Tuesday, September 27, 2011

Quick Update

Hi Everyone,

Just wanted to let you all know that Julia's hospital appointment last week went well. Her counts showed a small improvement and I was thrilled with that news. The hope is that they will continue to go up. Her latest EBV results remain negative.....another good thing. At this point the talks of relapse have stopped and we're all sticking to the theory that its something viral. She went back to school on Monday and is very excited about that. We did make the decision to pull her off steroids in preparation for NY and she will need a heart biopsy in 4 weeks to make sure there is no rejection going on. We are all crossing our fingers that we have 4 weeks here in order to get the biopsy done. At this point she will continue to go to the hospital weekly for clinic, blood work and her cytogam infusions. I can handle this.......I just hope it can stay at once a week????

I will you keep you all posted on how Julia is doing.


Wednesday, September 21, 2011

Update on Julia

Hi Everyone,

Julia is home now and the fevers have stopped. However, her chest x-ray shows an infectious process going on in her lungs that doctors believe is pneumonia. She is on strong antibiotics and hopefully the repeat x-ray will show improvement. Despite having pneumonia she is feeling fine. Her counts have bottomed out pretty much across the board and doctors are extremely worried we could be looking at disease. She will be at the hospital tomorrow for follow up and if she is still neutropenic they are thinking of doing a PET/CT to look for evidence of disease. We may need to get to NY sooner rather than later but now with the pneumonia we will need to wait until the infection is gone. Sending Julia to NY neutropenic is not ideal this could open up a can of worms both medically and financially.

This has been a tough 10 days and I am feeling completely overwhelmed with everything going on. Starting to feel like no matter what we do it's just never enough. It's unbelievable how many bullets we continuously have to dodge.

Anthony is having a very hard time lately and is an emotional mess. I am trying to spend every extra minute I have with him. He is coming with us tomorrow to Sick Kids to talk with the Oncology social worker and hopefully this will help. I feel so bad for him and don't know what I can or could have done to make things better for him. My heart breaks for him.......

Will you keep you all posted as I know more. For now please pray that this is just an infection and nothing more.


Saturday, September 17, 2011

Julia admitted to HSC

Hi Everyone,

I update you all from Sick Kids. Julia had a rough week with fevers starting Tuesday. We had to bring her into hospital everyday this week for bloodwork and cultures. Yesterday doctors decided to admit her since it had been 4 days of fever with no obvious source. She feels absolutely fine, its just the fever. The one thing that is very concerning are her counts. When she was here Monday for clinic her counts had taken a drastic fall and we were unsure why. Well, now she is once again neutropenic (no counts). This makes no sense considering how well she was while we were away. Its unbelievable how things can change so quickly. As you can imagine doctors are very concerned given her history and already talking about the possibility of the cancer being back. I apologize for being very distant this week. A lot of you have been contacting me to find out about our trip but this has been a really tough week. Its been really hard to come back from such an amazing trip where Julia was so well to being at Sick Kids everyday. And now this admission is a real kick in the face. I tried to negotiate with docs yesterday to let her go home and ride this out at home since besides the fever she's fine.....but obviously I lost the negotiation. They rushed her to u/s and bone scan yesterday to see if she had an infection in her bones since she was complaining of leg pain. The u/s and bone scan were both normal. The big mystery now are her counts. WHY the hell is she neutropenic???

The first week of school and poor baby only went for one day and poor Anthony has already spent the first week back at school being shuffled around. I called home late last night and poor Anthony was still up waiting for me to come home. Broke my heart to have to tell him I wasn't coming home. It is so hard to be back in here. I will try again today to get discharged....not sure I will win. I will keep you all updated.

Congratulations to all the winners of the raffle.


Friday, September 16, 2011

Raffle Winners

Here are the winners of the raffle:

47" Plasma TV - Cindy Tsang

IPad - Jeff Baxter

Camera - Michelle Williams

2 night package at The Hilton - Micheal Basio

1yr gym membership at GoodLife - Sonia Ricco

1 pair Blue Jay tickets (thursday's game) - Andrea Wexford

1 pair Leaf tickets (season opener) - Angela Cox

$100 Gift care to Markville Spa - Cinzia Colangelo

Manicure and Pedicure at Markville Spa - Lorrisa Bevosly

$100 gift card at Black Smith Bistro - S. Mizzi

$150 gift card to Ticketmaster - Tino Solarino

$150 gift card to Ticketmaster - Vince Abbatangelo

$50 gift card to Kelsey's - Gina Bianchi

$50 gift card to Kelsey's - Lisa

$50 gift card to Boston Pizza - Connie Colangelo

$50 gift card to Boston Pizza - Daniela Bonomo

$50 gift card to Moxie - Mark Kanhai

$50 gift card to Moxie - Pam Campagne

$50 gift card to Home Depot - Sal nuimage

$50 gift card to Home Depot - Sara Wright

$50 gift card to Cadillac Fairview - Mike Colangelo

$50 gift card to Cadillac Fairview - Erica Campagne

$30 gift card to Silver City - Sliva Livia

$30 gift card to Silver City - Peter & Laura Serravalle

$25 gift card to Starbucks - Peter Petralito

$25 gift card to Starbucks - Nina Andreozzi

$20 gift card to Tim Hortons - Andrew Rutherford

$20 gift card to Tim Hortons - Martin Menezes

Congratulations to all the winners!! I will be contacting the winners within a day or so to make delivery arrangements of your prizes.

We would like to thank everyone who supported Julia in buying raffle tickets and a very special thank you to all of you who sold tickets for us.


Wednesday, September 14, 2011

Trip Of A Lifetime.........

Hi Everyone,

We're back from Disney and the trip could not have gone better. All the kids had a blast and most importantly Julia remained well. From the minute we landed we were treated like royalty. The wish foundation really does make these trips unforgettable. We had front of the line passes at the Disney parks and never had to wait in line for character greetings. All the characters knew Julia was a wish child and made it extra special for her. She got to have a private meeting with Cinderella, Princess Aurora, and Ariel. It was so emotional.....I had the first melt down of the trip! To see her so happy and excited after all she's been through and quite honestly wondering many times if we'd ever even get her there was overwhelming. We have spent many years holding Julia back and this trip was quite the opposite. We let her experience it all and looking back I can't believe we did. For those of you who know her well she is fearless and she showed us that even in Disney. She rode all the roller coasters including space mountain even though the signs clearly stated if you have any medical conditions you should not ride. She went on space mountain with Elio and Anthony and the two of them came off the ride white as ghosts and ready to vomit and then there was Julia laughing her head off and saying again, again. I took her on this wicked roller coaster at Animal Kingdom that was in a mountain, in the dark, went backwards, and had a 80 ft drop. I was so scared my heart was pounding and I looked over at Julia and she was so excited. I kept trying to hold her as once the roller coaster took off I realized it may not have been a very good idea and she kept pulling away from me telling me "mom, stop holding me". It took my stomach hours to get over the ride. She insisted on going again and there was no way I could do it again, and Elio.....well forget it he's terrified. So we convinced Anthony to go......poor kid came off crying and sick to his stomach. Again Julia wanted to go but now we were left with no one to go with her. Of course Julia said she would go alone. She begged me to let her go. So I walked her to the front of the line put her on the coaster and off she went. It was the longest 45 seconds of my life......I can't believe I let her go alone. If we let her she would have kept going and going. The bigger the coaster the more she wanted to go. I took her on the Star Wars ride.....I had to shut my eyes and thought I was going to vomit right on the ride....not my daughter (the youngest on the ride) she was front row and loving it. This kid really is fearless.

Than we boarded the lovely Disney Dream and set sail for Bahamas. The ship was beautiful and full of characters. They have this huge water slide called the Aqua Duck and of course Julia went right for it. She wasn't old enough to ride alone but she tried very hard to convince the guy she could do it alone. Anthony wouldn't go without one of us and than there was Julia who desperately wanted to ride alone. She made Elio wait in line for over an hour and they were 30 minutes late for dinner the first night because she had to get on the water slide. Julia celebrated her 6th birthday our first night on the cruise. They gave her a special cake and all sang happy birthday to her. She felt like a princess. Happy Birthday to my beautiful, strong baby girl! The cruise also made this trip very special for Julia and our family. We arrived in our rooms and there was a huge fruit and cheese and cracker tray welcoming us aboard. That night there were a selection of cookies for a bedtime snack. Than we received a royal invitation to a private party. We got there and it was our very own private party with Mickey. The kids were beside themselves. They got to spend 45 minutes with Mickey dancing and singing. There was also a professional photographer there taking pictures. Than the day in Castaway Cay (Disney's private island), we got tickets in our room for complimentary rentals and snorkeling. On the last night there was a giant signed Mickey with a card and all the pictures the photographer took at the private party. There was also 3 Disney nap snacks for the kids. Hats off to the Disney cruise line for making this a very unforgettable and special trip for our family.

We are so grateful to Children's Wish for giving us this experience. It gave us memories we will hold in our hearts forever. It made us stop and realize what we've been through and really thank god for how far we've come. There will never be another trip like this one. This trip was exactly what we all needed. One week away from the medical world. It was so nice that for 1 week we did not have to think about infusions, chemo, bloodwork, clinic appts, nothing. We were just a "normal" family on vacation. I wish it could be like that all the time. Of course you all now Julia and it would be too good to be true if it ended like this.....last night we had to rush Julia to Sick Kids for high fevers. We spent all night there and they have no idea where the fevers are coming from. We had gone to clinic Monday (remind me never to go to the hospital the day after coming home from vacation, it was a real slap in the face....welcome to reality), and her bloodwork was a little off. Her counts had dropped quite a bit from 8 days prior. I spoke with her oncologist and she wasn't sure what to make of it. Could it be something brewing or was her EBV back?? They ran the EBV test Monday and we will have results by the end of the week. She started school Tuesday (the first day since April), and when she got home became very unwell (fever, lethargic, and complaining of leg pain). Her counts had dropped even lower last night in emerge and she is now border line neutropenic...again. She will have to go back tomorrow if the fever persists for more cultures and to re check counts. Although the fever is still there she is feeling better today and more herself. As shitty as this was to happen only 2 days home I thank her for waiting till we were home to get sick. I can't imagine what we would have done if this happened while we were away.

I will post pictures of our trip once I sort through the 700 pictures we took. I haven't had much time for anything (except taking care of Julia), since being home. I will keep you all posted on Julia.

I want to thank everyone who bought raffle tickets for tomorrows draw and wish you all the best of luck. Mary will update the blog with the winners once Julia draws the tickets.


Thursday, September 1, 2011

Back from New York City

Dear Friends and Family,

I am back from NYC and the cell donation is done....thank God. Our flight got out of Pearson and surprisingly was on time. We landed in NYC and the chaos began. We arrived at Sloan Kettering (a huge facility), and met with Dr Prockop who gave us a tour of the center and explained where and what Julia would be doing when she arrives. The center is beautiful and very kid friendly. It was intimidating, overwhelming and depressing. Going through any medical challenges is scary but to do it in a foreign place so far from home away from the doctors and nurses we are comfortable with is overwhelming. After the tour she walked us to the donation room to start the cell donation. The nurses were excellent and could see that I was extremely nervous. It took 3 nurses to calm my nerves and one of them talked to me the whole process to get my mind off things. Before I knew it the donation was complete. I did however feel very light headed and tired so they made me stay in recovery a little longer and pumped me with orange juice. They wrapped my arm up so tight it was cutting off circulation. My arm did hurt for a couple days. Once I was feeling a little stronger they let me go. It was unbelievable how not even 1 minute after collecting the cells the research lab was there to pick them up.....boy things move fast! Once I was done in the donor room we went back upstairs to have a meeting with Dr Prockop. She was wonderful....patient, polite, and very compassionate. She talked about the trial in detail and the possible side effects we could see, although reassured us that she will be primarily responsible for Julia's care and will make sure everything is ok. We discussed doing as much as possible in Toronto in order to keep our expenses down......it is crazy the costs in the US....they bill for everything, even a band aid. Julia will require a PET/CT and MRI of the brain before beginning trial so we will organize that at Sick Kids prior to leaving. My cells will now take 4 weeks to grow and an extra week to run some fancy test on them once they are ready. The tricky part with Julia is that we are not just trying to match her cells but also her donor heart.....very complicated way over my head. It is the worst feeling in the world to have to hand over Julia's care to a place I don't know much about and things that are way above my understanding and pray to God that everyone knows what they are doing. We will not have our transplant team with us and it makes me extremely nervous that the doctors we are dealing with are Oncologists and BMT doctors not cardiologists. I just hope they know and remember she's a transplant kid. Sloan Kettering has never had a heart transplant kid, Julia will be there first, which makes me even more nervous.

We met with our social worker at Sloan Kettering and she was also very helpful. She managed to get us in to Ronald McDonald house for the Monday night. The house is very nice and has tons of stuff going on for the kids. They have a huge playroom for the kids, and once a week they have field trips for the house, and 3-4 nights a week different organizations sponsor a dinner for the whole house. Monday night was Hawaiian night....a big bbq and smoothies for all on the huge beautiful terrace they have. Although the house is very nice and spacious for NYC, it was so depressing. To see all the sick kids and families that are all going through a medical crisis was a little overwhelming. Although the medical issues don't ever go away sometimes I don't want to think about them all the time but at the house its right there in front of your face 24/7. I was only in NY for 2 days and I was extremely home sick.....not sure I will cope well once Julia needs to go to trial.......I so don't want to go. The city is huge, confusing and chaotic. My mom and I will be lost. And there is no Loblaws in NYC!! The grocery stores are gross compared to what we have here. At this point I am trying to keep a clear mind and keep my head above water. I will focus on Julia's wish and worry about NY when I get back.

As most of you know we are leaving on Sunday for Julia's wish to Disney. The kids are so excited I can't wait for them to have this experience. After going to NY and seeing what we're in for I am so glad we were able to get Julia to Disney before going to trial....she needs it and definitely deserves it before going through another medical journey.

Julia is at Sick Kids tomorrow for a complete check up including all her tests before leaving on her wish. I will take lots of pictures and let you all know how her wish went.