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

More Facebook postings

Messages to Julia, Elio, Nadia, Anthony and Emily from the Facebook group. We've got everyone rooting for this little one!!!

__________________________________________________________________

Melissa Palladino wrote at 1:13pm Hey Elio, Nadia, Anthony, Julia and Emily - our thoughts and prayers are with all of you, wishing you continued strength in your love for eachother and praying for a full recovery for Julia. I don't think anyone can begin to imagine what you're going through, even those of us with children. Your continued determination, faith and unity are a lesson to all of us. God Bless you all and especially your three beautiful children...."let their laughter remind us of who we used to be" ___________________________________________________________________________

Veronica Guzzo- Moncada wrote at 5:00pm yesterday Nadia , I heard about your daughter Julia she is in our prayers and thoughts all the time, Keep strong and have faith!! always be positve.. Veronica, John, Joey, Daniel Moncada!!! ___________________________________________________________________________

Shane Ewert (Calgary, AB) wrote at 4:21pm yesterday Hey Elio and Nadia, Jay just told me about Julia and I want you to know we are praying for you guys and wish you all the best! Godspeed to recovery Julia! ____________________________________________________________

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

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

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.

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:

transit-27982

int-001

account-3006453

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

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.

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.

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

As 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