Wednesday, April 28, 2010

Healing Mass for Julia

We would like to extend an invitation to all family and friends to attend a special healing mass for Julia at St Patrick's Church in Markham. The mass will be held on Saturday May 15th @ 11:00am. All are welcome.

We would like to thank St Patrick's Church and St Julia Billiart Catholic school for organizing this mass on Julia's behalf.

Address: 5633 Hwy 7 between Markham Rd. and McCowan.

Thank you,


Sunday, April 25, 2010

Good News

Hi Everyone,

Julia had her scan on Friday and doctor's were very happy with the results. The scan was essentially normal. We could not have asked for better. Julia had a really good week. She was full of energy and felt great. We got a weekend pass and were able to take her home Saturday and not return until Sunday night. She was so funny last night when I put her to bed, she said "mommy it's been so long since I slept in my bed". She had a great time at home, and Anthony and Emily were also thrilled. I have to admit it was a little bitter sweet. It was great to be home and do normal things, but it was awful to have to come back after getting a taste of freedom and normal life. I actually enjoyed cooking and know I'm really home sick!!

Julia is actually scheduled to start her next cycle of chemo Tuesday but it doesn't look like she'll be ready. Her counts are still bottomed out, she has not had count recovery yet. She needs to have a neutrophil count of at least 1.00 before starting chemo, and Saturday morning's count was only 0.1, so it looks like we will be delayed.

I will keep you all posted on Julia's progress this week.

Thanks for everything.


Tuesday, April 20, 2010

Update On Julia

Hi Everyone,

Julia had a great day today. She was in a great mood and felt the best she's felt in a long time. We were given a day pass on Sunday to go home and it was wonderful. It felt so good to be home as a family and the kids just loved it. Anthony and Emily were so excited to have Julia home. They played games, built forts, and even went for a bike ride. Of course the day was not long enough, and Anthony had quite the meltdown when it was time for us to go back to the hospital. Julia was like a 30 year old, she turned to Anthony and said "it's okay Anthony, I have to go back to the hospital now, don't cry". It was heart breaking, Anthony cried and begged me not to leave him. He understands that this is where I need to be but he is missing me more than I realized. I can't wait to get out of here and spend some much needed quality time with the kids. Most of the time I am so wrapped up with Julia that I don't often have the time or energy to think about the impact this is or will have on Anthony and Emily. I thank god everyday that my parents are willing and able to take care of them and that they provide a safe and loving environment for them.

Julia is scheduled for her PET/CT on Friday and this will be a big day. The scan must be disease free for her to move on to cycle 4. Having no doubt that the scan will be good, Julia will start cycle 4 next Tuesday, and then only 1 more to go. I can't wait.....I am starting to see the light at the end of the long and dark tunnel. I am going absolutely crazy in here, and getting to go home on Sunday made me realize how much I am missing and how not normal life in here really is.

That is all for now and I will let you all know the results from Julia's scan. Please say a prayer on Friday for her.


Tuesday, April 13, 2010

Biopsy Results

Hi Everyone,

I wanted to let everyone know that Julia's biopsy showed improvement. The doctor called it a "healing" biopsy. Rejection is rated 0-3 and Julia's previous biopsy (2 weeks ago), was a high end level 2 rejection which was considered multi focal. This most recent biopsy was a level 1 - which is what we wanted and needed. A 0 rated biopsy meaning no rejection would have been nice but not expected. Since it seems like the rejection is under control we will continue with the Oncology side of things and hopefully we will catch a break and have smooth sailing until the next cycle (which will start around the end of April). The heart transplant team discussed doing a follow up biopsy in 4-6 weeks but nothing has been confirmed yet. For now we will continue with weekly echo's and will be monitoring her closely. These results have provided a sense of relief for now and maybe after 3 weeks of worrying and sleepless nights I can finally get some much needed sleep.

Julia will get a break from chemo for a few days and get one last chemo on Friday to finish cycle 3. Then we will wait a couple of weeks for count recovery which will conclude the "Induction" stage. She will then have all her testing and scanning at the end of next week to determine how well the chemo worked. She is expected, actually she must be, disease free in order to move on to the "Consolidation" stage (cycles 4&5). So as you can see we will only get just over a week to relax a little before undergoing all the scans and of course waiting for results. If you remember after the 1st cycle "Reduction" Julia showed a 20% reduction in disease, but the cancer was still there. She has not been scanned since then and with the unexpected episode of rejection and the need for strong immunosuppression to save the heart I am very nervous to see what these scans will show. Please pray that Julia's scans will show NO DISEASE, and we will progress to the next and final stage of treatment. If all goes well and we stay on schedule we should be home by end of June beginning of July.

I will keep you posted on Julia's progress as I can.


Sunday, April 11, 2010

Quick Update

Hi Everyone,

Just wanted to let everyone know that this week Julia started cycle 3 of her chemo protocol. She received chemo all week and did pretty good. She had a few headaches and an upset stomach but overall she handled it quite well, with the exception of one of her chemo drugs. One of the drugs Julia gets is so powerful that 24 hrs after receiving it they give her a "rescue" drug to get the chemo out of her system. Unfortunately, Julia still hasn't cleared this drug from her system. Normally the drug should have been cleared by hour 48 - 72, we are at hour 120....of course Julia doesn't follow the rules once again. This upcoming week is where her counts will bottom out and she will be at an increased risk for infection. Due to her severe neutropenia we ask that no one visits until counts recovery. Julia had a heart biopsy on Friday to check if the rejection is gone and the results will be back tomorrow. We are quite anxious for results to make sure everything has settled with her heart.

On a good note, Julia is finally starting to like her nurses and even starting to trust them. We are so lucky that we have the best nurses ever. They are so kind, patient, and understanding, and even though Julia did not make it easy for them they didn't give up. They continued to try and gain her trust and friendship. I am very grateful the nurses have been so good to us, especially Julia.

I have to go but will update all of you with biopsy results as soon as possible.

Take care,

Sunday, April 4, 2010

Easter at Sick Kids

Hi Everyone,
Although we had to spend this Easter at the hospital it was great to be all together. Here are some pictures from our day. Nadia and Elio wish all of you a Happy Easter.