Hello Everyone,
I am so happy to report that we received news last night that Julia's CT scan was normal. She is officially in complete remission. Dr. Punnett will process the paper work to remove the PICC line, and we will go down to monthly clinics. We will continue to check counts weekly for now because of the neutropenia. Julia will have a follow up CT scan in February to make sure things are still good. Otherwise we will continue to be monitored by Oncology monthly to make sure things are staying well.
Julia is looking and feeling good these days. I have spoken to some people from Julia's medical team and they have all expressed how happy they are considering how sick she really was. I don't even think we realized how sick she was, but now that we see her we can really tell the difference. Many medical people have admitted that they weren't even sure she would make it. After hearing this from her own medical team I went and looked at pictures of her and let me tell you I cried for days. It really hit me, looking at those pictures and learning that doctors didn't have much hope really made me realize how horrible she looked and how unstable she really was. Right now we have dodged another bullet and Julia has overcome so much. We are optimistic that she will continue to fight and get through everything that is thrown her way. She is an incredibly strong and determined little girl, who will survive no matter what obstacles are in her way. Now that we have been cleared and her PICC line will be removed soon, we are working with Children's Wish to grant Julia her dream of meeting Cinderella. She is so excited!!!!
I want to take this opportunity to thank so many people for all your love, support, cards, e-mails, phone calls, and donations. Without the help from our family, friends, and strangers like you we would not have been able to get through these difficult times. I would like to let everyone know that we will be making a donation in the amount of $3000 to the Oncology Unit at the Hospital for Sick Children in Julia's name from the donations we received. I really believe it is so important to give back, and the hospital needs as much help as they can get. It is a great hospital with amazing doctors who dedicate their lives to our children, and they have saved Julia's life more than once. I want to encourage people who can to join Sick Kid's Miracle Club. For less then a coffee a day you can be helping so many children like Julia. This hospital and these doctors and nurses work endlessly to save our children's lives everyday, but unfortunately they don't have all the answers to save all the children, but maybe with our help one day this will be possible.
I will continue to post and keep you all updated on Julia's condition, and I promise once I have had time to take it all in, and absorb that this is the end I will return all the phone calls.....just bare with me. Thank You, Thank You, Thank You.
Sincerely,
Nadia
Tuesday, November 10, 2009
Tuesday, November 3, 2009
The Suburbanaires Nolan Fund
Julia has been blessed with so many people in her corner as she fights this terrible fight.
One such group, the Suburbanaires, have generously contributed to Julia's foundation through The Nolan Fund. Please read their story below.
THANKS SUBURBANAIRES. MAY YOU CONTINUE ON YOUR JOURNEY OF MUSIC AND ENTERTAINING OTHERS!!
The Nolan Fund
The fund was established in memory of Nolan, grandson of Milt Rainey, Chorus Director of The Suburbanaires, a retired senior "Barbershop Chorus" who meet every Wednesday from September to June from noon until 3 p.m. in Markham.
The purpose of the fund is to assist parents of a child in need over and above what normal agencies cover. Nolan, who was diagnosed with Neuroblastoma cancer at sixteen months of age, spent a good portion of his short life in Sick Kids Hospital. The Suburbanaires were able to help
cover the parking fees for his parents on their visits to Sick Kids.
Every Wednesday at chapter, the Suburbanaires are collecting pennies, nickles, dimes, quarters, loonies, toonies and even paper money in a specially built "Pennies for Nolan" box, to help build the fund. The Suburbanaires are constantly looking for ways to be of financial assistance to parents in need.
We have learned the plight of your child, Julia Morreale, and feel this is exactly the situation for which the Nolan fund was intended. To help you out, the Suburbanaires would like to make a donation of six hundred dollars ($600.00) to assist your family in caring for your child, to be used as you see fit.
We are hoping for the best for Julia. On behalf of the Suburbanaires, I am
Milt Rainey
(Music Director)
902 Lilac Terrace
Whitby, Ontario
L1N 2A5
The fund was established in memory of Nolan, grandson of Milt Rainey, Chorus Director of The Suburbanaires, a retired senior "Barbershop Chorus" who meet every Wednesday from September to June from noon until 3 p.m. in Markham.
The purpose of the fund is to assist parents of a child in need over and above what normal agencies cover. Nolan, who was diagnosed with Neuroblastoma cancer at sixteen months of age, spent a good portion of his short life in Sick Kids Hospital. The Suburbanaires were able to help
cover the parking fees for his parents on their visits to Sick Kids.Every Wednesday at chapter, the Suburbanaires are collecting pennies, nickles, dimes, quarters, loonies, toonies and even paper money in a specially built "Pennies for Nolan" box, to help build the fund. The Suburbanaires are constantly looking for ways to be of financial assistance to parents in need.
We have learned the plight of your child, Julia Morreale, and feel this is exactly the situation for which the Nolan fund was intended. To help you out, the Suburbanaires would like to make a donation of six hundred dollars ($600.00) to assist your family in caring for your child, to be used as you see fit.
We are hoping for the best for Julia. On behalf of the Suburbanaires, I am
Milt Rainey
(Music Director)
902 Lilac Terrace
Whitby, Ontario
L1N 2A5
Tuesday, October 27, 2009
Julia Update
Hello Everyone,
Julia was at the hospital last Thursday for Heart Transplant clinic, Oncology clinic, and a GFR (kidney test). The good news is that Julia's heart biopsy was good. It showed mild rejection, which is expected. The team does feel that this biopsy was a little soon after chemo so although they were very happy with the results they will re biopsy her in 6 months. Her kidney test showed mild improvement from last year, and they will continue to monitor her kidneys. From a heart transplant perspective everything looks good. The chemo seems to have had no drastic effects on her heart. They were very happy with the weight she has gained. She is finally at an age appropriate weight. The nurse even joked and said "wow! It's amazing what a little chemo will do". We are scheduled to have clinic again in December along with an echo (test to check heart function).
We then went to see Dr. Punnett from Oncology. She is the most amazing, caring doctor I have ever met. We talked about the fact that Julia is still neutropenic (no immunity). She agrees that at some point we will have to take her off her injections (as she has been on it for 1 year), and see if she can hold her own, but she will not trial her off until at least 6 months post chemo. So it looks like we have to put her through these injections for another 4.5 months. One of her blood tests which were showing an abnormality in her T cells (very concerning), has returned to normal. I know most of you have no idea what I am talking about but this is fantastic news. Dr. Punnett believes these cells were reacting to the PTLD. She stressed how important November 6th's CT scan is. She told us that this is "the big day". This will give doctors an idea of how well the chemo worked? If she is in complete remission? or will we have to continue with more chemo? All we can do right now is wait patiently and hope and pray for a good scan. We will meet with Dr. Punnett after recovery for the results of the scan. If the scan is good we will make plans for taking out her PICC line, and go from weekly blood work and clinic to hopefully monthly blood work and clinic. The protocol for PTLD is a 1 year follow up with Oncology until we will be considered free and clear.
Julia is feeling good, and having an amazing time at school. She is so excited to be able to do everything Anthony gets to do. She has become better and better with the hospital visits and her home care nurse who comes in everyday. She even has started giving people lessons on her PICC line, how it works and what it's for. It's actually quite funny and also so sad at the same time. She has made so many friends at the hospital, and all the nurses make her feel so special.
Once again Elio and I thank you all for your thoughts and prayers, and ask that you all say a prayer for her scan on November 6th. We have been so stressed out and worried about this scan. It all comes down to this scan. The last 6 months of hell all comes down to this one day. It could finally be the end of a horrible journey or the beginning of complete hell. I will let you all know once we receive the results from the scan.
thanks
Nadia
Julia was at the hospital last Thursday for Heart Transplant clinic, Oncology clinic, and a GFR (kidney test). The good news is that Julia's heart biopsy was good. It showed mild rejection, which is expected. The team does feel that this biopsy was a little soon after chemo so although they were very happy with the results they will re biopsy her in 6 months. Her kidney test showed mild improvement from last year, and they will continue to monitor her kidneys. From a heart transplant perspective everything looks good. The chemo seems to have had no drastic effects on her heart. They were very happy with the weight she has gained. She is finally at an age appropriate weight. The nurse even joked and said "wow! It's amazing what a little chemo will do". We are scheduled to have clinic again in December along with an echo (test to check heart function).
We then went to see Dr. Punnett from Oncology. She is the most amazing, caring doctor I have ever met. We talked about the fact that Julia is still neutropenic (no immunity). She agrees that at some point we will have to take her off her injections (as she has been on it for 1 year), and see if she can hold her own, but she will not trial her off until at least 6 months post chemo. So it looks like we have to put her through these injections for another 4.5 months. One of her blood tests which were showing an abnormality in her T cells (very concerning), has returned to normal. I know most of you have no idea what I am talking about but this is fantastic news. Dr. Punnett believes these cells were reacting to the PTLD. She stressed how important November 6th's CT scan is. She told us that this is "the big day". This will give doctors an idea of how well the chemo worked? If she is in complete remission? or will we have to continue with more chemo? All we can do right now is wait patiently and hope and pray for a good scan. We will meet with Dr. Punnett after recovery for the results of the scan. If the scan is good we will make plans for taking out her PICC line, and go from weekly blood work and clinic to hopefully monthly blood work and clinic. The protocol for PTLD is a 1 year follow up with Oncology until we will be considered free and clear.
Julia is feeling good, and having an amazing time at school. She is so excited to be able to do everything Anthony gets to do. She has become better and better with the hospital visits and her home care nurse who comes in everyday. She even has started giving people lessons on her PICC line, how it works and what it's for. It's actually quite funny and also so sad at the same time. She has made so many friends at the hospital, and all the nurses make her feel so special.
Once again Elio and I thank you all for your thoughts and prayers, and ask that you all say a prayer for her scan on November 6th. We have been so stressed out and worried about this scan. It all comes down to this scan. The last 6 months of hell all comes down to this one day. It could finally be the end of a horrible journey or the beginning of complete hell. I will let you all know once we receive the results from the scan.
thanks
Nadia
Saturday, October 17, 2009
Update on Julia
Dear Friends and Family,
I apologize for not updating everyone sooner, but things have been crazy.
Julia had her heart biopsy and Oncology clinic yesterday and she has recovered fairly well. She has lost her voice a bit from having the breathing tube down her throat, and she is a little dizzy and unbalanced today but overall she is feeling quite well. It's amazing that no matter how many biopsies Julia has had I never get used to it. My heart races, my head fills with awful thoughts, and I am in complete panic. Carrying her into the OR crying and begging me to make them stop is torture. Julia has come to understand exactly what is going on. She knows when I gear up in the white gowns, and surgical slippers and hat we are going to the OR. As I carried her into the OR yesterday, a cold room which is filled with machines, doctors and nurses I thought about how many times we've had to put her through this, and that she should be at school playing with all her friends, not here. She wrapped her hands around my neck for dear life, and screamed "no mama, no mama, make them stop". As they injected the "sleepy medicine", into her PICC line the screaming got less and less, until she passed out and became complete dead weight in my arms. Having to lie her on the operating table and leave her there with machines beeping away is something I will never get used to. We waited patiently for an hour and half, (which felt more like 10 hours), and then we were finally called into the recovery room to see her. She was still completely knocked out, and I found myself staring at her monitors and jumping off my seat every time they rang off. After a few hours in recovery we were discharged.
After biopsy we met with Julia's oncologist, Dr. Punnett. Julia's blood work continues to be up and down, but thankfully she has manged to stay well. I think that this will be the case for Julia. Her blood work will continue to make no sense some weeks and fine others, so we will have to go by how Julia is feeling. Dr. Punnett seems to be a little concerned with some subtle changes we have seen in Julia, so she has changed us back to weekly visits. She does not want to speculate on anything until we have her CT scan on November 6th. I tried to discuss taking out the PICC line, but Dr. Punnett felt like we should wait for the CT results and then make a plan. She has decided that she will scan Julia every 3 months as appose to every 6 months. I think she feels that Julia is very unpredictable and complicated so she would prefer to keep a closer than normal eye on her. I really thought that once chemo was over we would be out of the Oncology scene, (and I desperately need this because I don't know how many more kids I can see pass away), but that doesn't seem to be the case. Some days it feels like we will never get a normal life back. I am very grateful that Julia has done well, and have to remind myself everyday that the day will come where we are free and clear of Oncology, it's just taking a little longer than expected.
Julia was granted a "Make a Wish" from the Children's Wish Foundation when she had her heart transplant, so we are really hoping that we will be able to grant her that wish very soon. Her wish is to go to Disney and meet Cinderella. I spoke briefly to Dr. Punnett about this yesterday and she didn't see a problem trying to plan this wish for her in January or February. So we along with the doctors and nurses will work towards getting Julia her wish. I will however have to learn how to give Julia her injections. But we'll deal with that when the time comes.
Julia is loving school and she is in love with her teacher Mrs. Lowrie. She has adjusted better than expected and she is so happy. Julia brought home a paper pumpkin and had to write what she was thankful for on it. I asked her what she was thankful for and she said "school". I tried to explain to her what being thankful meant, I told her Julia what do you thank God for everyday, your family? your friends? etc. she said "no mom, school". She said "Mommy I am so thankful I get to go to school". It was the cutest and most heartbreaking thing at the same time. I thought about it and realized that she is thankful for the simplest things in life. She is the greatest, bravest little girl I know. I am so proud of her, and she teaches us something new everyday. She teaches us that life is a gift, and should not be taken for granted. That we should not overlook the little things in life, and that we should be grateful for everything we have, because there is always someone out there that has is worse. It's amazing that this 4 year old little girl can really teach us all a life lesson.
I want to thank everyone for your ongoing support. Elio and I could not get through this without all your love and support. I really need to thank my parents who without them we really would have gone crazy. They have had to be parents all over again to Anthony and Emily, and totally re arrange their lives around Julia and her appointments. I am so thankful to have such amazing parents.
I would like to ask that you all say a prayer for Julia that her biopsy results are good and that her CT scan on November 6th shows complete remission.
Thanks
Nadia
I apologize for not updating everyone sooner, but things have been crazy.
Julia had her heart biopsy and Oncology clinic yesterday and she has recovered fairly well. She has lost her voice a bit from having the breathing tube down her throat, and she is a little dizzy and unbalanced today but overall she is feeling quite well. It's amazing that no matter how many biopsies Julia has had I never get used to it. My heart races, my head fills with awful thoughts, and I am in complete panic. Carrying her into the OR crying and begging me to make them stop is torture. Julia has come to understand exactly what is going on. She knows when I gear up in the white gowns, and surgical slippers and hat we are going to the OR. As I carried her into the OR yesterday, a cold room which is filled with machines, doctors and nurses I thought about how many times we've had to put her through this, and that she should be at school playing with all her friends, not here. She wrapped her hands around my neck for dear life, and screamed "no mama, no mama, make them stop". As they injected the "sleepy medicine", into her PICC line the screaming got less and less, until she passed out and became complete dead weight in my arms. Having to lie her on the operating table and leave her there with machines beeping away is something I will never get used to. We waited patiently for an hour and half, (which felt more like 10 hours), and then we were finally called into the recovery room to see her. She was still completely knocked out, and I found myself staring at her monitors and jumping off my seat every time they rang off. After a few hours in recovery we were discharged.
After biopsy we met with Julia's oncologist, Dr. Punnett. Julia's blood work continues to be up and down, but thankfully she has manged to stay well. I think that this will be the case for Julia. Her blood work will continue to make no sense some weeks and fine others, so we will have to go by how Julia is feeling. Dr. Punnett seems to be a little concerned with some subtle changes we have seen in Julia, so she has changed us back to weekly visits. She does not want to speculate on anything until we have her CT scan on November 6th. I tried to discuss taking out the PICC line, but Dr. Punnett felt like we should wait for the CT results and then make a plan. She has decided that she will scan Julia every 3 months as appose to every 6 months. I think she feels that Julia is very unpredictable and complicated so she would prefer to keep a closer than normal eye on her. I really thought that once chemo was over we would be out of the Oncology scene, (and I desperately need this because I don't know how many more kids I can see pass away), but that doesn't seem to be the case. Some days it feels like we will never get a normal life back. I am very grateful that Julia has done well, and have to remind myself everyday that the day will come where we are free and clear of Oncology, it's just taking a little longer than expected.
Julia was granted a "Make a Wish" from the Children's Wish Foundation when she had her heart transplant, so we are really hoping that we will be able to grant her that wish very soon. Her wish is to go to Disney and meet Cinderella. I spoke briefly to Dr. Punnett about this yesterday and she didn't see a problem trying to plan this wish for her in January or February. So we along with the doctors and nurses will work towards getting Julia her wish. I will however have to learn how to give Julia her injections. But we'll deal with that when the time comes.
Julia is loving school and she is in love with her teacher Mrs. Lowrie. She has adjusted better than expected and she is so happy. Julia brought home a paper pumpkin and had to write what she was thankful for on it. I asked her what she was thankful for and she said "school". I tried to explain to her what being thankful meant, I told her Julia what do you thank God for everyday, your family? your friends? etc. she said "no mom, school". She said "Mommy I am so thankful I get to go to school". It was the cutest and most heartbreaking thing at the same time. I thought about it and realized that she is thankful for the simplest things in life. She is the greatest, bravest little girl I know. I am so proud of her, and she teaches us something new everyday. She teaches us that life is a gift, and should not be taken for granted. That we should not overlook the little things in life, and that we should be grateful for everything we have, because there is always someone out there that has is worse. It's amazing that this 4 year old little girl can really teach us all a life lesson.
I want to thank everyone for your ongoing support. Elio and I could not get through this without all your love and support. I really need to thank my parents who without them we really would have gone crazy. They have had to be parents all over again to Anthony and Emily, and totally re arrange their lives around Julia and her appointments. I am so thankful to have such amazing parents.
I would like to ask that you all say a prayer for Julia that her biopsy results are good and that her CT scan on November 6th shows complete remission.
Thanks
Nadia
Monday, September 21, 2009
Julia's 1st Day of School
Hello Everyone,
Julia had her last cycle of chemo 2 weeks ago, and she did very well. She was neutropenic (no white blood cells), again pre chemo and this will continue to be a problem for us, but unfortunately doctors are puzzled and have run out of options where the neutropenia is concerned. So we will have to be extra careful and hope and pray she can stay healthy. The bad news is that doctors will not be taking out her PICC line until at least end of November. I was really hoping to have the line out sooner but they feel it is very important to be sure she is in complete remission first.
After much discussion with the doctor, and a lot of back and forth we all agreed that Julia could start school. Today was Julia's first day of school and she had a wonderful day. She was so excited this morning she didn't even wait for me to give her a kiss goodbye before running into the kindergarten yard. She is only starting with 1/2 days for now. But of course it won't be our luck for everything to go off without any drama. I drop Julia off this morning go get a coffee, and am just pulling back in the driveway and the school calls. My heart dropped. It was the secretary, who says "Mrs. Morreale just calling to let you know that a child in one of the Kindergarten classes has chicken pox", my response "Holy Shit". So of course I went in to pure panic mode. I called Sick Kids, spoke to doctors and after much discussion we all agreed that since she was already there it wouldn't make much sense to pull her out. Julia did not come into contact with this child so she should be safe, I hope. When I went to pick Julia up at lunch the principal couldn't help but laugh at the timing and bad luck we seem to be having. Anyways, Julia loved school, and she fit in and adjusted very well according to her teacher. I am so happy for her. When I picked Julia up the teacher shared the funniest story with me. She said Julia got to sit in a special chair this morning and introduce herself to the class. So as she's sitting in this chair she says to the kids "do you know what my favorite song is?". The kids are guessing, Itsy Bitsy Spider, Twinkle Twinkle, etc, and Julia is saying "no, no, no", so the teacher says "Julia what is it?", so Julia gets up and starts dancing and says "I GOT A FEELING, TONIGHT'S GOING TO BE A GOOD NIGHT". That's my Julia!!!!!!
Thank you once again for all your thoughts, prayers, e-mails, cards, etc. I ask that you all continue to pray for Julia as the next few months are crucial for us. I will keep you posted on how Julia is doing, and I promise when things calm down a little I will return phone calls, and respond to e-mails. Thanks for your patience and understanding.
Nadia
***NOTE***
I couldn't help my self as I LOVE that song, and so I made Julia her own music video!!-Lot's of love, Ida
Julia had her last cycle of chemo 2 weeks ago, and she did very well. She was neutropenic (no white blood cells), again pre chemo and this will continue to be a problem for us, but unfortunately doctors are puzzled and have run out of options where the neutropenia is concerned. So we will have to be extra careful and hope and pray she can stay healthy. The bad news is that doctors will not be taking out her PICC line until at least end of November. I was really hoping to have the line out sooner but they feel it is very important to be sure she is in complete remission first.
After much discussion with the doctor, and a lot of back and forth we all agreed that Julia could start school. Today was Julia's first day of school and she had a wonderful day. She was so excited this morning she didn't even wait for me to give her a kiss goodbye before running into the kindergarten yard. She is only starting with 1/2 days for now. But of course it won't be our luck for everything to go off without any drama. I drop Julia off this morning go get a coffee, and am just pulling back in the driveway and the school calls. My heart dropped. It was the secretary, who says "Mrs. Morreale just calling to let you know that a child in one of the Kindergarten classes has chicken pox", my response "Holy Shit". So of course I went in to pure panic mode. I called Sick Kids, spoke to doctors and after much discussion we all agreed that since she was already there it wouldn't make much sense to pull her out. Julia did not come into contact with this child so she should be safe, I hope. When I went to pick Julia up at lunch the principal couldn't help but laugh at the timing and bad luck we seem to be having. Anyways, Julia loved school, and she fit in and adjusted very well according to her teacher. I am so happy for her. When I picked Julia up the teacher shared the funniest story with me. She said Julia got to sit in a special chair this morning and introduce herself to the class. So as she's sitting in this chair she says to the kids "do you know what my favorite song is?". The kids are guessing, Itsy Bitsy Spider, Twinkle Twinkle, etc, and Julia is saying "no, no, no", so the teacher says "Julia what is it?", so Julia gets up and starts dancing and says "I GOT A FEELING, TONIGHT'S GOING TO BE A GOOD NIGHT". That's my Julia!!!!!!
Thank you once again for all your thoughts, prayers, e-mails, cards, etc. I ask that you all continue to pray for Julia as the next few months are crucial for us. I will keep you posted on how Julia is doing, and I promise when things calm down a little I will return phone calls, and respond to e-mails. Thanks for your patience and understanding.
Nadia
***NOTE***
I couldn't help my self as I LOVE that song, and so I made Julia her own music video!!-Lot's of love, Ida
Friday, September 11, 2009
THANKS EVERYONE!
Just a quick note of thanks for every ones continued support of Julia.
On Aug 9/09
Everyone who went on the bus to Casino Rama A Thank you to Elisabeth and Bruna for organizing!
On Aug 16/09
Everyone's support at Vagkraft a Thank you to John, Kris, Claudio and Davide...be sure to check them out next year as well!!
Aug 31/09
Everyone who took part of raising funds at GLEN EAGLE GOLF COURSE mini putt.
A great big thank you to Al Mack & everyone from Mack Mechanical , Scott and Sandy
We are all so thank full for all of your love and support during this time!
For every one not mentioned above, know that your help, thoughts, love and prayers are felt and resonate through this family on a daily basis. Continue to pray!!!
Ida
On Aug 9/09
Everyone who went on the bus to Casino Rama A Thank you to Elisabeth and Bruna for organizing!
On Aug 16/09
Everyone's support at Vagkraft a Thank you to John, Kris, Claudio and Davide...be sure to check them out next year as well!!
Aug 31/09
Everyone who took part of raising funds at GLEN EAGLE GOLF COURSE mini putt.
A great big thank you to Al Mack & everyone from Mack Mechanical , Scott and Sandy
We are all so thank full for all of your love and support during this time!
For every one not mentioned above, know that your help, thoughts, love and prayers are felt and resonate through this family on a daily basis. Continue to pray!!!
Ida
Subscribe to:
Posts (Atom)