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

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...

It was a HUGE success despite the rain in the afternoon, and everyone is so grateful for everything and anything that was contributed.

Can you feel the love? I can!!!

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!

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!

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

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

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