Hi Everyone,
Just wanted to let everyone know that Julia's PICC line came out Friday. After lots of screaming and crying, she was so happy to have the line out. She was dancing around shaking her bum and singing "no more PICC line, no more PICC line". She also asked me if we could have a PICC party. It was so cute!!! When she went to school on Monday she took her top off for her teacher and classmates to show them that she had no more PICC line......that's Julia.
She is due back at the hospital next week for blood work (she'll have to be poked.....she won't like that), and echo. Then we get a break for the holidays and return the 2nd week of January.
We would like to wish everyone a very Merry Christmas and Happy New Year.
Nadia
Tuesday, December 15, 2009
Wednesday, December 9, 2009
Julia Update
Hello Everyone,
I apologize for the length of time since the last update, but things got a little crazy. Julia was admitted to hospital on November 19th (Emily's 1st birthday), for fever/neutropenia. She was feeling unwell and complaining of ear pain so I took her to the pediatrician thinking she had an ear infection. When we got to the pediatrician's office she was running a fever of 39.3, and did in fact have a bad ear infection. He immediately called down to Sick Kids and we were instructed to bring her down immediately. For those of you who don't know Julia continues to be neutropenic (no white blood counts), and because of this the protocol when she gets a fever is automatic admission with IV antibiotics until they can prove that there is no bacterial infection in her blood. The reason for this is because people who have no white counts can't fight off bacterial infections, and could go into septic shock. Perfect example, Julia's ear infection wiped her on her butt because her body couldn't' even fight off a simple ear infection. While in hospital she also developed some stomach issues, and low magnesium levels. What was suppose to be a 1-2 day admission turned out to be 6 days. We had to give her injections daily to boost her counts, and give her IV magnesium because she could not hold her own magnesium levels.
After being discharged on the November 24th, we had to be back that Friday the 27th for Oncology clinic. We arrived at clinic Friday and Julia spiked a fever and was looking very unwell. Her Oncologist also detected a heart murmur that has never been there before. It was complete chaos. We were immediately sent to the day unit and Julia was hooked up to antibiotics as her Oncologist paged the transplant team about the murmur. I was alone and started to completely panic. I began pacing back and forth and then just broke down in tears to the doctors. Cardiology did an Echo and reassured me that the echo looked good and the murmur could be from the fever. I had to cancel Emily's 1st birthday party when Julia was admitted and I had rescheduled it for that Friday night. The thought of being admitted and missing Emily's party was to much to bare. Because of this the doctor allowed Julia to go home that night with the condition that we would return Saturday for another dose of antibiotics. So we came home (just in time for the party), had Emily's party (a bundle of nerves), and went back to the hospital the next day. What a nightmare!!!!! One thing I will be sure to tell Julia when she gets older is that she has impeccable timing!!!
Julia was scheduled to remove her PICC line this Friday, but after dropping counts, rising EBV titers (this is the kind of PTLD she had - EBV driven), and generally looking unwell, the doctors were unsure if this was a good idea. After numerous e-mails back and forth we have finally decided that the risk of infection keeping the line in is to high. Generally a PICC line is used for 6 months and Julia has had hers in already 7 months. The plan is to see the doctor Friday morning, do all the blood tests, have a complete physical exam, and then if all looks good be sent to IGT for removal of the PICC.....I hope.
Julia has been feeling a lot better the last week, and I think it just took her a little extra time to bounce back from the ear infection. As I've stated before the neutropenia is a big problem and can really set her back from the simplest of infections/viruses. The problem is once an Oncology patient the minute these kids get sick (with anything), everyone worries. Julia's repeat CT has already been scheduled for February 26th.
On a happy note we have confirmed Julia's "wish" trip with Children's Wish. We will be leaving on February 14th for a week. We will be going to Orlando and staying at a special resort called Give Kids the World (which is a Disney resort only for wish kids). We will have 7 day front of the line passes at the parks, and Julia will have a princess makeover, lunch with Cinderella in her castle, and get to meet all her favorite Disney characters. She is so excited and asks us everyday how many more sleeps until we go. We just hope and pray that she will stay well enough until then.
I would like to take this opportunity to thank Styles of Creation hair salon and Farmer Jack's for the donations they collected for Julia. A special thanks to Avante Property Services for your generous gift to Julia. We are very grateful and touched by these extreme acts of kindness.
I will keep you all posted on what happens Friday. Please cross you fingers and say a prayer that all goes well and as planned.
Sincerely,
Nadia
I apologize for the length of time since the last update, but things got a little crazy. Julia was admitted to hospital on November 19th (Emily's 1st birthday), for fever/neutropenia. She was feeling unwell and complaining of ear pain so I took her to the pediatrician thinking she had an ear infection. When we got to the pediatrician's office she was running a fever of 39.3, and did in fact have a bad ear infection. He immediately called down to Sick Kids and we were instructed to bring her down immediately. For those of you who don't know Julia continues to be neutropenic (no white blood counts), and because of this the protocol when she gets a fever is automatic admission with IV antibiotics until they can prove that there is no bacterial infection in her blood. The reason for this is because people who have no white counts can't fight off bacterial infections, and could go into septic shock. Perfect example, Julia's ear infection wiped her on her butt because her body couldn't' even fight off a simple ear infection. While in hospital she also developed some stomach issues, and low magnesium levels. What was suppose to be a 1-2 day admission turned out to be 6 days. We had to give her injections daily to boost her counts, and give her IV magnesium because she could not hold her own magnesium levels.
After being discharged on the November 24th, we had to be back that Friday the 27th for Oncology clinic. We arrived at clinic Friday and Julia spiked a fever and was looking very unwell. Her Oncologist also detected a heart murmur that has never been there before. It was complete chaos. We were immediately sent to the day unit and Julia was hooked up to antibiotics as her Oncologist paged the transplant team about the murmur. I was alone and started to completely panic. I began pacing back and forth and then just broke down in tears to the doctors. Cardiology did an Echo and reassured me that the echo looked good and the murmur could be from the fever. I had to cancel Emily's 1st birthday party when Julia was admitted and I had rescheduled it for that Friday night. The thought of being admitted and missing Emily's party was to much to bare. Because of this the doctor allowed Julia to go home that night with the condition that we would return Saturday for another dose of antibiotics. So we came home (just in time for the party), had Emily's party (a bundle of nerves), and went back to the hospital the next day. What a nightmare!!!!! One thing I will be sure to tell Julia when she gets older is that she has impeccable timing!!!
Julia was scheduled to remove her PICC line this Friday, but after dropping counts, rising EBV titers (this is the kind of PTLD she had - EBV driven), and generally looking unwell, the doctors were unsure if this was a good idea. After numerous e-mails back and forth we have finally decided that the risk of infection keeping the line in is to high. Generally a PICC line is used for 6 months and Julia has had hers in already 7 months. The plan is to see the doctor Friday morning, do all the blood tests, have a complete physical exam, and then if all looks good be sent to IGT for removal of the PICC.....I hope.
Julia has been feeling a lot better the last week, and I think it just took her a little extra time to bounce back from the ear infection. As I've stated before the neutropenia is a big problem and can really set her back from the simplest of infections/viruses. The problem is once an Oncology patient the minute these kids get sick (with anything), everyone worries. Julia's repeat CT has already been scheduled for February 26th.
On a happy note we have confirmed Julia's "wish" trip with Children's Wish. We will be leaving on February 14th for a week. We will be going to Orlando and staying at a special resort called Give Kids the World (which is a Disney resort only for wish kids). We will have 7 day front of the line passes at the parks, and Julia will have a princess makeover, lunch with Cinderella in her castle, and get to meet all her favorite Disney characters. She is so excited and asks us everyday how many more sleeps until we go. We just hope and pray that she will stay well enough until then.
I would like to take this opportunity to thank Styles of Creation hair salon and Farmer Jack's for the donations they collected for Julia. A special thanks to Avante Property Services for your generous gift to Julia. We are very grateful and touched by these extreme acts of kindness.
I will keep you all posted on what happens Friday. Please cross you fingers and say a prayer that all goes well and as planned.
Sincerely,
Nadia
Tuesday, November 10, 2009
GREAT NEWS FOR JULIA
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
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 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
Monday, September 7, 2009
HAPPY 4th BIRTHDAY PRINCESS JULIA
Dear Friends and Family,
I am sorry it has taken me so long to update you. This past week was very bitter sweet. I spent my time planning a very special princess party for Julia, and at the same time trying to cope with the loss of a very special little girl.
On Tuesday evening Julia's hospital friend Rayna lost her battle against Leukemia. She passed away peacefully in her parents' arms. It was one of the most horrible experiences ever for me. We have become very close to this family and without their support I would have never made it through the transition to Oncology. They supported, guided, and educated us the whole way through our journey. Julia's weekly routine every morning we arrive at the hospital is to visit Rayna. Spending the week trying to support her parents during the worst thing imaginable and going to the funeral made it very hard to enjoy the party planning. Julia had her birthday party on Sunday and asked us if Rayna was coming. I had to find the right words to explain to Julia what happened. She is too young and doesn't quite understand. All I could tell her is that Rayna is an angel now who lives in the sky. Julia wanted to send her princess balloons to Rayna. So we told her she could let them go up to the sky and Rayna would get them. It broke my heart.
On a happier note Julia is doing very well. Tomorrow September 8th is her 4th birthday. She had her birthday party on Sunday and she had the most wonderful time. It felt so good to do this for her. She got to be with all her friends and family, and meet Cinderella, Mickey, and Minnie. She played, and jumped in the castle, and got her face painted, it was great to see her be a normal 4 year old for the day. No needles, no tests, no blood work, no hospital, just all about fun.................except that her home care nurse Chris was there. LOL. Please see some pictures posted below from her party.
Julia is scheduled for her last cycle of chemo this Friday. We will discuss the plan going forward with the doctors then. She will need a post chemo scan to be sure that the PTLD is gone, and until that happens doctors will not take her PICC line out. This puts me in a very stressful situation because Julia really wants to go to school. Her first day of kindergarten was suppose to be tomorrow. She is so upset and starting crying tonight when I had to tell her she wouldn't be going. I just want her to start living a normal life, and enjoying all the things a 4 year old should enjoy. At the same time I am so scared that she will get sick, and we will have to be admitted again. It has been so wonderful to see her look and feel so good. We will see what doctors have to say on Friday. I will keep you updated.
I would ask that everyone say a prayer for Julia as she goes through what hopefully will be her last cycle of chemo ever. And also for Rayna's parents that they find the strength to get through this horrible time.
P.S. Happy 4th Birthday to Sophia Di Iorio (Julia's cousin - they share the same birthday).
Sincerely,
Nadia
I am sorry it has taken me so long to update you. This past week was very bitter sweet. I spent my time planning a very special princess party for Julia, and at the same time trying to cope with the loss of a very special little girl.
On Tuesday evening Julia's hospital friend Rayna lost her battle against Leukemia. She passed away peacefully in her parents' arms. It was one of the most horrible experiences ever for me. We have become very close to this family and without their support I would have never made it through the transition to Oncology. They supported, guided, and educated us the whole way through our journey. Julia's weekly routine every morning we arrive at the hospital is to visit Rayna. Spending the week trying to support her parents during the worst thing imaginable and going to the funeral made it very hard to enjoy the party planning. Julia had her birthday party on Sunday and asked us if Rayna was coming. I had to find the right words to explain to Julia what happened. She is too young and doesn't quite understand. All I could tell her is that Rayna is an angel now who lives in the sky. Julia wanted to send her princess balloons to Rayna. So we told her she could let them go up to the sky and Rayna would get them. It broke my heart.
On a happier note Julia is doing very well. Tomorrow September 8th is her 4th birthday. She had her birthday party on Sunday and she had the most wonderful time. It felt so good to do this for her. She got to be with all her friends and family, and meet Cinderella, Mickey, and Minnie. She played, and jumped in the castle, and got her face painted, it was great to see her be a normal 4 year old for the day. No needles, no tests, no blood work, no hospital, just all about fun.................except that her home care nurse Chris was there. LOL. Please see some pictures posted below from her party.Julia is scheduled for her last cycle of chemo this Friday. We will discuss the plan going forward with the doctors then. She will need a post chemo scan to be sure that the PTLD is gone, and until that happens doctors will not take her PICC line out. This puts me in a very stressful situation because Julia really wants to go to school. Her first day of kindergarten was suppose to be tomorrow. She is so upset and starting crying tonight when I had to tell her she wouldn't be going. I just want her to start living a normal life, and enjoying all the things a 4 year old should enjoy. At the same time I am so scared that she will get sick, and we will have to be admitted again. It has been so wonderful to see her look and feel so good. We will see what doctors have to say on Friday. I will keep you updated.
I would ask that everyone say a prayer for Julia as she goes through what hopefully will be her last cycle of chemo ever. And also for Rayna's parents that they find the strength to get through this horrible time.
P.S. Happy 4th Birthday to Sophia Di Iorio (Julia's cousin - they share the same birthday).
Sincerely,
Nadia
Wednesday, August 26, 2009
Julia Update
Hi Everyone,
Julia was at the hospital yesterday for what was suppose to be only clinic and blood work, but unfortunately it turned into an 11 hour day. Julia's doctor was concerned that Julia had blood in her stomach/bowels. Julia has been having occasional blood in her stool, and complaining of stomach pain. One of her blood tests yesterday were quite elevated which made the doctor suspicious that there was something going on in her gut. Therefore she ordered an ultrasound to be sure. The good news is that overall the ultrasound was better then expected. There was some bowel wall thickening, but this is common with kids on chemo. The bad news is that doctors are still baffled at what's going on. Like I've been told many many times in the past by different doctors, Julia is a mystery. She tends to show signs that something really bad is going on but then passes all the tests. And believe me we have had every test imaginable.
It was very funny yesterday as I brought Anthony with us (since he had been asking me forever to bring him), and he was so curious and scared at the same time about what was going on. When Julia had her ultrasound she climbed up on the bed, lifted her top, and watched a movie like nothing was going on. Anthony on the other hand had a look of complete fear, and was asking all kinds of questions about what was going on. He was even scared about the gel the technician put on Julia's belly. It really showed me how different they really are. Overall, it was good for Anthony to be there and understand what Julia goes through on a weekly basis. They got to play in the playroom, and do crafts with the volunteers. He got to meet all of Julia's friends she has made, and see that it's not all bad when we are at the hospital.
Overall, Julia is doing quite well. So well, that I made the request not to go to clinic next week and have Julia's nurse draw her blood from home. She will return the week later for chemo. The doctor agreed that we could try this out, so I pray that this doesn't bit me in the but. We are all happy to get a week break from the hospital.
Julia will get her last cycle of chemo on September 11th, heart echo's on September 11th and October 22nd, her heart biopsy on October 16th, and heart transplant clinic and kidney testing on October 22nd. Once we have finished all these tests I hope and pray that this will be it, and we can have a quiet winter. If all is well we will try and organize Julia's make a wish trip to Disney for sometime early next year, because God knows she deserves it.
I would like to ask everyone to say a prayer for a very special little girl and her family that we met in the hospital who has Leukemia. She is very sick, and is battling a very serious infection right now. Our thoughts and prayers go out to this incredible little girl and her parents.
thanks
Nadia
Julia was at the hospital yesterday for what was suppose to be only clinic and blood work, but unfortunately it turned into an 11 hour day. Julia's doctor was concerned that Julia had blood in her stomach/bowels. Julia has been having occasional blood in her stool, and complaining of stomach pain. One of her blood tests yesterday were quite elevated which made the doctor suspicious that there was something going on in her gut. Therefore she ordered an ultrasound to be sure. The good news is that overall the ultrasound was better then expected. There was some bowel wall thickening, but this is common with kids on chemo. The bad news is that doctors are still baffled at what's going on. Like I've been told many many times in the past by different doctors, Julia is a mystery. She tends to show signs that something really bad is going on but then passes all the tests. And believe me we have had every test imaginable.
It was very funny yesterday as I brought Anthony with us (since he had been asking me forever to bring him), and he was so curious and scared at the same time about what was going on. When Julia had her ultrasound she climbed up on the bed, lifted her top, and watched a movie like nothing was going on. Anthony on the other hand had a look of complete fear, and was asking all kinds of questions about what was going on. He was even scared about the gel the technician put on Julia's belly. It really showed me how different they really are. Overall, it was good for Anthony to be there and understand what Julia goes through on a weekly basis. They got to play in the playroom, and do crafts with the volunteers. He got to meet all of Julia's friends she has made, and see that it's not all bad when we are at the hospital.
Overall, Julia is doing quite well. So well, that I made the request not to go to clinic next week and have Julia's nurse draw her blood from home. She will return the week later for chemo. The doctor agreed that we could try this out, so I pray that this doesn't bit me in the but. We are all happy to get a week break from the hospital.
Julia will get her last cycle of chemo on September 11th, heart echo's on September 11th and October 22nd, her heart biopsy on October 16th, and heart transplant clinic and kidney testing on October 22nd. Once we have finished all these tests I hope and pray that this will be it, and we can have a quiet winter. If all is well we will try and organize Julia's make a wish trip to Disney for sometime early next year, because God knows she deserves it.
I would like to ask everyone to say a prayer for a very special little girl and her family that we met in the hospital who has Leukemia. She is very sick, and is battling a very serious infection right now. Our thoughts and prayers go out to this incredible little girl and her parents.
thanks
Nadia
Wednesday, August 19, 2009
Update from Nadia
Dear Friends and Family,
Julia had her CT scan on Friday despite the big mistake I made. A routine for us when going to the hospital is that Julia drinks her milk in the car on the way to the hospital. So since I was at the hospital on Thursday and did this on the way down, on Friday we got in the car and as always - I gave her milk. As soon as she said she was done I realized I had just made the biggest mistake ever. She was NPO (no food or drink), for her CT scan since she had to be sedated. We got to the hospital and they wouldn't take her. I was devastated. I have never forgotten in 3.5 years that she's been having sedated procedures. Things are really getting to me and I am starting to lose my mind. There's just too much to remember; meds, appointments, chemo, transplant procedures, and so on. After begging the anesthesiologist he agreed to take her if we waited the 6 hours in which she would be clear from food or drink, so we did. Let me tell you it was a long day.
At around 6:00 that night Dr. Punnett called my cell phone with results. Overall she was pleased with the results. The lymph nodes in her chest, abdomen, and axilla have improved. Although they are still there they have gotten smaller in size, which is a good thing. The scan was good enough to go ahead with chemo this week. Therefore yesterday Julia received her 5th cycle of chemo, and she did fantastic. Her counts were surprisingly good, and she even managed to push through a cold on her own for the very first time. Doctors were so happy to see her body fight through this cold without support. If all is well Julia will have her last round of chemo the 1st week of September and then her post chemo CT scan around one month later.
Overall she is doing well and we are beginning to see the light at the end of the tunnel with only 1 more round of chemo remaining. It's been a long and sometimes challenging road and although we only have 1 more round of chemo it's not over yet. Dr. Punnett explained that 6 months following chemo is the most crucial time. This is when most children will relapse. So although I will be glad to finish chemo I will be even happier 6 months from now. But as we've learned in the hospital we need to take these things one day at a time, and right now we are very grateful for how much Julia has accomplished.
Julia will be back at the hospital Tuesday for counts and clinic. If all is well, I actually plan to ask for a 1 week break from the hospital. I don't know if I will get it but I will keep my fingers crossed and just maybe we can have a week without hospital visits.
I want to take this opportunity to apologize to my dearest friends and family for being so distant and unavailable. I don't really know why (since Julia is well), but I am going through a very hard time right now. There's days I just want to be alone and not talk to anyone. I hope you all understand. I think when things are crazy you just do what you have to without thinking, and when there's down time is when it all hits you. I promise I will be in touch when I feel better.
Thanks again,
Sincerely,
Nadia
Julia had her CT scan on Friday despite the big mistake I made. A routine for us when going to the hospital is that Julia drinks her milk in the car on the way to the hospital. So since I was at the hospital on Thursday and did this on the way down, on Friday we got in the car and as always - I gave her milk. As soon as she said she was done I realized I had just made the biggest mistake ever. She was NPO (no food or drink), for her CT scan since she had to be sedated. We got to the hospital and they wouldn't take her. I was devastated. I have never forgotten in 3.5 years that she's been having sedated procedures. Things are really getting to me and I am starting to lose my mind. There's just too much to remember; meds, appointments, chemo, transplant procedures, and so on. After begging the anesthesiologist he agreed to take her if we waited the 6 hours in which she would be clear from food or drink, so we did. Let me tell you it was a long day.
At around 6:00 that night Dr. Punnett called my cell phone with results. Overall she was pleased with the results. The lymph nodes in her chest, abdomen, and axilla have improved. Although they are still there they have gotten smaller in size, which is a good thing. The scan was good enough to go ahead with chemo this week. Therefore yesterday Julia received her 5th cycle of chemo, and she did fantastic. Her counts were surprisingly good, and she even managed to push through a cold on her own for the very first time. Doctors were so happy to see her body fight through this cold without support. If all is well Julia will have her last round of chemo the 1st week of September and then her post chemo CT scan around one month later.
Overall she is doing well and we are beginning to see the light at the end of the tunnel with only 1 more round of chemo remaining. It's been a long and sometimes challenging road and although we only have 1 more round of chemo it's not over yet. Dr. Punnett explained that 6 months following chemo is the most crucial time. This is when most children will relapse. So although I will be glad to finish chemo I will be even happier 6 months from now. But as we've learned in the hospital we need to take these things one day at a time, and right now we are very grateful for how much Julia has accomplished.
Julia will be back at the hospital Tuesday for counts and clinic. If all is well, I actually plan to ask for a 1 week break from the hospital. I don't know if I will get it but I will keep my fingers crossed and just maybe we can have a week without hospital visits.
I want to take this opportunity to apologize to my dearest friends and family for being so distant and unavailable. I don't really know why (since Julia is well), but I am going through a very hard time right now. There's days I just want to be alone and not talk to anyone. I hope you all understand. I think when things are crazy you just do what you have to without thinking, and when there's down time is when it all hits you. I promise I will be in touch when I feel better.
Thanks again,
Sincerely,
Nadia
Thursday, August 6, 2009
Julia Update
Hello everyone,
I do not have much time but I wanted to give everyone a short update on Julia. She was at the hospital on Tuesday for clinic and blood work, and it was a pretty uneventful day for a change. Her counts were crazy and we had to make adjustments to her injections, but otherwise she is doing well. She looks good, feels good, and of course is always causing trouble.
Julia will be back at the hospital next week for Oncology clinic, Heart Transplant clinic, blood work, and on Friday for her CT scan. Like I mentioned before if all is well she will begin her 5th cycle of chemo on the 18th.
I will update you all at the end of next week.
Thanks for all your support.
Nadia
I do not have much time but I wanted to give everyone a short update on Julia. She was at the hospital on Tuesday for clinic and blood work, and it was a pretty uneventful day for a change. Her counts were crazy and we had to make adjustments to her injections, but otherwise she is doing well. She looks good, feels good, and of course is always causing trouble.
Julia will be back at the hospital next week for Oncology clinic, Heart Transplant clinic, blood work, and on Friday for her CT scan. Like I mentioned before if all is well she will begin her 5th cycle of chemo on the 18th.
I will update you all at the end of next week.
Thanks for all your support.
Nadia
Tuesday, July 28, 2009
Update from Nadia
Dear Friends and Family,
Julia began her 4th cycle of chemo today and although it was an 11 hour day for her she was an angel. Sadly, for the first time Julia was not feeling very well after chemo today. She was very tired and crying in pain that her legs hurt. She also was very warm and flushed tonight before bed. I felt so helpless as she laid on the floor crying with tears running down her face in pain. It broke my heart. I think the chemo is taking it's toll. Doctors expect that as she receives more chemo her body is becoming weaker and the chemo will have a harder impact each time.
Despite the IV antibody she received last week Julia's counts continue to be nothing. Doctors can not explain why she continues to be neutropenic (no immunity) despite their best efforts to boost her immune system with different medications. This is becoming very frustrating and disappointing, as this continues to be a major problem for us. With no immunity she can easily become very ill at any time. Normally after people get chemo their counts bottom out for 10 - 14 days and then recover, this is not the case for Julia. In fact she should not even be receiving chemo while neutropenic.
On a happy note, I did something yesterday that I should have never done. I took her to Canada's Wonderland and she...............LOVED IT. For those of you who know the rules, Oncology has very strict guidelines on visitors, and being in any public places while on chemo and neutropenic. It's a big NO NO. Since Julia is always neutropenic and we have been living like hermits I decided to break the rules. She had been asking me everyday for the last month to take her there. She had the most wonderful time and it was so good to see her in a normal environment being a normal kid (it was good for all of us). The funny thing is while we were in line for ice cream there was an older lady behind us who also had a PICC line and was obviously receiving chemo. Julia turned to her, pointed at her arm and said "yeah, I have one of those". It was the funniest moment and Julia felt really good to see someone else like her. The older women laughed and they shared a moment. It was priceless. Going to Wonderland seems like such a simple thing, and years ago I would have thought so, but for us it's not. I can't wait for the day to come where we can begin enjoying the simple things in life again.
Julia will be back at the hospital next week for blood work and clinic. She is scheduled for her repeat CT scan on August 14th. If all is well with the scan she will begin her 5th cycle on August 18th. I will keep you all posted on the results.
I want to take this opportunity to let you all know how deeply appreciative we are for everyone’s involvement and generosity in the fundraising efforts.
I have to go but want to thank all of you for thinking of us. I will be in touch when I can.
Sincerely,
Nadia
Julia began her 4th cycle of chemo today and although it was an 11 hour day for her she was an angel. Sadly, for the first time Julia was not feeling very well after chemo today. She was very tired and crying in pain that her legs hurt. She also was very warm and flushed tonight before bed. I felt so helpless as she laid on the floor crying with tears running down her face in pain. It broke my heart. I think the chemo is taking it's toll. Doctors expect that as she receives more chemo her body is becoming weaker and the chemo will have a harder impact each time.
Despite the IV antibody she received last week Julia's counts continue to be nothing. Doctors can not explain why she continues to be neutropenic (no immunity) despite their best efforts to boost her immune system with different medications. This is becoming very frustrating and disappointing, as this continues to be a major problem for us. With no immunity she can easily become very ill at any time. Normally after people get chemo their counts bottom out for 10 - 14 days and then recover, this is not the case for Julia. In fact she should not even be receiving chemo while neutropenic.
On a happy note, I did something yesterday that I should have never done. I took her to Canada's Wonderland and she...............LOVED IT. For those of you who know the rules, Oncology has very strict guidelines on visitors, and being in any public places while on chemo and neutropenic. It's a big NO NO. Since Julia is always neutropenic and we have been living like hermits I decided to break the rules. She had been asking me everyday for the last month to take her there. She had the most wonderful time and it was so good to see her in a normal environment being a normal kid (it was good for all of us). The funny thing is while we were in line for ice cream there was an older lady behind us who also had a PICC line and was obviously receiving chemo. Julia turned to her, pointed at her arm and said "yeah, I have one of those". It was the funniest moment and Julia felt really good to see someone else like her. The older women laughed and they shared a moment. It was priceless. Going to Wonderland seems like such a simple thing, and years ago I would have thought so, but for us it's not. I can't wait for the day to come where we can begin enjoying the simple things in life again.
Julia will be back at the hospital next week for blood work and clinic. She is scheduled for her repeat CT scan on August 14th. If all is well with the scan she will begin her 5th cycle on August 18th. I will keep you all posted on the results.
I want to take this opportunity to let you all know how deeply appreciative we are for everyone’s involvement and generosity in the fundraising efforts.
I have to go but want to thank all of you for thinking of us. I will be in touch when I can.
Sincerely,
Nadia
Monday, July 27, 2009
Snowballing Kindness
This past Saturday the residents of Waterwheel St., Taylor St. and Smithy St. in Markham held a gigantic street sale.
When Mary recieved the flyer in her mailbox she thought it would be a great opportunity to have a bit of a fundraiser for Julia!
She brought a flyer to Carleton Printing, who immediately said they wanted to support Julia by printing any and all things to further the cause. They not only printed the flyers, but printed up four HUGE posters. The community`s generosity began here, and slowly snowballed!
Once the flyers were handed out by a very helpful friend and neighbour Susan, people began calling to add their support to Julias Foundation, every one wanted to help.
Neigbours came to the street sale with donations in hand, and you have NO idea how eternally gratefull we are to all of you!
People donated their items to be sold at the street sale, and a family friend donated food for our BBQ sale! Friends and family came to send good wishes to Julia and her family, and we raised hope and spirits and funds...
Can you feel the love? I can!!!
Saturday, July 25, 2009
WOW WOW WOW!!!
All I can say is WOW WOW WOW!!!What a generous surprise for Elio and Nadia from their family. At a recent stag for Enzo Elia, Elio's cousin, they raffled off a BBQ to the stag guests in support of Julia.
It is all of these small acts of kindness that help heal and bond ourselves as families and as a community.
We are so thankful for every ones involvement and for all of your support for Julia and her family.
Congratulations Enzo & Natalie on their upcoming wedding!
Tuesday, July 21, 2009
EVENT THIS SATURDAY
Please join us this Saturday as friends, family and neighbours support Julia.
GIGANTIC STREET SALE
Waterwheel St., Taylor St. and Smithy St.
Saturday July 25, 2009
6am - 4pm
Link to Map here
Drinks and snacks will also be sold in support of Julia's fight against cancer at
14 Waterwheel St. (Nonno & Nonna's house)
Please feel free to come by!
GIGANTIC STREET SALE
Waterwheel St., Taylor St. and Smithy St.
Saturday July 25, 2009
6am - 4pm
Link to Map here
Drinks and snacks will also be sold in support of Julia's fight against cancer at
14 Waterwheel St. (Nonno & Nonna's house)
Please feel free to come by!
Julia Update
Hello Everyone,
Just wanted to give you a quick update on Julia. Julia's heart biopsy was good. It showed an R1 rejection which is normal. Doctor's have decided to lower her immunosuppression meds in order to help with the PTLD. We have tried this before and Julia had rejection. We will try again and re-biopsy her in mid September early October.
Julia's counts continue to be dangerously low. Therefore today she received an antibody to help boost her immune system. It was a long day as the infusion was over 4 hours. She continues to receive injections every other day to also help bring her counts up. Then to add to the day, Julia's PICC line was sluggish so we had to give her a medicine (which I like to call Drano), to unplug it (that was another 2 hours). Her hemoglobin was boarder line today, which means she may need a blood transfusion by next week.
Julia will begin her 4th cycle of chemo next Tuesday. She will also have a repeat CT scan the week of August 10th. If all is well, we will continue with the last 2 cycles of her chemo.
Overall Julia is doing better. She continues to put up a fight and cause trouble for all the doctor's and nurses. She has turned me into her own personal nurse since she won't allow anyone to do her vitals but me. She is a strong, stubborn, feisty little girl, and because of this she has already overcome so much.
Thanks again to everyone for all your prayers and support.
Nadia
Just wanted to give you a quick update on Julia. Julia's heart biopsy was good. It showed an R1 rejection which is normal. Doctor's have decided to lower her immunosuppression meds in order to help with the PTLD. We have tried this before and Julia had rejection. We will try again and re-biopsy her in mid September early October.
Julia's counts continue to be dangerously low. Therefore today she received an antibody to help boost her immune system. It was a long day as the infusion was over 4 hours. She continues to receive injections every other day to also help bring her counts up. Then to add to the day, Julia's PICC line was sluggish so we had to give her a medicine (which I like to call Drano), to unplug it (that was another 2 hours). Her hemoglobin was boarder line today, which means she may need a blood transfusion by next week.
Julia will begin her 4th cycle of chemo next Tuesday. She will also have a repeat CT scan the week of August 10th. If all is well, we will continue with the last 2 cycles of her chemo.
Overall Julia is doing better. She continues to put up a fight and cause trouble for all the doctor's and nurses. She has turned me into her own personal nurse since she won't allow anyone to do her vitals but me. She is a strong, stubborn, feisty little girl, and because of this she has already overcome so much.
Thanks again to everyone for all your prayers and support.
Nadia
Saturday, July 11, 2009
Great News from Nadia
Finally, I have good news to report. Julia had her heart biopsy and repeat CT scan on Thursday morning. Everything went well and she recovered very well. On Thursday afternoon Dr. Punnett came to see us and let us know that Julia's CT showed marginal improvement from the last one. Although the lymph nodes were not gone they have decreased slightly in size, and since she is doing well clinically this was enough to put her back on her chemo protocol. Therefore Thursday night Julia received her 3rd cycle of chemo, and as usual handled it like a superstar. Julia continues to be neutropenic and this will remain a challenge for us.
We were finally discharged on Friday afternoon, and let me tell you it is so good to be home. It was starting to feel like the hospital was our home. Julia has to be back at the hospital on Tuesday for blood work and clinic. We will not get the results of her heart biopsy until early next week. She will be followed closely and repeat her scans after cycle 4. For know we are so grateful to be home and have decided to take this journey one day at a time.
I know a lot of you were worried and I apologize for not being in touch, but I want you to know that I am forever grateful for all your support.
Nadia
We were finally discharged on Friday afternoon, and let me tell you it is so good to be home. It was starting to feel like the hospital was our home. Julia has to be back at the hospital on Tuesday for blood work and clinic. We will not get the results of her heart biopsy until early next week. She will be followed closely and repeat her scans after cycle 4. For know we are so grateful to be home and have decided to take this journey one day at a time.
I know a lot of you were worried and I apologize for not being in touch, but I want you to know that I am forever grateful for all your support.
Nadia
Monday, July 6, 2009
Quick Update from Nadia
I am glad to report that Julia is feeling much better. She had a repeat ultrasound today and everything was good. The bowel thickening was gone and the lymph nodes were back to normal size. Since these issues resolved with antibiotics doctors believe they were probably due to infection. As of tonight she will be taken off all the antibiotics she is on and can start eating on her own (with IV nutrition as a top up).
Although we have dodged one bullet we have two more to go. She will undergo a heart biopsy and a repeat CT scan on Thursday. Doctors continue to be very concerned about the lymph nodes in her chest and the spots on her lungs. Unlike the stomach issues they do not believe this is infection related. We were told today that it is very unlikely this is an infection especially because she has no symptoms of a respiratory infection. They are worried it may be progressive disease. I remain optimistic that Julia will once again prove them wrong.
The plan is to have the CT scan Thursday and if it shows improvement we will re start our chemo protocol on Friday, and potentially be home by the weekend (this is what we pray happens). If the CT scan is unchanged or worse we will then have to undergo a lung biopsy. This is a very invasive, scary procedure which will mean Julia will have to go to the Critical Care Unit after biopsy. At this point we have not gotten into details with the doctors about this option. I figure why worry and live with more anxiety until we know the results of the CT scan. Therefore at this point I just pray that the CT scan shows improvement, and we can go on with our current chemo protocol.
The next couple of days will be very long and stressful as we await the results of the CT scan. Living here day in and day out waiting to find out what the future holds is really taking it's toll. Will we get to walk out of here by the end of the week with a happy ending or will our lives be completely shattered? Wasn't heart transplant enough to go through? These are some of the questions I ask myself everyday.
This is all for now and I will try and update you all by the weekend (hopefully from home).
Thanks again for all your love and support.
Nadia
Although we have dodged one bullet we have two more to go. She will undergo a heart biopsy and a repeat CT scan on Thursday. Doctors continue to be very concerned about the lymph nodes in her chest and the spots on her lungs. Unlike the stomach issues they do not believe this is infection related. We were told today that it is very unlikely this is an infection especially because she has no symptoms of a respiratory infection. They are worried it may be progressive disease. I remain optimistic that Julia will once again prove them wrong.
The plan is to have the CT scan Thursday and if it shows improvement we will re start our chemo protocol on Friday, and potentially be home by the weekend (this is what we pray happens). If the CT scan is unchanged or worse we will then have to undergo a lung biopsy. This is a very invasive, scary procedure which will mean Julia will have to go to the Critical Care Unit after biopsy. At this point we have not gotten into details with the doctors about this option. I figure why worry and live with more anxiety until we know the results of the CT scan. Therefore at this point I just pray that the CT scan shows improvement, and we can go on with our current chemo protocol.
The next couple of days will be very long and stressful as we await the results of the CT scan. Living here day in and day out waiting to find out what the future holds is really taking it's toll. Will we get to walk out of here by the end of the week with a happy ending or will our lives be completely shattered? Wasn't heart transplant enough to go through? These are some of the questions I ask myself everyday.
This is all for now and I will try and update you all by the weekend (hopefully from home).
Thanks again for all your love and support.
Nadia
Tuesday, June 30, 2009
Update from Nadia
Julia’s fevers finally broke yesterday, and her blood cultures (which check for bacterial infection) continue to be negative. As mentioned in my last update doctors began a fungal workup yesterday to try and figure out what is going on. Although the fevers broke her counts continue to be bottomed out and she remains unwell.
This workup includes an anti fungal antibiotic (yes another one), an ultrasound of her abdomen, and a CT scan of her chest and head. She had her ultrasound this morning and her CT scan this afternoon. Shortly after the ultrasound the fellow came in our room and told us that her ultrasound showed thickening of the bowel walls, probably due to an infection. Therefore, she will have to be NPO (no food), and fed intravenously until the infection improves. She also needs to be put on yet another antibiotic to protect her bowels. We were scared but relieved that this was probably the reason for her being so unwell.
Then our oncologist (Dr. Punnett), came to see us around 5:30 tonight with some very disturbing news. I knew when she walked in the room it wasn’t good. She was teary eyed and very upset. She told us that the CT scan showed fluid in Julia’s lungs and some spots. Unfortunately they don’t know exactly what that means. We are expecting Infectious Diseases tomorrow to determine if the spots in her lungs are bacterial. Then just when we thought it couldn’t get any worse, she told us that the ultrasound showed a significant increase in the size of her lymph nodes in her stomach. She was shocked since we just had a PET/CT scan on June 19th and it was clear. She said she would never have expected to see such changes in 11 days. The real problem is figuring out if it is infection or the disease (PTLD). There is also the possibility that the spots on her lungs could be PTLD. At this point we have stopped our current chemo protocol and once again need to undergo investigation to see if there is progression of the PTLD. We will have a repeat ultrasound on Friday, another PET/CT scan next week, and possibly a biopsy of her gut. If this turns out to be PTLD we will have to start much more aggressive chemo. On top of all this we have been having difficulty maintaining Julia’s immunosuppressant levels for her heart. Therefore we will undergo a heart biopsy to be sure there is no rejection.
I can not begin to describe how difficult today has been. We feel like we have taken 10 steps back. We are in complete shock, disbelief, numb, and extremely terrified. The thought of having to spend another 3, 4, 5, or more weeks here, and being away from Anthony and Emily again is killing me. Being here day in and day out with constant IV medications being hooked up, doctors in and out, and Julia looking so sad is becoming too much for me to handle.
I apologize for communicating this information via the blog but I can not possibly discuss all the details with each of you. Despite the disappointing news we have to remain optimistic that these are all symptoms of infection, and we ask that you do the same. We also ask that you all say a prayer for Julia as she undergoes this next week of testing.
Thanks again for your ongoing support and I hope and pray that my next update will be good news.
Sincerely,
Nadia
This workup includes an anti fungal antibiotic (yes another one), an ultrasound of her abdomen, and a CT scan of her chest and head. She had her ultrasound this morning and her CT scan this afternoon. Shortly after the ultrasound the fellow came in our room and told us that her ultrasound showed thickening of the bowel walls, probably due to an infection. Therefore, she will have to be NPO (no food), and fed intravenously until the infection improves. She also needs to be put on yet another antibiotic to protect her bowels. We were scared but relieved that this was probably the reason for her being so unwell.
Then our oncologist (Dr. Punnett), came to see us around 5:30 tonight with some very disturbing news. I knew when she walked in the room it wasn’t good. She was teary eyed and very upset. She told us that the CT scan showed fluid in Julia’s lungs and some spots. Unfortunately they don’t know exactly what that means. We are expecting Infectious Diseases tomorrow to determine if the spots in her lungs are bacterial. Then just when we thought it couldn’t get any worse, she told us that the ultrasound showed a significant increase in the size of her lymph nodes in her stomach. She was shocked since we just had a PET/CT scan on June 19th and it was clear. She said she would never have expected to see such changes in 11 days. The real problem is figuring out if it is infection or the disease (PTLD). There is also the possibility that the spots on her lungs could be PTLD. At this point we have stopped our current chemo protocol and once again need to undergo investigation to see if there is progression of the PTLD. We will have a repeat ultrasound on Friday, another PET/CT scan next week, and possibly a biopsy of her gut. If this turns out to be PTLD we will have to start much more aggressive chemo. On top of all this we have been having difficulty maintaining Julia’s immunosuppressant levels for her heart. Therefore we will undergo a heart biopsy to be sure there is no rejection.
I can not begin to describe how difficult today has been. We feel like we have taken 10 steps back. We are in complete shock, disbelief, numb, and extremely terrified. The thought of having to spend another 3, 4, 5, or more weeks here, and being away from Anthony and Emily again is killing me. Being here day in and day out with constant IV medications being hooked up, doctors in and out, and Julia looking so sad is becoming too much for me to handle.
I apologize for communicating this information via the blog but I can not possibly discuss all the details with each of you. Despite the disappointing news we have to remain optimistic that these are all symptoms of infection, and we ask that you do the same. We also ask that you all say a prayer for Julia as she undergoes this next week of testing.
Thanks again for your ongoing support and I hope and pray that my next update will be good news.
Sincerely,
Nadia
Saturday, June 27, 2009
Hello Everyone,
I wish I had better news to share but I don't. Things have gone from good to bad. Julia is still battling high fevers, and absolutely no blood counts, and doctors don't know why. Despite daily injections to boost her counts we have seen no improvement yet, and the scary thing is no one can explain it. Julia is clinically worse since Thursday, not better.
Julia had a very bad and very scary day. Her fevers reached 40.3, she started vomiting, her blood pressure dropped, and she had blood in her urine. When her blood pressure dropped doctors ordered a bolus (large amount of fluids), to be pushed in her line immediately. Instead of her blood pressure improving after the bolus it got worse. We gave her a second bolus and her blood pressure improved. Although it is not where it should be it's stable right now. Doctor's also added some heavy duty antibiotics to try and control what they think is a bacterial infection. Although the doctors believe she has a bacterial infection they have not been able to find one. If she still has fevers tomorrow they will begin a work up to see if she has a fungal infection. Julia is now on 3 heavy duty antibiotics almost around the clock and hopefully we will see some improvement tomorrow. Julia was suppose to begin her 3rd cycle of chemo on Tuesday but due to these recent events it is likely she will not be able to begin her chemo next week (which is a whole other problem).
I am sorry I have not answered or returned any calls but I can not put into words the challenges and complications we faced today. I am extremely nervous and scared right now, and in no condition emotional to talk. I hope you all understand.
I will be in touch when things improve. I hope and pray tomorrow is a better day.
Thanks,
Nadia
I wish I had better news to share but I don't. Things have gone from good to bad. Julia is still battling high fevers, and absolutely no blood counts, and doctors don't know why. Despite daily injections to boost her counts we have seen no improvement yet, and the scary thing is no one can explain it. Julia is clinically worse since Thursday, not better.
Julia had a very bad and very scary day. Her fevers reached 40.3, she started vomiting, her blood pressure dropped, and she had blood in her urine. When her blood pressure dropped doctors ordered a bolus (large amount of fluids), to be pushed in her line immediately. Instead of her blood pressure improving after the bolus it got worse. We gave her a second bolus and her blood pressure improved. Although it is not where it should be it's stable right now. Doctor's also added some heavy duty antibiotics to try and control what they think is a bacterial infection. Although the doctors believe she has a bacterial infection they have not been able to find one. If she still has fevers tomorrow they will begin a work up to see if she has a fungal infection. Julia is now on 3 heavy duty antibiotics almost around the clock and hopefully we will see some improvement tomorrow. Julia was suppose to begin her 3rd cycle of chemo on Tuesday but due to these recent events it is likely she will not be able to begin her chemo next week (which is a whole other problem).
I am sorry I have not answered or returned any calls but I can not put into words the challenges and complications we faced today. I am extremely nervous and scared right now, and in no condition emotional to talk. I hope you all understand.
I will be in touch when things improve. I hope and pray tomorrow is a better day.
Thanks,
Nadia
Friday, June 26, 2009
Julia's Update
Hi Everyone,
I am sad to report that Julia was admitted to the Hospital for Sick Children on Thursday morning with high fevers, lethargy, and absolutely no counts. Julia's blood counts are 0, which means no immunity. Her hemoglobin is also boarder line and she will probably require a blood transfusion. She has been started on heavy duty antibiotics, and daily injections to boost her counts quickly. Doctors fear that Julia has a very serious infection. When I last spoke to Nadia they were unable to get the fevers under control (even with Tylenol).
I will keep everyone posted as I know more.
I ask that you all say a prayer for Julia and her family as they are once again faced with another admission.
Thank You
Mary
I am sad to report that Julia was admitted to the Hospital for Sick Children on Thursday morning with high fevers, lethargy, and absolutely no counts. Julia's blood counts are 0, which means no immunity. Her hemoglobin is also boarder line and she will probably require a blood transfusion. She has been started on heavy duty antibiotics, and daily injections to boost her counts quickly. Doctors fear that Julia has a very serious infection. When I last spoke to Nadia they were unable to get the fevers under control (even with Tylenol).
I will keep everyone posted as I know more.
I ask that you all say a prayer for Julia and her family as they are once again faced with another admission.
Thank You
Mary
Thursday, June 18, 2009
Update from Nadia
June 18th, 2009
Julia finished her last chemo of cycle 2 today. There are only 4 more cycles to go. I am extremely happy to report that the doctors are very pleased with Julia clinically. She is eating well, and has even gained weight. Her blood work on Tuesday was almost perfect. I can not remember the last time it was that good (over a year). She is handling her chemo very well, despite being told that she won’t be well and her blood counts would bottom out on day 10-14 after her last chemo. For those of you who now Julia she never follows the book. She seems to do well when doctors don’t expect her to, and not well when she should. As we move through the cycles the chemo will have a harder impact on her.
Tomorrow is a big day. She is having a PET scan to determine how well the treatment is working. We need a clear scan tomorrow in order to move forward. Julia will receive a nuclear medicine 1 hour prior to the scan, she will then go under a general anesthetic and have her scan. The scan takes about 1 – 1.5 hours. After the scan she will go to recovery. The scan will show if there are any areas of over activity, which would be suspicious for cancer cells. We were told to page the doctor after the scan for immediate results, so as you can imagine I’m a little nervous. I ask that you all say a prayer for tomorrows scan.
I would like to apologize for not keeping in touch or returning phone calls sometimes, but this has been and continues to be a very challenging time for us. I have good days and bad, and quite honestly I need all my energy to focus on Julia. Juggling all the hospital days with Julia and trying to keep a somewhat normal life for Anthony and Emily has been exhausting.
It’s been a long day, and it will be an even longer day tomorrow so this is all for now. I do want to thank everyone for your support and please know that I am extremely grateful.
Sincerely,
Nadia
Julia finished her last chemo of cycle 2 today. There are only 4 more cycles to go. I am extremely happy to report that the doctors are very pleased with Julia clinically. She is eating well, and has even gained weight. Her blood work on Tuesday was almost perfect. I can not remember the last time it was that good (over a year). She is handling her chemo very well, despite being told that she won’t be well and her blood counts would bottom out on day 10-14 after her last chemo. For those of you who now Julia she never follows the book. She seems to do well when doctors don’t expect her to, and not well when she should. As we move through the cycles the chemo will have a harder impact on her.
Tomorrow is a big day. She is having a PET scan to determine how well the treatment is working. We need a clear scan tomorrow in order to move forward. Julia will receive a nuclear medicine 1 hour prior to the scan, she will then go under a general anesthetic and have her scan. The scan takes about 1 – 1.5 hours. After the scan she will go to recovery. The scan will show if there are any areas of over activity, which would be suspicious for cancer cells. We were told to page the doctor after the scan for immediate results, so as you can imagine I’m a little nervous. I ask that you all say a prayer for tomorrows scan.
I would like to apologize for not keeping in touch or returning phone calls sometimes, but this has been and continues to be a very challenging time for us. I have good days and bad, and quite honestly I need all my energy to focus on Julia. Juggling all the hospital days with Julia and trying to keep a somewhat normal life for Anthony and Emily has been exhausting.
It’s been a long day, and it will be an even longer day tomorrow so this is all for now. I do want to thank everyone for your support and please know that I am extremely grateful.
Sincerely,
Nadia
Thursday, June 11, 2009
A wonderful gift
I received the following message from some one who saw our Facebook group Let's Help Julia:
Hi,
I saw your post on Facebook about your wee relation Julia. What a journey! 3 of my 5 kids are under the long term care at Sick Kids with a rare metabolic disorder. Anyway, the reason for my letter is to offer a gift of photography for her family. Whenever it suites. My gift is one of a celebration of life in photographs..to give hope and life no matter what part of the journey we find ourselves in. I am available to come to the hospital and have worked with Sick Kids in the past in situations like these.
If this is something you are not interested in, I fully understand but wanted to offer it anyways:)
Robynn Munnings
www.robynnmunnings.com
What resulted was truly spectacular memories for Julia and her family. What Robynn has done for this family is truly selfless, and they are extremely grateful.
THANK YOU ROBYNN!!!
Ida
*you can click on any of the pictures to enlarge them
Hi,
I saw your post on Facebook about your wee relation Julia. What a journey! 3 of my 5 kids are under the long term care at Sick Kids with a rare metabolic disorder. Anyway, the reason for my letter is to offer a gift of photography for her family. Whenever it suites. My gift is one of a celebration of life in photographs..to give hope and life no matter what part of the journey we find ourselves in. I am available to come to the hospital and have worked with Sick Kids in the past in situations like these.
If this is something you are not interested in, I fully understand but wanted to offer it anyways:)
Robynn Munnings
www.robynnmunnings.com
What resulted was truly spectacular memories for Julia and her family. What Robynn has done for this family is truly selfless, and they are extremely grateful.
THANK YOU ROBYNN!!!
Ida
*you can click on any of the pictures to enlarge themSaturday, June 6, 2009
Julia Update from Nadia
Hello Everyone,
Sorry it’s taken me so long to update you on Julia’s week, but it was a very crazy and exhausting week.
The back to back chemo days were intense, and very long. Julia was at the hospital Tuesday for clinic, blood tests, and an IV treatment. It was a 10 hour day, but she did very well. Doctors were happy with her clinically, but unfortunately, Julia is severely neutropenic (NO IMMUNITY) right now. I know a lot of people have asked about coming to see her but we will not be having visitors until her blood counts rise.
Julia received her first chemo of Cycle 2 on Thursday. It took 6 hours, and she handled it well. Friday’s chemo was an 8 hour infusion, and it made her a little sick. Doctors warned us that she would get sick that night, but I didn’t believe it because she looked so good after her chemo. But sure enough the minute we walked in the house she vomited everywhere. She had a rough night, but is much better today. Although, we were told yesterday that this chemo will have its full effect between day 10 and 14, so we will have to wait and see.
Since her hair is continuing to slowly fall out, we decided to give her a little haircut. She has given herself a new nickname of “shaggy” (she thinks it’s hilarious).
That is all for now except thank you all for your good wishes and prayers. I am so thankful to have so many good friends/family.
Nadia
Sorry it’s taken me so long to update you on Julia’s week, but it was a very crazy and exhausting week.
The back to back chemo days were intense, and very long. Julia was at the hospital Tuesday for clinic, blood tests, and an IV treatment. It was a 10 hour day, but she did very well. Doctors were happy with her clinically, but unfortunately, Julia is severely neutropenic (NO IMMUNITY) right now. I know a lot of people have asked about coming to see her but we will not be having visitors until her blood counts rise.
Julia received her first chemo of Cycle 2 on Thursday. It took 6 hours, and she handled it well. Friday’s chemo was an 8 hour infusion, and it made her a little sick. Doctors warned us that she would get sick that night, but I didn’t believe it because she looked so good after her chemo. But sure enough the minute we walked in the house she vomited everywhere. She had a rough night, but is much better today. Although, we were told yesterday that this chemo will have its full effect between day 10 and 14, so we will have to wait and see.
Since her hair is continuing to slowly fall out, we decided to give her a little haircut. She has given herself a new nickname of “shaggy” (she thinks it’s hilarious).
That is all for now except thank you all for your good wishes and prayers. I am so thankful to have so many good friends/family.
Nadia
Tuesday, June 2, 2009
Julia Update
Hi Everyone,I just wanted to let everyone know that Julia is home from Sick Kids from her clinic, blood tests and treatment today. Julia did very well and she will be returning to Sick Kids on Thursday and Friday for chemo. We will keep you posted on how Julia is doing.
Thank you again for all your love and support.
Thank you,
Mary
Monday, June 1, 2009
A message from Nadia
Hello Everyone,
I want to thank you all for your ongoing support, prayers, and good wishes. Your messages for Julia are fantastic. I read them to her almost everyday. They really make her happy.
This has been a difficult few days for me. Julia is starting to lose her hair and it just makes things so real. It makes me realize that she may look good on the outside, but on the inside there’s a lot going on in her little body.
Julia has been playing, laughing, and causing trouble like all 3 year olds should. She has more strength and courage then anyone I know. I pray everyday that she can stay this strong through her treatment…………it will make things easier for all.
We are back at Sick Kids tomorrow for clinic, blood tests, and treatment. We will keep you posted on her progress.
I have to go but thank you all so much for your ongoing support.
Nadia
I want to thank you all for your ongoing support, prayers, and good wishes. Your messages for Julia are fantastic. I read them to her almost everyday. They really make her happy.
This has been a difficult few days for me. Julia is starting to lose her hair and it just makes things so real. It makes me realize that she may look good on the outside, but on the inside there’s a lot going on in her little body.
Julia has been playing, laughing, and causing trouble like all 3 year olds should. She has more strength and courage then anyone I know. I pray everyday that she can stay this strong through her treatment…………it will make things easier for all.
We are back at Sick Kids tomorrow for clinic, blood tests, and treatment. We will keep you posted on her progress.
I have to go but thank you all so much for your ongoing support.
Nadia
Saturday, May 30, 2009
Julia Update
Hi Everyone,
I just wanted to let everyone know that I am here with Julia today at home and she is having a great day, Julia is very active and playing and wanting to paint, take a walk, sit outside and enjoy the day. I have taken a picture of her today with my cell phone and she looks great cute and posing with her sunglasses.
Julia and her family want to thank everybody for all the love and support she is getting, they are very grateful.
Thank you,
Mary
Friday, May 29, 2009
More Facebook postings
Messages to Julia, Elio, Nadia, Anthony and Emily from the Facebook group. We've got everyone rooting for this little one!!!
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Thursday, May 28, 2009
A Message from Nadia
Hello everyone,
I’ve been wanting to write to you all for so long to explain what is happening with Julia, but I honestly have extreme difficulty putting it into words the challenges we are facing.
As some of you already know Julia has had a challenging year. She has been in and out of hospital many times with numerous illnesses. She has been unwell a lot over the last year.
Unfortunately, Julia got sick on April 16th, 2009 and we were once again admitted to the hospital. We were admitted with what doctors believed to be a gastro infection. A week after admission she still was not well clinically. Her blood counts started dropping and she required her first blood transfusion since transplant. One week after that she was getting sicker and needed another transfusion. A specific blood test was run which showed abnormalities in her T cells which had doctors believing she may have a T-cell Lymphoma (a deadly type of cancer, which has a very poor outcome). Within 2 days she was sent to the OR and underwent a tonsillectomy, bone marrow aspirate and biopsy, a gut and colon biopsy and had her adenoids removed. The week after she went back to the OR and had a PICC line (permanent line) inserted into her left arm. She then had a PET scan (a high tech scan that looks for potential cancer cells).
After waiting almost 4 weeks with no answers, Elio and I had convinced ourselves that there was nothing wrong, and the doctors were fishing once again.
On May 13th (my Dad’s birthday), at 3:00pm a team showed up at our room to inform us that Julia’s pathology report of her tonsils and adenoids were positive for PTLD and that her PET scan showed some increased suspicion from prior scans. The good news is that it is B-cell driven and not the T-cell Lymphoma they first suspected. 95% of transplant kids that develop PTLD have B-cell driven PTLD. It is more common, has better treatment options, and better success with complete remission. That night we were transferred from the Cardiac Ward to the Oncology Ward.
On May 14th Julia began her 1st Cycle of Chemotherapy. Julia’s protocol is a new protocol (phase 2 of trial) which is showing promising results. It consists of 6 cycles each lasting 21 days and combines 2 different chemo drugs. She will be re scanned after Cycle 2 to determine how well the treatment is working. God willing she has a clean scan she will not be re tested until the end of her 6 cycles. She is also receiving an anti viral IV med 2x day at home administered by her home care nurse.
Julia finally came home on May 26th (Elio’s birthday and the same day she was discharged after her heart transplant in 2006), and in the last couple of days she is feeling better and is more active.
We were back at the hospital today for her chemo treatment and she did amazing. She will need to go to the hospital on Tuesdays and Thursdays for treatment for the next 4 months. She is a very strong little girl, and watching her today coloring and making necklaces while receiving her chemo was inspiring.
We are very grateful to those who have donated money and/or taken the time to communicate their thoughts, good wishes, and prayers. Most people are not quite sure what to say at a time like this, but the moral support is most appreciated and welcomed. I am sorry for not being in touch regularly; I am consumed with Julia’s care and don’t often have the time.
Sincerely,
Nadia
Tuesday, May 26, 2009
Thank you to Everyone!!
Hi everyone,
First off I want to say THANK YOU to everyone for their love and support.
This is my first blog so bare with me.
I just wanted to let everyone know that Julia has her good days and her bad, she really didn't have a great day today but I wanted to let everyone know that she was released from the hospital tonight and came home for the first time in six (6) weeks. Julia's nurse Chris has gone to set her up tonight, Julia still is on IV and Julia's nurse will be by the house 2 times if not more a day.
Julia will be back at Sick Kids this Thursday to receive another dose of chemo
Ida and I will keep everyone posted on how Julia is doing
I will be uploading some recent pictures of Julia soon!
Thank you again
Mary
First off I want to say THANK YOU to everyone for their love and support.
This is my first blog so bare with me.
I just wanted to let everyone know that Julia has her good days and her bad, she really didn't have a great day today but I wanted to let everyone know that she was released from the hospital tonight and came home for the first time in six (6) weeks. Julia's nurse Chris has gone to set her up tonight, Julia still is on IV and Julia's nurse will be by the house 2 times if not more a day.
Julia will be back at Sick Kids this Thursday to receive another dose of chemo
Ida and I will keep everyone posted on how Julia is doing
I will be uploading some recent pictures of Julia soon!
Thank you again
Mary
What's it like?
So what's it been like the last 6 weeks? Anthony and Emily have been at Nadia's parents house, and she's not spending anytime with them, missing out on there growing up, especially Emily. Tests after tests, chemo, bad reaction to chemo, fevers, blood transfusions, meetings with doctors, scans, etc.
Besides the extreme stress with Julia, and not being able to be with their other children, it becomes a financial stress as well, and that is what Mary and I are trying to do...relieve some of the financial stress, and raise money to help with medical expenses, food while in the hospital, parking, things to make Julia happy while she is staying there. Should they need further treatment elsewhere (USA), like many Oncology families decide to do, it will be a financially feasible option.
Julia's parents would like to donate any remaining funds back to the oncology department of Sick Kids at the conclusion of her treatment.
I have added Mary as an author and she'll be blogging more to the day to day of how Julia is doing and I will be blogging just as a Mom and cousin.
I have also invited Nadia as an author, and hopefully she will be able to put a few entries in.
Besides the extreme stress with Julia, and not being able to be with their other children, it becomes a financial stress as well, and that is what Mary and I are trying to do...relieve some of the financial stress, and raise money to help with medical expenses, food while in the hospital, parking, things to make Julia happy while she is staying there. Should they need further treatment elsewhere (USA), like many Oncology families decide to do, it will be a financially feasible option.
Julia's parents would like to donate any remaining funds back to the oncology department of Sick Kids at the conclusion of her treatment.
I have added Mary as an author and she'll be blogging more to the day to day of how Julia is doing and I will be blogging just as a Mom and cousin.
I have also invited Nadia as an author, and hopefully she will be able to put a few entries in.
What a response!
What a wonderful response. Elio & Nadia wanted me to pass along their thanks for everyone's generosity!
For those who wish to donate funds in person and don't like the idea of using PayPal please go to any branch of the Bank of Montreal:
For those who wish to donate funds in person and don't like the idea of using PayPal please go to any branch of the Bank of Montreal:
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Monday, May 25, 2009
Message from a Facebook group member
Friends,
Men may give up, doctors may give up BUT God never gives up on anyone.
We read in the bible of a man called Lazarus, dead four days and according to the
sister "stinking" BUT Jesus never gave up on Him.
Father, we pray that you touch every cancer patient, heal them or grant them
sufficient grace to make it through. We pray for all the doctors and nurses taking
care of these dear ones. We pray for family members that God You will comfort
them and grant them peace.
We ask all this in Jesus Mighty Name, Amen.-Daily Devotions.
Our prayers and thoughts are with you , God bless Julia and those touched by her illness.
________________________________________________________
I say AMEN to that!!
Ida
Men may give up, doctors may give up BUT God never gives up on anyone.
We read in the bible of a man called Lazarus, dead four days and according to the
sister "stinking" BUT Jesus never gave up on Him.
Father, we pray that you touch every cancer patient, heal them or grant them
sufficient grace to make it through. We pray for all the doctors and nurses taking
care of these dear ones. We pray for family members that God You will comfort
them and grant them peace.
We ask all this in Jesus Mighty Name, Amen.-Daily Devotions.
Our prayers and thoughts are with you , God bless Julia and those touched by her illness.
________________________________________________________
I say AMEN to that!!
Ida
Sunday, May 24, 2009
How??
Julia's struggles started over 3 years ago. I got a call from Mary saying that Julia was at Markham Stouffville Hospital with dehydration from a virus. I, along with her parents Elio and Nadia, probably never even dreamed of the road ahead for their tiny daughter.She was sent to Hamilton Children's hospital with a D.O.A. She was in fact alive, but it was obvious that the doctors sending her by ambulance to Hamilton did not believe she would make it. She did. Dozens and dozens of tests later revealed absolutely nothing. They new it was her heart but they don't know how her heart got sick.
She was finally transferred to Toronto's Sick Kids hospital. Dozens of tests there again revealed nothing. What was apparent though was that Julia's heart was failing, and that she would require a heart transplant ASAP.
Julia was put on the top of the UNOS list and within 3 days they had found her a donor. In those days, I couldn't fathom what Elio and Nadia were going through. The terror of fighting time. I held my own children closer, praying for Julia and yet thanking God for two healthy children.
The transplant was text book and unbelievably she was released 3 weeks later!Anti-rejection medication made it hard for the family to get together with other kids, and she missed birthday parties and other functions, but she was ALIVE!
Between 2006 and now she has accomplished so much. Her family adapted their lives to her schedule and still numerous doctors appointments for blood test and biopsy's and all other medical matters attributed to transplant patients. She became a big sister to Emily, celebrated her first, second and third birthdays, and we want her to continue to celebrate her birthdays, for a world with out Julia would be a dim one.
She was diagnosed with PTLD (Post Transplant Lymphoproliferative Disease) and the very same day began her chemotherapy. This won't be the end for our little Julia. I know it.
Saturday, May 23, 2009
Facebook group
I have created a group on Facebook to really get the message and the word out about Julia's fight.
Click here
I am awaiting pictures and video from Mary and will have some thing posted for this little Angel in the coming days.
Click here
I am awaiting pictures and video from Mary and will have some thing posted for this little Angel in the coming days.
Quick intro and how can YOU help...
OK...first post. Quick intro:
Julia is 3 years old and after having had a heart transplant at 8 months old, she has recently been diagnosed with PTLD (Post Transplant Lymphoproliferative Disease). She is currently in Sick Kids hospital in Toronto Canada receiving Cycle 1 of 6 cycles of chemo.
In 2006, Julia's own heart was weakened by cardiomyopathy. Cardiomyopathy, which literally means "heart muscle disease," is the deterioration of the function of the myocardium (i.e., the actual heart muscle) for any reason.
She was blessed to receive a heart transplant...
Julia dancing with her big brother Anthony
Julia is 3 years old and after having had a heart transplant at 8 months old, she has recently been diagnosed with PTLD (Post Transplant Lymphoproliferative Disease). She is currently in Sick Kids hospital in Toronto Canada receiving Cycle 1 of 6 cycles of chemo.
In 2006, Julia's own heart was weakened by cardiomyopathy. Cardiomyopathy, which literally means "heart muscle disease," is the deterioration of the function of the myocardium (i.e., the actual heart muscle) for any reason.
She was blessed to receive a heart transplant...
Julia dancing with her big brother AnthonyAs a mother myself to two wonderful healthy boys, I cannot not even imagine the HORROR of this ever happening to my family. I remember once specifically asking Nadia after Julia's transplant how she had held it together, and she told me "You just do it".
Well now the family-Elio, Nadia, Anthony and the newest addition Emily are "doing it" again for Julia as she goes through cancer treatment at the tender age of 3.
They are lucky to have the best children's hospital here in Toronto, but situations like this put strains on a family. As a community I am asking that we be able to help take at least the financial strain off of this amazing family.
PLEASE click the red DONATE button on the left, and give as much as you can. I strongly believe it takes a village to raise a child, and a village to hold family together as they struggle to make themselves whole again.
Julia a few short months ago with Anthony and Emily
Well now the family-Elio, Nadia, Anthony and the newest addition Emily are "doing it" again for Julia as she goes through cancer treatment at the tender age of 3.
They are lucky to have the best children's hospital here in Toronto, but situations like this put strains on a family. As a community I am asking that we be able to help take at least the financial strain off of this amazing family.
PLEASE click the red DONATE button on the left, and give as much as you can. I strongly believe it takes a village to raise a child, and a village to hold family together as they struggle to make themselves whole again.
Julia a few short months ago with Anthony and Emily
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