEASE KEEP PRAYING....SAY AN EXTRA ONE TODAY....THANKS
Tuesday, June 15, 2004 7:47 PM CDT
We went to the hospital yesterday for the GFR test. It checks the function of the kidneys. It is a long test, but he was a trooper. We were able to visit with Aunt Dolores, Danielle and Michael who were there with Anthony.(Their son) He had to have surgery. He is doing well. It was nice to see them and have someone to talk to while waiting. Thursday will be another long day. We have the CT scan and the final chemo of round four. Hopefully we will also know when Anthony's surgery will take place.I can't believe we are at this point already. It really has gone by fast. It seems like yesterday we found out about the tumor. Your prayers have helped us get through this. Keep praying...Thanks
Sunday, June 13, 2004 2:41 PM CDT
We had a pretty quiet weekend. Anthony has been eating like crazy. There is no stopping him. I am not complaining though. Tomorrow we are down at CHOP. Anthony has to have a test done. Then again on Thursday. We have the CT scan and chemo and a hearing test. It is going to be a long day. Just keep praying that the tumor is resectable at this time. Otherwise it is back to begin another round on Monday. I just know that isn't going to happen. Thanks for all your support and prayers during this difficult time.
Thursday, June 10, 2004 4:23 PM CDT
We went to clinic today. Anthony's counts are good. His AFP is down to 182. He got his chemo today. Monday he needs to have a GFR test done. That is to make sure his kidney's are functioning properly. Thursday we have a CT scan and a hearing test scheduled. He will also have his final dose of chemo for this round. If the tumor is able to be removed that will be done the following week. If it is not we will begin another round on Monday June 21. I just know that it will be able to be removed so I am not even thinking about the chemo. Please keep praying. Anthony is doing wonderful....And he took a few steps today while we were waiting for the doctor....I know it will be any day now he will be walking...
Tuesday, June 8, 2004 7:19 AM CDT
Anthony had a really good day yesterday. Last night he was playing with Sal, they were laughing like crazy. It was so cute. I love to hear him laugh. It is amazing that with all the stuff they are putting in his little body that he is able to still laugh and have fun. They told me when this all happened how resiliant kids are,,,I thought they were just feeding me line to make me feel better. It is true...We have clinic on Thursday for more chemo and hopefully I will know about the surgey then...Please keep praying....
Sunday, June 6, 2004 8:22 PM CDT
Anthony had a good weekend. He is eating much better. Today has been his best day. He was more like himself. We are keeping him very low-key until he can have his surgery. We don't want to take any chances of him getting sick. Keep praying that they will be able to remove what is left of the tumor. Hopefully I will know when that will be on Thursday. Thanks for all your prayers and support.
Friday, June 4, 2004 6:52 AM CDT
After three LONG days we are home again. Anthony had to have a transfusion yesterday. His counts were down after the chemo on Tuesday. He is doing good. He had a good night on Wednesday. We got into a private room and he slept all night. I am sure he felt better after getting a good night sleep. I know I did. Thirteen days until the big CT Scan. I am hoping it will be small enough that it will be able to be removed. Please pray that it will be...I know all our prayers have been answered so far, so I am hoping this one will too....Thanks....
Wednesday, June 2, 2004 9:42 PM CDT
Well we were admitted yesterday to begin round four...Everything was going well until about one in the morning when I got woken up to tell me I was getting a roommate. For those of you who know me well you know I wasn't too happy. I am not comfortable sleeping in the same room with strangers. Well Anthony woke up about two am and was up until about five thirity. Needless to say it was a very long night and day. I begged and begged and finally they got me into my own room. Now Anthony is asleep and hopefully he will stay that way all night....YEAH...He did get sick today from the wonderful chemo. But I guess I shouldn't complain about that since it is working to kill his tumor. He got his anti-nausea meds and is fine now. Tomorrow he will receive more chemo then we get to go home. Hopefully no more nausea. I feel so helpless when he doesn't feel good. He got to visit with his big brother tonight which was a nice treat. I miss not seeing Sal when we are here. School will be done soon and we will be able to spend more time together. He is feeling much better. The sore throat is gone and he has his voice back.
Keep praying that we get good news on June 17th....the CT Scan day...Hopefully the tumor will be small enough that it can be taken out...Thanks for all your support and prayers.
Monday, May 31, 2004 10:48 AM CDT
We had a very quiet weekend. Anthony was very active. He is really trying to walk. Getting more stable everyday. We are going to be admitted tomorrow for the beginning of round four. I can't beleive we are here already. Hope you all have a good memorial day...Keep praying..
Saturday, May 29, 2004 11:28 AM CDT
Anthony had a good day yesterday. He was happy and playing. He likes when Sal comes home from school, because he makes him laugh. He sounds so cute when he giggles. Anthony loves to talk on the phone. He must get that from me. Uncle Steve and cousin Steven are here, he likes playing with them. Steven thinks he is a cool baby. I do too...haha....Hope you all have a great Memorial day..
Keep praying...
Thursday, May 27, 2004 5:28 PM CDT
We went to clinic today. Anthony received the last Vincristine for round three. We will begin round four on Tuesday. We will be at the hospital until Thursday. His counts are down a little so it will be a low key weekend. I don’t want to do anything to delay beginning round four. He gained a little weight. I was happy to see that since he will lose a little with the Cisplatin that he will receive on Tuesday.
Keep praying…
Wednesday, May 26, 2004 6:04 AM CDT
Anthony is still doing great. I think anyday now he will be walking. He is really trying. No news on big brother yet. So far all the tests have come back negative. I think he is starting to feel a little better. Tomorrow we are back to clinic to end round three. Tuesday we will begin round four. I don't know where the time has gone. I just keep looking ahead and try not to look back. Have a great day...
Keep praying...
Tuesday, May 25, 2004 6:55 AM CDT
Sal stayed home from school yesterday. He still has the sore throat and now the runny nose. He was up most of Sunday night not able to sleep. Finally I gave him Benedryl and he fell asleep. We went back to the Dr's yesterday. He did another throat culture after five minutes it was negative. He then sent us to have have some blood work done. He thinks it might be Mono....I hope not...I am hoping the test for strep comes back positive overnight. I think Anthony was happy that his brother was the one being poked and prodded and not him..There is never a dull moment...He had a good day yesterday. We go back to clinic on Thursday for the final Vincristine of round three...YEAH!!!
Keep praying...
Sunday, May 23, 2004 10:26 PM CDT
We had a good weekend. Anthony is doing great. He took a half of a step on Saturday. He is really trying. The Vincristine causes some numbness in the hands and feet. I think that is why he is a little unstable, but getting better everyday. Do I really want him to walk???? I am not sure. Haha We go back to clinic on Thursday for the final dose of vincristine of round four. We will be re-admitted on Tuesday to begin round three. I can’t believe we are almost into round four. We have a CT Scan schedule for June 17. That is the end of round four. What a perfect birthday present for me. I am praying the tumor is small enough to remove. If it is they will do it the following week.
Keep praying….
Friday, May 21, 2004 8:09 PM CDT
Good News.....No Transfusion today....I took Anthony this morning his count was 9.5. YEAH!!!! Another prayer answered. He is doing so well. He is trying so hard to walk...one of these days he is going to take off...I don't know if I am ready for that.
Keep praying...
Thursday, May 20, 2004 2:33 PM CDT
We just got home from the clinic. Anthony is doing well, but he may need another transfusion. I have to have blood work done in the morning to see where his counts are. They were not low enough today, but may drop by tomorrow. With any luck they will go up and he won’t need to get transfused again. He received his chemo and is doing fine. He is napping now. Keep praying….
Wednesday, May 19, 2004 6:50 AM CDT
Anthony had another good day. He is so active. I forgot what it was like to have a one year old. He is into everything. His new thing is climbing. He climbs onto everything. It is amazing how he pulls himself up on things. He has mastered getting on the sofa by himself. He is very proud of his accomplishments.
We go back to clinic on Thursday for Complete Blood Count and more chemo.
Keep praying
Monday, May 17, 2004 11:35 AM CDT
Anthony is doing so well. He is eating and drinking like his usual self. He tends to not eat as much after beginning a round. The chemo that he receives in the beginning is the one that really effects his eating. I just try all day to offer different things. I am happy for every bite I get out of him. I do not want to end up with him having a feeding tube. He is more like himself today getting into everything. He is like a little monkey.
Keep up the prayers….
Saturday, May 15, 2004 3:32 PM CDT
Anthony is doing well. The latest picture was taken at the hospital. He liked to climb into the cabinet. I thought it would make a cute picture. As you can see he is in good spirits even while receiving chemo.
LET’S GO FLYERS….
Anthony is cheering them on to victory….
Keep praying…
Thursday, May 13, 2004 12:27 AM CDT
Anthony had a really good night. He slept well with no one to bother him. He is happy and more like himself today. He is eating better. We are just hanging out and relaxing after three long days in the hospital. I love hanging out with him. He is so cute and does the funniest things. Yesterday at the hospital he took the nurses stethoscope and put it around his neck like they do. He smiled very proud of his accomplishment. It was so cute. He is an amazing baby. I know I keep saying that, but I can't believe how well he is taking all this. I believe that prayer is a powerful thing and Anthony is proof of that. I don't think he would be doing well without all the prayers being said for him. Thank you all for that.
Keep praying,,,,
Wednesday, May 12, 2004 6:00 PM CDT
Anthony had more chemo today. His counts are still good. His AFP is down to 2600. I cannot believe how well he is responding to all this treatment. He seems calmer now that we are home. He doesn’t have his appetite back yet. I am hoping by tomorrow he will have it back. Sal (brother) isn’t feeling great. I had to take him to the doctor when we got home today. He has swollen glands and a sore throat. I am waiting for the results of his culture to come back. I am hoping he doesn’t have strep. It is going around though. There is never a dull moment.
Keep praying and keep smiling :)
Tuesday, May 11, 2004 5:05 PM CDT
Anthony responded well so far to the chemo he got yesterday. Today is just hanging around and getting hydrated. He will receive more chemo tomorrow and then we can go home. Alot can be said for being at home. It is so hard for him to sleep here. It is very noisy. We are looking forward to a quite night.
Keep praying and keep smiling....
Monday, May 10, 2004 8:09 PM CDT
Anthony had a pretty good day today. We had to be here at the hospital at 9:30am. He needed to be hydrated before his treatment. His counts are very good. He received his chemo and is doing very well. He is finally sleeping. It was a very long day. We didn't get into a room until almost 5pm. We got delayed a bit at the clinic, because they had a fire scare and we had to evacuate. What a treat that was. Luckily it didn't take very long. It was interesting though. I felt like I was in a movie. The nurses even said after being here for twenty years it had never happened before. Never a dull moment...Just what we needed. A little more excitement. Tomorrow Anthony just has to be hydrated, so it should be a pretty boring day. (sorry for any typos I didn't have access to word so they could check it for me.)
Keep Praying.....IT is working
Sunday, May 9, 2004 8:36 AM CDT
HAPPY MOTHER’S DAY
We are getting ready to be admitted tomorrow to begin round three. I can’t believe we are into round three already. Anthony is doing so well. I am so proud of him. He had a really good day yesterday. He has discovered that he has teeth, yes that means he is biting everything and everyone.
Keep praying….
Friday, May 7, 2004 8:34 PM CDT
Anthony is doing great. He had a really good day. He is really trying to stand without any support. He likes to walk while holding my hands. He is such a happy little baby. I love to make him laugh. He just looks so cute. He is developing a very cute personality.
Thursday, May 6, 2004 1:21 PM CDT
Anthony had his CT Scan today. We got really good news. The spots on his lungs are GONE!!!!! We are so happy. All your prayers are working. The tumor is also much smaller. We are going to continue with the plan of four rounds. We will be admitted Monday to begin round three. I am so happy that this is all going so smooth. Anthony is amazing. He is my hero. He is such a happy baby. His big smile helps us get through each day. Big brother Sal is also amazing. He really helps us with all of Anthony’s care. He gives him his medicine sometimes and loves to play with him. He gives the medicine better than I do. Thanks for all your prayers. Keep praying for Uncle Bobby, and if I may ask could you please pray for a little girl names Sarah (I know I spelled it wrong, I am not sure how she spells it.) She is a five year old little girl (My pediatrician’s granddaughter.) She needs your prayers also. Thanks so much
Sunday, May 2, 2004 11:40 AM CDT
Anthony has been doing really well since the blood transfusion and the chemo on Thursday. He is playing and eating really well. This week Anthony has his first CT Scan since beginning chemo. Please pray the few marks on his lungs are gone. We know the tumor is shrinking, but we won’t know about the lungs until after the scan.
I have had a lot of people ask me “Is he playing? Is he acting like himself?”
Yes to both questions. If you could see him at home you would never know anything was wrong. He is a very active one year old. Developmentally he is doing great. He isn’t walking yet, but he is close. He is cruising and if you hold his hands he will walk with you. I have been trying to get him to stand on his own, but he is a little wobbly. He keeps grabbing for the mouse as I am trying to type this so I need to end it now…Thanks for all your prayers…..Keep praying for Uncle Bobby.
Thursday, April 29, 2004 6:28 PM CDT
Hi Everyone,
Sorry I haven’t updated the website in a few days, there was really nothing to report. We had a few very quiet days. We went to the clinic today. Anthony’s counts were better. His hemoglobin was at 8.1 so he needed to get a blood transfusion. He also received his chemo that he was scheduled to receive. He is such a trooper. We had to be at the hospital at 8:15 this morning and didn’t leave until 6pm tonight. He was so good, until the last hour of the transfusion. He just wanted me to hold him the whole time. I am not complaining except I had to stand up. When I tried to sit he cried, and I didn’t want to disturb the other patients. Twenty pounds get heavy after a while. Dr. Stern measured the tumor and it is a lot smaller than two weeks ago. I am so happy that this is going so well.
He is very happy to be home. He is playing with Daddy. I am looking forward to a good nights sleep. I just hope Anthony is too….Keep praying for Ant and Uncle Bobby…
Thanks
Monday, April 26, 2004 6:53 PM CDT
We went to the clinic today. Anthony’s counts are down a little bit. That is to be expected. They will do another count on Thursday. If his hemoglobin does not go up then he will need to get a blood transfusion. He will have a GFR test, also on Thursday. That will test how well the kidneys are functioning. He had that test done when we were first in the hospital. It is done by drawing blood at different intervals.
The tumor is defiantly shrinking. The bottom is now where he was cut to do the biopsy. That scar was originally in the middle of the tumor. That is very good news. If all goes well with the blood counts on Thursday, Anthony will get some more chemo.
Keep praying for Anthony and for Uncle Bobby. Thanks
Sunday, April 25, 2004 7:25 AM CDT
Hi Everyone,
Anthony had a great weekend. He was playing and laughing. He keeps us on our toes. Yesterday was one month since he was diagnosed. I didn’t think I would make it through that night. I can’t believe we are one month into his therapy. I don’t think we would have made it without the love and support of our family and friends. I thank you all for that. Tomorrow we go to clinic for blood counts. Thanks for all your prayers. Please keep praying for our Uncle Bobby.
Friday, April 23, 2004 11:40 AM CDT
Hi Everyone,
Yesterday was a good day for Anthony. He was still a little sluggish, but he was more his old self. He slept all night last night. He actually cuddled up to his new Elmo and fell asleep on the floor. He looked so cute. I took him up to bed, knowing that it was going to be a long night. I had to keep checking on him, because he didn't wake up until this morning.I was shocked, I thought for sure he would be up every few hours. He is much better today. He is getting his appitite back. I can't believe we are almost a month into this. I never thought we could do it...It is amazing what you can you do when you have to. All of your prayers are helping us get through it. Thanks so much,,,Keep praying
:)
Thursday, April 22, 2004 4:01 PM CDT
Hi Everyone,
What a crazy couple of days. Anthony had his hearing test yesterday. He seemed to do ok. They are not positive if there has been any hearing damage. During the one test that they did he was drinking his bottle, so they couldn't get a very accurate reading. They are going to keep an eye on it.
We got to come home yesterday and everything seemed to br going well. Then Anthony got sick. Sal took him up to put him in the tub and I cleaned up the mess. I went to get him medicine and I gave him too much. He was acting very sluggish and that is when I looked at the chart and realized the mistake I made. I immediatly called the hospital and they wanted me to bring him there. I was afraid that it would take too long to get there. We went to Paoli's ER. I have never been so scared in all my life. They monitored him and he was fine, but they wanted to watch him for a few hours. I guess we finally got home around 1am.
He seems to be doing well today. I think the begining round of chemo really does a number on him. I got the results back from his latest AFP and it dropped down again to 9,324. That is a releif. At least all this is working. We have an appointment on Monday for a CBC (complete blood count). Then again Thursday for more chemo.
Please can I ask you all to keep our Uncle Bobby in your prayers as well as Anthony.
Thanks so much
Wednesday, April 21, 2004 10:40 AM CDT
Anthony slept very well last night. He didn't wake up until about 9am this morning. He is my hero. He is now receiving his 5fu. He already received the vincristine.He also received anti-nausea medicine before they began. I hope it works. He is scheduled this afternoon for his hearing test. Hopefully he will co-operate. It is really cute how they do the test. He is in a little room and they use puppets that make sounds on either side of him. There is also one in front of him. They have the puppets make sounds and he hopefully will look at them when they do.
Keep praying and Keep smiling....
Tuesday, April 20, 2004 3:56 PM CDT
Anthony slept well last night. I found out this morning that when we are in for chemo, they will not bother him every four hours to do vitals. They will only do them if he is awake. Wow..what a relief. He had an ok morning. He did get sick, but it seems like now the meds to keep him from getting sick are working. He took a nice long nap this afternoon and woke up like his old self. He is very active and does not like to sit still for very long.
Sometimes the Cisplatin that he received yesterday has a delayed effect. I hope that he is not sick tomarrow. They are hoping to get him in for the audiology test tomarrow morning. He wasn't able to have it when he was first diagnosed, because he had an ear infection. Otherwise we just get his chemo. The vincristine and 5fu.
Monday, April 19, 2004 6:56 PM CDT
We are here at the hospital. Anthony received his Cisplatin and is now being hydrated. He will be hydrated for most of tomarrow. He is playing in the play room and having a good time. He has not lost his appitite yet which is a good thing. Cisplatin is one drug that really causes nausea. He is tolorating it very well so far. He is schmoozing everyone here. He always has a big smile on his face. He is a very busy boy. He is into eveything and just does not want to sit still. The playrooms here are great. Not only for the kids, but for the parents as well. As you can see I am able to get on-line and keep the site updated.
Keep praying and Keep Smiling. :)
Sunday, April 18, 2004 8:15 PM CDT
We are getting ready to go to the hospital tomarrow. We will begin round two of chemotherapy. I gave Anthony his buzz tonight. I was afraid that he would really start to lose his hair in the hospital, and I wouldn't be able to do it. He looks really cute. I posted some new pictures of Anthony and his new do and with his big brother. I will try to keep up with the website from the hospital. Thanks to everyone for your support, keep the prayers coming.
Friday, April 16, 2004 3:10 PM CDT
GOOD NEWS....I just got off the phone with the Dr. Anthony's AFP came down to 21,417....YEAH!!! That means the chemo is working. I am so happy. After yesterday this is a big releif. We are still scheduled on Monday to be admitted and start round two. Anthony is doing great today.
Thursday, April 15, 2004 7:44 PM CDT
Today was a clinic day. The final day of vincristine for this round. I could not wait to see the doctor to ask about the AFP test. That number is going to tell us if the chemo is working. Well it was 150,000 before the chemo started. It came back from last week at over 350,000. Oh no...I thought I got hit in the face with a mac truck. What does that mean? Why is it so high? Dr. Stern didn't have the answers for me. She had another test run today and is pressuring the lab to have the results back tomarrow. We are hoping that the number is lower. They may have to do a CT scan to be sure of what is going on. A normal AFP is around 8. We are being admitted on Monday to start round two. They will do the CT scan then if the number is still so high. I hate waiting. I want to know what is happening now. She measured the tumor and it is smaller than it was last week. I will take good news anywhere I can get it. I am numb all over again. Please keep your positive thoughts and prayers coming, Anthony needs them. Thanks so much.
Tuesday, April 13, 2004 9:52 AM CDT
The past two days have been uneventful. Anthony slept through the night last night. He hasn't done that for a few nights. I called to see if the AFP test results were back yet. It looks like I am going to have to be patient and wait until Thursday. I did get his original AFP number from 3/30 it was 150,090.
I think the time is here that the hair is starting to thin out. They say that when it starts it only takes a few days and it is all gone...I will see how it is when he gets up from his nap and maybe I will buzz him tonight...It will make it a little easier.
Thursday we are back at clinic for the final chemo of this round. Then Monday we will be admitted back in the hospital for the begining of round two. I am not looking forward to that. This is the cisplatin, which seems to have the most side effects...Nausea being the biggest. We were very lucky last time..I just hope for more of the same.
Keep praying....Keep smiling
Sunday, April 11, 2004 8:05 PM CDT
Happy Easter
We had a quiet weekend. Anthony was happy and playful. Getting into everything. Just like himself. The "Bunny" came and brought the kids many yummy treats. But the best gift was that Anthony was feeling good.
I hope everyone had a great Easter...Keep the prayers coming....Thanks
Friday, April 9, 2004 10:24 AM CDT
We had a great night last night. Anthony slept through the night. I think he is finally getting over being in the hospital. They woke him up every four hours to take vitals. UGH!!! He seems to be taking the chemo with little side effects. I am dreadfully waiting for the day that his hair starts to "thin out". We decided when that happens we are going to buzz it off....HMMM...just like Dad and big brother...
I remember years ago I had a neighbor going through chemo. I asked her how she dealt with losing her hair and her response was " If it is killing those cells it is killing the cancer cells." I will never forget that. It is true, so if that is what Anthony has to have happen it is ok. He is so cute anyway that he will look fine. (sorry i couldn't help it.)
Thursday, April 8, 2004 3:43 PM CDT
We went to clinic today. Anthony's blood counts are good. He had another dose of vincristine. He seems to be doing well. He also gained about 1/2 pound. I was real happy about that. He is happy and eating like a champ. Hopefully we will have an uneventful night.
Tuesday, April 6, 2004 10:00 PM CDT
Today was pretty uneventful. Anthony was in good spirits. He played and laughed and even drank and ate. He makes this whole thing a little easier. To look at him and see him smile or blow kisses makes my job much easier. I wish you all could see him.
We want to THANK everyone from the bottom of our hearts for all the love and support you have given to us. It is in a time like this that you really find out how much everyone really cares. We are overwhelmed by the outpouring of love you have all given to us. It really helps to get through the day when we think how many people are pulling for us. Anthony is a very lucky little boy to have as many people out there praying for him.
Maria, Sal and big brother Sal.and Anthony
Monday, April 5, 2004 9:28 PM CDT
We went to the clinic today. They did a CBC (complete blood count) and everything came back good. Some of his counts dropped, but the doctor said that is ok, because it means the chemo is working. Nothing dropped enough to prevent having more chemo. His hemoglobin stayed the same which we were happy about. It is at 9.0 and if it drops under 8 we need to get a blood transfusion. We need to get Anthony to drink more which is pretty hard with a little guy. I can't force him. I am nervous that he will get dehydrated which will land him back in the hospital to get fluids. We just keep trying and are very happy for every little bit he takes.
He has an appointment on Thursday and the doctor ordered a alpha feta protein test. That number is going to be an important factor in weather the chemo is working or not. He is also scheduled for more chemo(vincristine) also.
Anthony did really well today, considering we spent most of the day at the clinic. I am looking forward to being home tomarrow with Anthony.
Sunday, April 4, 2004 11:54 AM CDT
We have had a pretty uneventful weekend so far. Anthony did wake up Friday night and throw up for the first time. We gave him some Zofran and he hasn't had a problem since. He is sleeping much better at home. I just wish his appitite would come back. Athough they say that is to be expected. I just wish he would eat and drink more, because I really don't want to go back to the hospital. I just keep offering it and am happy with every little bit he takes. He is laughing and playiing which makes us happy.
Tomarrow we are off to the clinic to check his blood counts. I hope they didn't drop too much. If they drop too much it will prevent getting more chemo and we don't want that. He has responded well so far. Thursday he is due for more of the vinchristine.
Friday, April 2, 2004 8:04 PM CST
Wednesday March 24, 2004
Anthony started out with a cold and then his ears seemed to be bothering him, I took him to the doctor and both ears were infected. Dr. Michaelson noticed his belly was distended. She felt around and didn’t like what she was feeling. She left the room to get Dr. Langer’s opinion. He agreed. She told me his liver or spleen was swollen and we need to go down to Chop’s ER.
5:30 pm, we arrive at chop. They took an x-ray and did a CT scan. They found that Anthony has a tumor in his Liver. They need to do a biopsy to find out what it is.
Friday, April 2, 2004 8:04 PM CST
Thursday March 25, 2004
Dr. Mattei talks to me about doing the biopsy. He also tells me they are going to place a Port in him to be used as a central line. That way we don’t have to have an IV in Tony’s hand. The surgery went well.
His blood count has fallen below 7 so he needs a blood transfusion. He did well with the transfusion, except for getting a fever.
Friday, April 2, 2004 8:03 PM CST
Friday March 26, 2004
Anthony needs to get some tests today to make sure that everything is in working condition before the start of chemotherapy.
He has an Echocardiogram, Ekg , a Kidney test and a hearing test.
They all went well except the hearing test, because of the ear infections.
Dr. Bansal came in with the preliminary test results, of the biopsy. They believe Anthony has Hapatoblastoma, but we need to wait until the final pathology results come in. They should be in by Monday or Tuesday at the latest.
Blood count is good today and Anthony has some morphine for the pain.
Friday, April 2, 2004 8:03 PM CST
Saturday March 27, 2004
Anthony seemed to have some pain from the surgery last night. They increased his dose of morphine. It helped because he slept pretty well. One of the side effects of morphine is itching….Ant was itching his nose a lot. Rubbing it on his pillow…It was cute, but I felt bad that he was in pain. They gave him benedryl to stop the itching.
Blood count is good today.
Friday, April 2, 2004 8:02 PM CST
Sunday March 28, 2004
HAPPY BIRTHDAY ANTHONY
Anthony woke up bright eyed today. He must know it is his first birthday.
His appetite is much better today. We are trying to wean him off the morphine today. He seems to be doing good.
Blood count is good today.
There were a lot of masses said for Anthony today.
Aunt Joyce and Uncle Steve brought a birthday party to the hospital. It was really nice. (if you have to celebrate in a hospital)
I can’t believe my baby is one already,,,more so I can’t believe where we are.
Later that night Anthony spiked a fever. When that happens blood is drawn for a culture and Antibiotics are started. The dressing to his port needs to be changed.
Friday, April 2, 2004 8:02 PM CST
Monday March 29, 2004
I was holding Anthony this morning and when I put him down to sleep, I noticed some blood on my shirt. I called the nurse and she checked the port. The needle needs to be changed. Since it has been less than one week, the surgeon needs to do change it. Anthony laid on my lap while it was done and he didn’t even utter a sound. He is such a good baby.
The Pathology report is in. Anthony has Hapatablastoma. The good news it responds really well to treatment. We are going to meet with the doctors on Tuesday and have our “Family Meeting”. That is when they will tell us exactly what we need to do to beat this.
The blood culture came back positive so Oxacillin 350mg will be given every six hours.
Friday, April 2, 2004 8:01 PM CST
Tuesday March 30, 2004
I am feeling numb…the “meeting” is this morning.
The course of treatment is chemotherapy, surgery and more chemo…The side effects are mostly typical hair loss, nausea and the biggest. Thank goodness my baby is so cute….Sal and I signed the papers agreeing to the terms of treatment and the chemo will begin soon. Anthony has to be well hydrated for them to start. Around 6pm they start. It takes about six hours to infuse. Everything seems to be going well. I was really scared when they started, because I didn’t know what to expect.
Friday, April 2, 2004 8:01 PM CST
Wednesday March 31, 2004
Today was a great day. No chemo. Anthony was smiling and playing. We kept Sal home from school today. He came to the hospital so that someone named Jamie from child life could talk to him. I don’t know what or how to tell Sal that Anthony has cancer. She was great with him. Later in the day he went with Jamie to play a game and Sal met a boy named Mikey. They played all day. The best part they live one town over from us, so we are going to stay in touch.
Friday, April 2, 2004 8:00 PM CST
Thursday April 1, 2004
More chemo today. Anthony did great. He was taken off the anti-biotic so if all goes well we can go home today. YES!!!! I am so happy. Ant is eating and drinking enough to go home. What a day…A lot of info, I am a little nervous with all the things I need to do. But I can’t wait to go home either. I can’t believe how much stuff we have accumulated in one week here. We need a cart to get it all home. I think Ant is just as happy and we are to get home and sleep in his own bed.
Friday, April 2, 2004 5:13 PM CST
Friday April 2, 2004
Anthony slept all night. It was very nice. Of course I kept waking up to make sure he is ok. He ate and drank pretty well today. He took his normal two naps today. I am sure he is enjoying not being interrupted every four hours.
Friday, April 2, 2004 5:07 PM CST
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