Charlie's Hospital and Care Fund
Donation protected
Friends and Family of Charlie, my friend and her husband are going through a very hard time right now with the health concerns surrounding their son Charlie. As many of you know, we feel helpless to "make it all better" for them. I set up this GoFundMe account for them to help ease the financial burden they will soon be facing. One less thing for them to worry about at this time. Charlie needs his parents 100% focused on him, not work and bills. Melissa will be staying home with him to do what GREAT MOM's do. So, please take a minute to read through Melissa's posts I "borrowed" from her Facebook Page, and let's join together as her friends. family and supportive community to Help them stay focused on Charlie's needs. STAY STRONG CHARLIE!
2/23/16
I never thought I would be posting something like this but I've had so many people text with concern so I thought I would update you all on Charlie. He was admitted to Children's ICU for a blood infection. His liver and spleen are enlarged and he is fighting a very high fever. He on on two different antibiotics and lots of fluids. We are waiting on tests to come back. We know that he is in the best place. We are asking you all to please take a moment and say a prayer for him. He is definitely a fighter we have seen this already. Thank you to everyone who has contacted us. We have faith and believe in the power of prayer. Much love.
2/23
Here is the update for Charlie.
They have ruled out mono. In fact the blood work said he had it a while ago and we never knew. They are also running tests for any tick born virus not just Lyme. This is all under the umbrella of his symptoms.
The next step is tomorrow morning he will be having a bone marrow test along with spinal tap and a pic line put in. The doctors her are ahead of the game. He has had 4 different antibiotics and more to come. His fever is on day 6. They are fighting this with all they have. We know he has the best care.
What they are looking for is a disease called HLH found in your bone marrow. You get this after your original virus and causes havoc. I hope all this makes sense as we have had a lot of info being thrown our way. He meets the criteria of having HLH so this is why they have to do the tests.
They have told us that this is curable with a certain treatment it just takes time. Thank you so much for the continued support. You really cannot even begin to know how much it means to us for all of you who reached out. I literally had so many texts I thought I was looking at Charlie's phone.
It's a beautiful thing to have people surround you with love and prayers when your in need. ❤ God Bless
2/24
We cannot begin to express how it makes us feel getting so much support from all of you. The amount of phone calls, texts and emails is just amazing. Thank you so much. Now for the update.
Charlie had 3 procedures this morning at 10am. He had a bone marrow biopsy, spinal tap and they out a pic line in. He did very well. He has slept most of the day away but when he wakes up he is our Charlie.
They have started a treatment for HLH Hemophagocytic Lymphohistiocytosis. This is a very rare disorder 1 out of 100,000 children get this. It is when the body's defense system during which the body's normal infection fighting process becomes out of control. Instead of fighting invading cells from infection, the disorderly immune system begins to attack the body's normal cells. When the bodies infection fighting process does not work correctly, the patient usually becomes very sick. It is usually triggered by an infection.
They will start today and it could go from 4-6 weeks. He be doing rounds of steroids along with chemo twice a week. The hematologist/oncologist here is one of the best and is very sure if this course of action.
He is just the strongest boy and with the best doctors and nurses we believe and have faith that this will all work out. Thank you all again for your thoughts and prayers. Much love
Here's an update on our fighter! He has not had a fever since midnight last night which is the first in 7 days.
This is huge!!!
He does have some fluid in his lungs so they put him on a different oxygen machine forcing it into the lungs so he doesn't have to work so hard. It also was causing some discomfort so this helped him. They started lasix to get rid of the extra fluid. So we are waiting for him to get rid of that fluid so he can be weened off the oxygen. Once that happens he can eat some food which would be great. He did also have to have a red blood transfusion today and had some platelet and plasma transfusion yesterday.
With all this and by starting the treatment yesterday we feel that he is turning the corner.
Again, we cannot say it enough how grateful to everyone for reaching out. I wish I could get back to everyone sooner it's just not possible. You are all amazing and we are very BLESSED.
Update for Charles: Friday 2/26
So he spiked another fever Friday morning and then again at 5pm it's around 101 which is much better from before. The doctors say this is all part of HLH. they changed his antibiotic today to Decadron which is used for HLH. His lungs still have fluid so they upped his lasix and that is starting to work. He will get his second round of chemo tomorrow.
He sleeps a lot so I thought this cannot be good so the doctor explained it like if he is running a marathon all the while his body is inflamed and filled with fluid. So he sleeps because he's exhausted.
Every night his oxygen level dips down and they have to up his oxygen even with the lasix. We are praying that this improves. They want him to sit in a chair tomorrow and try to get up out of bed which would be the first time in 7 days. We really are hoping that in the next 24 hours if these things improve they will move him to step down very soon.
The poor thing just needs something to be normal for him. One day your playing in a basketball game and the next your in ICU. It still just throws Steven and I for a loop. I read him all his texts, Instagram messages and snapchats that he receives and it helps. He got to see a few friends yesterday on FaceTime yesterday his travel basketball team on FaceTime tonight.
I firmly believe this boy will at some point will be the same boy he once was he just isn't seeing it right now. I just cannot imagine how he feels. We are just here to keep his spirits up and be his support that he needs to get better and get out of here. Bottom line. Also, Father Moran from Incarnation church came in blessed him and gave him communion thank you to Audrey Saharek for that.
He did get to have an icee today!!!!!!
His poor little mouth is dry from the oxygen so nothing tastes good. Thanks to Rose Ruocco and Alijah for getting him his favorite Icee. I will leave you with this sweet picture of him enjoying it. God please hear my prayers and Bless my sweet boy
2/27
Our goal for today! Breathing treatments (taking deep breaths in an apparatus called Airlife) every 15 minutes. Then he will be put in a chair to help him use the bottom part of his lungs. He is only using the top. When he is in the chair we will try and use the Lego Tammi Sue, Diyas and Jaelynn got him!!! Let's do this Charlie!!!!
He did it!!!! After sleeping all day and only to wake up every 15 minutes to do his lung exercises and just got into the chair!!!! His eyes aren't really closed he cannot open them because his eyes are so dry from getting rid of fluid that it hurts to fully open. This is amazing and God is great. Much Love
2/28
Charlie update:
So today he was exhausted from chemo yesterday so he slept quite a bit. But we did get him out of bed for almost an hour. They took out two IV's just leaving his pic line.
They will not move him out of ICU just yet due to some blood test that are still elevated and he is being weened off oxygen. The hematologist is hoping he will go up to the 8th floor in 24-48 hours.
With HLH you can get a reddish color all over your body which he has. His skin is peeling off in areas like his neck face and back. They are keeping a close eye on that just to make sure it's not an allergic reaction to any of the medicines. I feel like he is shedding his old skin and now he's going to be new. Like a rebirth.
We brought in our Apple TV so for the first time he is enjoying some old fashioned Scooby Doo. When the song same on he shimmied his shoulders. He's going to kill me for putting this out there. Lol. It was so cute.
Thank you to everyone who texts for updates, have stopped by with goodies, food, gift cards to eat. It's so overwhelming and much appreciated. Words cannot express how loved we feel. God Bless
I will update around the same time tomorrow
2/29
Early UPDATE!!!!!
Charlie was weened off oxygen last night and is now breathing fine on his own!!!! He will be moved to the 8th floor today!!!!!! His appetite was huge last night. My sister-in law Lori Pascuzzi got some meatballs and pasta from Nonna and he chowed them!!!! Christopher Stoppa was witness to that. This morning Daddy went to Dunkin because he asked for donuts.
On another note they still have to have him here because everything needs to normalize before he can be released for out patient treatment. But we are more focused on his improvements!!!! His skin all over his body is shedding like a snake it's actually unreal. His new skin is a little sensitive right now but that will lessen as time goes on.
I will leave you with a picture of him enjoying a strawberry frosted donut!!
God Bless
2/29
Double update today:
Charlie had OT this morning, got him up to the bathroom, washed his hands and brushed his teeth. Then he sat in the chair. The next thing we know he is being moved to the 8th floor!!
We arrived here at 3:30 by that time he was exhausted. He got a nose bleed that couldn't clot so they ran tests and found out that he needs to have more platelets. So he is now getting a transfusion. He had another low grade fever so they ran some other tests and started him on another antibiotic.
I almost cannot believe that for a kid who never took an antibiotic before has been on 8 different ones in 7 days.
He had quite a wonderful time with his friends coming to visit. This was so emotional for Steve and I since we haven't left since coming into the ED. I have to say everyone was so awesome, all giving him a little time to show him some love.
If anyone wants to visit please contact me on fb or cell before to make sure there are not too many at once. His resistance is low so you cannot have a cough or fever. We really appreciate it.
God Bless
3/2
Good morning. I'm so sorry I didn't update last night we had family at the end of visiting and Charlie wanted Steve and I to watch the Simpsons in bed with him. It's these moments that are beautiful in a time of a struggle.
Yesterday morning he slept until 11 then PT came in. They gave him an evaluation for about an hour. She believes he's is above where anyone would be being in bed for over 8 days. We had no doubt. These damn fevers just won't go away. So every time he spikes they test him for something else to try to see if it's from a different virus that is causing not just HLH. So because of the skin peeling they are now testing him for Steven Johnson Syndrome. We will know the results by the end of today. Dr. Moss came in yesterday right before she left and said all his blood work for the HLH or going the right direction. Heaven hallelujah
We had to break it to him yesterday that he may loose his hair right around the third week of chemo. He may or may not. We are hoping not. He's was little devastated but I also told him you could look at it like it's just like the skin you have to shed it to be reborn. Steve's friend calls him the Phoenix, rising from the ashes of course we told him he's still gorgeous with or without.
We had another doctor stop in yesterday, an oncologist on this floor and said I know we never met but my son plays FSA with Charlie. He said the boys were late out of practice last night because Coach had told them all about him. Well Charlie had a visitor when he was sitting in his chair yesterday his Coach from FSA and gave him the pep talk. It was great.
We also had Elaine Carpino come on her lunch break to bring the most amazing gift from the team who has been with him from the beginning the ones who know him inside and out. How do we know this? The basket was full of everything he likes and I mean everything. He just loves it. It was a great moment.
Then he had his best friend since Kindergarten Gianna Garro come in with her dad and brought cupcakes and a whole lot of love. We thank you for that G your a beautiful girl with an even more beautiful soul. Just like your parents. ❤
Then we had who I call Mr. Ty who brought his energy, balloons and smiles. They had a few giggles. Thanks.
Each and every friend that has visited had a brought him such love. Matt, Alijah, Gino, Luke, Chris, Zak, Bobby and Joe all brought his spirits up to a whole other level. You guys are the best.
I promise to update as soon as we get results. May God Bless everyone of you for checking in and praying.
I'll leave you with this picture. You know he's comfortable if he's on his side for the first time.
So today was the longest day that Charlie has stayed awake!!!! He woke up this morning to our awesome PT. She got him up and going pretty quickly. Well actually, he got himself up and going. She did some great moves with balancing which yesterday he didn't do well with. Today not only did he do what she asked he did it while throwing/catching a football! Video I will post underneath.
Just got the news in the the test for Steven Johnson syndrome was negative! Woohoo another one down. One more to go. So the last time he has a fever was this morning and it went to only 100.5. They checked an hour later and it was 99.0. This means it went down without Tylenol! Dr. Moss came in to let us know about his levels and the ones are supposed to go up are and the ones that are supposed to go down are. This is a beautiful thing. She meaning Dr. Moss is wanting him to be fever free for over 48 hours then someone can go home!!!! He will immediately start his outpatient therapy.
We got a lesson in cleaning his pic line. Well mommy did, daddy turned sheet white. understandable. That needs to be done everyday. We will have a nurse come into the house every week to change his bandage.
He has a long journey but it will be one at home with us. We are so grateful for this. Words just don't cut it. I will spend the rest of my life giving back as I always have. Just maybe more. As always thank you to everyone that has reached out. Sometimes I don't have enough time to get back to everyone everyday but I will!!
I'll leave you with our Phoenix, Charles......
2/23/16
I never thought I would be posting something like this but I've had so many people text with concern so I thought I would update you all on Charlie. He was admitted to Children's ICU for a blood infection. His liver and spleen are enlarged and he is fighting a very high fever. He on on two different antibiotics and lots of fluids. We are waiting on tests to come back. We know that he is in the best place. We are asking you all to please take a moment and say a prayer for him. He is definitely a fighter we have seen this already. Thank you to everyone who has contacted us. We have faith and believe in the power of prayer. Much love.
2/23
Here is the update for Charlie.
They have ruled out mono. In fact the blood work said he had it a while ago and we never knew. They are also running tests for any tick born virus not just Lyme. This is all under the umbrella of his symptoms.
The next step is tomorrow morning he will be having a bone marrow test along with spinal tap and a pic line put in. The doctors her are ahead of the game. He has had 4 different antibiotics and more to come. His fever is on day 6. They are fighting this with all they have. We know he has the best care.
What they are looking for is a disease called HLH found in your bone marrow. You get this after your original virus and causes havoc. I hope all this makes sense as we have had a lot of info being thrown our way. He meets the criteria of having HLH so this is why they have to do the tests.
They have told us that this is curable with a certain treatment it just takes time. Thank you so much for the continued support. You really cannot even begin to know how much it means to us for all of you who reached out. I literally had so many texts I thought I was looking at Charlie's phone.
It's a beautiful thing to have people surround you with love and prayers when your in need. ❤ God Bless
2/24
We cannot begin to express how it makes us feel getting so much support from all of you. The amount of phone calls, texts and emails is just amazing. Thank you so much. Now for the update.
Charlie had 3 procedures this morning at 10am. He had a bone marrow biopsy, spinal tap and they out a pic line in. He did very well. He has slept most of the day away but when he wakes up he is our Charlie.
They have started a treatment for HLH Hemophagocytic Lymphohistiocytosis. This is a very rare disorder 1 out of 100,000 children get this. It is when the body's defense system during which the body's normal infection fighting process becomes out of control. Instead of fighting invading cells from infection, the disorderly immune system begins to attack the body's normal cells. When the bodies infection fighting process does not work correctly, the patient usually becomes very sick. It is usually triggered by an infection.
They will start today and it could go from 4-6 weeks. He be doing rounds of steroids along with chemo twice a week. The hematologist/oncologist here is one of the best and is very sure if this course of action.
He is just the strongest boy and with the best doctors and nurses we believe and have faith that this will all work out. Thank you all again for your thoughts and prayers. Much love
Here's an update on our fighter! He has not had a fever since midnight last night which is the first in 7 days.
This is huge!!!
He does have some fluid in his lungs so they put him on a different oxygen machine forcing it into the lungs so he doesn't have to work so hard. It also was causing some discomfort so this helped him. They started lasix to get rid of the extra fluid. So we are waiting for him to get rid of that fluid so he can be weened off the oxygen. Once that happens he can eat some food which would be great. He did also have to have a red blood transfusion today and had some platelet and plasma transfusion yesterday.
With all this and by starting the treatment yesterday we feel that he is turning the corner.
Again, we cannot say it enough how grateful to everyone for reaching out. I wish I could get back to everyone sooner it's just not possible. You are all amazing and we are very BLESSED.
Update for Charles: Friday 2/26
So he spiked another fever Friday morning and then again at 5pm it's around 101 which is much better from before. The doctors say this is all part of HLH. they changed his antibiotic today to Decadron which is used for HLH. His lungs still have fluid so they upped his lasix and that is starting to work. He will get his second round of chemo tomorrow.
He sleeps a lot so I thought this cannot be good so the doctor explained it like if he is running a marathon all the while his body is inflamed and filled with fluid. So he sleeps because he's exhausted.
Every night his oxygen level dips down and they have to up his oxygen even with the lasix. We are praying that this improves. They want him to sit in a chair tomorrow and try to get up out of bed which would be the first time in 7 days. We really are hoping that in the next 24 hours if these things improve they will move him to step down very soon.
The poor thing just needs something to be normal for him. One day your playing in a basketball game and the next your in ICU. It still just throws Steven and I for a loop. I read him all his texts, Instagram messages and snapchats that he receives and it helps. He got to see a few friends yesterday on FaceTime yesterday his travel basketball team on FaceTime tonight.
I firmly believe this boy will at some point will be the same boy he once was he just isn't seeing it right now. I just cannot imagine how he feels. We are just here to keep his spirits up and be his support that he needs to get better and get out of here. Bottom line. Also, Father Moran from Incarnation church came in blessed him and gave him communion thank you to Audrey Saharek for that.
He did get to have an icee today!!!!!!
His poor little mouth is dry from the oxygen so nothing tastes good. Thanks to Rose Ruocco and Alijah for getting him his favorite Icee. I will leave you with this sweet picture of him enjoying it. God please hear my prayers and Bless my sweet boy
2/27
Our goal for today! Breathing treatments (taking deep breaths in an apparatus called Airlife) every 15 minutes. Then he will be put in a chair to help him use the bottom part of his lungs. He is only using the top. When he is in the chair we will try and use the Lego Tammi Sue, Diyas and Jaelynn got him!!! Let's do this Charlie!!!!
He did it!!!! After sleeping all day and only to wake up every 15 minutes to do his lung exercises and just got into the chair!!!! His eyes aren't really closed he cannot open them because his eyes are so dry from getting rid of fluid that it hurts to fully open. This is amazing and God is great. Much Love
2/28
Charlie update:
So today he was exhausted from chemo yesterday so he slept quite a bit. But we did get him out of bed for almost an hour. They took out two IV's just leaving his pic line.
They will not move him out of ICU just yet due to some blood test that are still elevated and he is being weened off oxygen. The hematologist is hoping he will go up to the 8th floor in 24-48 hours.
With HLH you can get a reddish color all over your body which he has. His skin is peeling off in areas like his neck face and back. They are keeping a close eye on that just to make sure it's not an allergic reaction to any of the medicines. I feel like he is shedding his old skin and now he's going to be new. Like a rebirth.
We brought in our Apple TV so for the first time he is enjoying some old fashioned Scooby Doo. When the song same on he shimmied his shoulders. He's going to kill me for putting this out there. Lol. It was so cute.
Thank you to everyone who texts for updates, have stopped by with goodies, food, gift cards to eat. It's so overwhelming and much appreciated. Words cannot express how loved we feel. God Bless
I will update around the same time tomorrow
2/29
Early UPDATE!!!!!
Charlie was weened off oxygen last night and is now breathing fine on his own!!!! He will be moved to the 8th floor today!!!!!! His appetite was huge last night. My sister-in law Lori Pascuzzi got some meatballs and pasta from Nonna and he chowed them!!!! Christopher Stoppa was witness to that. This morning Daddy went to Dunkin because he asked for donuts.
On another note they still have to have him here because everything needs to normalize before he can be released for out patient treatment. But we are more focused on his improvements!!!! His skin all over his body is shedding like a snake it's actually unreal. His new skin is a little sensitive right now but that will lessen as time goes on.
I will leave you with a picture of him enjoying a strawberry frosted donut!!
God Bless
2/29
Double update today:
Charlie had OT this morning, got him up to the bathroom, washed his hands and brushed his teeth. Then he sat in the chair. The next thing we know he is being moved to the 8th floor!!
We arrived here at 3:30 by that time he was exhausted. He got a nose bleed that couldn't clot so they ran tests and found out that he needs to have more platelets. So he is now getting a transfusion. He had another low grade fever so they ran some other tests and started him on another antibiotic.
I almost cannot believe that for a kid who never took an antibiotic before has been on 8 different ones in 7 days.
He had quite a wonderful time with his friends coming to visit. This was so emotional for Steve and I since we haven't left since coming into the ED. I have to say everyone was so awesome, all giving him a little time to show him some love.
If anyone wants to visit please contact me on fb or cell before to make sure there are not too many at once. His resistance is low so you cannot have a cough or fever. We really appreciate it.
God Bless
3/2
Good morning. I'm so sorry I didn't update last night we had family at the end of visiting and Charlie wanted Steve and I to watch the Simpsons in bed with him. It's these moments that are beautiful in a time of a struggle.
Yesterday morning he slept until 11 then PT came in. They gave him an evaluation for about an hour. She believes he's is above where anyone would be being in bed for over 8 days. We had no doubt. These damn fevers just won't go away. So every time he spikes they test him for something else to try to see if it's from a different virus that is causing not just HLH. So because of the skin peeling they are now testing him for Steven Johnson Syndrome. We will know the results by the end of today. Dr. Moss came in yesterday right before she left and said all his blood work for the HLH or going the right direction. Heaven hallelujah
We had to break it to him yesterday that he may loose his hair right around the third week of chemo. He may or may not. We are hoping not. He's was little devastated but I also told him you could look at it like it's just like the skin you have to shed it to be reborn. Steve's friend calls him the Phoenix, rising from the ashes of course we told him he's still gorgeous with or without.
We had another doctor stop in yesterday, an oncologist on this floor and said I know we never met but my son plays FSA with Charlie. He said the boys were late out of practice last night because Coach had told them all about him. Well Charlie had a visitor when he was sitting in his chair yesterday his Coach from FSA and gave him the pep talk. It was great.
We also had Elaine Carpino come on her lunch break to bring the most amazing gift from the team who has been with him from the beginning the ones who know him inside and out. How do we know this? The basket was full of everything he likes and I mean everything. He just loves it. It was a great moment.
Then he had his best friend since Kindergarten Gianna Garro come in with her dad and brought cupcakes and a whole lot of love. We thank you for that G your a beautiful girl with an even more beautiful soul. Just like your parents. ❤
Then we had who I call Mr. Ty who brought his energy, balloons and smiles. They had a few giggles. Thanks.
Each and every friend that has visited had a brought him such love. Matt, Alijah, Gino, Luke, Chris, Zak, Bobby and Joe all brought his spirits up to a whole other level. You guys are the best.
I promise to update as soon as we get results. May God Bless everyone of you for checking in and praying.
I'll leave you with this picture. You know he's comfortable if he's on his side for the first time.
So today was the longest day that Charlie has stayed awake!!!! He woke up this morning to our awesome PT. She got him up and going pretty quickly. Well actually, he got himself up and going. She did some great moves with balancing which yesterday he didn't do well with. Today not only did he do what she asked he did it while throwing/catching a football! Video I will post underneath.
Just got the news in the the test for Steven Johnson syndrome was negative! Woohoo another one down. One more to go. So the last time he has a fever was this morning and it went to only 100.5. They checked an hour later and it was 99.0. This means it went down without Tylenol! Dr. Moss came in to let us know about his levels and the ones are supposed to go up are and the ones that are supposed to go down are. This is a beautiful thing. She meaning Dr. Moss is wanting him to be fever free for over 48 hours then someone can go home!!!! He will immediately start his outpatient therapy.
We got a lesson in cleaning his pic line. Well mommy did, daddy turned sheet white. understandable. That needs to be done everyday. We will have a nurse come into the house every week to change his bandage.
He has a long journey but it will be one at home with us. We are so grateful for this. Words just don't cut it. I will spend the rest of my life giving back as I always have. Just maybe more. As always thank you to everyone that has reached out. Sometimes I don't have enough time to get back to everyone everyday but I will!!
I'll leave you with our Phoenix, Charles......
Organizer
Melissa Stoppa Hayes
Organizer
Wethersfield, CT
