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


video

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

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